Celiac.com 01/04/2019 - The beautiful, sunshine-filled days of summertime are finally here. This means more traveling and generally getting out of the house more to enjoy the glorious warm weather.  Whether you’re traveling half-way across the country by car with your family to enjoy a week’s summer vacation, catching a flight for an overnight business trip, or just traveling around town all day on errands, it’s a given that at some point while you’re away from home you’re going to get hungry.  

You can now take advantage of a luxury that wasn’t as readily available to you even five years ago and that’s eating out on the run.  More and more chain restaurants are catering to the gluten-free diet.  But if you’re running kids to swimming lessons and baseball practice, plus you have to stop out for groceries, pick up a gift for a birthday party, and stop in to see a sick friend, you may not have time (or the finances) to eat out all the time.  Besides, when you eat out, portion size generally goes up while nutrition goes down. Keep reading to find out how to eat healthier by bringing along some of your own foods when you’re away from home.

Starting with your daily routine, whether you’re sitting at a desk at an office, on the road making sales calls, or carting the kids to and from their activities, when lunchtime hits, be prepared.  Some quick and easy foods to pack for lunch can include wraps made on rice or corn tortillas, and all kinds of salads, cubes of lean and low-sodium lunch meat and cheese with gluten-free crackers, or a slice (or two or three!) of gluten-free veggie pizza.  

When your tummy reminds you in the late afternoon that it’s been awhile since you’ve fed it anything, be prepared by having some snacks tucked away in a bag that you brought along.  Even snacks can be nutritious and add to your daily fiber count.  If you have a small cooler or insulated bag, tuck some yogurt cups, cottage cheese snack packs, or veggies and a low fat dip into the bag along with a frozen ice pack to keep foods cold.  Hummus with gluten-free pita bread, flat bread, or crackers makes a good snack, or pack some salsa with low salt tortilla chips.  If you want a “munchie” type of snack, spoon some trail mix into a small self-seal bag; add some dried, seasoned soybeans for extra nutrition but don’t add any chocolate pieces because they could melt if the sun hits the bag.  Fresh fruit (apples, pears, bananas) are super easy to take along or you can cut up melons, kiwi, and pineapple to take in a plastic container along with a plastic fork; toss in some berries for color and extra fiber, vitamin C, and antioxidants.  Air-popped popcorn is another good option, especially if you add almonds and dried cranberries to the popcorn.  Natural fruit leathers always taste good and they’re easy to pack.  Or pack a self-seal snack bag with a nutritious, gluten-free dry cereal, tossing in some dried sunflower or pumpkins seeds.

Choose foods that not only travel well but provide as much nutrition as possible.  Peanut butter and gluten-free crackers is a healthier choice than a bag of gluten-free pretzels.  A small bag of sunflower seeds with dried cranberries is a better option than a small bag of M & M’s.  

If you’re heading for an airport, don’t assume you can buy food there or that a meal on the plane will be gluten-free.  Not many flights offer meals anymore, but even if you are served a gluten-free meal… beware.  The FDA issued a report on the sanitary conditions at the facilities of the three largest caterers providing food to airlines: LSG Sky Chefs, Gate Gourmet, and Flying Food Group.   These three companies provide more than 100 million sky meals annually to all the big airlines including Delta, American, United, US Airways and Continental.  The report states that “Many meals served to passengers on major airlines are prepared in unsanitary and unsafe conditions...” Included in the list of infractions are:  1) Unclean equipment, 2) Workers who practice poor hygiene, and 3) At some facilities, the presence of live cockroaches, flies, and mice.  Add to this that the people who make up the meals probably have very little knowledge about cross contamination issues with gluten-free foods.   Whether you’re on a gluten-free diet or not, you may seriously want to consider carrying your own food with you when flying.

If you’re taking your own food on the plane, be aware of airport security rules.  You can’t take any drinks through security; you’ll have to buy drinks once you have gone through the scanners.   Depending on your departure airport and the security team on duty that day, butter and peanut butter are considered gels and  may or may not be confiscated at the security check point.  

A little extra thought has to go into how you pack foods being taken into planes.  Tupperware and plastic containers are great except that cabin pressure changes can cause the seal to leak.  Self-seal plastic bags are ideal, just remember to squeeze out as much air as possible before sealing the bags.  If you have a large purse, put an ice pack into a small tote bag, add the packed food containers to the bag, then squeeze the tote bag into your purse (or briefcase).  Back packs also work for packing foods.  If you’re going on a long trip and need to take larger amounts of food with you, you can find soft-sided ice chests that have wheels and a handle or you can even use a small carry-on suitcase with wheels, or even think about shipping dried foods ahead of your arrival.  If you need foods for your return trip, be sure to pack non-perishable items.  It wouldn’t hurt to put a large sticker on your backpack, suitcase or ice chest that reads, “CELIAC”.  Finally, to be on the safe side, take a note along from your doctor that states both your diagnosis and the need for your special diet.
  
If you’re driving across America’s highways, you have more flexibility when packing foods because you can pack a cooler and probably have access to a microwave at the rest stops.  You’ll still want foods that are easy to hold and easy to eat.  Some one-handed snacks include celery sticks filled with cream cheese or peanut butter, gluten-free protein bars, homemade muffins, dry cereal, hard boiled eggs, and let’s not forget cookies.  If you take cookies, think about baking some that have nuts, uncontaminated oats, or some of the healthier alternative flours instead of the marshmallow-chocolaty-caramel-gooey kind that have almost no redeeming nutritional value.  If you remember to pack a plastic spoon, individual containers of applesauce and/or diced fruits with peel-off lids are very convenient to have in the car.  Individual cans of tuna with the small packets of mayonnaise are good with gluten-free crackers or bread to make a sandwich.  A marinated bean salad will hold for several days in a cooler, as will veggie gluten-free pasta salads or wild rice salads.  Assuming that rest stops will have a microwave available, there’s a large variety of gluten-free individual food packets you can pack like Thai Kitchen rice noodles, flavored or unflavored uncontaminated oatmeal packets, soup containers with tear-off lids… or pack some baked beans with cooked sausage slices in a plastic container; add a side of gluten-free cornbread and a drink and you’ve got a great lunch.  Cooked chicken wings can be eaten cold but remember to take plenty of extra napkins along.  Then there’s always the time-honored staple box of raisins.

Don’t let this disease keep you from getting out of the house.   There are always viable options of foods to take along when you’re away from home. 

Granola Bars by Connie Sarros

Loaded with fiber, these bars stay fresh for several days.

Ingredients:

• 2/3 cup vegetable oil
• ½ cup brown sugar
• ½ cup light corn syrup
• 2 teaspoons vanilla
• ¼ cup gluten-free flour mixture
• 3 cups uncontaminated oats
• ½ cup shredded coconut
• ½ cup sunflower seeds
• ½ cup sesame seeds
• ½ cup chopped pecans
• 1/3 cup chopped dark chocolate
• 1/3 cup raisins

Directions:
Preheat oven to 350 degrees.  Spray a 9 x 13 inch pan with nonstick spray.  In a large bowl, use a rubber spatula to blend the oil, brown sugar, corn syrup, and vanilla.  Stir in the flour mixture and oats until blended.  Add the coconut, sunflower seeds, sesame seeds, pecans, chocolate, and raisins.  Stir until evenly blended.  Spoon mixture into the baking pan, smoothing the top with wet fingers.  Bake for 30 minutes or until top is golden.  Allow granola to cool completely before cutting into bars.  Yield:  48 bars.

Celiac.com 12/29/2018 - Imbalance and clumsiness may not be the most common symptom of the nervous system related to gluten intolerance but one of the most researched areas. Physicians use the term “ataxia” to describe poor coordination and balance. It can affect your walking and your ability to stand. While many systems contribute to your balance your cerebellum in the brain is the location that organizes all of the information and navigates your movements precisely.

Some doctors claim that ataxia is one of the most common disorders produced by gluten in relationship to our nervous system. Poor coordination and clumsiness does occur with gluten intolerance and affects children as well as adults. Evidence suggests that this is all due to the immune system’s reaction to gluten itself. In people who are genetically at-risk for gluten sensitivity, gluten induces an immune attack against the protein gliadin and this antibody not only attacks gliadin in the gut but also attacks tissues far away from the intestines. In this case, through the bloodstream, these antibodies travel to the cerebellum and attack the Purkinje cells. As these cells become inflamed from the immune attack, the ability to integrate all the “balance information” is impaired, and coordination suffers. Symptoms like poor balance and coordination can result.

A study in Britain examined 224 people with ataxia disorders. Some had an inherited disorder of ataxia, some had ataxia combined with other neurologic symptoms, and some simply had ataxia without known cause. Of those that were without known cause, 41 percent were found to have anti-gliadin antibodies supporting gluten sensitivity as a cause. In another study, ten patients with headaches and/or clumsiness were placed on a gluten-free diet. Over time, nine of the ten showed a beneficial response in all symptoms. The evidence is overwhelming. The presence of gluten antibodies, shrinkage of the cerebellum and the dramatic response to dietary change all support gluten as the cause.

Celiac.com 12/22/2018 - “Out I say. One, two, why then `tis time to do`t - Hell is murky!” Never considered myself Lady Macbeth, but I have had blood on my hands and sometimes screamed, ``Out all you damned itchy spots` in pure frustration. My story of being a celiac with dermatitis herpetiformis is one that nightmares are made of. Sit tight and you will see what I mean!

My medical journey has been full of misadventures. My brother has often jokingly said, “M.D. does not stand for “Medical Divinity” and he is so right. I was misdiagnosed in my twenties as having irritable bowel disease after a busy specialist undertook to do a colonoscopy for me in between his regular patients and during my lunch hour working as a nurse. I took his word for it and rid myself of irritating foods like steaks and corn and cruciferous vegetables. I was preparing barbecues for my family, eliminating the meat and eating the hamburger bun.

I was a busy nurse and active jogger. I loved hiking and canoeing. The medication I was given for my so called ‘irritable bowel’ was not working. One physician told me that when a physician does not know what is wrong with a patient’s gastro-intestinal bowel problems the all encompassing term ‘irritable bowel’ is often used. If the patient comes back again and again the label ‘depression’ is tacked onto her chart. Not all physicians are as blasé as the ones I have had to deal with, but I do warn you to be careful and check everything. I am writing this from the other side, and I have seen so many things that would ‘knock your socks off!’

Throughout my thirties I jogged early in the morning before my shift; often jogging off into the bushes, Kleenex in hand, hoping and praying no-one was around to see me taking a bathroom break. Those of you suffering from loose bowels because of ingesting gluten know only too well what I am talking about! We went out to our favourite Chinese Restaurant, time and time again only to make a “pit stop” at the nearby soccer pitch so I could retch up our dollars on the turf. I still received the same diagnosis, the same medication. Normally I weighed 100 pounds in those days and on a five foot one and a half frame my weight was not bad. (Heavy on the ½ inch!)   Slowly my weight declined. Stress I was told - yet another diagnosis. 

Slowly I was limiting my foods to yogurts and sandwiches. Throughout my forties my problems exacerbated until the November before my daughter’s wedding. Like an explosion I had spots all over the back of my head, upper arms and thighs. Oh I itched, but when I scratched the tops off the sores they stung and hurt. It was hard to work as a nurse scratching your head. I am surprised that someone did not whisper a word to a doctor to have me checked for fleas. Fleas I thought and bought a bottle of Kwellada and dosed not only myself but my husband with it! The bedding was almost boiled, our nails soaked in Pinesol. All was to no avail. I was referred to an allergist whose nurse dealt with me more than he did. He rushed into the room, did not check my sores at all but suggested bed bugs. Agghh! Being a neat freak everything had to go except my husband! 

The November prior to my daughter’s wedding, and near the end of my forties, I was an itching bleeding mess. Of course I had a sandwich every day for lunch and found that I itched far more in the afternoon. My white nurse’s stockings were covered in blood at the back and on the way home from work my therapy was scraping a comb through my scalp and tearing all the spots apart. 

Immediately I arrived home my husband knew I would rush upstairs and grab a cool shower for the second time that day. The last Saturday in November after itching my way through trying on wedding dresses; can you imagine? Beautiful shop and conceited sales clerks looking askance at my legs. I had reached the end of my itching rope. 

The other physician in the two physician practice I attended was on Saturday call and I walked in. He examined my spots, actually looked at my scalp, asked me some very relevant questions about my condition, exited the examining room  and came back with his Dorland’s Medical Dictionary, the guidebook for all doctors. Dermatitis herpetiformis, he shouted. “I am almost convinced of it.” He prescribed two to four Atarax for the itch, and four Prednisone - along with the specific instruction that I follow up with my family physician, his partner, on the following Tuesday. 

To be sure I was in that office immediately after work on Tuesday, scratching my head and rubbing my legs together as if to start a fire right there in his office! I indicated that I had seen his partner on Saturday, spouting my instructions. “Stress” he said. He didn’t seem to have even read the notes written by his partner. I was prescribed Loxapine, four Atarax, six Prednisone, and instructions to follow-up in one week. 

This is where I should tell you about Loxapine. It is a drug, often given to sedate the elderly in nursing homes. Very few hospitals prescribe it anymore because of its dangerous side effects. Most medical manuals will warn against prescribing it to peri-menopausal women of low weight, and a lot even warn against giving it to women at all. It also indicates not to prescribe it for longer than three months and to monitor it closely for signs of tardive dyskinesia. (I probably now know as much about this horrible side effect as any medical physician). One thing that the Medico-Legal Handbook of the Canadian Physicians states is that when prescribing a drug not designed for the condition it is being used to treat, the physician must list all the possible side effects of that drug. I can say with all honesty that if I had known of the possible long term side effect of tardive dyskinesia I would have asked if there were any other drugs for “itchy spots” without the significant risk of not only a disfiguring condition on the outside of my body but what it could do to my internal physiology. Don’t forget, I had not yet been referred to a dermatologist who would take the time to take a biopsy of these spots! Consider that I was driving thirty-miles a day to work on this sedating drug, along with the Atarax and Prednisone. I am amazed that I did not add to this cocktail of drugs a drink or two of my own, but thankfully not being a drinking person I persisted staying awake, scratching during the night and keeping my husband awake!

The wedding in January went off without a hitch. This is surprising since my daughter seemed to think I was the wedding planner extraordinaire. At our March visit my husband came in with me, both gun barrels loaded. “Why hasn’t my wife been referred to a dermatologist? Why is her mouth turning and her speech slurred, her hands trembling and her head turning?”   

I had “DH” without the “D”. 

My physician seemed to wake up.”‘Whoa, how long has she been twisting her mouth like that? She has to go off Loxapine right away. That is one of the side effects of that drug.” 

I saw the dermatologist the next week! He asked a barrel of questions but told me that since I was now up to ten Prednisone a day. I would have to wait two months in order to be weaned off that drug so he could biopsy the dreadful spots which seemed to have a life of their own. They marched in a line like soldiers and I was scarred where healed spots had been. My weight was now 89 pounds and my stomach muscles were as tired as I was from retching into any available toilet.

After the three months were up biopsies were taken and I received a lesson about IgA deposits. I was told that in the ‘olden days’ one way of telling if a person had dermatitis herpetiformis was to put a few drops of Iodine close to an area of the lesions. Within a few days some more spots would appear, because apparently these DH spots are present under the skin and show their ugly itchy selves with Iodine. Did I try it? Of course I did!   My test results were positive, silly person that I was, but thankfully the hospital laboratory results were also positive. 

To be thorough the dermatologist wanted me to have a bowel biopsy. Unfortunately the first gastroenterologist failed to biopsy the Jejunum part of the bowel. I had by this time searched the Internet for myself. (Oh why hadn’t I done it sooner with the Loxapine?!!) I knew about flattened villi and had started following a semi-gluten free diet. 

Somewhat deflated and now struggling with patients being unable to understand my speech, not being able to draw up a needle or even, when assigned to a corner to write up charts my once beautiful writing was illegible. I am surprised I was not breathalysed. Thankfully my work ethic was such that I was more to be pitied. I was referred to another gastroenterologist who did biopsy the jejunum part of the bowel and the results came back positive for celiac disease. Anyone of you who has undergone these tests knows that they are exceedingly unpleasant. Yet I was happy because I was vindicated. 

The dermatologist placed me on the drug Dapsone - four a day for the first week with follow-up in one week. I arrived back at his office with flowers, not in my head, in a bunch in my hands; I was ecstatic! The spots were almost gone, just some residual spots at the back of my head. I was immediately put on a gluten free diet. I was officially a celiac with dermatitis herpetiformis. The dermatologist told me that I had a severe case and it was unlikely that I would ever be able to go off Dapsone. It would be my partner for life. 

But I did not know how difficult the diet can be when you are a novice. He referred me to one of the top internists in B.C. who, of course, agreed with his diagnosis but also told me how to rid myself of residual stubborn “spots” at the back of my scalp. ‘Do the 5-4-3-2-1- regime with Prednisone and Dapsone and this should clear up the rest of the spots. {**You can also do this with outbreaks I was told**} Read that sentence in brackets with stars, hold the thought but ignore the instructions.

Now I had another monster to deal with, far more ferocious than the DH. I was referred to the Movement Disorder Clinic at U.B.C., a Clinic I still attend to this day. I sat with Parkinson patients as well as multiple sclerosis patients and was quite terrified about my prognosis. I was assessed by the very head of the clinic who was quite angry that a “young woman” of my age was administered Loxapine for “spots” when there are so many other medications on the market one can be given for itchy spots, and before a referral to a dermatologist. It was suggested I be placed on Tetrabenazine, a drug not even approved in the United States, and a drug with a possible list of side effects that petrified me. I walked out with a compilation of literature on the drug, but without a prescription, saying I would think about it and be back in two weeks. 

We read every article we could get our hands on about this drug.  I was not going to risk going on any neuroleptic drug. I loved my job and had to say a very tearful good-bye to it fifteen years earlier than planned. Having tardive dyskinesia I was clutzy, falling down stairs, not lifting my leg high enough to rise to the sidewalk, having my head turn to the left while sitting at a stop sign and having to wait until it returned voluntarily to full frontal position. 

I thank God that I had a medical insurance package in place which I had been paying into for years. I became a poster woman for medical insurance policies and instructed everyone I knew to become fully knowledgeable about any drug they were taking, to ask questions before popping any pill into their mouth. I returned in two weeks. It was not only hard for me to look in the mirror to see my facial gesticulations it drove my husband to tears watching me.   Tests had shown that the drug damage had attacked me primarily on my right side, my right lung, oesophagus, and right hand more than left. Both eyebrows seemed to move up and down of their own volition though, as did my forehead. Speaking of head, my head was like one of these wooden dolls that are worked from inside. It turned to the left when it wanted to. 

My TMJ (temporomandibular joints) grabbed like a snapping turtle, and my dentist had a very difficult time even assessing my teeth for splints. I eventually cracked a lot of my teeth and eventually had to be assessed by an ENT (ear/nose and throat specialist) who injected Botox into my oesophagus to ease the oesophageal stricture so that I could swallow foods. 

I fell, down a particularly steep slope at our trailer at Birch Bay, landing right on my head and breaking three ribs. I struggled with pain in my right forehead, right neck and right shoulder. My physician taught my husband to administer Lidocaine injections into the back of my neck at the hairline and into my shoulder muscle. This actually stopped the pain for a while, but why could they not figure out what was causing it? 

I made trips to an acupuncturist, a kinesiologist, and a physiotherapist. They were all convinced they had the answer. People at the pain clinic at St. Paul’s Hospital convinced me that it was connected to the brain and the tardive dyskinesia damage but all they had to offer me was drugs and even marijuana cookies. It is hard to make marijuana cookies without flour and they really stink up your kitchen. Since my husband made them for me he ended up getting high and did not enjoy the experience. Come to think of it, neither did I.

People at the U.B.C. Movement Disorder Clinic convinced me that I had dystonia on the upper right part of my body. An impairment of the muscular tonus I was told, and “wow” there was a specialist at the Vancouver Hospital who was doing wonders with this problem. It involved drilling two holes in the top of the head, while you are awake, but with freezing around the area, inserting leads down into a box placed in the stomach. To say this was unpleasant puts it mildly. When my husband saw me prior to surgery with this helmet screwed to my forehead he cried. 

When they turned the machine on I received electric shocks down my arms. We tried this numerous times. Both the doctor and his assistant thought I was just saying this because I did not like the appearance of the holes in my head or the leads down my chest or the box in my stomach. We did blind studies where my husband would not tell me when he turned the “box” on. To no avail! I would have done anything to rid myself of yet another dreaded pain! I needed to see an internist and two psychiatrists in order to have the box and leads removed from my body. I passed the psychiatric tests to my amazement and the box and I parted company.

I was then seen by another pain clinic specialist who felt I had a trapped nerve from the fall. When you fall on your head, a heavy object, it can trap a nerve in the neck, particularly at the C1/2 level. His test proved positive and he referred me to one of only two anaesthesiologists in B.C. who do the procedure called radio frequency lesioning. I had the first surgery last September. Because of my weight, which was now only 82 pounds, he felt he should not turn the machine up to the highest setting.  They call this pulse radio frequency lesioning. Now aren’t you learning a lot from this article about celiac disease and dermatitis herpetiformis?  

I was wrapped in ice for two months but sadly the procedure failed. I was told that it needed to be turned to the highest setting.  January 4th the procedure was repeated. The insertion of a needle into the spine while one is awake is also unpleasant needless to say, but I was desperate. I was again packed in ice until February when life began to look pretty good. Wow! Clothes did not fit me and there was a whole world of shopping out there to do! I had become slothful with my celiac diet, licking envelopes when I knew the glue contained flour, baking goodies for my family and sifting flour of all things. 

To counteract the appearance of DH spots in my scalp, horrid armies of them, I did the 5-4-3-2-1 treatment. However, I had been using Lidocaine injections for the pain in my neck. I found I could not climb stairs without becoming breathless.  I was confused and weak.  “Likely from two surgeries” I told myself. 

My husband commented that my skin was grey and my lips blue. I attended my general physician - another one. Oh my, I dread even telling you this! He thought I might have sleep apnoea. My husband picked up the machine for the test for two days. He dropped it off at 10:15 A.M. and by noon hour the oxygen people were back at our house with an oxygen tank. I was told my GP was going to refer me urgently to an internist. I dragged the lead of this oxygen tank around with me for a week until my husband became angry. He went himself to see my GP who went “next door” in his building to the Internist who saw me the next day, Saturday. 

Upon taking my history she suspected that I had Methemoglobinemia and suggested we both walk over to the hospital next door right away. 

I was put in the I.C.U. and given oxygen. After numerous blood tests were taken my Methemoglobinemia results came back at 26.5. Death occurs at 40 which could have been within a week to ten days. I was given methylene blue. It was flushed through my veins and it burned like a hot iron! I was given two units of packed red cells. 

For you celiacs with dermatitis herpetiformis, methemoglobinemia is when the blood is converted to another chemical that cannot deliver oxygen to tissues, called Methemoglobin. It was explained to me that it was like all the oxygen in my blood was put in a closet with the door locked. They took me off my beloved Dapsone but after three days the spots were back and as bad as when I was first diagnosed, all over my arms and legs, scalp and even face. 

So I was put back on the Dapsone with strict instructions not to use Lidocaine, and given a list of other drugs and foods that can cause Methemoglobinemia, like Benzocaine and Prilocaine, and even some cold cuts with nitrates in them.

Upon discharge we were fearful that this would happen again so my husband purchased a mini SAT (oxygen saturation) machine from a medical store that sells on the Internet. It is the cutest little machine! You stick your finger into its jaw and it tells your SAT level as well as your pulse rate. For just $39.99 you cannot beat it.

March was our anniversary and our children felt we needed to celebrate. They bought one of these mid-week packages to the Harrison Hot Springs Hotel, with dinners included. We do not go out for meals because I am embarrassed at the inquisition I have to give the waitress each time. We were reassured the first night that there was no gluten in my meal - none whatsoever. Ha! I was up all night! You know the drill. By noon hour the next day I was so sick and my SAT levels kept dropping. A normal SAT level should be about 98, mine is normally 92, but it went from 92, to 87 to 83 until my husband said, “Let’s go”.  

We drove home to our hospital. Doctors there are now familiar with my problem. But this time I had pneumonia and other abnormal blood levels. It turned out that I had the type of pneumonia that is caused by swallowing food into the lungs. That was from all the vomiting I had done the previous night of course. I was admitted to hospital for eight days this time. That ended in April.

I am now able to take Dapsone, but in conjunction with Cimetidine, which is actually a drug for gastritis or ulcers. I still check my SAT level weekly and have been told if it drops below 90 I am to go to the hospital for testing. I am fearful of restaurants because so much of their food products come in large tins and they don’t know what ingredients are in them. When I find a restaurant I can trust, I telephone the Vancouver chapter of the Canadian Celiac Association and tell them. 

There are two stores I know that sell gluten free foods and even a bakery in Vancouver close to where my daughter works, but mostly I make my own gluten free recipes. The hospital dietician had so little information on celiac disease and recipes she asked me to fax her some of my information and recipes. I have become the “Betty Crocker” of celiac food and the “know” person for DH, trapped nerves and a barrage of diseases and problems that I did not have.

Health nightmares? I have had enough and want to get back to my garden and my love of writing. I deserve it!

Celiac.com 12/21/2018 - For most celiac patients, treatment with the gluten-free diet marks the turning point for their health. It can take a few months for the villi of the small intestine to heal, but eventually the villi are able to absorb the nutrients in their food and the symptoms of celiac disease are alleviated. Unfortunately, there are some celiacs who don’t respond to the gluten-free diet. This is the only current treatment for the disease, resulting in a condition known as refractory celiac disease or nonresponsive celiac disease (NRCD). Although celiac experts have stated that actual refractory celiac disease, wherein damage to the small intestine is irreversible, is rare, a preliminary study reported by Med Page Today suggests that the condition is more common than the medical community once thought. Fortunately, the study also showed that refractory celiac disease patients did respond favorably to medical treatment.

Celiac disease, an autoimmune disease caused by gluten, a protein found in wheat, barley, and rye, affects three million Americans, or about 1% of the U.S. population. Patients with refractory celiac disease experience abdominal pain, severe malabsorption of nutrients, and intestinal damage. A single-center preliminary study suggests that “more patients with celiac disease may stop responding to their gluten-free diets,” as reported by Med Page Today.  

The researchers studied non-responsive celiac patients treated at the University of Virginia Medical Center over the past decade. According to Med Page Today, “Overall, patients were diagnosed with refractive disease a mean of 4.7 years following their initial diagnosis of celiac disease.” Furthermore, diagnoses of refractory celiac seemed to occur more recently, mostly within the last five years and almost half of them within the last six months. The researchers, including Christopher Hammerle, MD, and Sheila Crowe, MD, of the University of Virginia in Charlottesville, found that the refractory celiac disease patients did respond to treatment with thiopurines.

“These agents are my treatment-of-choice for refractory celiac disease to avoid long-term steroids,” Hammerle told MedPage Today.

According to Shailaja Jamma, MD, and Daniel Leffler, MD, MS, in Real Life with Celiac Disease, there could be many explanations for a failure to respond favorably to the gluten-free diet.  In their chapter on NRCD, they write, “you would need to be on a GFD for at least 6 months without significant improvement before we would decide that you were not responding and look for other reasons.” This is due to the fact that recovery times vary from person to person, and as long as patient seems to be improving continually over time, no matter the speed, non-responsive celiac disease is usually an unnecessary label. 

Jamma and Leffler found that the most common causes—designated “very common’—are gluten exposure and Irritable Bowel Syndrome (IBS). The next most common causes of NRCD, labeled as “somewhat common,” are lactose intolerance or fructose malabsorption, microscopic colitis, and small intestinal bacterial overgrowth. “Rare” causes include actual refractory celiac disease, which can be confirmed with a biopsy of the small intestine, an eating disorder, inflammatory bowel disease, which can also be confirmed with a biopsy as well as imaging studies of the small or large intestine, pancreatic exocrine insufficiency, and motility disturbances, that is, when food moves too quickly or too slowly through the intestine. Finally, food allergy and cancer are “very rare” causes of NCRD.   
 
According to the Mayo Clinic, as reported by Celiac.com, “gluten contamination is the leading reason for non-responsive celiac disease,” and estimates that 18% of non-responsive celiac disease cases are due to actual refractory celiac disease. The Mayo Clinic researchers recommend that before making a refractory celiac disease diagnosis, additional diseases as well as gluten contamination should be ruled out as causes. According to Jamma and Leffler, “The first step is often to get confirmation that you do indeed have celiac disease,” since “celiac disease can be mistakenly diagnosed when the true problem is something else.”

Med Page Today points out that most of the patients with refractory celiac disease responded favorably to a thiopurine medication rather than the conventional method of treatment for the condition, steroids. This form of treatment doesn’t carry with it the risk of steroid dependence. 

If you have some concerns regarding your response to the gluten-free diet, it’s recommended that you talk with your doctor about a non-responsive celiac disease evaluation. An evaluation of your diet may very well confirm that you are still ingesting gluten, but if this isn’t the case, other causes can be explored by your doctor. Thiopurine seems promising as a treatment option for those who do, in fact, have actual refractory disease.

Resources:
1. About.com: Refractory (Unresponsive) Celiac Disease
2. Celiac.com: Causes of Non-responsive Celiac Disease - More than 50% Continue to Ingest Gluten Unknowingly.
3. Jamma, Shailaja, MD, and Leffler, Daniel A, MD. “Nonresponsive Celiac Disease.” Real Life with Celiac Disease: AGA Press, 2010.
4. Medpage Today: ACG: More Celiac Disease May Be Refractory 

Celiac.com 12/08/2018 - Recently CNN published an article entitled “Will a Gluten Free Diet Improve Your Health?” Honestly there were a lot of plus-points to this article. But unfortunately the negatives could very well outweigh them if you’re considering, or are new to, the gluten-free diet.

Let’s review the positives and negatives as they appear in the article:
1. Dr Leffler from Harvard Medical School was quoted as saying that: “Gluten is fairly indigestible in all people.” “There’s probably some kind of gluten intolerance in all of us.” 

Bravo! I was very excited to read this remark.  Although I often promote this information, I haven’t heard it from others aside from Dr. Fasano. The fact that humans can’t properly digest gluten is an important truth that should be better known and more widely taught. 

2. Experts now believe that celiac disease represents just one extreme of a broad spectrum of gluten intolerance that includes millions of people.

It can sometimes be interesting when unnamed “experts” are quoted, but in this case I agree. I’ve often written about my belief that celiac disease to gluten sensitivity is likely one spectrum. The fact that those with gluten sensitivity don’t undergo the outright destruction of the small intestine as in the case of celiac disease, in no way puts gluten sensitivity in a less serious category. It’s a “different” reaction but no less serious.

3. They go on to state that people with celiac disease and gluten sensitivity usually have stomach aches, gas, and diarrhea -- as do people with IBS. 
“Usually” is not the case and it would give someone without digestive complaints a false sense that they do not have gluten intolerance. In fact, according to research, for every person with celiac disease who experiences digestive symptoms, there are eight without digestive complaints. 

This is why, all too often, people continue to live with migraines, depression, infertility, skin problems, obesity and autoimmune disease that is gluten related but the gluten connection remains undiagnosed because they have no digestive complaints. 
Let’s not kid ourselves. We’re only diagnosing, at best, seven percent of the celiacs in our country. In our medically advanced society, missing over ninety percent of those suffering with the most common lifelong disorder in the US and Europe, is beyond pitiful. 

Unfortunately, it is statements such as the above, limiting our focus to digestive complaints that are partly to blame for our poor rate of diagnosis.

4. Gluten sensitivity, on the other hand, is a gray area that “lacks any defining medical tests,” Leffler says. People who fall into this group exhibit the classic symptoms of celiac disease yet have no detectable intestinal damage, and test negative for certain key antibodies (though in some cases they may have elevated levels of others).

The issue here might be “medical tests” and Dr. Leffler may not know about the gluten sensitivity tests that are available. However, they are available and they have recently taken a nice jump in sensitivity due to a new lab in the US (Cyrex Labs – again, I have no affiliation with this lab).
I also take umbrage to the reference to the lab tests as almost an afterthought in parentheses. The truth lies within those parentheses – gluten sensitive individuals do show elevation of key antibodies that are different than those seen in celiac disease. 
Does that make those elevations somehow less important?  Of course not! They are just different.

5. “A recent study by Fasano and his colleagues offers some clues about what gluten sensitivity is, and how it differs from celiac disease. Although they show no signs of erosion or other damage, the study found, the intestines of gluten-sensitive patients contain proteins that contribute to a harmful immune response, one that resembles -- but is distinct from -- the process underlying celiac disease. “

This is a very good point. First, Dr Fasano is spending his time researching gluten sensitivity. This is not something we would have seen several years ago. 

His latest research showed that the immune system DOES create a harmful immune response in the intestines of those suffering from gluten sensitivity. Is it the same response as that seen in celiacs? No. But we didn’t expect that it would be. We know that small intestinal erosion doesn’t happen in the gluten sensitive patient.

What’s earth shattering about this research finding is that it completely validates what I and other clinicians like me have been saying for several years – gluten sensitivity is the adverse effect of the body’s immune system having a deleterious reaction to gluten. This research proves that point.

6. “Recommendations for people with gluten sensitivity aren’t as clear-cut. Unlike celiac disease, gluten sensitivity hasn’t been linked to intestine damage and long-term health problems, so some experts say that people on the less severe end of the spectrum should feel comfortable eating as much gluten as they can handle without feeling sick.”

Ah, so easy to write, so hard to take back or explain. This is a dangerous couple of sentences. Let’s dissect: They join “intestine damage” with “long-term health problems” as if it were impossible to have a long-term health problem without intestinal damage. Nothing could be further from the truth!

I have many, many patients with gluten sensitivity, and therefore none of the intestinal destruction seen with celiac disease, who would beg to differ as regards long-term health problems being associated with gluten sensitivity, not just celiac disease. These patients have seen their serious long-term health problems resolve as a result of eliminating gluten from their diet. And they did not have celiac disease.

 Is schizophrenia a health problem? What about migraines?  How about eczema? Is infertility a health problem when you’re trying to get pregnant? What about depression?  

I could go on and on.  And it’s not just my opinion or my patients’ opinions. This is very well substantiated by research. You cannot “feel” damage and inflammation to certain organs of your body. In fact, autoimmune disease markers can be present for well over a decade before the first symptoms show themselves. Should we wait?  Is that smart?

Let’s continue: In the last sentence of point #6 above, we come across those unnamed “experts” I was referring to earlier. I would really like to know names on this one. Perhaps they were misquoted, or misunderstood. The truth of the matter is that gluten is not called the “great masquerader” because it creates overt symptoms all the time, quite the contrary. That is why one never is quite sure what symptoms will improve until one actually embarks on a gluten-free diet.  In fact it was this realization that caused us to write the book “The Gluten Effect” two years ago. There was little appreciation at that time of all the effects that gluten could create in the non-celiac individual, which is why we were compelled to share our experiences.

7. “Some people can be exquisitely sensitive and have to be as strict as people with celiac disease, while others can eat a pizza,” Fasano says. [he was referring to gluten sensitivity]

You might imagine that a newly diagnosed individual might very well read this sentence and be keeping their fingers crossed that they might be one of the lucky ones who could eat the pizza. 

I am a huge fan of Dr. Fasano’s and to give this quote the benefit of the doubt I’m going to give you my interpretation. I have patients who have gone out and eaten pizza and “felt fine”. In fact they seemed to feel so “fine” that they did it again.  

Did they ultimately end up fine? No, they did not. They found themselves days, weeks or months later quite ill, not only with old symptoms returning but often with new ones as well.

What, then, could Dr. Fasano have meant by his comment? I believe that he was trying to make a point about the difference between a celiac and a person with gluten sensitivity. A celiac could have a miniscule amount of a crouton drop into their salad and be very ill almost immediately, while a person with gluten sensitivity would not necessarily have such an acute reaction. But to take that to mean that it is in some way “fine” or healthy for them to eat gluten is definitely not the case and I don’t believe that’s what Dr. Fasano meant.

8. “If you suspect your body can’t tolerate gluten, the first thing you should do is get tested for celiac disease. If the test comes back negative, try a gluten-free diet for a week to see if you feel better, Leffler says.” 
The cells in the intestine take about a month to turn over and renew themselves. A week on a gluten-free diet is not sufficient, in the main, to determine whether one has a problem. A month of absolutely no gluten is a more appropriate standard. With that said, some people do feel better almost immediately but I wouldn’t want to miss those who take several weeks to feel the change by not pointing out the 30 day recommendation.

9. Finally, ending on an up note: “People with gluten sensitivity who don’t respond this way [meaning feeling ill immediately] aren’t necessarily in the clear, however. Experts like Marlisa Brown, a registered dietitian and author worry that gluten could have long-term negative consequences that just haven’t been identified yet.”

As we’ve been discussing many of the consequences are known and they are serious. But I do agree with her that just because you don’t feel sick right away is no reason to eat gluten when you are sensitive to it.
I hope this helps clarify this recent article and gives you and those you care about the support you need to continue your gluten-free lifestyle. It is worth it, I promise!

References:

1. www.CyrexLabs.com
2. www.Enterolab.com
3. Alimentary Pharmacology & Therapeutics. 2009 Jun 15;29(12):1299-308. Epub   2009 Mar 3.

Celiac.com 12/07/2018 - What do hypertension, obesity, smoking and celiac disease have in common? They’re all important risk factors for coronary heart disease (CHD), a disease that kills more than a half a million people annually in the U.S. alone.(1) Based on emerging research, celiac disease may be a major contributor to heart disease in the Western world –making celiac disease an even greater public health threat than is currently understood. 

CHD and Celiac Disease: A Brief History
The connection between CHD and celiac disease has a 35-year history. It began with a 1976 study conducted by Southampton University Hospital researchers, who found that there was an “… apparent protective effect of coeliac disease on CHD risk which “…might result from malabsorption of dietary lipids.”(2) However, this study had a number of significant flaws including a small sample size of only seventy seven.  The most significant confounder in this study was the mortality rate of young subjects, which precluded them from the privilege of living long enough to develop CHD. Additionally, our understanding of CHD has undergone a paradigm shift since the low-fat 1970’s. CHD is not the result of excess dietary fat consumption, but instead is a manifestation of prolonged inflammation.(3)

Based on this study and two others published around the same time period which found no link between CHD and celiac disease, researchers largely stopped investigating the heart health of people with celiac disease. The assumption was that celiac disease provided protection or, at the very least, was benign in terms of CHD risk. 

Then came a paper published in the July 2003 Archives of Internal Medicine which reported that celiac disease patients had a sixty percent increased risk of CHD death.(4) More recently, in a January 2011 Circulation paper, Swedish researchers published eye-catching results from an investigation of more than 15,000 individuals with celiac disease.(5)

The key finding from this research was an approximately twenty percent increased risk of CHD death in people with celiac disease.  While this research remains in its infancy, the biological connections between celiac disease and CHD are crystal clear, bolstering the epidemiological findings that people with celiac disease are at heightened CHD risk. 

CHD Today
Before delving into the physiological link between CHD and celiac disease, it’s crucial to understand the pathogenesis of atherosclerosis, or narrowing of the heart’s arteries. 

Atherosclerosis begins with an injury to the endothelial lining of the coronary artery. A hyperactive response by immune cells, particularly macrophages and inflammatory cytokines, causes macrophage cells to become lodged inside the injured endothelium. Through a complex cascade of cell signaling, “trapped” macrophages transform into what are known as foam cells. These foam cells take in circulating blood lipids, especially low density lipoproteins (LDL). Over time this LDL/foam cell mishmash transforms into the arterial plaque most people are familiar with.(6)

Inflammation fuels atherosclerosis from start to finish –from the initial injury to the development and accumulation of plaque. 

The Inflammation Connection
Unfortunately, inflammation is something that people with celiac disease have more than enough of. Serum C-reactive protein (CRP) is a commonly used parameter for celiac disease diagnoses –suggesting that nearly all uncontrolled celiac disease patients have elevated inflammation levels.(7)

CRP also happens to be a more sensitive indicator of impending heart disease risk than serum cholesterol. Cleveland Clinic cardiologist Eric Topol claims that “…in the past, people talked about their cholesterol levels. In the next decade everyone will need to know their C-reactive protein level (a marker of inflammation).”(8)

Other inflammatory mediators –such as IL-6 and TNF-a—are also present in greater amounts in celiac disease patients compared to the general population. In addition to the inflammatory response to ingested gluten, a March 2009 genetic analysis found that individuals with celiac disease were more likely to have polymorphisms that promote inflammatory cytokine production. (9)

Other Links in the Chain
And, there’s more to this celiac disease/CHD story than inflammation. People with celiac disease tend to have comorbidities that compound celiac disease’s damage to the cardiovascular system. 

Fat Malabsorption
Dietary fats are a heart-health double edged sword. Excessive intake of trans fats are strongly linked to dyslipidemia and heart disease. However, a recent American Journal of Clinical Nutrition meta-analysis which included over 340,000 research subjects in its analysis found no connection between saturated fat and heart disease. (10)

Monounsaturated and polyunsaturated fats are protective against atherosclerosis. Omega-3 fats appear to confer a particularly strong cardiovascular disease prevention benefit.(11) Adequate intake and absorption of fats is crucial for CHD prevention. Indeed, a low-fat dietary pattern was shown to increase heart disease risk in a large-scale randomized control trial involving more than 48,000 subjects.(12)

Absorption of dietary fats is severely impacted by celiac disease due to villous atrophy, pancreatic insufficiency and dysbiosis. Lewis et al found that untreated celiac disease patients had approximately twenty one percent lower serum cholesterol levels compared to the general population, suggesting severe fat malabsorption.(13) Based on this research and others it’s conceivable that many celiac disease patients don’t absorb the dietary fats required to combat heart disease. 

Vitamin Malabsorption
Suboptimal nutrient absorption is a near-universal issue in celiac disease patients – even for individuals consuming a gluten free diet. Fat soluble vitamin absorption is particularly affected by celiac disease.(14) Poor absorption of fat soluble vitamins E and D has been tied to increased heart disease risk in several studies. (15)

Homocysteine
Homocysteine is an amino acid that becomes elevated in cases of vitamin B6, folic acid or vitamin B12 deficiency. Poor B-complex vitamin absorption is common in both newly diagnosed celiac disease and in celiac disease patients following a gluten free diet.(16) An October 2002 Meta-analysis found that homocysteine levels twenty five percent above normal levels boosted heart attack risk by eleven percent.(17)

Due to its strong correlation with heart disease, the American Heart Association suggests that individuals with malabsorption symptoms, including celiac disease, should be screened for homocysteine.(17) Simone Saibeni, MD and her University of Milan colleagues justified this recommendation by finding that celiac disease patients were 3.5 times more likely to have elevated hyperhomocysteinemia than the general population.(16)

Type 1 Diabetes (DM1)
Approximately five percent of people with celiac disease also suffer from DM1.(18) Hyperglycemia promotes inflammation, endothelium stiffness and arterial plaque formation.

Rheumatism
Symptoms of rheumatism, especially Sjogrens syndrome and unexplained joint pain, are common symptoms of undiagnosed celiac disease. Lubrano et al found that twenty five percent of individuals with celiac disease also have arthritis.(19) A 2008 population study discovered that people with rheumatoid arthritis have double the heart attack and stroke risk of the general population.(20)

Whole Grain Intake
Whole grain intake is strongly associated with a decreased risk of CHD.(21). Avoidance of fortified whole grains by people with celiac disease may impact dietary intake of B-vitamins, dietary fiber and antioxidants. 

How People With Celiac Disease Can Fight CHD
Preventing CHD in the celiac disease population isn’t dramatically different from what’s typically recommended to the general population. Maintaining a healthy body weight, eating adequate amounts of dietary fiber, staying physically active, avoiding trans fats and consuming monounsaturated fats regularly are the keys to cardiovascular health whether or not one has been diagnosed with celiac disease.

However, there are a few important heart health caveats that those with celiac disease should keep in mind.

Gluten-Free Diet
The importance of a 100 percent gluten free diet for CHD risk reduction and overall health cannot be emphasized enough. Not only is it the most effective treatment for celiac disease, but it is also critical for limiting the inflammatory response that promotes atherosclerosis.(22,23)  Additionally, a strict gluten free diet allows the intestine to heal and recover, boosting absorption of nutrients necessary for cardiovascular health. 

Multivitamin Supplementation
Multivitamin/Multimineral supplementation is standard treatment for celiac disease today.(24) Supplementation helps partly compensate for malabsorption and suboptimal intake of vitamins and minerals. A multivitamin supplement for CHD prevention should include at least 100 percent of the RDA for folic acid, vitamin B12, vitamin B6, and fat-soluble vitamins D and E.

Dietary Fats
“Fat is the most commonly and severely affected nutrient in celiac disease,” reports
Jay W. Marks, M.D., of Baylor University College of Medicine.(25) Individuals with celiac should aim to consume at least twenty five percent of their calories in the form of dietary fat. Healthy monounsatured and polyunsatured fat sources such as extra virgin olive oil, nuts, legumes, fatty fish, and seeds should form the foundation of a heart healthy celiac disease diet.  Pancreatic enzymes may be used to aid lipid absorption and reduce gastrointestinal symptoms like diarrhea and bloating. 

Omega-3 Fats
Omega-3 fats reduce inflammation, increase HDL cholesterol and make cardiovascular arteries resistant to injury. Zhang et al discovered that habitual fish consumption was associated with a forty percent reduction in CHD mortality in healthy populations.(26) Omega-3 fatty acids may have additional benefits for celiac disease patients, especially acceleration of intestinal healing. Celiac disease patients should consume fatty fish like mackerel and salmon at least twice weekly. 

Conclusion
Celiac disease needn’t be an automatic CHD death sentence. Although the connection between heart disease and celiac disease is very real, lifestyle changes can dramatically reduce the chances that someone with celiac disease will develop CHD. Simply eating a gluten-free diet, supplementing with vitamins, minerals and pancreatic enzymes and consuming omega-3 fats –four measures that those with celiac disease should be doing anyway – will shield the cardiovascular system from much of the celiac disease-derived damage that can lead to CHD.

In fact, this new link can ultimately become a net positive for many celiac disease patients as it can motivate them to become more proactive and aggressive in their self-care. 

References:
1. Centers for Disease Control and Prevention; Heart Disease Facts. Accessed April 18th 2011. 
2. Whorwell PJ, Foster KJ, Alderson MR, Wright R. Death From Ischaemic Heart-Disease and Malignancy in Adult Patients With Celiac Disease. Lancet 1976;113-114.
3. Pearson TA, Mensah GA, Alexander RW, et al. Markers of inflammation and cardiovascular disease, application to clinical and public health practice: a statement for healthcare professionals from the Centers for Disease Control and Prevention and the American Heart Association. Circulation  [serial online].2003;107:499-511
4. Peters U, Askling J, Gridley G, et al. Causes of death in patients with
celiac disease in a population-based Swedish cohort. Arch Intern Med. 
2003;163:1566–1572.
5. Ludvigsson JF, James S, Askling J, Stenestrand U, Ingelsson E. Nationwide cohort study of risk of ischemic heart disease in patients with celiac disease. Circulation. 2011 Feb 8;123(5):483-90
6. Gotta A, Farmer F. Atherosclerosis: Pathogenesis, Morphology, and Risk Factors. Cardiovascular Medicine. 3rd Edition, Springer, London, pp. 1593-1613.
7. Lahat N, Shapiro S, Karban A, et al. Cytokine profile in coeliac disease. Scand J Immunol 1999;49:441–446
8. Role of inflammation-Growing proof inflammation is a major risk factor for heart disease. Available at: Updated 8/02.  Accessed April 18th 2011.
9. Dema B, Martínez A, Fernández-Arquero M, The IL6-174G/C polymorphism is associated with celiac disease susceptibility in girls. Hum Immunol 2009;70:191-4
10. Siri-Tarino SW, Sun Q, Hu FB, Krauss RM. Meta-analysis of prospective cohort studies evaluating the association of saturated fat with cardiovascular disease. Am J Clin Nutr [serial online]. 2010;91:535-546.
11. Perez-Jimenez F, Lopez-Miranda J, Mata P. Protective effect of dietary monounsaturated fat on arteriosclerosis: beyond cholesterol. Atherosclerosis 2002;163:385–98
12. Howard BV, Van Horn L, Hsia J, et al. Low-fat dietary pattern and risk of cardiovascular disease: the Women’s Health Initiative Randomized Controlled Dietary Modification Trial. JAMA. 2006; 295:655-66
13. Lewis NR, Sanders DS, Logan RF, Fleming KM, Hubbard RB, West J. Cholesterol profile in people with newly diagnosed coeliac disease: a comparison with the general population and changes following treatment. Br J Nutr. 2009 Aug;102(4):509-13
14. Hallert C, Grant C, Grehn S, Granno C, Hulten S, Midhagen G, Strom M, Svensson H, Valdimarsson T. Evidence of poor vitamin status in coeliac patients on a gluten-free diet for 10 years. Aliment Pharmacol Ther. 2002;16:1333–1339
15. Sesso HD et al.Vitamins E and C in the prevention of cardiovascular disease in men: the Physicians’ Health Study II randomized controlled trial. JAMA. 2008 Nov 12;300(18):2123-33
16. Saibeni S, Lecchi A, Meucci G, et al. Prevalence of hyperhomocysteinemia in adult gluten-sensitive enteropathy at diagnosis: role of B12, folate, and genetics. Clin Gastroenterol Hepatol 2005;3:574e80    
17. Malinow MR, Bostom AG, Krauss RM. Homocyst(e)ine, diet, and cardiovascular diseases: a statement for healthcare professionals from the Nutrition Committee, American Heart Association. Circulation. 1999;99:178–182
18. Ludvigsson JF, Olsson T, Ekbom A, Montgomery SM. A population-based study of coeliac disease, neurodegenerative and neuroinflammatory diseases. Aliment Pharmacol Ther 2007; 25:1317
19. Lubrano E, Ciacci C, Ames PR, et al. The arthritis of celiac disease: prevalence and pattern in 200 adult patients. Br J Rheumatol 1996;35:1314-8
20. Dhawan SS, Quyyumi AA. Rheumatoid arthritis and cardiovascular disease. Curr Atheroscler Rep. 2008;10:128-133
21. Jensen MK, Koh-Banerjee P, Hu FB, et al. Intakes of whole grains, bran, and germ and the risk of coronary heart disease in men. Am J Clin Nutr. 2004;80(6):1492-1499
22. Meresse B, Cerf-Bensussan N. Celiac disease: from oral tolerance to intestinal inflammation, autoimmunity and lymphomagenesis. Mucosal Immunol. 2009;2:8e23
23. Popa C, Netea MG, van Riel PL, van der Meer JW, Stalenhoef AF. The role of TNF-a in chronic inflammatory conditions, intermediary metabolism, and cardiovascular risk. J Lipid Res. 2007;48:751–62    
24. See J, Murray JA. Gluten-free diet: the medical and nutrition management of celiac disease. Nutr Clin Pract. 2006;21(1):1-15.
25. Marks, J. “Celiac Disease (Gluten Enteropathy)”Available at: https://www.medicinenet.com/celiac_disease_gluten_enteropathy/article.htm. Accessed April 29th 2011. 
26. Zhang J, Sasaki S, Amano K, et al. Fish consumption and mortality from all causes, ischemic heart disease, and stroke: an ecological study. Prev Med. 1999; 28: 520–529.

Celiac.com 08/25/2011 - This is a controversial topic. Elizabeth Hasselbeck’s book, The gluten-free Diet (1), has been attacked because it suggests that a gluten free diet can help some people lose weight. One celiac support group has condemned this book as misleading (2).  However, I thought it was a pretty good book, and I’m grateful for the public attention that Hasselbeck has drawn to celiac disease and non-celiac gluten sensitivity. There are at least two sides to the question of whether a gluten free diet is useful for weight loss. As with much other dietary advice, each of these conflicting views is sometimes presented in very strident voices. On one side there are numerous websites and newspaper articles, with an array of “experts” weighing in on this issue, decrying the use of a gluten free diet for weight loss. I even saw a segment of a television show called “Dr. Oz” where the gluten free diet was asserted to cause only weight gain. On the same show the diet was referred to as a “fraud” with respect to weight loss. Similarly, one group of researchers claim that an important side effect of the gluten free diet is weight gain. Even some very popular advocates of the gluten free diet insist that it is inappropriate for weight loss. Yet there are some individuals who advocate this diet as an effective weight loss tool and there is some evidence to back them up. There are even a couple of research reports of weight loss on a gluten free diet. In fact there is at least one study that provides some support for each paradigm. So who are we to believe? What information supports each side of the argument? And how can we evaluate that information?

Before we get to the evidence, however, I’d like to say that I have listened to Ms. Hasselbeck express some of her political and economic opinions. I am now of the firm belief that she is one of the five people on this continent who may know even less about these issues than I do. So let’s leave out the politics and confine our discussion to the issue of the gluten free diet and whether it is suitable for weight loss.

The first and most compelling piece of evidence (for me) is a personal observation. I watched my mom try to lose weight, starting when I was in elementary school. She tried just about every diet out there, from radical fringe to mainstream. She drank protein powders mixed with water instead of eating meals. She tried eating these “rye” crackers that I thought tasted like cardboard.... very crunchy cardboard. She tried a low sodium diet, then a low fat diet, then a sugar free diet, an all fruit diet, a raw food diet, or maybe that was just a single diet of raw fruit. I’m not sure. She probably tried a host of other diets that I don’t remember, but I think you get the idea.  She sometimes lost weight only to gain it back as soon as she stopped the diet.  More often, she gave up because she got tired of being hungry all the time. She eventually gave up on dieting altogether and accepted being overweight. 

Then, about fifteen years ago, in her early-mid 70s, she started a gluten free diet. It wasn’t aimed at weight loss. She was trying to reduce the pain caused by her arthritis. In the first year and a half or two years, she lost 66 pounds. From that time onward, her weight continued to gradually diminish to the point where she had lost about 100 pounds over about ten years of eating gluten free. She was not trying to lose weight. She had long since given up on that objective. Yet the excess pounds just melted away. If only because of its weight loss benefits, I suspect that the gluten free diet has extended her life substantially.

At about 85 years of age, she started eating gluten occasionally. Part of her gluten consumption is wilful. She sees something that she thinks she might enjoy eating, and she requests a serving. Perhaps because of mom’s lapses into gluten, the staff at the home where she now lives have also become quite cavalier about her gluten free diet. They frequently serve her dishes that contain gluten. Still, her weight has remained fairly stable. My mom is not the only example of weight loss on a gluten free diet. There are other stories on the Internet. Just Google “gluten free weight loss diet” and you will see what I mean. But I can’t vouch for those stories. I didn’t observe their weight loss. All I saw was my mom’s.

Currently, there are only a few formal studies that have explored body mass changes on a gluten free diet. One conducted in Ireland reveals that there are eight times as many overweight celiacs as underweight celiacs (Dickey & Kearney). That is quite surprising in light of the common perspective that celiac disease is one of under-nutrition, suggesting that underweight should be a more likely sign of celiac disease. For a long time, that was the dominant belief, but there is clearly a flaw in this paradigm. 

Suspecting celiac disease only in underweight patients is not the only complication of this issue. Dickey and Kearney also report that after two years of dietary compliance, eighty two percent of their 143 overweight and obese patients with celiac disease had gained yet more weight on a gluten free diet. This would seem to suggest that the gluten free diet is not a good bet as a weight loss tool. However, these results do not seem to have been replicated by other investigators.

Another follow-up study, conducted in New Rochelle, NY, reports that ’’ 66% of those who were underweight gained weight, whereas 54% of overweight and 47% of obese patients lost weight’’ on a gluten free diet (Cheng et al ). Thus, on this side of the Atlantic, of the eighty one overweight and obese celiac subjects, about half lost weight following a gluten free diet. That is quite different from the findings in Ireland.

Another, much smaller study of childhood celiac disease revealed that about half of the eight overweight children they studied also experienced weight loss (Venkatasubramani et al ). This research was conducted in Milwaukee and is congruent with the findings from New Rochelle. So, on this side of the Atlantic, about half of the overweight celiac patients studied experienced weight loss on a gluten free diet.   

Perhaps these differences are the result of variations between the versions of the gluten free diet in North America, as compared with the diet in the United Kingdom.  The primary difference I am aware of is that gluten free in the UK includes wheat starch whereas most American organizations do not accept wheat starch as gluten free. However, the gluten free diet that includes wheat starch has been shown to reduce cancer risk and many other celiac-associated risk factors, and has therefore been deemed safe. Nonetheless, that same wheat starch may be a factor in the different body mass findings between Ireland and the USA. Or maybe the difference lies in variations in research methods. Without further research, it is difficult to guess.... and that is exactly what we would be doing.

Without solid evidence, our beliefs are no more than just guesses. For instance, my mom’s weight loss could have been the result of some factor other than her gluten free diet. Perhaps the beginning of her weight loss just happened to coincide with when she started the gluten-free diet. I’m convinced by my observations of her experience, but that doesn’t mean that you should be. After all, I could be kidding myself. Or her weight loss could have been caused by some other factor that I’m not even aware of or recognizing. That is why many of us contribute our hard-earned dollars to research. We need something more than stories about my mom’s experiences. We need solid, peer reviewed research such as what is found in medical journals.  However, even there we need to be cautious about reported findings.

One good indicator that researchers are on the right track is when we see a convergence of results from very different studies. When one study produces a given result, and another study produces a similar result despite very different study designs and objectives, the results of the first study are said to have been replicated by the second study. The advantage, in the case of celiac patients experiencing weight loss following institution of a gluten free diet clearly goes to the two studies conducted in the USA. The studies looked at two different sub-populations of celiac patients yet produced approximately the same results. But both studies still have a problem with selection bias.   

One of the greatest difficulties in assessing research findings is that we are really just assuming that what we see in one or two small groups will be reflected in the general population.  This is why, where possible, study subjects are picked randomly from the general population. However, this cannot happen in studies of celiac patients. They are a select group. This is partly because these subjects have celiac disease and partly because they have a diagnosis of celiac disease. I’m really not splitting hairs here. Please bear with me for a moment as I try to explain this important distinction.

Unlike more than 95% of Americans with celiac disease, these study subjects have a diagnosis. And don’t be fooled. Clinicians are missing almost as many cases of celiac disease in Europe as they are in the USA. Thus, all three of these studies are looking at a sub-group (diagnosed with celiac disease) of a select group (celiac disease). And the lengthy delays to diagnosis, somewhere between five and eleven years, also occur in Europe and Canada, so the difference is probably not dependent on whether there is a socialist medical system in place, as some have suggested. The select group is formed by people with celiac disease. The sub-group is people drawn from the three to five percent of those who have been diagnosed with celiac disease. We know some of the ways that those with celiac disease differ from the general population. But we don’t know any of the ways, beyond the diagnostic criteria, that people with undiagnosed celiac disease differ from the general population or from the population of people whose celiac disease has been diagnosed.  

Studying a small sub-group of celiac patients who have a diagnosis, then assuming that the features observed will be present in all those with celiac disease, whether they have a diagnosis or not, is a flawed approach. Statisticians call this mistake ‘selection bias’. It is a well recognized type of statistical error. For instance, if you wanted to predict the buying habits of people living in Pennsylvania, you would not just observe members of the Amish community. Doing so would not only induce a selection bias, it would lead to very misleading information about the general population of Pennsylvania. While many Amish live in Pennsylvania, their buying habits probably do not reflect the buying habits of most people in Pennsylvania. Similarly, the selection bias driven by extrapolating from observations of sub-groups of people with diagnosed celiac disease and applying those principles to undiagnosed celiacs, leading us to either assume that weight loss will or will not occur on a gluten free diet is mistaken and likely to produce misleading information.

In addition to selection bias, sample size is another important factor in predicting features of a larger population based on observations of a sub-population. The smaller the group, the less likely it is to reflect the variations present in the larger population of those with celiac disease. For instance, if the US population is currently about 311 million, and the rate of celiac disease is about one in every 133 people, then there should be about 2.3 million Americans with celiac disease. Only three to five percent of Americans with celiac disease are thought to be diagnosed with celiac disease. And the studies of overweight celiacs who gained or lost weight on a gluten free diet include about 89 Americans and 143 Irish people. Is it credible to imagine that we can predict the responses of 2.3 million Americans based on observations of a sub-group of 89 of their compatriots and 143 Europeans? I think that most readers will agree that leaping to such conclusions is unreasonable. Yet that is what we do if we insist on the exclusive correctness of either side of the question of whether the gluten free diet is an effective weight loss tool.

I am convinced, both by my observations of my mom, and by the results of these two small studies, that some celiacs will lose weight on a gluten free diet. However, I would not presume to insist that it is the best, or even a good tool for all overweight celiacs. Neither would I insist it was a good weight loss tool for all diagnosed overweight celiacs. Given the US studies, that is clearly not the case. Equally, denial of anecdotal reports or the two US studies claiming that the gluten free diet is not an effective weight loss tool for anyone is also unreasonable.

We can only say, with confidence, that these study results may apply to those who are diagnosed with celiac disease. Yet we have a fairly even split, with American researchers showing that about half of overweight celiacs lose weight on a gluten free diet, and Irish researchers asserting that eighty two diagnosed overweight celiacs gained even more weight on a gluten free diet.

Yet these statistical problems are not insurmountable. If a group of researchers conducted random screening blood tests for celiac disease in a variety of settings and circumstances, confirmed the celiac diagnosis in a large group of these individuals, and followed up with those who were overweight and undertook the gluten free diet, then their observations might reasonably be applied to the celiac population in general, whether diagnosed or undiagnosed. There would still be a relatively minor statistical error induced by cases of sero-negative celiac disease, but the statistical problems would not be anywhere near as problematic as asserting that any or all of these three studies tell us much about weight loss on a gluten free diet, except that it sometimes happens in small sub-groups of diagnosed celiac patients.

Since such research has not been conducted, it behooves all of us to take a moderate stance on either side of this debate.    

That does not mean that we can’t or shouldn’t make use of the available information. Each of us can draw our own conclusions based on our interpretations of the available data. If you believe that, in North America, a gluten free diet can induce weight loss in about half of overweight, newly diagnosed celiac patients, it does seem reasonable to suggest that the gluten free diet may be all that is needed for some diagnosed celiacs to lose weight. However, since we are missing more than 95% of cases of celiac disease, it is difficult to say whether it will help those undiagnosed, overweight celiacs to lose weight. Nonetheless, it is possible. Thus, if it will help some, perhaps about half of them to lose weight, those individuals might well consider this information, limited though it may be, very valuable.

Anecdotal reports, such as my mother’s story, might also be considered very valuable by those who can lose weight on a gluten free diet. For those who do not lose weight on this diet, I suspect that many of them have walked the path my mother did, and it won’t be the first time that a diet failed to work for them. This, of course, raises the question of why some individuals and organizations have vigorously opposed and decried anecdotal claims that a gluten free diet may help some people lose weight. Clearly, there is hard scientific evidence to support this claim.  The reverse is not the case. Nobody has, or can, prove that the gluten free diet is always ineffective at helping people lose weight.  

Meanwhile, we can hope for more research that will answer some of the many questions that arise from this relatively new information that there may be many more overweight people with celiac disease than there are underweight people with celiac disease.    

Several of the questions that remain include:
What causes overweight and obesity in patients with celiac disease? It is, after all, a disease that is characterized by inadequate absorption of nutrients from the food that passes through the gastrointestinal tract. I have previously suggested that specific nutrient deficiencies may induce food cravings that cause some to continue to eat despite feeling ’’full’’ because their bodies continue to demand these missing nutrients. The new field of metabonomic research may soon shed more light on this area. It has already demonstrated that subjects diagnosed with celiac disease are not as efficient at metabolizing glucose (usually derived from carbohydrates) as those without celiac disease. 

Does wheat starch have any impact on nutrient absorption or appetite? If even small amounts of opioid peptides survive in wheat starch and are allowed access to the bloodstream and brain, they may well have an impact on appetite. Opioids or some other component of wheat starch might also alter ghrelin (a hormone that incites appetite) and/or leptin (a hormone that suppresses appetite). We just don’t know. 

Are there other dietary differences between Ireland and the USA? We are aware of the difference in wheat starch, but what other factors might contribute to these divergent research results?
How does wheat starch compare with the 20 parts per million currently being put forward as the labelling standard for American legislation in the offing? Does wheat starch contain 20 ppm?
Will the legislation in question change conditions for celiac patients?

Just how much contamination from gluten grains is present in commercial oats?  Even in the absence of contamination, how many people with diagnosed celiac disease experience cross-reactions with oats?  This is where the selective antibodies are sensitized to protein segments found in oats as well as in gluten grains.

What other differences between Ireland and the USA might explain these variations in research findings? Could variations in sunlight, or water-borne minerals, or even genetics contribute to the difference in findings?

How representative are these groups of other groups of celiac patients? Do they reflect what is going on among all the other diagnosed celiacs in their region? And how do these findings apply to the undiagnosed celiacs?

Is region a genuine factor in all of this? I remember when many researchers were quite willing to believe that there was some difference that had Italy showing a rate of celiac disease of one in 250 while in the USA and Canada it was thought to afflict about one in twelve thousand. We now know that was silly, but at the time, there were a lot of apparently intelligent people who were vigorously asserting the accuracy of those variations and postulating many creative explanations for them. I remember one, now prominent celiac researcher, admonishing me not to take the Italian findings too seriously. He was very confident that they represented a large overestimation of the true incidence of celiac disease in Italy and could not reasonably be suggested as reflecting anything about Canada or the USA.  

Now here is a really startling thought. Some of the overweight people with non-celiac gluten sensitivity might also be able to lose weight on a gluten free diet. If so, this could produce as much as a ten-fold increase in the number of people who might lose weight on our diet. Has anyone tested obese and overweight people for anti-gliadin antibodies? Could gliadin be a factor in some peoples’ weight problems?

I wonder how many people might be helped to lose weight if pre-conceived notions about the gluten free diet could be relinquished in favour of a more open minded view.... one that recognizes that there is some evidence that some people can and do lose weight on a gluten free diet?

The dogmatic certitude that abounds on the question of weight loss through the gluten free diet is profound and disturbing. As is pointed out by nutritionist, Brian Dean, in his article on gluten and heart disease in this issue of The Journal of Gluten Sensitivity, one long-standing dietary sacred cow has been killed. We now know that eating saturated fats is not a causal factor in heart disease.

Equally, the emerging sacred cow that a gluten-free diet is not appropriate for weight loss is, as yet, supported only by flimsy evidence, all of which is contradicted by other research. So let’s avoid making rigid pronouncements about the gluten free diet until we have a better understanding of the complex and perplexing causes of obesity and overweight in the context of untreated celiac disease.  And please, let’s remember that some people can and do lose weight on a gluten-free diet alone. My mother is an excellent but by no means unique example. Others have similar stories. My own experience on the diet was weight gain, and now I have to work at keeping from gaining any more.

Only those who know all there is to know should speak in absolutes. The rest of us should constrain ourselves to offering opinions and perspectives. 

Sources:

1. Hasselbeck E, The Gluten-Free Diet: A Gluten-Free Survival Guide. Center Street- Hatchette Book Group, NY, 2009.
2. http://glutenfreegoddess.blogspot.com/2009/05/gluten-free-diet-opinion-from-elaine-monarch.html
3. Dickey W, Kearney N. Overweight in celiac disease: prevalence, clinical characteristics, and effect of a gluten-free diet. Am J Gastroenterol. 2006 Oct;101(10):2356-9.
4. Cheng J, Brar PS, Lee AR, Green PH. Body mass index in celiac disease: beneficial effect of a gluten-free diet. J Clin Gastroenterol. 2010 Apr;44(4):267-71.
5. Venkatasubramani N, Telega G, Werlin SL. Obesity in pediatric celiac disease. J Pediatr Gastroenterol Nutr. 2010 Sep;51(3):295-7.