Celiac.com 06/12/2020 - What happens in Gluten Ataxia?  Well, first, we want every celiac person to know what Gluten Ataxia is to ensure we are on the same "wave length". Gluten Ataxia is an autoimmune disorder in which the antibodies that are released in sensitive individuals when digesting gluten attack part of the brain by mistake. Since Gluten is a protein found in wheat, rye and barley, one would think that gluten exposure would have nothing to do with the brain, but since most people have no trouble with digesting this protein, others have a gluten sensitivity or celiac disease.
 
In some cases the body's reaction to gluten can become quite severe. In these cases, the body starts to attack the central nervous system which may cause gluten ataxia. People who have issues digesting gluten may also develop digestive problems that cause damage to the small intestine. 
 
Gluten Ataxia usually starts off with mild symptoms, and gradually become worse over time. When left untreated the condition could lead to permanent damage.  There is also evidence that people who suffer from gluten ataxia will show signs of cerebellar atrophy. Cerebellum atrophy is the shrinkage of the cerebellum.  The cerebellum if the part of the brain located in the back of the head above the neck. The cerebellum is responsible for movement and has a direct impact on activities such as balance, speech, posture, walking and running.  Gluten Ataxia is a relatively new discovery and thus not yet widely known to doctors and other medical professionals. This can make a diagnosis and proper treatment difficult to obtain.
 
However, there are groups of researchers dedicated to spreading information abut this rare condition. As mentioned, it is a progressive condition, which means that symptoms may start off mild and almost unnoticed, and gradually progress to being debilitating.  The symptoms of gluten ataxia are similar to symptoms of other ataxia conditions, which can make it tricky to get an accurate diagnosis. The symptoms appear in basic movements, such as walking or arm control, unsteady gait, difficulty walking, and loss of precise movement skills such as the ability to write or button a shirt.

Parents should be on the lookout for ataxia symptoms in  their kids. Children with celiac disease, specifically those in their early teens, would likely benefit from mental health evaluation. Strict adherence to the gluten-free diet does not mean you will never get gluten ataxia, especially for those who are not strict enough with their gluten-free diets.  

Some researchers have estimated that potentially up to 41 percent of all people with ataxia of unknown origin may have gluten ataxia.  Other studies have indicated much lower numbers. A review of mental health studies indicated a prevalence of roughly 23 percent in patients with unexplained ataxia. 

In the last eight years or so the celiac community has finally been made aware of "gluten sensitivity" as a legitimate diagnosis. Twenty-five years ago you would not have heard of it, but now it has been given a rightful place along side of celiac disease and dermatitis herpetiformis. The same is true for gluten ataxia, its recent discovery will allow those who have it to say: "Finally, finally, someone is finally listening to me!" 

Read more at medicalnewstoday.com

Celiac.com 05/14/2020 - May is Celiac Disease Awareness month. I'll be honest, I'm not sure how we got a whole month, but I'm happy we do. I use this month as a way to bombard my personal social media with facts, figures, memes, infographics, and anything else to let people know more about celiac disease. But really, before we get into the whole Celiac Disease Awareness month pomp and circumstance, I wanted to make an apology.

Lately, I've been really hard on scientists studying celiac disease, and I've had some revelations that maybe I've been too hard on them.

Celiac disease has been around for millenia. Scientists have found evidence of the disease in ancient bones from Rome. The trigger for celiac was pieced together during bread shortages in World War II in the Netherlands. I want to believe that scientists know a lot about this disease. But I'm not confident that is a fair assumption.

Until the early 2000's, celiac disease was thought of as a disease discovered in childhood that could be outgrown. Celiac was thought to be rare in the US, they didn't have the tools to look for celiac, and therefore doctors didn't even screen for celiac. When you talk to people diagnosed before 2005 or so, they will tell you that it was highly unusual to find someone with celiac disease. In the few people I've talked to diagnosed before 2005 or so, they will tell you it was years before they were diagnosed. Typically, they had a family member that was a doctor and did research to find this unusual disease. They will tell you they were diagnosed via endoscopy only because that is all that was available at the time.

The Tissue Transglutaminase or TTG test was developed in 1997. In Gut magazine in 2000, scientists talk about the new TTG test and in the introduction they say, "Coeliac disease is one of the commonest underdiagnosed diseases in general practice." Wow! And that was only 20 years ago they were talking about celiac being common and underdiagnosed.

Now you have a disease that can be easily screened for and an easy cure—simply eliminate gluten from the diet and all will be well. Gluten is what causes the damage to the small intestine—so removing it should solve the problem.

GMO's, Paleo diets, and  gluten-free diets are all the dieting rage in the early 20-teens. Gluten-free foods are the fastest growing segment of the food industry. Gluten-free labels start to appear on everything—gluten-free or not until the FDA limits the use of the  gluten-free label and requires food manufacturers to list the top 8 allergens in clear bold print on the label for all to see. Wheat is considered one of the top 8 allergens, but the remaining gluten allergens, like barley and rye, are not required to be listed.

Non-celiac gluten sensitivity starts to enter the lexicon. This is where someone has a reaction to gluten but tests negative for celiac disease. It is a controversial diagnosis of exclusion as there is no test to confirm NCGS. Food allergy tests also come into vogue during this time. All gluten containing grains are a part of these test and many people show "reactivity" to gluten containing grains. Further fueling the demand for  gluten-free foods.

In the second half of the 20-teens, drug companies start to realize that this celiac disease might be a gold mine. It is an underserved community with absolutely ZERO pharmacological interventions available for those with celiac disease. The  gluten-free diet should cure the disease. Drug companies realize that the  gluten-free diet is hard and that people want to be free to not deal with such a restrictive diet.

Fast forward through the  gluten-free fad of the early 20-teens and we come to today, which is really where I wanted to get to anyway.

I don't think we have a clear idea of what celiac disease is, what its long term effects are, how strict does a  gluten-free diet need to be to induce healing, and why do some heal on the diet while others move to refractory celiac disease. I think we know the trigger of celiac disease as the dietary consumption of gluten. But we don't know why only about 1% of the people with the genetic markers develop celiac. Scientists have conflicting information about the development of celiac in children regarding the timing of introduction of gluten, breast feeding vs. bottle feeding, and other things. In Sweden there was a huge spike in celiac diagnosis for children born in the 1980's through early 1990's, but they don't know why.

I consistently see studies discussing that no matter how hard we try, it is virtually impossible to eliminate gluten 100% from our diets. My answer is duh, but obviously scientists didn't know. I think they thought it was easy to eliminate gluten from the diet. I think they are slowly realizing how much attempting a  gluten-free diet affects people health-wise, socially, and economically. I see studies that show that people with celiac disease have a shortened lifespan and others that say that once a gluten-free diet is initiated all risk factors for a shortened lifespan return to normal levels. Let's not even discuss those that move onto refractory celiac disease. I've decided they don't know for sure about the long term consequences of celiac...gluten-free diet or not.

My bottom line in all of this very long diatribe, is that they've only really been studying celiac disease for about 20 years. In northern Europe, they have more historical data on celiac than anywhere else, but it is still pretty scant and incomplete. But I've decided we have to give these scientists a break. They are working hard to crack the mysteries of celiac disease. Although I'm disappointed at where we are in the research today, I'm hopeful that we will make significant discoveries in the next 20 years of ongoing research to provide answers to those suffering from gluten-related diseases.

But, today, and all this month, is Celiac Disease Awareness Month, so let's put all of these worries behind us and let the world know about celiac disease!

Celiac.com 05/13/2020 - With the collapse of the Nexvax 2 'vaccine" for celiac disease, which was really more like allergy therapy, but which has been abandoned after poor results in clinical trials, the hope for an outright cure, or "silver bullet" treatment for celiac disease seems a far-off possibility. That means that people with celiac disease are unlikely to gain immunity to gluten, and start freely eating gluten any time soon.

Unlike a vaccine, which would theoretically make it possible for people with celiac disease to eat gluten, enzymes do not change the underlying celiac disease at all. People with celiac disease still have celiac disease, and need to follow a gluten-free diet to maintain optimal health. However, gluten-busting enzymes seem to hold the most promise for helping people with celiac disease to avoid accidental gluten ingestion, and to promote better overall health.

New revelations from real world studies that show that even the most diligent celiacs are often exposed to gluten offer strong arguments in favor of using gluten targeting enzymes.

Arguments Against Enzymes

Arguments against enzymes include the idea that such enzymes might lead celiacs to deliberately consume gluten. There are good reasons why this viewpoint doesn't stand up too well to scrutiny. Anyone who would risk their health to deliberately consume gluten likely doesn't need an enzyme as an excuse to do so. Any extra protection against gluten contamination would seem to be a good idea for most celiacs, even those who willingly cheat on their diets, which some surveys put at over 20% of celiacs, especially in light of data that shows that many gluten-free people with celiac disease are accidentally, and unknowingly exposed to low levels of gluten that can trigger symptoms and cause gut damage.

Other studies show that adverse gluten reactions are common in people with celiac disease on a gluten-free diet. Eating away from home, especially at restaurants and other homes, carries the greatest risk for gluten exposure.

Arguments in Favor of Enzymes

Arguments in favor of enzymes often include the idea that enzymes are unlikely to harm patients, and could provide an extra measure of protection against minor accidental gluten ingestion by people with celiac disease. Especially in sensitive people, the argument goes, enzymes could offer some protection. That argument has been borne out by the studies showing that most gluten-free celiacs are regularly exposed to gluten in their diets.

There are currently numerous enzymes on the market that claim to break down gluten to one degree or another. Most of these enzymes target gluten in general, but one, AN-PEP, has been shown in several studies to break down gluten in the stomach before it gets to the intestine. This could be a crucial development in celiac disease treatment and management. 

Enzymes that Claim to Break Down Gluten

AN-PEP

AN-PEP, derived from the from aspergillus niger fungus, AN-PEP is one of the most promising enzymes. It has been clinically proven to break down gluten in the gut. There are several brands of aspergillum niger, including Gliadin-X.

Kiwifruit

Recent research shows that the kiwifruit produces enzymes that are great at breaking down gluten proteins, and could be effective supplements.

Papaya

The product, called GluteGuard, is based on a papaya fruit enzyme called caricain. This papaya enzyme is shown to be helpful for celiac patients. A 2015 study showed adding caricain to bread dough reduced gluten toxicity to gluten by 90% for celiac patients.

Carnivorous Plant Enzymes

Remember all those cool plants, like Venus Flytraps and Pitcher Plants, that eat bugs? Enzymes from carnivorous plants are excellent at breaking down the proteins that make up the plant's diet. Studies show that these enzymes are also great at breaking down gluten proteins.

Latiglutinase

Celiac patients appear to show symptomatic and QOL benefit from using latiglutenase with meals.

Enzymes from Oral Bacteria

A recent study of oral bacteria concludes that gluten-degrading Rothia and food-grade Bacillus subtilisins are the "preferred therapy of choice for celiac disease," and that their exceptional enzymatic activity, along with their connection to natural human microbial colonizers, make them "worthy of further exploration for clinical applications in celiac disease and potentially other gluten-intolerance disorders."

Few Oral Enzymes Break Down Gluten in the Stomach

Oral enzymes that break down gluten in the gut offer the best hope for most celiac patients in the near term. One enzyme in particular, AN-PEP, which is derived from aspergillum niger, has been clinically shown to break down gluten in the stomach, before it reaches the intestine. Breaking down gluten proteins before they reach the intestine, and provoke an immune reaction in celiacs, is key to any oral enzyme. As such, AN-PEP seems to hold tremendous promise.  

Gluten-Busting Enzymes Could Change Food Manufacturing

Researchers at Clemson University are working to produce active enzymes that can be added to products to make them gluten-free, in much the same way that lactase enzymes are used to make lactose-free milk. Obviously many hurdles need to be cleared, and much testing and refinement must happen, but, in theory, such products would be safe for people with celiac disease. 

A growing body of evidence shows that enzymes may have a beneficial role to play in helping people with celiac disease to minimize potential damage from accidental gluten ingestion, which happens more frequently than previously thought. The key will be finding ways to deploy these enzymes that are proven to provide protection for people with celiac disease looking to follow a gluten-free diet, including oral enzymes that break down gluten in the gut, and possibly even in products that contain wheat, rye, or barley.

Stay tuned for more developments on the role of enzymes in celiac disease treatment and management.

Celiac.com 05/08/2020 - Can someone with celiac disease really heal?

This is sort of how I see the villi of someone with Celiac disease - flattened with big gaps between.

I missed this one, but in November 2019, there were some results from the Nexvax study involving endoscopic biopsies. It confirms what we already knew - blood tests and biopsy results are unrelated and celiac patients are sicker that they should be.

The study lists that 93 patients underwent endoscopic biopsies as part of their participation in the Nexvax2 clinical trial. Only SIX patients had Marsh 0 or 1 damage. Marsh 0 or 1 damage is considered normal. Thirty had Marsh 2 damage and fifty-six were Marsh 3a or 3b. The good news is that some people had complete healing. But out of 93 patients, 86 people had enough damage to warrant a celiac diagnosis.

More specifically, seventy-eight patients were on a gluten free diet for greater than two years and seronegative (had negative blood tests). 72 out of 78 patients have Marsh 2 or higher damage. Fourty -five or 58% of those tested still had Marsh 3 or higher damage. Typically, Marsh 3 or higher damage is required for celiac diagnosis.

So, even after two years of a gluten free diet and clean blood tests, these patients are just as damaged as someone who is just diagnosed with celiac disease. That is disheartening. Now, we always knew there was a chance that people with celiac may never heal. We also know that blood tests and damage are not correlated and this proves that again. How do we know the damage is ongoing without endoscopic biopsies? We don't at this point.

Look, I can go off on this and talk about how frustrating it is. How we really need some way to know what is going on in our bodies. How we need something to help us because this diet alone isn't working and these results prove it. But we just have to be patient. I know scientists are working on it. I know volunteers are volunteering to participate in trials. I'm just ready!

Here is the study.

Celiac.com 04/25/2020 - Do you know or suspect that you may have a sensitivity to wheat (or gluten)?

According to the European Journal of Endocrinology, 43% of people with gluten sensitivity will manifest a form of thyroid dysfunction. (1)

The American Journal of Endocrinology reports 30.3% of people with celiac disease will have thyroid dysfunction. (2)

If you have a gluten sensitivity, a common manifestation is that it impacts your thyroid. In fact, thyroid dysfunction is four times higher in people with celiac disease than in the general population. (3)

Your thyroid is a butterfly shaped gland located in your neck. The two main hormones produced are triiodothyronine (T3) and thyroxine (T4). The most common types of thyroid dysfunction are related to the levels of hormones. For instance, hyperthyroidism is an overproduction, as seen in conditions such as Graves disease. Hypothyroidism is when you are not producing enough or your thyroid is underactive, as seen in conditions such as Hashimoto’s. 

Hormones get into the cell through receptor sites specific to that particular hormone. Estrogen goes into an estrogen receptor site. Testosterone goes into the testosterone receptor site. Thyroid hormone will only go into a thyroid receptor site. There is a thyroid receptor site on every single cell of your body. It is an incredibly important hormone.

Have you ever turned the thermostat down in your home on a winter night when everyone goes to sleep to save fuel? And in the early morning, turn it up to warm your home before everyone wakes up? Your thyroid is the thermostat that controls the temperature inside every cell of your body, otherwise known as your metabolism. And your metabolism is how fast or slow every function in your body occurs. 

Because the thyroid regulates the level of function of every cell in your body, any symptom in your body can be the result of thyroid dysfunction. 

The most commonly recognized symptoms of thyroid dysfunction are: 

• Cold hands and feet
• Lack of vital energy
• Brain lacks clarity of thought
• Difficulty losing weight
• Depression
• Hitting snooze multiple times in the am

Physical symptoms that may suggest a thyroid condition:

• Distal third of the eyebrows are thinned out
• Dry, cracked skin, such as the bottoms of your feet
• Brittle hair
• Fatigue
• Increased sensitivity to cold
• Constipation
• Dry skin
• Weight gain
• Puffy face
• Hoarseness
• Muscle weakness
• Elevated blood cholesterol level
• Muscle aches, tenderness and stiffness
• Pain, stiffness or swelling in your joints
• Heavier than normal or irregular menstrual periods
• Thinning hair
• Slowed heart rate
• Depression
• Impaired memory
• Enlarged thyroid gland (goiter)

Medication Warnings for People with Thyroid Dysfunction

Of course, if it is determined that you need medication, always follow your doctor’s advice. But at the same time, investigate. ‘WHY’ does my body need medication right now? The FDA warns that some thyroid medications may cause serious consequences, including liver disease, liver dysfunction and death. (4) Although uncommon, if you are taking medications and are not seeing improvement, discuss concerns with your doctor before stopping any medications. Try eliminating gluten from your diet to see if you notice any improvement with your thyroid-related symptoms. 

People with a sensitivity to gluten who still eat wheat require 49% more thyroid hormone to ‘get the job done’  compared to when they stop eating gluten. (5) That means that IF gluten is a problem for you, when you stop being exposed to gluten, your thyroid begins working better, requires less ‘outside help’ - thus less medication, and less risk of side effects from the medication.

If you improve on a thyroid healing protocol, some people find antidepressants are no longer necessary. But before going off any medications, you should first check with your doctor on how to safely do this and confirm it is advisable.

Thyroid function is critical to your sense of well being. Whatever it takes to improve its function so you can feel good, keep digging away to discover what may help you. You may be among the many people who have a sensitivity to gluten, and it is triggering an autoantibody response. If so, eliminate gluten from your diet. If gluten is not your trigger, you will need to identify what the trigger(s) are. There is often more than one thing. For example, once BPA, a chemical used to mold plastic found in our food and drinks gets into our bloodstream, it is notorious for binding to thyroid and causing chaos. (6) 

Removing substances (foods and chemicals) offensive to the thyroid,allows this very important gland to function more normally. Testing is advisable to drill down and uncover the source of the problem. 

What can impact the thyroid negatively?

Chlorine is a common one that binds to the receptor sites. (7) An easy ‘base hit’ is to add a chlorine shower filter to your shower head. It may also improve your skin and hair.

Bromine - Overexposure to bromine can cause hypothyroidism. (8) Bromine can be found in baked goods, carbonated soft drinks, hot tubs, and even your car upholstery. Your thyroid relies on iodine for hormone production. Bromine tricks those receptor sites into thinking it is binding with iodine. Ultimately, this results in an iodine deficiency and likely thyroid dysfunction.

Fluoride - Some people benefit from choosing fluoride-free toothpaste or fluoride-free water. Fluoride effects appear to be more severe in people with iodine deficiencies and is more closely associated with hypothyroidism. (9) 

Goitrogenic foods - Goitrogenic means they may inhibit thyroid function. The following are very good foods for you but it is worth seeing if any of them may be inhibiting thyroid function. This would include cruciferous vegetables like broccoli, cabbage, or cauliflower. If you have thyroid problems, screening these foods, keenly observing how you feel and function may be of value.

Gluten Sensitivity with or without celiac disease - A recent 2019 study of 34 women with thyroid disease was performed to examine the impact of a gluten-free diet. After six months, the results showed that the group on a gluten-free diet had significantly less antibodies affecting thyroid globulin (TG) and thyroid peroxidase (TPO). (10) 

Rapid weight loss - When you lose a lot of weight or starve yourself, your thyroid slows down its metabolic activity. Ancestrally, this is your body’s way of protecting you for those times when food is scarce, to prevent death from starvation. When your gas gauge says empty and the nearest station is a few miles away, you slow down to burn less fuel and hopefully you’ll make it to the station for a fillup (your next meal). Responsible weight loss is slow and steady.

Estrogen - Yes, estrogen is needed for both men and women, but you can have too much of a good thing. Many studies have been done on the association between estrogen and your thyroid levels. Estrogen dominance produces thyroxine binding globulin (TBG) which binds to that thyroid receptor site, reducing your available thyroid hormone availability. 

A Case of Mistaken Identity

The primary offensive gluten molecule is 33 amino acids long. It’s a long molecule. If your immune system is searching (antibodies) for the food you are sensitive to it may attack other molecules that look like the food. The surface of your thyroid is made up of proteins and fats. The proteins are made up of many amino acids, which can include a section that looks like the gluten molecule. Now the immune system may go after the thyroid damaging your thyroid cell. The ‘geek’ term for this is Molecular Mimicry.

Once the immune system goes after the thyroid damaging your thyroid cell because of Molecular Mimicry (in this example), now your body needs to make thyroid antibodies to get rid of that damaged cell. If you have a sensitivity to gluten, every time you eat gluten, your body creates antibodies to gluten. These may also go after the thyroid where it looks like it (if that is your genetic weak link). Eventually, over time, your body develops the mechanism where it starts making antibodies to the thyroid ongoing. Some celiac patients or people with gluten sensitivity find that when they go on a gluten-free diet, the thyroid antibodies also go down. Sometimes dramatically, full remission. Thus, sometimes you can reduce the antibodies to your thyroid just by removing the irritating foods.

Foods That Contain Gluten

Many foods contain gluten, but the concerning ones (to everyone) stem from wheat, rye, and barley. These are toxic forms of gluten that nobody is able to digest, and it is one of the most common foods people eat. In general, when referring to a gluten-free diet, this means avoidance of foods containing wheat, rye, and barley. Now there is gluten in many other grains, corn, rice, quinoa,... But it’s the toxic family of glutens in wheat, rye and barley we’re talking about here. You may be sensitive to corn. Or rice, or quinoa, or any other food. If you are, stop the food. But it would not be included in the family of gluten sensitivity. That term is allocated to wheat, rye and barley.

And remember these grains are used as fillers in many different foods as well as hidden sources, such as sauces, cosmetics and shampoos (which can be inhaled). You want to eliminate all forms of gluten to reap the benefits.

A recent study on women with Hashimoto’s showed that a gluten-free diet may offer clinical benefits. (11) And it isn’t just hypothyroidism that seems to show improvement. People with Graves are also reporting improvement. (12) Why? Gluten is a common trigger for a lot of people. You may be one of them and not even realize it.

If you are struggling to manage your thyroid symptoms, try a gluten-free diet for a few months. You should notice symptom improvement relatively quickly if gluten is the only trigger making your condition worse.

Scientific References

1. Valentino, Rossella & Savastano, Silvia & Maglio, Maria & Paparo, Francesco & Ferrara, Francesco & Dorato, Maurizio & Lombardi, Gaetano & Troncone, Riccardo. (2002). Markers of potential coeliac disease in patients with Hashimoto's thyroiditis. European journal of endocrinology / European Federation of Endocrine Societies. 146. 479-83. 10.1530/eje.0.1460479.
2. Sategna-Guidetti, C & Volta, U & Ciacci, Carolina & Usai, Paolo & Carlino, A & Franceschi, L & Camera, A & Pelli, A & Brossa, C. (2001). Prevalence of thyroid disorders in untreated adult celiac disease patients and effect of gluten withdrawal: An Italian multicenter study. The American journal of gastroenterology. 96. 751-7. 10.1111/j.1572-0241.2001.03617.x.
3. Baharvand P, Hormozi M, Aaliehpour A. Comparison of thyroid disease prevalence in patients with celiac disease and controls. Gastroenterol Hepatol Bed Bench. 2020;13(1):44–49.
4. fda.gov
5. Virili, Camilla & Bassotti, Giulia & Santaguida, Maria & Iuorio, Raffaella & Duca, Susanna & Mercuri, Valeria & Picarelli, Antonio & Gargiulo, Patrizia & Gargano, Lucilla & Centanni, Marco. (2012). Atypical Celiac Disease as Cause of Increased Need for Thyroxine: A Systematic Study. The Journal of clinical endocrinology and metabolism. 97. E419-22. 10.1210/jc.2011-1851. 
6. Gore AC, Chappell VA, Fenton SE, et al. EDC-2: The Endocrine Society's Second Scientific Statement on Endocrine-Disrupting Chemicals. Endocr Rev. 2015;36(6):E1–E150. doi:10.1210/er.2015-1010
7. Bercz JP, Jones LL, Harrington RM, Bawa R, Condie L. Mechanistic aspects of ingested chlorine dioxide on thyroid function: impact of oxidants on iodide metabolism. Environ Health Perspect. 1986;69:249–254. doi:10.1289/ehp.8669249
8. Allain P, Berre S, Krari N, et al. Bromine and thyroid hormone activity. J Clin Pathol. 1993;46(5):456–458. doi:10.1136/jcp.46.5.456
9. Malin, Ashley & Riddell, Julia & Mccague, Hugh & Till, Christine. (2018). Fluoride exposure and thyroid function among adults living in Canada: Effect modification by iodine status. Environment International. 121. 667-674. 10.1016/j.envint.2018.09.026. 
10. Krysiak, Robert & Szkróbka, Witold & Okopien, Boguslaw. (2018). The Effect of Gluten-Free Diet on Thyroid Autoimmunity in Drug-Naïve Women with Hashimoto’s Thyroiditis: A Pilot Study. Experimental and Clinical Endocrinology & Diabetes. 127. 10.1055/a-0653-7108. 
11. Gier, Dominika. (2019). EVALUATION OF THE PREVALENCE IgG-DEPENDENT FOOD INTOLERANCE IN WOMEN PATIENTS WITH THYROID DISORDERS. 
12. Joshi AS, Varthakavi PK, Bhagwat NM, Thiruvengadam NR. Graves' disease and coeliac disease: screening and treatment dilemmas. BMJ Case Rep. 2014;2014:bcr2013201386. Published 2014 Oct 23. doi:10.1136/bcr-2013-201386

Celiac.com 04/24/2020 - Most of the time doctors don't know how celiac develops in one person versus another or why celiac develops at a particular time in someone's life. With 40% of the population that carry the genetic markers, what makes those of us that have it so special?

That is what researchers at Massachusetts General Hospital are trying to decide. They are looking for 500 children either in the womb or under 6 months of age with a first degree relative with biopsy-confirmed celiac disease for a research study. This is not something that involves medicine, but just an observational study.

They will monitor these children every 6 months to take blood samples and stool samples until the children are 5 years old. They may not need a blood sample every six months, you will have to look specifically at the protocol to know what is required. The best part is, the study can be done anywhere in the United States. Participants do not have to go to Massachusetts to complete the study. Scientists will coordinate with your pediatrician or the parents to collect the proper samples. The scientists are looking at the microbiome to see if they can find signals within the microbiome of the precursors of celiac disease.

Much of the research on children and the development of celiac is contradictory. Some studies say breast feeding, delaying introduction of gluten until after 6 months, and a vaginal delivery are protective against the development of celiac disease in genetically prone individuals. Other studies say none of those things are true. So, the science is undecided on what genetic factors are causing celiac.

Because the microbiome is so elastic - it changes slightly with every meal you consume - it is a great snapshot of a person's health and nutritional status at any given time. The theory is that if a child develops celiac over the course of their first five years, researchers can go back to evaluate their microbiome to see if there are markers or indicators that celiac disease was starting. 

As I was talking about clinical trials yesterday, this is a great one to consider for a child. It doesn't involve a medicine, just watching someone grow and change.

Here is a link to the study for those that may qualify. Also, results of this study may begin to seep out shortly.

Visit their site for more info.

Celiac.com 04/01/2020 - Some people with celiac disease have symptoms even when they follow a gluten-free diet. Even though the most likely culprit in these cases is cross-contamination, or some other type of food sensitivity, some people have suggested that the problem may have to do with certain foods that trigger a celiac-like gut reaction. But, is that really true? 

A few years back, a team of researchers set out to figure out if such symptoms might come from either cross-contamination with gluten-containing foods, or cross-reactivity between α-gliadin and non-gluten foods eaten as part of an otherwise gluten-free diet. 

Researcher Aristo Vojdani, and colleagues with the Immunosciences Lab used ELISA and dot-blot to gauge the reactivity of affinity-purified polyclonal and monoclonal α-gliadin 33-mer peptide antibodies against gliadin and other food antigens often eaten by celiacs who are following a gluten-free diet. 

The team also assessed the immune reactivity of these antibodies with various tissue antigens. According to their results, these antibodies to cow’s milk, milk chocolate, milk butyrophilin, whey protein, casein, yeast, oats, corn, millet, instant coffee and rice, triggered significant immune reactivity. 

These results seemed to confirm that certain foods might be "cross-reacting," and triggering celiac-like symptoms in celiac patients on a gluten-free diet.

Questions About Vojdani Methodology

Taken at face value, the 2013 Vojdani study would seem to support the idea of otherwise gluten-free foods being cross-reactive, and causing celiac-like symptoms in people with celiac disease.

However, a 2019 review of that study by Christina L. Graves Ph. D, with the University of North Carolina at Chapel Hill Department of Biology, casts serious doubt on the methodology and findings of the Vojdani study. Ms. Graves' review, 19 Gluten Cross-Reactive Foods Busted Myth, appears at Paleofoundation.com, and she really highlights the flaws in the Vojdani study, and they are many.

Also, for something as simple as corn zein, "...celiac disease-specific antibodies don’t appear to cross-react to corn zein. The rice/gluten cross-reactive study cited by Vojdani & Tarash 2013 is specific for IgE mediated responses, whose dominant epitopes are different than the epitopes recognized by anti-α-gliadin antibodies presented in this study.

Graves takes care not to step on too many toes by noting that she is only seeking "to highlight the importance of being rigorous with our own research and reporting within the ancestral health community and to highlight that the rationale for the avoidance of some foods may have arrived through the inflated interpretation of inconclusive results."

With respect to the types of tests used to show cross-rectivity, Graves adds "The Celiac Disease Center does not currently recognize Enterolabs or Cyrex stool tests for cross-reactivity (or for celiac disease for that matter). [20] Simply, they are “not sensitive or specific enough” and just haven’t held water (yet) in the scientific arena."

Graves may tread lightly in her comments, but her methodical take down of the Vojdani study casts serious doubt on the study's methods, and conclusions, about cross-reactivity. Moreover, there has been no substantial confirmation of the Vojdani findings since the original publication, and there has, so far, been no credible rebuttal to Graves' finding regarding the study.

Thus, it is sensible to conclude that Graves is correct, the Vojdani study methods and conclusions are seriously flawed, and that there is no good data to support to claims that cross-reactivity in certain non-gluten foods can trigger celiac-like symptoms in people with the disease.

Put simply, until we get more convincing study, with solid evidence to the contrary, there is no good evidence to support the idea of non-gluten cross-reactivity in people with celiac disease.

• Read 19 Gluten Cross-Reactive Foods Busted Myth by Christina L. Graves Ph. D at Paleofoundation.com.
• Read the original Vojdani Study in Food and Nutrition Sciences 04(01):20-32 · January 2013.

Celiac.com 03/20/2020 - Food hardly ever entered my mind. In the past, I practiced intuitive eating. If I was hungry for a burger, I had a burger. Pasta, then I had pasta. I felt what I wanted and I got it. Simple as that, without stress or worry. Most people are accustom to eating this way, but things changed dramatically this past week, with rapid rise of COVID-19 cases. Intense emotions are swirling around buying food. Shelves are empty and people fear they won’t be able to buy the essentials, let alone their favorites. Please stop worrying, I have you covered. You see, I am a celiac. 

Life changes with the onset of disease. Celiac disease was my game changer because it thrust me into a life of food preoccupation. Celiac disease is an autoimmune disease triggered when people eat gluten (a protein found in wheat, rye and barley). Ingestion of gluten causes an immune response. In essence, the body begins an attack on its small intestine and prevents nutrients from being absorbed. If left untreated, the symptoms are terrible, but if a gluten-free diet is strictly followed, those same awful symptoms go away. Notice the word strictly. Without strict adherence, the symptoms come right back. 

It is the strictness of the gluten-free diet in the life of a celiac that makes food so central in our lives. Running errands and grabbing quick fast food is out of the question. Grocery shopping requires an hour reading every label because gluten hides in everything. With celiac disease, food goes from a thoughtless pleasure to a chronic worry. When you leave your home, there might not be food available that you can eat.  

Herein lies the overlap with COVID-19. You have to think strategically about food rather than relying on it being available. People with celiac cannot assume restaurants or dinner parties will have food free of gluten, nor should we. It is our responsibility to feed ourselves in a way that does not harm our bodies. I regularly bring my own food to the mall or to a potluck. Popping my own popcorn and smuggling it into the movie theater is my move. All of this gluten-free preparation takes time and necessitates the sacrifice of other activities. Sundays involve hours of food prep for the week. I think about my upcoming plans and I strategize. On the go means tuna pouches, dried fruit and protein bars. Time at home allows for fresh fruit and vegetables. I think about where I am, what I have, and how to eat in the healthiest way given the combination of the two. The point is, I think about it. 

What I have learned as a celiac is that food is not easy and it certainly is not automatic. There are even times when it is unavailable. To cope, I am flexible and make adjustments within the confines of my dietary requirements. It seems hard at first. It is normal to be angry or despairing when what you want to eat is no longer an option. But the mind’s greatest achievement is to accept what cannot be changed. It seems we are destined to live under these strange circumstances for the foreseeable future. In this new world, restaurants might close and the grocery store might not be stocked. It’s okay. Embrace the world of canned and frozen goods, experiment with sauces and spices, and spend time thinking about how your food can be different and healthy. It’s a challenge flung your way. Treat it as such and you will learn to be grateful for what you have rather than sad about what you have lost. I coped with the loss of gluten in my delicious Chicago-style pizzas but discovered the joy of avocado on just about anything. You too will cope with what you are losing now, but maybe you will remember the deliciousness of canned peaches.