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@Heatherisle, I'm so happy that your daughter had her B12 checked! B12 needs all the B vitamins to work properly.  A B Complex should be taken to ensure there are plenty of B vitamins to allow B12 to function properly.  It's very rare to have only one or two low vitamins in Celiac Disease.  B vitamins are water soluble, so any excess is easily excreted in urine.  Tingling in feet and hands is symptomatic of deficiencies in B vitamins like thiamine, Pyridoxine, and niacin. September 19 2025, "Your daughter needs to be checked for Vitamin B12 deficiency as soon as possible!   The nitrogen compounds in anesthesia can precipitate a B12 deficiency resulting in severe depression.  Please have her checked immediately! The nitrogen compounds in anesthesia (both gas and injected anesthesia) bind irrevocably with the Cobalt in Cobalamine Vitamin B12.  This precipitates a B12 deficiency in people with a low B12 level.  This can happen immediately, within days or weeks or months depending on B12 stores.    I've had medical procedures that required anesthesia and been struck down by deep dark depression and uncontrollable crying immediately, and also within weeks of the exposure.  My doctor put me on antidepressants which only made things worse.  Antidepressants don't correct a vitamin deficiency.   Please have her checked for B12 deficiency as soon as possible!"  

I'm so glad your daughter got her B12 level checked at last!  

Hi  Daughter finally had her B12 checked and her level was 30, normal range 180-200 so GP has prescribed medication for 4 weeks then further blood test so that probably accounts for how awful she’s been feeling recently. Folate was 2.2 just below the range of 3.0 - 20 so will need folic acid. Think iron levels were borderline but don’t know the numbers. Not sure if it was Ferritin levels they did. History of haemochromatosis in family , my husband has it and other daughter is a carrier. She still has a few more blood tests to be taken including Vit D levels. Has had deficiency in that last year and had 6 month course as had back pain and tingling in feet and hands. Anyway thank you everyone for all your previous replies and help!!!!

I found some articles that illustrate the immune reaction to casein and gluten. Bovine milk caseins and transglutaminase-treated cereal prolamins are differentially recognized by IgA of celiac disease patients according to their age https://pubmed.ncbi.nlm.nih.gov/19290628/   Gliadin and Casein Metabolism: Synthesis of Gliadomorphin and Casomorphin and Their Biological Consequences https://www.researchgate.net/publication/397908713_Gliadin_and_Casein_Metabolism_Synthesis_of_Gliadomorphin_and_Casomorphin_and_Their_Biological_Consequences   Effects of milk containing only A2 beta casein versus milk containing both A1 and A2 beta casein proteins on gastrointestinal physiology, symptoms of discomfort, and cognitive behavior of people with self-reported intolerance to traditional cows’ milk https://pmc.ncbi.nlm.nih.gov/articles/PMC4818854/#:~:text=Results,lactose tolerant and intolerant subjects.   Casomorphins and Gliadorphins Have Diverse Systemic Effects Spanning Gut, Brain and Internal Organs https://pmc.ncbi.nlm.nih.gov/articles/PMC8345738/   Brain Opioid Activity and Oxidative Injury: Different Molecular Scenarios Connecting Celiac Disease and Autistic Spectrum Disorder https://pmc.ncbi.nlm.nih.gov/articles/PMC7407635/  

Ijmartes71 I  son't think you are crazy by any psycoligical s=defination but you are obsessive. you may have considerable brain fog  , a problem that affects celiacs and many other people. . With this obsession you have abd being braun dogged you arw not abke to take any advice people are giving you to help you. To take advice you need to reduce your anxieties abd think more clearly. .Stop taking your herbs for at least one week because some of them will have side ellectsif you take them too long. You can add them back if you don't notice any good changes. Be more careful about being strictly gluten free.  

Just to say that I too was hesitant to come off dairy products completely @dsfraley.  Milk, yoghurt and soft cheeses definitely caused bloating.  This bloating gave me rib and pelvic pain, and I remember  the pain was so horrible at times it was almost a sick feeling., kind of like the sort of aches you get with flu.   Milk, yoghurt and soft cheeses also gave me diarrhea, but I noted I could still eat small amounts of hard cheese like cheddar without any issues. Re: milk, my gastroenterologist told me at that time that I could just by lactofree products, and should be fine, but when my gut was still very damaged they went right through me regardless. Thankfully I am able to tolerate milk very well again, although I have noted that too much of it can have a slightly laxative effect. The other thing that made me feel off were heavy iron supplements, which contributed to bloating and diarrhea.  In the end a GP told me to take ferrous gluconate, which is a much gentler supplement, with water an hour before breakfast in the morning.  That was helpful.  If your son is supplementing  (which needs to be under medical supervision as too much iron can cause issues) Floravital fruit syrup is another alternative, but make sure you don't buy Floradix as it contains gluten. Lastly, all oats, soya products and certain pulses also made my stomach sore.  Apart from the oats (which need to be certified 'pure' aka gluten free ones) I was able to eat these things again some months after adopting a gluten-free diet. I would say keeping a food diary might be worth a try, noting any negative symptoms following eating.  Patterns start to emerge which might otherwise be difficult to identify.

Yes, that is the suggestion.

Anyway, I have no problem with grass fed milk other than the price.  Maybe I should move to Ireland or New Zealand.  They're the only countries that don't feed grains to their cows to increase milkfat and milk volume. A side note: I just came back trom the vascular surgeon about the scan of my carotid arteries done last week.  A year ago I had over 90% stenosis in the right artery and 80% in the left.  Tcar procedure done in the right with a stent.  The results today were right side downgraded to Moderate stenosis and the surgeon did not expect to see as much improvement on the left. (untouched). I must be doing something right.  Recheck in six months.   Mucosal reactivity to cow's milk protein in coeliac disease This paper proves that cassein is the protein in cow's milk is the trigger but the study did not differentiate as grass fed milk.  I haven't found any studies specific to grassmilk. The study does not differentiate alpha or beta cassein.  Google says: some clinicians speculate that grain-based proteins could potentially pass into the milk, though scientific studies typically find no detectable gluten or gliadin fragments in bovine milk regardless of the cow's diet. So given alpha cassein as the trigger, grass fed A2 cassein; thought to be easier to digest and less likely to trigger the specific inflammatory pathways associated with standard commercial dairy; plus the omega 6:3 ratio of grain fed milk is 5.8:1 vs grass fed ratio of 1:1, grass fed milk is less inflammatory.  

Thank you all. Regarding dairy products: I think we are getting to the point that we are ready to try anything, but of course hesitant to cut this out entirely too as he's still a 9 year old and adjusting to a diet missing other foods he's used to. We have already kept him from milk (which he loves) to not overdo the dairy, but complete elimination will be tough. I have heard that the milk/casein association has more to do with its effects on an already damaged gut, such that it is more of a problem when healing and not long term: is the idea/suggestion proposed here that casein is triggering the same immune reaction as gluten would (which is a different matter)?  

Leople with celiac disease have differebt levels of sensitivities to gluten. Some react to tiny amount of gluten in the environment, others.Others only react only to larger amounts as in their food, such as cross contamination. If you are strictly on a gluten-free diet you may already have figured out whether you are more or less sensitive to gluten.  There would be gluten in the air in a bakery but not in a fast food place where they don't cook with gluten flour. Pay attention to how your body feels  if you spend some time in a place that has a job opening. Good Luck!

This is a general article that may be helpful:    

@Wheatwacked, all milk, whether from grass fed cows or grain fed cows contains casein. It makes up about 80% of the total protein in cow's milk. Do you need to elaborate on this statement?

OMG THANKYOU thats like written gold right there that you sent! 

Diffently going to ck out, my sibo is bloating me again.I can actually feel my organs on my left move.Im seeing my pcp this morning Ill bring it up.I do have appointment with reg dietitian but not til June which was found on here.Its frustrating because its like a life switch on celiac when menopause hits, tolerance level is zero. This is why im im concerned about precautions not just consumption. 

I can drink grass fed milk but commercial milk gives me heartburn from the cassein.  Brine fermented pickles can help establish lactobacillus in his gut.  They provide lactase to break down the lactose.  Vinegar pickled pickles do not.  inegar generally suppresses Lactobacillus by creating an acidic environment  that is inhospitable to the beneficial bacteria.  Organic pasture fed yogurt is good.  Some no fat brands of yogurt use various gums to replace the fat and these can cause a Celiac discomfort.   Vitamin D, Thiamine, Iodine, Choline are some of the vitamins that are deficient in the western diet. Because of malabsorption from the Marsh 3 damage Celiacs are more deficient. Try to choose vegetables low in omega 6. Yes there is hope.  It does take some time to heal the damage  My son was diagnosed when he was weaned as an infant.  He grew up to be a proffesional ocean lifeguard.

Lactose intolerance is not necessarily to problem in the celiac community. Intolerance to the dairy protein casein can be the culprit as it is similar enough to gluten to cause cross reactivity in a fairly significant element of the celiac population. Oats and dairy are common cross reactors in the celiac community. Eggs, corn and soy are also common cross reactors but oats and dairy are the two big ones.

Thought I'd leave you the references: Hiding in Plain Sight: Modern Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC8533683/ "The early symptoms of TD are non-specific and may be easily attributed to any number of disease processes. Unrelenting or uncharacteristic fatigue, changes in mood with a tendency towards hyper-irritability and mood lability are common [4]. A sense of mental fuzziness and subtle decrements in memory are often reported, along with loss of appetite, sleep disturbances and/or gastrointestinal (GI) discomfort and dysmotility. Food intolerances and vomiting may develop as the deficiency progresses. Experimental [5] and case literature [6] suggest GI discomfort and dysmotility may be more prevalent early indications of TD than currently appreciated. A form of GI beriberi has been identified but is under-recognized [7]." and... Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/  

Thank you for these thoughts, Knitty. Trents: Yes. I would say we are taking it relatively light on his belly because it's been upset, so no heavy/excessive dairy, but he has had some cheese here and there. Not high quantities, however, and tests were negative for lactose intolerance.

Is your son still consuming dairy?

I found some information that may be helpful to you. https://www.nccih.nih.gov/health/echinacea#:~:text=However%2C some people have allergic,for short periods of time. And... Role of Echinacea in the management and prevention of acute respiratory tract infections in children: A systematic review of the evidence https://pubmed.ncbi.nlm.nih.gov/41234257/   Have you been checked for nutritional deficiencies?  Vitamins are all natural.  They are found in food.  With Celiac disease, we may not absorb sufficient quantities needed.  We cannot make vitamins, so we need to get them from foods and supplements while we're healing.   Have you been checked for nutritional deficiencies?  Ask for a Erythrocyte Transketolace Activity Assay.   One of my favorite vitamins is Thiamine in the form Benfotiamine.  It has really improved my gastrointestinal health.  I took Benfotiamine to help get rid of my SIBO.  Thiamine (Benfotiamine) help keep the SIBO under control. Dietary Vitamin B1 Intake Influences Gut Microbial Community and the Consequent Production of Short-Chain Fatty Acids https://pmc.ncbi.nlm.nih.gov/articles/PMC9147846/ Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/

Welcome to the forum, @dsfraley, I recognize those symptoms as being related to Thiamine B1 deficiency, Gastrointestinal Beriberi.  I've had Gastrointestinal Beriberi and my doctors sent me to a psychiatrist.  It's not in ones head.  Thiamine deficiency covers all the symptoms you've mentioned.  With such a high Marsh score, correction of nutritional deficiencies is extremely important.  Thiamine deficiency is the first to manifest because thiamine stores run out quicker than other vitamins.   Ask your doctor for an Erythrocyte Transketolace Activity Assay as soon as possible!  Gastrointestinal Beriberi is under recognized by doctors.   Thiamine can be administered by doctors by IV.  Thiamine is safe and nontoxic even in high doses needed to correct thiamine deficiency and gastrointestinal Beriberi.  Because thiamine is safe, there is no harm in trying Thiamine if only to rule Thiamine deficiency out.   Correction as soon as possible is important as symptoms can increase in severity and become life threatening.  

Welcome to the forum, @MoniqueCham, What a challenging journey you've had!  Like you, I studied nutrition, but I earned a degree in Microbiology because I wanted to understand what essential vitamins and minerals were doing inside our bodies.   I've come across some information that may be of interest to you.  I'll post links below.  On my journey, I suffered from malnutrition due to the malabsorption of Celiac disease.  I regained my health by supplementing with essential vitamins, especially Thiamine B1.  Thiamine is needed by every cell, so a low level of thiamine can cause many problems over time.  I was put on some medications that aggravated my thiamine deficiency.  Many medications can cause interactions with vitamins resulting in deficiencies. Methotrexate causes folate deficiency, but can also cause thiamine deficiency because folate and thiamine share some of the same cellular transporters.   Notes on Folate Carriers, Anti-Folate Medications, and Thiamine Deficiency https://hormonesmatter.com/notes-on-folate-carriers-anti-folate-medications-and-thiamine-deficiency/ Thiamine deficiency can affect the health of the digestive tract.  Thiamine helps regulate the intestinal microbiome, and keeps SIBO in check.   Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Thiamine deficiency aggravates experimental colitis in mice by promoting glycolytic reprogramming in macrophages https://pubmed.ncbi.nlm.nih.gov/39890689/ Other organs can be affected by thiamine insufficiency.  The thyroid, gallbladder, liver and pancreas can be affected by low thiamine. High-dose vitamin B1 therapy prevents the development of experimental fatty liver driven by overnutrition https://pmc.ncbi.nlm.nih.gov/articles/PMC7988776/ Thankfully, I found that Thiamine in the form Benfotiamine can improve gastrointestinal dysfunction, as well improve liver function, and thyroid and pancreas health.   Benfotiamine can improve harm done by Methotrexate... Protective effect of benfotiamine on methotrexate induced gastric damage in rats https://pubmed.ncbi.nlm.nih.gov/33325753/ I was deficient in other vitamins.  I had skin issues that improved with niacin.  Perhaps niacin can help your skin problem if it comes back.   Response of generalized granuloma annulare to high-dose niacinamide https://pubmed.ncbi.nlm.nih.gov/6225398/ I'm very curious as to what you did to correct your nutritional deficiencies caused by refractory Celiac disease.   Refractory Celiac Disease: What the Gastroenterologist Should Know https://pmc.ncbi.nlm.nih.gov/articles/PMC11477276/ Tests for Serum Transglutaminase and Endomysial Antibodies Do Not Detect Most Patients With Celiac Disease and Persistent Villous Atrophy on Gluten-free Diets: a Meta-analysis https://pubmed.ncbi.nlm.nih.gov/28545781/ Hope this is helpful!

Hello all, I am writing here in hopes of hearing from the community as to whether the issues my son is facing are relatively common for individuals suffering from Celiac Disease. He is 9 years old, has the HLA2 gene, tested high for the gliadin IgG antibody (not the primary one, but still on Celiac panel), and biopsy of the duodenum came back as Marsh 3A classification. He has been dealing with severe nausea (no diarrhea/vomiting), muscle achiness, and flu-like malaise for over 2 months (and he has not been to school during this time -- he has been truly bed or couch-ridden, and to the extent that he can watch a show but does not want to read an easy book or play video games... which he loves). He had a very low-grade rolling fever of about 100.0 that the doctors wrote off because it was very low, occasional, and would only last a couple of hours at a time. Before the onset of this, he struggled with severe weekly migraines that sometimes led to vomiting, or at least not functioning until after sleeping it off (which we thought was associated with too much screen time in school). In any case, given those lab results above, he was diagnosed with Celiac Disease a few weeks back. He has been on a gluten free diet for 3 weeks now. When I say a gluten-free diet, I mean: we have sterilized the house as much as possible (e.g., throwing away everything from the kitchen and replacing unless it was stainless steel, and washing that thoroughly, eliminated all gluten-containing foods from the house except for a few pre-packaged snacks for our other child that she can eat outside of the house such as at school, etc.), we have only given him foods that are certified gluten free unless it was something like meat (not seasoned), have not given him oats (even gluten free marked ones) to be safe, we have purchased new products such as shampoo and toothpaste, etc. He does not have any food not prepared in our house. In other words, if there is cross-contamination, it must be at exceptionally low levels. Despite this, he: continues to have off and on bloating and nausea, continues to have flu-like malaise (though he hasn't had the occasional low-grade fevers for the last 2 weeks, struggles greatly to get to sleep and sometimes wakes up miserable in the middle of the night, cries frequently and constantly expresses how much he doesn't feel good, most often now describes a general feeling of "ickiness" that we cannot pinpoint. The gastro has nothing more to say other than stick with it; the pediatrician says we should try a rheumotologist (if we want) or a psychologist. The former seems unnecessary, and the latter suggests to me a complete lack of understanding of just how miserable he is (and I am highly disappointed by the suggestion and now frustrated with the pediatrician). And so I am looking for support/thoughts:  For those of you who have Celiac Disease, or know those affected by it, does this sound accurate? Is there hope? Or do you think we are on track of needing to get more opinions? Thank you.  

Thanks for your reply Scott! A long time ago I realized I didn’t fit neatly into uncomplicated celiac disease. Over the years I’ve been diagnosed and treated for SIBO, pancreatic insufficiency and diagnosed with Stage 2 liver fibrosis. I think all the complications occurred because of the refractory celiac disease. When I hit menopause my gut issues seemed to calm down and because I was stable I made the mistake of not following up with my gastroenterologist. Then other autoimmune problems flared and I tried the methotrexate. It worked like a charm for my skin condition… then my sigmoid colon ruptured. Strange but my autoimmune skin condition remains in remission after 6 months off the medication. We have a very long waiting list to get back into see my GI doctor… I was an emergency referral but am still waiting 6 months after the perforation. I need more surgery to fix a fistula that has formed and to reconnect my colon… I have a colostomy at present. I became a dietitian who specializes in bowel diseases but have never met anyone who’s had so many complications with celiac disease. I have a brother and son who also have been diagnosed. My mother had 4 autoimmune diseases including a vasculitis that eventually resulted in her death and it was my father who had the HLA DQ2 gene. Think I inherited some tendencies from each of them. Thanks again for your response… it feels a little lonely dealing with GI issues when I work so hard to remain gluten free.   

Thank.you both

Yes, unfortunately malt vinegar can definitely trigger a strong reaction in people with celiac disease. Malt vinegar is typically made from barley, which contains gluten, and unlike distilled white vinegar, it is not considered gluten-free. Even a small amount — especially if you’ve been strictly gluten-free for years — can cause a more intense reaction because your body is no longer accustomed to exposure. Many people report significant symptoms after accidental ingestion, including abdominal pain, diarrhea, fatigue, or flu-like feelings. You’re not alone in that experience. It may help to be especially cautious with salad dressings, chips, sauces, and restaurant foods, where malt vinegar is sometimes used.

A diagnosis of Refractory Celiac Disease Type 2 is a lot to absorb, especially if you feel like the severity wasn’t clearly communicated earlier. It’s understandable to feel shocked and frustrated. RCD Type 2 does require close specialist care, often with a gastroenterologist who has experience managing complex celiac cases, and sometimes coordination with hematology because of the immune cell changes involved. Focusing on nutrition is absolutely important — many people benefit from working with a registered dietitian who specializes in celiac disease to help address malabsorption, weight loss, and vitamin or mineral deficiencies. You’re doing the right thing by seeking information and support. Make sure you feel comfortable asking your care team direct questions about your biopsy results, treatment plan, and monitoring strategy — you deserve clarity and a coordinated approach.

I’m so sorry you’ve been through all of that — that’s an incredibly complex history. While methotrexate is widely used at low weekly doses for autoimmune conditions, it can, in rare cases, cause serious gastrointestinal side effects, including ulceration, mucosal injury, or even perforation. That said, a spontaneous sigmoid rupture from methotrexate at 15 mg weekly is extremely uncommon. In people with celiac disease — especially refractory celiac — there can already be underlying intestinal inflammation or altered mucosal integrity, which might theoretically increase vulnerability, but there isn’t strong published evidence clearly linking stable celiac disease to a markedly higher risk of methotrexate-related bowel perforation. Other factors such as concurrent inflammation, vascular compromise, infection, steroid use, or microscopic colitis may also contribute. It would be reasonable to review the case with a gastroenterologist familiar with refractory celiac and possibly a rheumatologist, and to report the event as a potential adverse drug reaction. I’d also be very interested to hear if others in the community have had similar experiences.

Yes,  I've reacted to malt anything . . . it does come from barley.  I'm super careful to avoid anything containing malt or even maltodextrin unless it's labeled from corn.

Having avoided gluten well for many years I think I may have had a salad with Malt Vinegar and it was one of the worst 'attacks' I have experienced. I just want to know if anyone else has been so badly affected by malt vinegar.  

Hi Florence- This forum has been a wealth of knowledge on supplements. I am always weary of brand names as well. What I found through Consumerlabs which independently tests for metals, digestive breakdown of supplements and if what the packages states is indeed what is in the product I have found the number one for super B complex is Kirkland and for multivitamin for Men and woman 50+ Natures made multivitamin for her as it gives the right amount needed for both men and women as the mens has too much. For Probiotics ALign came out on top the 5x and the one for bloating. Knitty Kitty provided me good supplement brands as well.

Hi all: I have had Celiac for 47 years. I have not seen much info on the following, and 3 of these  affect me. In case this info helps someone else, I offer the following: Gluten-like proteins is a topic I want to share, as they have added bad reactions to my Celiac condition.  Reactions can range from Gut discomfort such as Diarrhea, Nausea, Vomiting, and inflammation causing a feeling of being very warm to hot. The following are considered  Gluten-Mimicking Proteins: Corn (Zein protein) (this causes inflammation with me). Millet Panicin protein) Sorghum (Kafirin protein).  Potato (Patatin protein, is NOT considered a Gluten-Mimic, nor is Oats (Avenin) but they do cause reactions in some Celiac people... I eat potato and I vomit, and get diarrhea. gluten-free Oats causes me to have Nausea, and Corn causes me  Inflammation.  I hope this helps someone.  Wishing the very best to all.   Florence.  

@Margaret Wheatley Thank you and welcome to the forum.

I have been diagnosed with Refractory Celiac disease Type 2. Which is quite a shock because my Gastroenterologist has been performing gastroscopy & colonoscopy's - 4 in 2025 & a gastroscopy on the 20/3/26 and they didnot tell me how bad my Celiacs disease is and has been. It was my haematologist that checked more of my symptoms and came up with the result. So I am trying hard to get some nutrition into my body. All of this info on supplements and nutritional diets is very helpful.  Regards Margaret. 

Im very big on nateral remedies and just read that my go to herb is a no no and was wondering if factual or fiction. I read on Google, I know don't read or take to heart, however it stated that Echinacea isn't good for those with compromise autoimmune because it can cause inflammation. Has anyone else heard of this?Ive been battling sibo so wondering if any connection though haven't been religious on my vitamins these last several months because of testing ect.Sibo medications im allergic,the last few prescribed. Gi  dr dropped me but took me back.Im frustrated too but its the autoimmune part .

I am curious: What was your initial level at? How many daily IUs were you taking via supplements and for how long? What did your level drop to? How many daily IUs are you taking now via supplements? Regards, Known1

Ive been dealing with skin issues and been told it was staph because I was employed as a bus driver during that horrid time that im still actively healing from currently years later. Biopsies they don't want to say its inconclusive they say.Their creams don't work.I do notice Yarrow Pom from Doterra works but of course thats expensive.Prayers

Welcome to the celiac.com community @MoniqueCham! Celiac disease damages the villous lining of the small bowel but, as far as I know, doesn't affect the underlying smooth muscle tissue of the bowel.

I am monitored for this value of Vit D.  I kept going down so the Vit D had to be increased.

I was diagnosed with celiac disease 40 years ago and lymphocytic colitis 20 years ago along with refractory celiac disease affecting mid jejunum to mid ileum (diagnosed using a capsule endoscopy). My antibodies to tissue transglutaminase were normal on a strict gluten free diet. Both the lymphocytic colitis and the refractory celiac disease responded well to entocort. I have a number of autoimmune conditions including systemic granuloma annulaire (a skin condition) which was treated with methotrexate. I was on a low dose of methotrexate (15 mg once a week with folic acid every day when not taking methotrexate). In 5 months my sigmoid colon ruptured. Pathology reports show that I had significant necrosis of my sigmoid bowel due to no known cause and a large hole in the bowel. My surgeons felt that the methotrexate may have caused the damage and rupture to my bowel (1 in a million chance). My question is has anyone experienced similar issues with methotrexate given that the integrity of our intestines may be compromised in celiac disease?

Hello, I'm I crazy, nieve, or atomistic? I reached out to my former pcp of 25 years on the medical app today.Reading on the National Library of Medicine 75.6  physicians don't know celiac disease.To be fair he is primary and with the lack of knowledge, I did reach out because he was my Dr for 25 years.I do prefer his app than the one I currently have that was ignite of the disability celiac circus name chaser thanks to the one that  I currently have Since May 31, 2025 to present.

@cristiana, I'm thinking the intensity of our response to the same amount of gluten can vary from time to time. Our bodies are a dynamic entity. 

I'm going to try Jersey Mike's soon--we have one nearby. Thanks for sharing!

Hi @trents Two things can happen:  1/ For a very small gluten hit, I will get a slightly sore stomach for a few days, maybe a day or two following the glutening, and (TMI warning) maybe slightly loose BMs with mucus  for a couple of days.  2/ For a substantial glutening, and thankfully it's only happened once in recent years,  I get bad chills, followed by vomiting, and my heartbeat is all over the place and I can hardly stand.  It's pretty extreme.  That happens within about 2 hours of eating the gluten.  I might feel slightly dizzy for a couple of days after the glutening episode. Interestingly I've just been out to a cafe which hitherto has made a big thing about how their french fries are cooked in a separate fryer.  I shared some with a friend and they were served with chilli sauce, jalapenos, cheddar cheese and fried onions.  Definitely not health food!  Anyway,  I'd eaten half when I realised I'd not checked the menu to ensure that this dish is still gluten-free - and it turns out it isn't!!!  They've changed the ingredients and the fried onions are now cooked with wheat.   I came home expecting to feel dreadful as I had no idea how much gluten I have consumed but so far if anything I feel just little queasy.  I think I'd have thrown up by now had there been a lot of gluten in the onions.  

It might be wise to start him on small amounts and work up to 10g. Monitor how he reacts. Some people simply cannot complete the gluten challenge because it makes them too ill. By the way, you can buy powdered gluten in health food stores, at least here in the states you can. With a food scale, it would be easy to measure the amount being consumed in a day. I'm not sure what the intensity of reaction to gluten tells you about what's actually going on with regard to celiac disease. I mean there are some celiacs like me who don't seem to react to minor exposure amounts but who get violently ill with larger exposures. Then there are celiacs who get some kind of reaction to even the tiniest amount of exposure but don't necessarily get violently ill. And how the reaction manifests itself is very different for different people. Some, like me, experience emesis and diarrhea. Others just get brain fog. Others get joint pain. It's all over the map.

That's interesting - that's a lot of gluten! I'll be very curious to see how my son responds to the gluten. In some ways, I guess having a strong reaction would tell us something? It's tough navigating this as a parent and having it be not so clear cut ;\

Welcome to the celiac.com community, @JamieAnn!  Glad you had a good experience at your local Jersey Mike's.  In the town I live in all we have is Subway and they stopped offering gluten free buns. So, I can't eat there anymore. Oh, more recently there has come to our town a Firehouse sub shop and, according to the Internet, they offer gluten free buns but I haven't tried them yet. For super sensitive celiacs, cross-contamination in handling at these sub shops may also be a problem.

Today, in Uniontown, PA,  I ordered Jersey Mike’s Italian sub on gluten-free bread (paid extra for gluten-free) for my brother who hasn’t had a sub in yrs (neorological prob if consumes). He’s so happy! Their gluten-free bread is from a company that specializes in gluten-free products, some of which I’ve enjoyed before, so figured a sub would be good! Jersey Mike’s fast-food restaurant chain

Thank you @knitty kitty x

Most recent gluten challenge guidelines call for the consumption of at least 10g of gluten (about the amount in about 4-6 slices of wheat-based bread) for at least 2 weeks.  When celiacs have been on gluten free diets for long periods of time, they often find that when they consume a good amount of gluten, they react much more strongly than they did before going gluten free. They have lost all tolerance to the poison they had when consuming wheat products regularly. That is certainly the case with me. A couple of years ago I accidentally consumed a wheat biscuit my wife had made thinking it was a gluten free one and it made me violently ill. So, I mention that as I don't know if your son has started the gluten challenge yet.

Will definitely keep you posted. We live in Japan and will fly to Australia for the endoscopy end of April so until then, for the next ten weeks, we will just start adding gluten daily. 2 slices of white bread a day is what the guidelines seem to say.    But I welcome advice from members here who have done successful gluten challenges. I know they are not always successful.    I have also read I should monitor his growth. Is that really a concern for 10 weeks of gluten consumption? He is growing and has always followed his curve but he’s no basketball player at 20-25th centile. 

What is your plan for the gluten challenge?

@melthebell, keep us posted. We are learning more and more about gluten disorders as time goes on. One of the things that has become apparent to me is that gluten disorders don't always like to fit into the neat little pigeon hole symptomatic and diagnostic paradigms we have created for them. There seems to be a lot more atypical stuff going on than we once realized.

Thanks very much for taking the time to write. I have been reading a lot about this and it definitely is not straight forward. My first port of call is the gene test - probably should have had it done before we left Australia because they don’t run the test in Japan. So I’ve ordered a third party test kit and just swabbed his cheek. Then we start the gluten challenge and see how it goes. 

Thank you everyone for t thank you for sharing your story. I’m borderline obsessive in making sure my kids get tested; my parents are convinced undiagnosed celiac in childhood stunted some of my growth and cause tooth enamel issues.  We now embark on a gluten challenge which comes with its own problems and I know diagnosis after being gluten-free can be difficult to secure. But I will absolutely persevere.