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Hello Scott, I did lose weight at the beginning of diagnosis and I know that it will take time to put on the weight I did lose. I think I have no appetite because this has been a roller coaster of emotions and a Big change on my body and its out of whack mentally and pysically. I think I am just depressed to be honest.  

It's easy to forget that it's not only the concentration of gluten in a given food item that's significant but also the total amount of gluten we consume over a period of time. This thing and that thing may meet the gluten-free requirement of not exceeding 20 ppm but if we eat enough of those things in a reasonably short amount of time it can have a cumulative effect because our bodies aren't given enough time to clear the gluten we have already consumed. Just curious. Did you know the fries were wheat breaded when you ate them?

Hi! I try to steer clear of dairy and I cut out oats at the same time I did gluten products. It may be that something I had recently that was labeled as gluten-free contained oats. I am just so confused as to why I didn’t react when I know I ate wheat flour (breaded fries) but then reacted to something else 9 days later. Maybe you’re right and that it was the accumulation of things. 

Welcome to the forum, @SamClaire! I am reasonably sure that after 9 days any danger of a single gluten exposure reaction would have been long gone. If in fact the reaction you are speaking of is due to gluten, it is more likely a cumulative effect of small amounts of gluten having crept into your diet over time. Perhaps some food product you have been using that was once gluten free is no more. Companies can and do change their formulations over time so it may be wise to take inventory of what is in your cupboard and what your are purchasing and check closely the ingredient labels and the allergen statements. It is also possible that the reaction you mention is caused by something else that resembles a gluten reaction. Are you still consuming oats and dairy?

Hi, I’m brand new to this website but I was diagnosed 14 years ago. I am just now getting over a particularly bad flare up that lasted a full 7 days. I’ve been trying to figure out what caused it and all I can think of is I know I accidentally ate gluten (specifically wheat flour) 9 days before my symptoms started. Could it have taken 9 days for my symptoms to start? I can’t think of any other culprit it could’ve been. Thank you!

Thanks Scott!

Products can be both gluten-free AND made in a facility that produces wheat products. Why are you assuming that this product isn't gluten-free?

No, small amounts of cross-contamination won't instantly cause villi damage. In fact the protocol for getting an endoscopy for celiac disease requires people to eat at least 2 slices of wheat bread per day for 2 weeks before the procedure, otherwise any damage done might not be detected. Small amounts of gluten on a daily basis, however, may lead to severe damage over time, as it would have a cumulative effect. Some celiacs, and people with DH, have intense symptoms with even a single exposure with a trace amount of gluten, while others have little or no reaction to a lot of contamination (although their health risks from prolonged exposure are the same).

It sounds like you're navigating a challenging and frustrating situation, and it's understandable why you'd seek clarity. Based on what you’ve described, it’s possible to have gluten sensitivity without the hallmark villous atrophy seen in celiac disease. This condition is often referred to as non-celiac gluten sensitivity (NCGS). Unlike celiac disease, NCGS does not cause the autoimmune damage to the small intestine that’s detectable through a biopsy, and it won’t show up on standard celiac blood tests. However, symptoms like gastrointestinal distress, changes in stool, and even mood issues, such as anxiety or feeling down, have been reported by others with gluten sensitivity. Your experience with mucus in your stool, stool consistency changes, and mood correlation with gluten intake could be indicative of NCGS. The low levels of zinc and folic acid you mentioned might also hint at some malabsorption issues, even if the root cause isn't celiac disease. It’s worth noting that other conditions, like irritable bowel syndrome (IBS) or a sensitivity to FODMAPs (a group of fermentable sugars in many foods, including wheat), can sometimes mimic gluten sensitivity. Since your symptoms seem to improve when you avoid gluten, it may be worth continuing a gluten-free diet to see if it helps you feel better overall. You might also consider working with a dietitian who specializes in gastrointestinal health to rule out other potential triggers and ensure your diet is balanced. If you’re still struggling to get answers from your doctor, seeking a second opinion from a gastroenterologist might also help you move forward. You're not alone in this, and I hope you can find some relief and clarity soon!

Gluten-free oats can cause villous atrophy in people with celiac disease who are sensitive to oats (~10% of celiacs). While oats are naturally gluten-free and often safe for most individuals with celiac disease, a small percentage of people with the condition are sensitive to avenin, a protein found in oats that is structurally similar to gluten. For these individuals, consuming oats—whether labeled gluten-free or not—can trigger an immune response, leading to intestinal damage, including villous atrophy.

This thread is confusing. Apart from any kind of oats, whether gluten free, certified gluten free or just regular oats, you should have been consuming plenty of gluten for a period of weeks leading up to the day of the endoscopy. Consuming wheat products would have been the best choice as wheat is the grain highest in gluten. Once you begin to remove gluten from your diet, inflammation in the small bowel begins to subside and healing of the mucosal lining starts. If enough healing happens before the egd/biopsy there may be no damage to see and the procedure would have been invalid. Recently updated "gluten challenge" guidelines call for the daily consumption of at least 10 g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks leading up to the day of the procedure.

Dear forum members, I’m still trying to find out whether or not I actually have gluten sensitivity or not. Recent blood test showed a slightly elevated Bilirubine and Lipase but an abdominal ultrasound showed no problems with the liver or pancreas. My zinc and folic acid where both too low. When I eat gluten I get a lot of mucus with my stool and most of the times it’s quite thin. As soon as I take gluten away from my diet my stool becomes normal. I also have been quite anxious and little bit down for quite some time now and it seems to correlate with my gluten intake. The problem is that my colonoscopy showed no damage to my gut and my blood test for celiac always come back negative. Can you be gluten sensitive without damage to your villi? (I believe that’s what is normally seen in celiac disease). Thanks for helping! I don’t seem to get anywhere with my doctor so I thought I’d give this forum another try.  

Welcome to the forum, @robingfellow and @Mr-Collateral531, I also had to have my gallbladder removed in emergency surgery.  The gallbladder uses lots of thiamine vitamin b1 to function.   The gallbladder cannot secrete bile if it doesn't have sufficient thiamine.  Thiamine provides our muscles and glands energy to move and secrete needed enzymes and hormones.  The thyroid is another gland that requires lots if thiamine to function and secrete hormones.   Our brains, just thinking at a desk job, requires as much thiamine as our muscles do if running a marathon.   Migraines are linked to thiamine deficiency. Thiamine is the first of the eight B vitamins that our body needs. Thiamine can only be stored for three weeks at most.  Our thiamine stores can be depleted in as little as three days.  We need more thiamine when we have a physical injury (like recovering from surgery or fighting the flu), if we're emotionally stressed or traumatized, and if we're physically active.  Thiamine, like the other B vitamins, is water soluble and easily excreted in urine or most in diarrhea.  B vitamins are commonly poorly absorbed in Celiac Disease.  Thiamine and the other B vitamins need to be taken together because they interact with each other to make life sustaining enzymes.  Thiamine deficiency can affect individual organs.  Gallbladder dysfunction is connected to thiamine deficiency, as is hypothyroidism.    Migraines are connected to thiamine deficiency.  Gastrointestinal Beriberi (abdominal pain, vomiting, etc.) is a result of thiamine deficiency.  Tachycardia and fatigue are also symptoms of thiamine deficiency.   Thiamine and magnesium make enzymes that are essential for life.   Thiamine is needed to absorb certain minerals like iron.  Anemia and thiamine deficiency frequently occur together.  Thiamine deficiency can cause poor blood cell production (including low antibody production).   Thiamine interacts with other vitamins and minerals.  Vitamin D is not utilized by the body until turned into an active form by Thiamine. Thiamine is safe and nontoxic even in high doses.  High doses of thiamine correct deficiencies quickly which prevent further health deterioration.  A one a day type multivitamin is not sufficient to correct vitamin and mineral deficiencies that occur in the malabsorption of Celiac Disease.   The Gluten free diet is low in vitamins as they are not required to be enriched with vitamins lost in processing.  Supplementing with thiamine and the B vitamins boosts their absorption.   Helpful Reading: Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ Gastrointestinal Beriberi and Wernicke's Encephalopathy Triggered by One Session of Heavy Drinking https://pmc.ncbi.nlm.nih.gov/articles/PMC6739701/ P. S. Try a DNA test to see if you have any known genes for Celiac Disease before doing a gluten challenge.

Thanks for the reply ! I am asking because tomorow i have egd and nobody told me not to eat gluten-free oats… and i was scared that it could ruin my biopsy results… 

Yes, I would think that for the 10% of celiacs who can't tolerate oats it would cause villous atrophy just like gluten. No, it would not produce marsh 3b villous atrophy in a couple of days. Nothing will produce measurable villous atrophy that fast. It takes at least two weeks of at least 10g of gluten consumption daily (10g is the amount found in about 4-6 slices of wheat bread) to develop measurable villous atrophy and even then probably not 3b villous atrophy. Are you asking these questions in because you are considering taking on a gluten challenge?

Thanks for the awnsers i understand there is maybe system reaction but do they create or cause villious atrophy? And igmf you it them for example a couple of days di they instantly induce marsh 3b?

My gallbladder was at 94% ejection fraction according to my HIDA scan before surgery, when the "normal" range is considered to be between 30-80%, so the surgeon recommended removal because I had been experiencing severe chronic upper quadrant pain and even vomiting despite having a strong stomach. A biopsy after surgery showed intense inflammation suggesting my gallbladder was on the verge of bursting if I hadn't gotten it removed.   The last time my iron and vitamin d levels were checked post-gluten free diet they were in a normal range (I take 60mg iron tablets every other day, and vitamin D capsules daily) I do also take magnesium daily, specifically 400mg magnesium bisglycinate at night to aid my sleep since I try to avoid taking melatonin due to personal preference.   I'll definitely have to keep in mind the point about celiac possibly causing gallbladder problems, I'll probably wait until I can see a proper GI and get their input before I attempt to reintroduce gluten back into my diet that way any reaction I may or may not have can be properly assessed.

I have dealt with gallbladder issues on-and-off for about ten years now. I was diagnosed with biliary dyskinesia in 2016 but chose to keep my gallbladder. Then in July 2022, I was diagnosed with celiac disease. Your surgeon is partially right in that your gallbladder can definitely cause some of those issues. However, the flip side to the coin is celiac can cause issues with your gallbladder. It’s a lesser studied area of disease manifestation, but limited research has shown a correlation between celiac, gallbladder dismotility, and how a gluten-free diet can help increase the gallbladder ejection fraction. Which literally happened in my case. In 2016 my HIDA scan measured my gallbladder ejection fraction as 29%. Then in 2023 after going strict gluten free, my HIDA scan measured it as 100%. It’s not perfect. I get right upper quadrant pain from time to time still. But at least I got that piece of evidence for myself.  I haven’t found any empirical studies on it but I have a theory. The gallbladder stores your bile for digestion. When the food enters your small intestine, the cells of your duodenum secrete cholecystokinin (CCK). CCK is what tells your gallbladder to empty. It’s literally Greek for “bile sac move.” Since the duodenum is a prime location for epithelial cell damage in celiac, it seems very possible that this can alter production of digestive hormones like CCK. As the small intestine begins to heal it produces more CCK and therefore the gallbladder can once again function. If you care to share, why did you need to have yours removed? In regards to the low iron and low vitamin D despite supplementation, that is also common in celiac. I fought vitamin D deficiency for almost a year despite taking 5000 IUs a day. I don’t have anemia, but I know I can use more iron based on my last round of blood work. Best I can say is you need to right cofactors as well. My vitamin D level virtually stayed the same for three different blood tests all 12 weeks apart. One was even after taking the prescription vitamin D of 50,000 IUs once a week. Once again, something not all doctors seem to know, but a nutrient deficiency isn’t necessarily treated by just taking more of that nutrient. Vitamin D metabolism requires many cofactors and processes in the small intestine, liver, and kidneys. And iron metabolism requires many cofactors as well including vitamin D. The biggest thing is to find a supplement regiment that works for you. Do you take specific vitamins or do you take a multivitamin? How much iron is in the supplement you take? What type of iron is it? Do you take magnesium? Another big game changer for me was adding 450mg/day of magnesium supplements for about two months and then dropping to 200mg/day. I would take 250mg of magnesium aspartate at lunch time and then 200mg of magnesium glycinate around 7:00pm. Magnesium is a huge cofactor for both vit D and iron metabolism. And that’s just one. Zinc, copper, vitamin K, boron, vitamin B6, folate, vitamin B12, and vitamin C are all contributing cofactors to vitamin D and iron metabolism. But too much supplementing is also dangerous. I’ve also been through iron overload and zinc toxicity in my post-celiac journey. Once again, doctors just saying to do one thing without considering anything else. I hope this helps and if you have any more questions don’t hesitate to ask.          

Your doctor may or may not be well-informed about the issue you raise so I would not agree that he/she would necessarily be the best person to rely on for a good answer. The question actually raises two issues.  The first issue has to do with cross contamination and individual sensitivity as dublin55 alluded to. Oats and wheat are both cereal grains that are typically grown in the same areas, transported in the same trucks, stored in the same silos and processed on the same equipment. So, there is usually significant CC (Cross Contamination). With gluten free oats, there is some effort to separate these processes that would otherwise cause significant CC and "gluten free" oats should meet the FDA requirement of not exceeding 20 ppm of gluten. But this 22 ppm standard is not strict enough for more sensitive celiacs. "Certified gluten free" oats (and other food products are held to a stricter standard, that being not exceeding 10 ppm. But even that is too much gluten for some super sensitive celiacs and will cause a reaction. The second issue with oats has nothing to do with gluten per se but with the protein found in oats called "avenin". Avenin has a structure similar enough to gluten to cause a reaction in some celiacs. This is called "cross reaction" not to be confused with "cross contamination" discussed in the previous paragraph. So, for whatever reason, whether cross contamination or cross reaction, it is estimated that about 10% of celiacs react to oats.

Karen, that sounds really tough. You must find both RA management and your new gut problems extremely irritating to handle at once. Together with your pain relief you still experience ongoing bloating complications that drag on without a resolution. Of course visiting a doctor to obtain a proper celiac diagnostic evaluation becomes necessary when no formal diagnosis has been received. Your journey toward recovery has been lengthy yet it brings comfort to notice your progress during this time. This support group offers you valuable help because there are people experiencing the same concerns with you. Working through your issues will be easier.

Yeah, it’s tricky. I’ve seen a lot of mixed opinions too. Some folks can tolerate certified gluten-free oats without a problem, but others with celiac still react. Honestly, it really depends on your sensitivity. Your doctor would be the best person to ask about your specific situation.

Hi guys! Can we eat them an can they cause villious atrophy? I saw multiple articles about it an they have very different opinions… so what did your doctor told you? Thanks!

I can't edit my posts, but I forgot to note as well: I also had low iron and vitamin d according to my blood tests, despite already taking supplements for each

Hi @Soleihey, it looks like you are making great progress.  This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study:    

I've had symptoms of celiac disease since May 2022 (joint pain, severe migraines, digestive troubles, tachycardia, and hypothyroidism, fatigue) and couldn't figure out what was wrong, especially because I had no access to a doctor. In August of last year I tried a gluten free diet out of desperation and found all my symptoms clearing up! Especially the more of my diet I realized contained gluten and eliminated from my diet. I've even been able to maintain full-But just a couple weeks ago I had to have my gallbladder removed in am emergency surgery, and afterwards the surgeon suggested that a lot of my issues could have been caused by my gallbladder not working properly, but I haven't heard anything about that before. Any ideas? I don't want to try to reintroduce gluten without being certain it won't bring back my issues. It's already troubling enough to know I might have to reintroduce it to my diet just to be tested.

I can also report from personally trying it that while not tasting quite as good as Spam, it is still very good especially compared to other Luncheon Loaf options that may not be gluten free 

This article might be helpful--it would be a good idea for you to get tested for celiac disease BEFORE you go gluten-free.    

Good to know...here is the link to it: https://www.dollartree.com/celebrity-luncheon-loaf-7oz-cans/325190 and ingredients:

Yes, low IgA, even if it's just above the cut off at times, will affect the test results of any IgA tests. In your case it means that his scores would have likely been even higher if he had "normal" levels of IgA.

Hi All, I am on gluten free diet almost 1,5 year now and i have question regarding cross contamination.  If you are cross contaminated or unintentionally glutened for example  1-3 day with small stupid things like for instances you drank tea which does not have gluten free sticker) does this mean you will get almost instantly marsh 3b VA or any kind villious atrophy? Thanks!

Got so sick from the English muffins as well. I have had no problem with any of the gluten-free products at Trader Joe’s since I was diagnosed with celiac a couple years ago so I was so surprised when I got so sick on the muffins. It had to be the gluten in the muffins because there was nothing else to blame it on.

@Scott Adams Recently got blood work back and TTG antibodies went from 168.8 to 16.7 and deaminated gliadin was 22 (was not measured the first time). Is this a good start for an 11 month time frame? Just having a hard time with why my symptoms seemed to be flaring up again when my blood work has improved. 

I’ve been through something similar recently, and I know how frustrating it can be when nothing seems to work. Based on what you’ve described, it might be worth considering dermatitis herpetiformis, especially with the family history of celiac disease. Testing could give you some answers, and while online kits aren’t as reliable as a GP, they’re a good start if appointments are hard to get. I also found relief through medical cannabis for my eczema, at Releaf, a clinic in the UK that offers eczema medical cannabis treatment. They start with a low dose, adjust weekly, and track progress through online consultations.

Welcome to the forum, @Jaylan! Almost all of the symptoms and medical conditions you describe have been found to be associated with celiac disease. But they can also be caused by other things as well. There certainly is enough circumstantial evidence in your list of medical problems to warrant being tested for celiac disease. Ask your physician to order a celiac panel consisting of, at the very minimum, these two blood antibody tests: total IGA and tTG-IGA. Please do not attempt to limit your gluten intake before the blood draw is taken or you will invalidate the testing. Incidentally, celiac disease is often misdiagnosed as IBS.

Hi there!  I’ve recently been tested for celiac disease, along with other autoimmune diseases. My symptoms started back in 2018 with joint pain in my knees. Since then, it has progressively worsened. I now have joint pain in both knees, elbows, and sometimes my shoulders. The pain is almost unbearable. I feel so stiff in the mornings, and this stiffness can last the whole day. I also experience swelling and warmth around those areas.   Other symptoms include IBS (diagnosed at age 16), restless legs, chest pain, tiredness, miscarriages, bloating, and sharp pain on the right side of my stomach. In the past, I’ve also had problems with a vitamin D deficiency, and my serum folate levels recently came back very low.   My question is: How likely is it that I have celiac disease?    

I'd gets a blood test, also an endoscopy mate also colonoscopy also to determine if its inflammation via junk food or sugar also food allergy to wheat gluten and flour is hard to breathe through so don't work in industry with flour. also 6 weeks to eat gluten hurts but it will save your life if you want a payment plan id eat it for 6 weeks then test then cut it out for life to save your villi's because once they tear off cancer begins so you need eat gluten free so your intestines absorb nutrition also neuropathy  nervous system disabilities will kick in if you don't have diagnoses because it attacks the body's organs also nervous system gluten ataxia is horrible . plus, you get payment if do right way it won't kill you but keep fexofenadine on you after eating also 2 puffs inhaler to help you get through the process of diagnoses also mind over matter if you were going dye would have been first time you ate. also, there's no need for epi pen as inhaler if enough adrenaline to help open air ways. don't self-diagnose. 

Thank you for the information Trents!  

The Celebrity brand Luncheon Loaf (found at dollar tree, distributed by Atalanta Corporation) is gluten free according to the distributor. I emailed their customer service line for information on the ingredients, and they contacted the vendor and followed up with me that the "starch" ingredient I was worried about is corn and potato. It should be safe.

Welcome to the forum, @jimmydee! Celiac disease is an autoimmune disorder, meaning the consumption of gluten triggers a response by the immune system that causes the body to attack it's own tissue. Celiac disease has a genetic base that requires some kind of trigger for the genes to be turned on. We know that there are two primary genes responsible for providing the potential to develop celiac disease and we know that about 40% of the population carries one or both of these genes. However, only about 1% of the population actually develops celiac disease. So, that tells us that something more than just having the genes is necessary in order to develop celiac disease. Something must trigger those genes to wake up and produce the active disease. It's that "something" that we are struggling to understand and that is somewhat of a mystery. But there is a growing body of evidence pointing to the culprit being a disruption of the proper balance of microorganisms in the gut. Apparently, the microorganisms that live in our intestines produce chemicals that regulate the size of the openings in the mucous lining of our small bowel. A disruption in the healthy balance of this microorganic community causes an increase in the size of the openings in the mucous lining. This in turn allows protein fragments from the food we eat that are larger than normal to invade the mucous lining where they are detected as threats by the immune system. This is what is happening with gluten for those with celiac disease. The attack in the mucous lining of the small bowel by the immune system on these incompletely broken down gluten components causes inflammation and, over time, as we continue to consume gluten, it damages the mucosal lining of the small bowel which results in the loss of efficiency of nutrient absorption. This mucosal lining is made up of millions of tiny finger like projections that create an enormous surface area for the absorption of nutrients when healthy. The "wearing down" of these millions of finger-like projections due to celiac inflammation greatly reduces the surface area and thus the ability to absorb nutrients. This in turn typically results in numerous health issues that have a nutrient deficiency base. But the answer to the question of why there seems to be an epidemic of celiac disease in recent years may not be simple. It may have many facets. First, we don't know how much of this epidemic is real and how much is apparent. That is, how much of what we perceive of as a dramatic increase in the incidence of celiac disease is simply due to greater awareness and better detection methods? Celiac disease is not new. There is evidence from ancient writings that people suffered from it back then but they did not have a name for it. And it wasn't until WW2 that gluten was identified as the cause of celiac disease. Current thinking on what is causing imbalance in gut biology has put forth a number of causes including overuse of antibiotics and pesticides, environmental toxins, fluoridation of drinking water, preoccupation with hygiene and sanitation, and the western diet. https://www.celiac.com/celiac-disease/theories-on-the-growing-prevalence-of-celiac-disease-and-gluten-sensitivity-over-the-last-half-century-video-r6716/?tab=comments#comment-25345 All this to say that I doubt your UTI or the low dose aspirin had anything to do with the onset of your celiac disease. It was probably just coincidence unless the UTI was the stress trigger that activated the celiac potential genes. The onset of celiac disease an happen at any stage of life and many people report it following a period of illness. But what is interesting about your low dose aspirin theory is that aspirin is in a class of medications known as NSAIDs (Non Steroidal Anti Inflammatory Drugs). Scientific studies have shown that long term use of NSAIDs can damage the villous lining of the small bowel in the same way as celiac disease.  The other thing I wish to point out is that unless you have actual testing done for celiac disease, you can't be sure if you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms, the difference being that NCGS doesn't damage the lining of the small bowel. There is no test for NCGS, celiac disease must first be ruled out. NCGS is 10x more common than celiac disease. The antidote for both is a gluten free diet.

BRAND NAME: NOT BURGER PLANT-BASED PATTIES  A product I came across labeled gluten-free bought it when I got home I read the back ingredients further to notice that it says gluten with a line going through it u will see in the attached pics.     The label says down below that it is processed in a facility that also processes "WHEAT".  I tried to put this on the Gov. website as false advertisement but couldn't do it.  Maybe on here at least the word can get out to others not to purchase anything gluten-free without throughly reading the whole label....It won't let me upload 2 pics.  says to contact manager.   The products name is Not Burger    INGREDIENTS: Water, Pea Protein, Coconut Oil, Sunflower Oil, Natural Flavors, Bamboo Fiber, Less than 2% of: Methylcellulose, Dried Yeast, Rice Protein, Salt, Cocoa Powder Processed with Alkali, Psyllium Husk, Potato Fiber, Red Beet Juice Powder (color), Chia Protein Concentrate, Spinach Powder.   Manufactured in a facility that also processes wheat and soy.          MANUFACTURED FOR: The NotCompany, Inc, 438    Treat Avenue, San Francisco, CA 94110.

Let me start by saying that I am self- diagnosed Celiac. I didn't want to pay for tests, because I don't have health insurance and the doctor said I would HAVE to eat gluten for the tests and I am afraid it will kill me. I diagnosed myself by quitting dairy, sugar and gluten for a couple weeks and figured out the problem by process of elimination.  ANYWAYS.......here's why I blame "Aspirin low dose safety coated" for my Celiac Disease.  I started taking regular Aspirin for a couple weeks for back pain and decided to switch to low dose safety coated Aspirin because I thought a smaller dose was safer for regular use. Well about 3 days after starting low dose safety coated aspirin, I got a terrible UTI. I didn't know what to do (should have gone to doctor) I started taking cranberry pills and read Aspirin can cause UTIs, so stopped taking that. A week later, the UTI was getting worse but then my Dad gave me some probiotic pills and the next day I felt better, so I took those for a week and the UTI was gone. About a week later, I bought my family cake and pizza for a birthday party. I ate a whole bunch and there was some leftover the next day, so I ate a bunch again. Welp, that was my first Gluten attack. I was home alone and almost called an ambulance, my stomach was so full of gas I couldn't breathe, I was covered in sweat and thought I was having a heart attack.  Since quitting Gluten I haven't had the "gas attacks" or had the awful constipation that lasts 3 days. So I'm certain I'm Celiac and I absolutely blame low dose safety coated Aspirin, I think it's the time release binder that is the problem, because I was fine with regular aspirin, I was just breaking those into halves or quarters. Actually now that I think about it I may have even used the regular aspirin at other times in my life before that, just not the little low dose safety coated Aspirin, that's what I think caused it. What's weird is my Dad took the low dose safety coated Aspirin for years and years, for it's reported heart benefits, and he never got Celiac.  Anyways, I felt this was important to share, so they can find the cause of this disease, which seems to be affecting more people than ever before. At least Gluten Free Pizza exists, that's been my new staple food in my diet.         

Welcome to the forum, @Karen Chakerian, We need more information, please.   What homeopathic remedies or medications are you taking now?  Do you still have the blood pressure and other symptoms?  What is included in your diet currently?  Dairy? Oats?  Processed gluten free foods?  Vegetarian?  Other food allergies?  Do you take vitamins?  When gluten is removed from the diet, the body stops making the anti-gluten antibodies that are usually measured in blood tests used to diagnose Celiac disease.  To measure the anti-gluten antibodies, you would have to consume 10 grams of gluten (4-6 slices of bread or equivalent) per day for a minimum of 2 weeks or longer.   A DNA test which looks for the most common genes for Celiac Disease may be a less invasive avenue to pursue.  Has your doctor checked you for nutritional deficiencies? Glad you're here!

@SaiP, Insomnia is listed as one of the side effects of Loratadine.   Niacin B3 in the form Tryptophan, Pyridoxine B 6, Folate B 9, Cobalamine B12, Magnesium, and Thiamine B 1 are needed to produce the sleep hormone melatonin.  Insomnia can also be caused by low Vitamin D and low Vitamin A.   A strict gluten free diet can be low in essential  vitamins.   Gluten containing products are required to replace vitamins lost in processing and milling.  Gluten free processed foods are not required to have vitamins added.  White rice is not a good source of B vitamins.  Brown rice is little better.  Exposure to light (even grocery store lights) and heat (during transportation) can destroy B vitamins.   B vitamins are easily lost in urine and diarrhea because they are water soluble.  If you have had diarrhea longer than two weeks, you are probably low in B vitamins.  Fat based vitamins, like Vitamins D and A, can be low due to fat malabsorption in Celiac disease, too.   Damaged villa in Celiac Disease do not absorb B vitamins and fat based vitamins and minerals well.  Supplementing with essential nutrients while villi heal boosts the ability to absorb essential vitamins and minerals.  Vitamins are stored and utilized inside cells.  Blood levels are not accurate measurements of vitamin deficiencies.  You can have normal blood levels while having deficiencies inside cells.  The brain orders cells to release their stores so the brain and heart can keep functioning.  This results in normal blood levels, but vitamin deficits inside cells.   Your indulgence in a little bit of bread is providing some, but insufficient amounts, of vitamins needed to make sleep hormone melatonin while keeping your inflammation and histamine production high.   In addition to a B Complex, I took 1000 mg of tryptophan before bed to correct my insomnia caused by high histamine levels.  Correcting my Vitamin D level to between 75-100 nmol/ml helped as well.  Also Passion flower extract is helpful in falling asleep quickly.   Please stop eating gluten bread as this will keep your autoimmune response triggering and your antibody levels won't go down and your histamine levels will stay up as well.   Celiac is a marathon, not a sprint.  P.S. I wanted to reiterate that insomnia and weight loss are symptoms of Thiamine deficiency.  Benfotiamine is a form of thiamine that promotes intestinal healing.  Thiamine is water soluble and nontoxic even in high doses.  High doses are needed to correct thiamine deficiency. All mitochondria in cells utilize thiamine.  The World Health Organization says to take 500 - 1000 mg per day of thiamine and look for health improvement.  Diets that are high in carbohydrates like rice and gluten require more thiamine.  For every 1000 calories from carbohydrates, we need 500 mg more thiamine.  Thiamine is found in meat.  Few veggies contain thiamine. Can you rise from a squat without assistance?  This is the field test for thiamine deficiency used by WHO.  If you cannot rise easily from a squat you may be thiamine deficient.

Earlier, you mentioned the possibility of adding in sweet potatoes. Have you tried that? Have you tried sourdough bread? Some people with celiac disease claim they can eat sourdough without a gluten reaction. The fermentation process alters the protein somewhat.

Welcome to the forum, @Karen Chakerian! So, for the sake of clarity, you have self-diagnosed yourself as having celiac disease but are not officially diagnosed by medical testing. Is this correct?

I’m 70 years old and have RA for 25 years. I’d never had digestive issues or even heard of celiac until 2 months ago.  6 years ago I started having serious diarrhea, dropped what little weight I had,  became very exhausted, developed rapid onset blood pressure and other symptoms. I went to the doctor for an unrelated matter and even with my records he told me they have ‘pills’ for all those things; which I turned down and sought to deal with this with homeopathic remedies.  Mid October 2024 my guts hurt terribly and started to swell. My massage therapist asked about celiac and I started to do research on it. It absolutely fits all the symptoms so I’ve been gluten free since 2 days before Thanksgiving but the huge gut persists. Thankfully the pain and cramps are gone. I look like a 90# pregnant skeleton.  I’m exhausted and looking for some encouragement from the tribe. I have good days and bad. I know living with an autoimmune disease sucks but this is even worse than the RA. 

Hi guys. Apologies for the late reply. Many many thanks for the replies. Hi - I am eating both white rice and wholegrain brown rice, due to it being very difficult to just eat brown rice. In regards to histamine foods - I am taking 10mg loratadine to combat this issue, however haven't seen any positive results as of yet. I have noticed if I am on a strict gluten free diet for around 1 week, the insomnia instantly pops up, and I have to eat around half a slice of bread for it to stop. I am trying to lower this amount, however the insomnia is still present. I have searched these forums and the internet but there seem to be no solution to this issue. I thought if I gradually reduce from half a slice and a little less, the issue will be resolved. However this is not the case.

Would you also agree that being so close to the IgA deficient cut off is significant? We just have been told he’s not as just over into the not deficient category…   thank you so much for all the help so far, it’s been so helpful!

One study showed that up to 44% of first degree relatives also have celiac disease, so his odds of having it are quite high. Also, if he were not IgA deficient his celiac disease test scores would likely have been much higher because they were based on the IgA antibodies.

Statistically, the incidence of IBS and other bowel disorders is higher in the celiac population than it is in the general population. Still, I would take one thing at a time. There is significant reason to believe your son does have celiac disease and there is no nasty prep needed for that endoscopic procedure. Assuming that he does have either celiac disease or NCGS, it is likely that a gluten-free diet corrects his symptoms and there would be no need to pursue a lower GI and it's nasty prep.  I would also add that the immune system of a child his age is not mature. It's in flux. Because of this, celiac disease testing can yield erratic results. And I would also add that some experts believe that NCGS can be a precursor to the development of celiac disease. If this is true, there would seem to be transition phases. I hope you will keep us posted.

Thank you, I do feel the likelihood is high which is why I am reluctant to do a colonoscopy as I feel we will find the answer. Whatever the endoscopy says though and even if it were to be negative he will be going gluten free as the positive EMA has to mean something with symptoms and one parent coeliac.  But there is a niggling doubt as I try and make the right choice… I just want him to get better and be happy again! 

As the article mentions: EMA-IgA (endomysial antibodies IgA) Blood Test for Celiac Disease: tTG-IgA (tissue transglutaminase IgA) Blood Test for Celiac Disease: So the likelihood is very high he has celiac disease, and even if the biopsy results turn out negative, I would still consider a gluten-free diet.

Thank you. The borderline IgA deficiency  is something I was wondering. Basically my query comes about because he had been offered an endoscopy to check for coeliac but a colonoscopy to check for IBD. We are keen to go ahead with endoscopy but trying to decide on the colonoscopy and the likelihood of it being coeliac is what is aiding our decision. His inflammatory bloods are normal and so are stool tests. We basically are trying to decide the likelihood of being coeliac… If that likelihood is high then we are wondering whether or not to put him through the stress of the prep for the colonoscopy. Or see if the endoscopy confirms coeliac then decide after…  He has been eating gluten containing cereal plus toast… Then sandwich plus all snacks gluten! We are naturally a low gluten family as dad is coeliac. 

PS - I forgot to mention, was he eating a lot of gluten daily for 6-8 weeks leading up to all blood tests? If not, this can cause lower than normal antibody results.

Thanks. Now it all makes sense. So, it looks like he may be IGA deficient or on the cusp of it. So, the reliability of the tTG-IGA testing is dubious. Being that the EMA is positive, my money would be on him having celiac disease, especially with the symptoms he is experiencing. The next logical diagnostic step would be to have an endoscopy/biopsy done of the small bowel lining to check for damage. Has the physician mentioned this? Sometimes they are reluctant to do this on children. Please hear this: Before you attempt to put him on a gluten-free diet or even cut back on his gluten intake, make sure you aren't planning any more testing for celiac disease. Removing gluten from his diet will sabotage any future testing. From the way you spell "coeliac" I'm guessing you are in the UK so I realize there may be stipends and follow-up healthcare benefits available to your son if there is an official diagnosis of celiac disease. But I also understand it can take many months to get a procedure in place with the backlog in your healthcare system.