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Did You Know? (Summer 2014)

Journal of Gluten Sensitivity Summer Issue - Originally published July 7, 2014

Image: CC--Moyan Brenn

Celiac.com 10/11/2016 - To follow-up to the article on traveling with celiac disease. We spent three weeks in England in September of 2013. About 1% of the children in Great Britain have celiac disease, and, for years, the country vied with Italy as the country with the most adults diagnosed with celiac disease. We traveled the entire length of the country, with me dreaming of all the gluten free foods I would be able to purchase.

We were taken to several dress code restaurants and they did have gluten free menus, similar to the one page menus we have here. In grocery stores, they often have a dedicated aisle, which might be worth incorporating on this side of the ocean. The aisle is called  "With and Without". It contains all the gluten free, kosher, diabetic, and vegetarian products they offer. Specialty products are also interspersed with their partner, standard products in other aisles.

I only found one cream filled sponge cake, and I refused to pay $11.00 for a small square of Christmas cake.  Britain uses buckwheat widely in breads and cereals, the same as Europe. Botanically, buckwheat is not a cereal. It is a member of the family Polygonaceae. (Try saying that fast!)

U.K. and European manufacturers  use Buckwheat in their gluten free foods, but there is evidence that some commercial samples of grain and flour may be contaminated with wheat.
 The health food stores we visited had a frozen, gluten free case, with white rice bread, and through the frost I could see some crumpets. I was very proud at how far we have come in the past ten years.

The confusion between gluten free and wheat free is something that we have to train our eyes to pick up. Gluten free cereals will often have rolled oats in them, and if you are extremely sensitive, you may get sick. My husband picked up one of the exciting boxes of "Gluten Free" cereals, and when I became ill and covered in DH sores we started counting back 48 hours as we usually do to find the culprit.  The cereal contained malt. How that slipped by I don't know. The prevailing opinion is that products with "more than" 20 parts per million (ppm) of gluten will cause damage to the small intestine. This baseline was established in 2007 and researchers in Italy (Am J Clin Nutr 2007):85:160-6 recruited 39 otherwise healthy men and women between the ages of 10 and 65 who had previously been diagnosed with celiac disease.

It may be a good idea to have some questions in mind with regard to gluten free offerings while traveling. For instance, when asking about cookies, muffins and buns:-
Are your gluten free products baked on site? If so, are they prepared on different equipment  or in separate environment from other baking?

If they are prepared off-site, are the products double wrapped? (not loose cookies in a two-sided glass compartment next to non-celiac baking)

May I see the ingredients list?

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Some Are More Sensitive Than Others
Did you know: (8/2013) A group of researchers affiliated with John Hopkins University
focused on cross-contamination of gluten-free products in a recent study of patients who have persistent symptoms of celiac disease despite following a gluten-free diet. Jason Clevenger et al state in their conclusions that while the vast majority of celiac disease patients can safely consume up to approximately 20mg of gluten daily,  some people develop significant intestinal signs at a much lower daily gluten exposure. Particularly sensitive patients,  may need to reduce the risk of cross-contamination by largely avoiding gluten-free processed food, and being vigilant by reading the ingredients lists. In particular, such strategies might prevent a mis-diagnosis of refractory celiac disease.

 About.com There has been an increasing amount of research where the majority of patients with celiac disease could tolerate limited amounts (no more than ½ to 3/4 cups) of pure oats. A small number of people with celiac disease, however, could not tolerate even pure, uncontaminated oats. In these individuals, a protein in oats called "avenin"triggered an immune response similar to that caused by gluten. There was no way to tell in advance which patient would be sensitive to avenins. What do the experts recommend? Most of the large-celiac societies and clinical treatment centres now advise patients with celiac disease to consider adding limited amounts of pure, uncontaminated oats to their diet under a doctor's supervision. Newly diagnosed patients, however, are advised not to eat oats until their celiac disease is well controlled, (that is, their symptoms have gone away and their blood test results are normal) In all cases, patients who add oats to their diet are advised to see their doctors three to six months later. Furthermore, celiac patients should not eat any products that contain oats unless the oats are clearly labeled as pure, uncontaminated, and gluten free. I still worry about the fields and what they grew there two years ago.  Was it always oats?

Did You Know: Another article in "About.com" asks the question, "Can Eating Gluten Free Help With Your Eczema Treatment?" "There may be another alternative for people seeking eczema treatment. The skin condition appears to be linked to celiac disease and the treatment for celiac disease, the gluten-free diet, may help treat eczema in some people."

Unsteady On Your Feet?
Ataxia is a failure of muscular co-ordination and/or irregularity of muscular action. DID YOU KNOW: that when you develop gluten ataxia, gluten can cause your body's disease-fighting white blood cells to attack your cerebellum, resulting in problems with your gait and
 motor-skills. It can also cause eye problems and other symptoms. (About.com Gluten Ataxia) In order to treat gluten ataxia, which involves gait, muscular and numerous other neurological problems caused by gluten, you need to maintain an extremely strict gluten-free diet.

Brain Fog
DID YOU KNOW: Brain Fog describes mental confusion or a lack of mental clarity. Dr. L  Wilson on his website Dr. L.Wilson.com, states that brain fog is unrelated to depression, dementia or any other mental problem and yet it is rarely accepted as a real symptom that can help to arrive at appropriate diagnoses. "Since ataxia itself is a fairly rare condition, affecting only 8.4 people out of every 100,000 in the U.S., that means fewer still actually have gluten ataxia. However, the estimate of how many people with celiac disease and gluten sensitivity who have neurological symptoms is much higher."

Mental Illness
Food allergies can disrupt the sensitive balance of hormones and chemicals in the brain, resulting in problems from depression to schizophrenia, according to an article on AlternativeMentalHealth.com. People who are sensitive to gluten often suffer from malabsorption, leading to low levels of essential nutrients in the body. The body attacks gluten as if it were an invader, which damages the finger-like projections called villi that absorb nutrients when food passes through the small intestine. Malabsorption can inhibit mental development in children and lead to deficiencies in people at any age. When a person has a problem with cognitive function, his or her thought processes are directly effected. Examples include attention and concentration difficulties. People cannot feel brain tissue. The tissue is not designed to alert people to problems like itching, pain or swelling as occurs in other parts of the body, according to Dr. Kaskow.com. However, there is little research on brain fog. In some cases your fuzzy head may be related to fatigue and sleep problems that can occur with CD. It may also be related to nutritional deficiencies. Brain Fog can also be related to fibromyalgia,  ADD, adrenal fatigue and chronic fatigue syndrome. However, people with celiac disease and other autoimmune conditions, such as multiple sclerosis and rheumatoid arthritis also report problems with brain fog, as do people with gluten sensitivity. It appears to be a "catch-all" phrase and you may not find brain fog on the short list of common symptoms of celiac disease, even though people with celiac disease frequently report it. Some newly diagnosed celiac patients have told me that they suffered from brain fog for years.

Dr. Alessio Fasano, director of the Massachusetts General Hospital Centre For Celiac Research, says that brain fog affects about one-third of his gluten sensitive patients, (it appears more commonly among  those with non-celiac gluten sensitivity).

Some Random Statistics
DID YOU KNOW:at least some of these statistics? Celiac disease in the United States is so common now that if afflicts more than two million? That's about one in 133 people. Dermatitis herpetiformis affects 15 - 25% of people with celiac disease. (One in 2,500 Americans according to the Red Cross.) Italy reports about one in 250 people who have celiac disease. Could it be the pasta? Amazingly celiac disease is rare in Africa, China and Japan. I can understand China and Japan as their staple diet is rice.  

Kamut and Spelt
DID YOU KNOW: Jason Clevens, PhD,  is the principal scientist with the consulting firm Exponent Inc. He states that testing information shows more evidence that kamut and spelt are not gluten free? Researchers harvested immune system cells from 13 patients with biopsy proven celiac disease. They then tested the response of the cells to ancient and modern strains of wheat. All strains tested wheat positive, proving that kamut, spelt and other wheat varieties should be avoided on a gluten free diet because they provoke the same immune system response in those with celiac disease.

Girl Guide Cookies
DID YOU KNOW: 1/16/2014 On the lighter side NFCA Vice-President Jennifer North appeared on NBC Philadelphia alongside the Girl Scouts of Eastern Pennsylvania following the release of the new gluten free Girl Scout cookie option. January 16th was the official kick-off date of the Girl Scout Cookie season. Gluten free chocolate chip shortbread cookies! They announced the Pilot of the new variety. (Check out the video clip from NBC Philadelphia and keep your eyes and ears open with regards to their test product, or watch this site for further news!

DID YOU KNOW: (1/16/2014) About the controversy over gluten removed beer? There is no scientifically validated test to confirm whether all gluten particles are broken down during the removal process and current tests may not be able to identify these smaller particles, which can still cause intestinal damage in people with celiac disease. To help clarify the issue, Tricia Thompson, M.S., RD, of "Gluten Free Watchdog" consulted with a variety of experts from the fields of mass spectrometry, ELISA testing, and amino acid sequencing  of gluten proteins. Tricia Thompson further explained why gluten removed beer is not yet considered safe for people with gluten related disorders. Her breakdown of this issue also includes details on alcoholic beverage labeling and the government bodies that regulate them. (To download visit GlutenFreeWatchdog.org or see Celiac Central. (I believe it is case sensitive)

Beer whose labeling is under the jurisdiction of the TTB cannot be labeled gluten-free. Beer whose labeling is under the FDA can be labeled gluten-free provided all gluten-free labeling criteria are met. Who regulates barley-based "gluten removed beers, such as "OMISSION"? Beer that is made from both malted barley and hops such as OMISSION (has both malted barley and hops) regulated by the TTB.

DID YOU KNOW:: Celiac Disease and Mental Health/NFCA indicates that celiac disease can affect how a person thinks and behaves. Behavior and social interaction  are but two items on a list of many. It is a very serious web site that will encourage you to remain vigilant with regard to your gluten free diet. 

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Exactly what are your allergy symptoms? Were they IgG or IgE? Allergy testing as a whole is not super accurate -- especially the IgG. Were you on any H1 or H2 antihistamines for the last five days when you were tested? As far as celiac testing, four days without consuming gluten probably would not impact testing.

I've been seeing my dr for a few weeks now about my stomach issues. We've ruled out the gallbladder and h-pylori and today I had the celiac blood tests done. From the reading I've done the past two days, it seems to me that it's highly likely that I have it. I've had digestive issues for years, but they've gotten progressively worse over the past 6 months or so. Pain and nausea when eating, bloat, eternal constipation, dh rash, at it's worse, tight cramp-like pain in a fist under my sternum, radiating through my back and around my right side keeping me up at night. Also heartburn/reflux and trouble swallowing, etc. Anyway, about 2 months ago, I needed a change. I didn't go to the dr immediately because it seemed pointless. (I've mentioned stomach ache when eating to drs before and been blown off.) So, I started the Whole30 elimination diet (takes out soy, grains, dairy, peanuts, and leaves you basically eating meat & veggies). Figured it would show me what I needed to take out of my diet and hopefully feel better. It worked- I felt great! And it seems that grains and gluten are my biggest offenders. But, now I've been off gluten prior to celiac testing. It's been 7 weeks. After 4 weeks I tested steal cut oats, that I later found out were probably glutened. And then nothing until yesterday. Yesterday I had 2 pieces of bread and a muffin and today I had two pieces of bread and then the blood test. Is this going to be enough to show up on the tests? My dr said that it would probably show up, since I had some yesterday and today and was currently having symptoms. But, google seems to say that I should be glutened for 2 wks straight before testing. Has anyone tested positive after just a little gluten? If it's negative should I insist on doing it again after weeks back on gluten? I feel awful, but do want clear answers. Obviously, gluten's not going to be a part of my life any more either way.

So just to clarify had not consumed any gluten for about 4 days before testing. I was assured by my allergist that it wouldn't affect the test. But what was alarming was that she retested my food allergies (my most recent reaction was two weeks ago) and every food allergy I have came back negative. I don't understand how that is possible. These food allergies developed when I was 20 and I am almost 24 now.

Thanks! You too! I have learned from this experience to take charge of my own health. It's nice at least that we can try the gluten-free treatment without a firm diagnosis or a doctor confirming the disease. I've also felt some of the gluten withdrawal symptoms, and my stomach pain ebbs and flows, but I'm determined to stick with the gluten-free diet to see what a difference it makes. Gemini, thank you! This was really validating and useful for me to hear. I've felt so confused through this process and just want some answers. If the biopsy results do come back negative, I'm going to follow your advice and do the gluten-free diet with repeat blood testing after a while. If they come back positive, well, then I'll have my answer. I'm supposed to get them back next week.

I have celiac and eosinaphalic esophagitis. I was put on a steroid inhaler recently. I use it like an inhaler but swallow the air instead of breathing it in. You may want to look into EOE and it's relationship to celiac. Just a thought. My swallowing and celiac seem to be related.