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I'm sorry to hear about the challenges you've been facing with your health. Dealing with celiac disease and multiple food sensitivities can indeed be overwhelming. Here are a few thoughts and suggestions based on your experience and the replies you've received: Confirming Diagnosis: It's great that your gastroenterologist confirmed your celiac disease diagnosis through additional tests. Understanding the specifics of your condition can help tailor your approach to managing it more effectively. Food Sensitivity Testing: While blood tests for food sensitivities can provide some insights, they may not always be completely accurate. As mentioned by others, false positives are common, and individual responses to specific foods can vary. Discussing your test results and symptoms with a healthcare professional knowledgeable about celiac disease and food sensitivities can help clarify your situation. Research and Education: Exploring conditions like Mast Cell Activation Syndrome (MCAS) and histamine intolerance could shed further light on your symptoms and provide additional avenues for managing your health. Gathering information from reliable sources and discussing your findings with your healthcare team can help you make informed decisions about your care. Dietary Management: Managing celiac disease and multiple food sensitivities can be challenging, but finding a balance that works for you is crucial. Working with a dietitian who specializes in celiac disease and food intolerances can help you develop a personalized dietary plan that meets your nutritional needs while minimizing symptoms. Stress Management: Chronic pain and health issues can take a toll on mental and emotional well-being. Finding healthy coping strategies to manage stress, such as mindfulness, relaxation techniques, or engaging in activities you enjoy, may help improve your overall quality of life. Remember, you're not alone in your journey, and seeking support from healthcare professionals, support groups, or online communities can provide valuable encouragement and guidance.

Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.

Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.

@Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.

@Shireen32,  Take some deep breaths.  Your labs are fine!  Your tTg IgA is so low!  Well done!  Your endomysial IgA is fine.  There's not a level on the endomysial test.  It's just "yes or no" for if you have celiac disease.   No, it's too early to call it refractory. What are you eating?  Please tell us more than meat and veg. Do you consume dairy? Do you consume processed gluten free foods?   Are you taking any prescription medications, herbal supplements, vitamins and minerals?  

thank you knitty kitty I don't have a vitamin deficiency and I supplement omegas.  Are there other more mild symptoms that co-occur with your joint pain as well @Moodiefoodie? I am suspicious my own joint pain could be related to another autoimmune issue. I am wondering if it is Crohn's or something similar because I've continued to experience some issues despite having normal celiac antibody levels. What have you considered?

Here are some more publications on this topic: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/fertility-pregnancy-miscarriage-and-celiac-disease/ 

Yes, it could be. Anti histamines help with the symptoms but I don't really like to take them long term.  

There is a product call Quinoa Flakes that might be a good substitute for oats.

How much gluten daily were you eating before your blood panel was taken? Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:    

It's certainly possible, but since it just turned spring it could also be something that is blooming now that you are allergic to. Perhaps new plants around the new houses?

I am not a medically qualified person, but I think in your shoes I would do the same.     If you are in the UK, there are some really good gluten-free aisles now.  The largest range near where I live, currently, appears to be in Tesco's.

@cristiana I’ve got an appointment with the midwife next week so will speak to her then. Waiting for gp to get back to me. I’ve made the decision today to cut gluten out regardless due to the risks I’ve read about 

Hi Katie I am so sorry you had two miscarriages in the past.  Try not to worry, though, because it could be that they were unrelated, perhaps? Well done for contacting your GP.  Is it possible that you can speak to your midwife in the meantime for a chat?    Cristiana  

@cristiana hi!  the things I’ve read online about having untreated coeliac disease whilst pregnant has really scared me and made me very hesitant to continue eating it. I feel like the best option might be to eliminate gluten from my diet now and then continue with testing after I’ve given birth. I’ve got in touch with my gp and am due to get a phone call back on Monday. Really worried now as I’ve had 2 miscarriages in the past 

@Katiec123 Welcome to the forum. I started to have symptoms related to coeliac disease (mouth ulcers, aura migraines etc) but no gastric symptoms during my first pregnancy.  That went to term, in fact, I was 10 days over and had to be induced.  But my second baby, born 21 months later, arrived at 33 weeks.  He's now doing well, and taller than all of us - it was just an earlier than expected arrival! I agree, it would not be wise to eat gluten  if there is any suspicion that you have coeliac disease during a pregnancy.   It would of course be good to know for sure, one way or another, because I believe coeliacs receive extra monitoring during pregnancy in many countries.   I think it may be well worth asking your GP if you can be referred to a gastroenterologist for a formal diagnosis asap.   By the way you spell 'coeliac' I'm guessing you are posting from the UK?  If that is the case, the NHS may rush things along for you, I suspect they will.  If it appears that they cannot refer you urgently, if you have the money for a private consultation it might be well worth it, as there is a trend here in the UK (I'm British) to diagnose coeliacs without the need for an endoscopy if the blood test results are compelling. Sounds like this is the case for you.  If you can see a gastroenterologist privately s/he might be able to diagnose you there and then (make sure you take a printout of your blood tests). Generally, there is a lot of support for coeliacs through the NHS, with a nutritionist, annual reviews and blood tests to check for diet compliance and health related issues, DEXA scans to check bone density, extra vaccinations where indicated and in some areas, certain gluten free food available on prescription.  So for lots of reasons, if you can get a diagnosis it's worth it. I hope all goes well with your appointment, let us know how you get on.

Hi , since being gluten free I am still having bad stomach problems . Such as constant gas in my stomach 24/7 ,burning, constant bubbling noises coming from my stomach and gurgling sounds that never stop .Pain under the left side of my rib cage when ever I eat and just always there’s pain there  .  My symptoms have not improved at all since being gluten free.  Could this be refractory coeliac disease ?? How is that even diagnosed or confirmed  ?  I had tests recently and this is what they say :Endomysial abs (IgA) -Positive  TTG abs (IgA)U/ml : My result is : 0.9 U/ml The Range:0 - 10 U/ml What does this mean pls ??? How can I still test positive for Endomysial abs when I am gluten free and am very careful about cross contamination? Do I even have coeliac disease I’m convinced some other digestive disorder is causing these symptoms .   I also have not had a endoscopy and now the gastroenterologist calls me after one year ( I’m from the uk and have free healthcare which has been such a nightmare with all this and never help me  )  so as I am gluten free the gastroenterologist advised me to start eating gluten again to be referred for a biopsy .. Is a biopsy even worth me doing ? The only proof I have is when I was eating gluten I could never get my ferretin , vitamin d and folate levels up . And since being gluten free these have gone up a little bit  . But that doesn’t always mean coeliac as I know gluten stops absorption in even normal people  . Pls can anyone shed some light it’s much needed ! And share some advice or answer my questions above . I have no idea with this whole coeliac stuff and am very much struggling .Much Appreciated .  

Vitamin D deficiency.  Not enough Omega Threes. Another autoimmune disease like arthritis, maybe.    

Any Naturopaths on this site?

@RMJ it makes sense as it’s something I’ve experienced more than once. Currently 24 weeks and baby is doing well! Will be seeking more medical advice today 

Thank you! This is great information and perfect timing because we have our first appointment for a second opinion tomorrow.  

Bright blood in the stool would indicate bleeding down at the lower end in the colorectal area as opposed to the small bowel below the stomach where celiac manifests damage to the villous lining. Are these blood stools persistent? It's not unusual for this to happen once in a while to most anyone when a small surface vessel breaks, kind of like a nose bleed. As Scott Adams said, you must continue to consume regular amounts of gluten if the specialist will be doing additional testing for celiac disease, which could include an endoscopy with biopsy of the small bowel lining.

Checkouts gluten-free recipes at twww.redstaryeast.com We tried a bread machine years ago and weren’t happy with results. Bread machines have pre-set rise & bake times.  Unfortunately, the program doesn’t adjust to slight differences when measuring, relative humidity or temperature of ingredients & in kitchens.  Lots of efforts for ONE odd- sized loaf that hard to cut into useable slices.  College-aged son found best use for bread machine was as heavy duty mixer that ‘kept dust in the box.’  He would pre-measure ingredients for 2-3 loaves & use machine mix up individual batches.      Since gluten-free bread needs  to rise only once, each recipe of dough went into a loaf pan. Pans sat counter to rise—time dependent of temp in kitchen. Then, baked in oven until he, not machine, decided it was done.     Took ~10 min extra up front to measure & mix additions but adds nothing to rise & bake times.     Loaves are great for slicing (Slice extra before freezing!). One mess to clean up, saves time & energy since you need to bake  as is half as often (If  you plan to bake lots more than bread, opt for KitchenAid/ heavy duty mixer instead.  Cover with dish towel to capture dust!)     Personally, I’m sure I had as a kid since I’ve never been a fan  of bread. .  Have been wrapping corn tortillas around things for 40+ years.  Can still get a dozen 12-pks of tortillas for same or less than price as 1 load of gluten-free bread. PLUS. the tortillas have more nutrients!         

Welcome to the forum. You are lucky because in Korean food, many classic meals such as bibimbap without sauce, barbecue meats and some kinds of soups generally do not have gluten. But it is a good idea to confirm with the restaurant workers for safety reasons. Regarding certain locations, I enjoy going to places such as Plant in Seoul and Sprout in Busan. Moreover, using applications like HappyCow or TripAdvisor can assist you to discover additional choices in the regions you plan to visit. One big tip: it is good to know some important Korean sentences, for example 'I cannot eat gluten' (geulluteuneul meogeul su eopseoyo)  or 'Does this have gluten?' (igeoe neun geulluteuni deureo innayo?) because they can be very helpful. Good luck with your travels! 🍻

It is concerning.  Unfortunately a lot of doctors don’t know a lot about celiac disease, even some gastroenterologists.  Here is an article for you: Celiac disease and miscarriage I hope you have a successful pregnancy and a healthy baby!

@RMJ   this is really concerning and my GP has said none of this to me! 

Undiagnosed (and thus untreated) celiac disease is associated with a higher chance of miscarriage. The downside of continuing to eat gluten now is increased chance of miscarriage. The downside of stopping gluten now and having to restart later to get a clear, official diagnosis is that you might have worse symptoms eating gluten after being gluten free, but it wouldn’t affect your baby. I know which one I would choose!

@Blanco - you are most welcome, and I am glad to hear you have made your glutinous bucket list!  Just before my biopsy, after the shed loads of Weetabix and Penguins I had eaten, I had a terrible tight headache across my forehead, something I'd suffered from a child and had just thought was a headache at the time. Maybe my body was trying to tell me something, even back then?  But I know what you mean about black forest gateaux - I've never really liked McDonalds, Burger King or KFC but now wish I could eat all that stuff when my family are tucking into theirs!   On the plus side, you may have seen, in the big supermarkets, particularly Tesco's, the gluten free aisle is ever expanding.  In one of our local branches now it pretty much occupies a whole aisle.   You might have to shop around, but it is amazing what you can find.  Ginster's make their own gluten-free pasties now, for example.  I just need a senior executive from McVities to read this thread because once Penguins are gluten-free, I shall be happy! As for prescriptions, this link should help you find out what you are entitled to - yes, NHS lottery is absolutely how it is! I have personally never bothered with prescriptions, but some do.  I think perhaps what you could do is buy gluten-free for a month, cost it, then see if it's worth your while compared with what the NHS can offer.  With some bread loaves costing £3.50 a shot, it might be worth it? By the way - do keep us posted if you can, we'd love to know if your gastroenterologist insists upon an endoscopy.    

Hi everyone!  I’m beginning to get a bit worried. I have had the first lot of tests done and my bloods are showing as a very strong positive for coeliac. I am also currently pregnant. I have been told to continue to eat gluten until more testing is done (biopsies). If I continue to eat gluten when the chances are very high that I am coeliac, will this harm or affect baby? I feel like I don’t know where to get answers from as I haven’t seen the specialist yet 

I have had joint pain as one of my dominant symptoms. I've wondered, mostly to myself until now, whether it could be related to another autoimmune concern. Have you had any ideas of what else it might related to? 

Thanks for your reply! Here were my results: tTg-IgA: <2 U/mL (standard range=0-3) tTg-IgG: <2 U/mL (standard range=0-5; weak positive 6-9, positive >9) Endomysial Antibody IgA: Negative (all it says) * I guess I’m just concerned/confused with symptoms of malabsorption and if anyone has had similar issues with NCGS? (Fatty/pale stool, undigested food in stool, hair loss due to low vitamins  ) thanks for your help!!

Hi Scott No, there isn't any mould but the road outside our house has got a lot busier lately. A lot more houses have been built in the area and I wonder if road pollution has something to do with it.

Many people with celiac disease don't have symptoms, so your doctor is correct to make this diagnosis based on your results. Did they refer you to get an endoscopy to confirm this? If so, you need to continue eating gluten until all tests are completed, otherwise you might get false-negative results. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    

I've never been there, but this may be helpful. Here's a concise gluten-free restaurant card in Korean along with its English translation: ---Korean: English Translation: This card should help convey your dietary needs clearly in Korean and English when dining at gluten-free restaurants or explaining your requirements to restaurant staff.

Is there any chance you have mold or mildew somewhere in your home? I've heard some horror stories about people who get major allergy and other health issues, and then discover black mold in their home.

Good point, as I don't believe that sugar is good for anyone, and I avoid it. Eating too much can lead to imbalances in the gut microbiome which can lead to IBS-like symptoms.

Feel free to share your blood test results here, and if you do include the reference ranges, because sometimes negative results aren't so negative (borderline readings are often just called "negative" by doctors, but elevated antibodies still must be explained). Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.  

It is interesting that B1 lowers your glucose levels. Benfotiamine is the fat soluble version, and:  

This may be a dumb question but Is it okay to use a shampoo / conditioner containing hydrolyzed wheat protein? 

@BluegrassCeliac, welcome to the forum, Hydrochlorothiazide HCTZ and other diuretics are known to cause Thiamine deficiency.  Anti-anxiety  meds, SSRIs, PPIs and sulfa drugs are known to cause Thiamine deficiency.   Thiamine and Magnesium work together.  A deficiency in magnesium can hinder how thiamine is utilized.   Cytokine Storms are ameliorated by high dose Thiamine.   Do you have a reaction to sulfa drugs?  I have Hypersensitivity Type Four to drugs containing Sulfites.     References: Repurposing Treatment of Wernicke-Korsakoff Syndrome for Th-17 Cell Immune Storm Syndrome and Neurological Symptoms in COVID-19: Thiamine Efficacy and Safety, In-Vitro Evidence and Pharmacokinetic Profile https://pubmed.ncbi.nlm.nih.gov/33737877/

I had some bloody stools (like bright red ones, not dark red as intestinal damage would cause) and fatigue earlier this year, so my family doctor did a blood test. My anti-tissue transglutaminase level was over double at 37,3 kU/L (normal range is 0,0-14,9). Due to the bowel issues, joint pain, and eczema between my fingers, she seems quite certain I have celiac disease. I also was diagnosed with possible psoriatic arthritis (autoimmune) a year ago but I haven't had any flare ups lately and assumed that was the cause of joint pain, as well as some swelling in my toes.  I don't really have any other symptoms so I'm not sure how to proceed, as the wait to see a specialist is like six months. Is there any other way to ascertain if I'm celiac?  

Hi,   Your situation was similar to mine, but yours sounds more severe. From what I've read and experienced celiacs with IgG can have different symptoms that those with IgA. (I have only IgG like you). It's rare. Most Celiacs have IgA. (95% by some studies). I too had an ulcer and was on PPIs, H2 blockers, etc. They created a severe magnesium deficiency which took 2 years to recover from. HCTZ likewise causes this. Mg deficiency can be severely painful and the only way to stop it is boost your Mg like the others suggested. What type of pain are you experiencing? Anxiety meds can also lower Mg. Mg can interfere with some of them too, so read the instructions.  We are prone to more intensive reactions than regular celiacs: cytokine storms, anaphylactic shock, etc. I've had 6 cytokine storms in the past 5 years. The 2 life threatening ones were caused by prescription medicine with wheat (unlabeled). Have you checked your pills? Are they gluten-free? Cytokine storms can range from mild pain to screaming pain with my skin burning off. And yes, celiac disease is life changing. I've missed out on many things during my lifetime. It sucks. But there is a bright side. If your immune system is like mine, it is a lot stronger than an average persons. celiac disease has literally saved my life when I contracted some highly drug resistant infections. That also triggered a cytokine storm, but that helped kill the infection. That's its job. Doctors repeatedly don't believe me when I tell they my immune system is different from everyone else's. They complain that I can't have an infection because I don't present normally.  I tell them I'm not normal, but they don't listen. So you're not crazy.  I'd recommend you get off the anxiety meds and try to boost your Mg; but I don't know you medical situation and that's your call. BTW anxiety meds can have terrible side effects. Your call. DM if you want to ask more specific questions. Oh, check out a book called "Jennifer's Way." It's about celiac disease actress who went through things similar to you. Might help. Good luck, B  

@Celiac16, Have you tried taking Niacinamide, the non-flushing form of Niacin Vitamin B 3? Have you tried non-methylated forms of Cobalamine B12 and Folate B 9?  Nausea and vertigo can be helped by Thiamine.  Vitamin D helps with vertigo, too.

@Vicrob,  Have your swallowing issues, speech slurring and chronic cramps/nerve pain/muscle fluctuations improved since starting to take Benfotiamine? Those are all symptoms of Thiamine deficiency disorders.   How much Benfotiamine do you take a day?  

@susiegoldcoast, try starting a reply without quoting previous messages.  

There is no question that elevated liver enzymes are connected with celiac disease. That is a well established fact. I was one of those and mild but chronically elevated ALT and AST was what led to my celiac diagnosis. About 18% of celiacs have elevated liver enzymes. I would not trust a neurologist to give a valid answer to your question about that. He/she was out of their lane.

Thank you I’m taking thiamine benotiamine daily and am much better. But my neurologist tells me my elevated liver enzymes have nothing to do with my gluten ataxia. My latest blood test showed my enzymes as ok but periodically they seem to elevate. I’ve noted it’s when I’m unwell. Also after a mild attack of my central nervous system (like guillaine barre) - after the flu jab - mY EMG nerve study test was negative. Yet I had swallowing issues, speech slurring and chronic cramps/nerve pain/muscle fluctuations for over 2 months. I think I’m really complicated ! 

@knitty kitty it’s hard for me to figure out what causes the reactions in multivitamins for me - I found out through individual supplements that I can’t do methylated forms - methyl folate and methyl cobalamin both gave me hives. It’s really tedious trying out each form of vitamin individually but I do taken b2 and b6 too for nausea/vertigo. I can’t tolerate b3 bc it gives me nausea and hives. I actually feel pretty good where I’m at now and kind of have supplementation fatigue - it’s so much work doing trial and errors that I’d like to hold my course for a bit. 

@Celiac16, Thiamine (any form including Benfotiamine) needs magnesium to make life sustaining enzymes.  Taking Thiamine without sufficient magnesium means the body cannot use Thiamine properly.   I understand how magnesium can make you feel  "knocked out" but that goes away with continued supplementation.  When I first started supplementing magnesium, I took it at bedtime, too.  Magnesium helps muscles relax, so feeling really knocked out was a sign to me I was deficient.  I kept taking it.  Magnesium doesn't knock me out anymore since my deficiency was corrected. Thiamine chelates heavy metals like Lead and Cadmium.  Thiamine binds irreversibly with dangerous heavy metals like Lead and Cadmium, so they can be removed from the body through the digestive tract.   Thiamine combines with chromium to form an enzyme.  Thiamine and chromium separately both help regulate blood glucose levels and use of insulin.  Thiamine and Selenium are both utilized in the thyroid.  Enzymes made with manganese are used after thiamine enzymes inside cells.   Thiamine interacts with each of the other B vitamins.  Each of the B vitamins is needed at different points in the production of energy for cell metabolism.   You are doing yourself a disservice by not supplementing with the other B vitamins and magnesium as well as Thiamine.  Insufficiencies in the other B vitamins can affect how well Thiamine is utilized in the body.   Some people don't like a B Complex supplement because Nicotinic Acid or Niacin Vitamin B 3 causes flushing.  Flushing is temporary, and goes away with continued use.  I've heard it said, the worse the flush, the more your body needs the niacin.  As deficiency levels are corrected, the flushing ceases.   If you don't like B Complex, take each of the eight B vitamins separately. Vitamins A, D and C are important as well.  Vitamin D helps regulate inflammation.  Vitamin A and C help in healing.   Have you been referred to a Nutritionist? References: Subclinical magnesium deficiency: a principal driver of cardiovascular disease and a public health crisis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5786912/ Vitamins and Minerals for Energy, Fatigue and Cognition: A Narrative Review of the Biochemical and Clinical Evidence https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7019700/ Effects of Combined Dietary Chromium(III) Propionate Complex and Thiamine Supplementation on Insulin Sensitivity, Blood Biochemical Indices, and Mineral Levels in High-Fructose-Fed Rats https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3510416/

Sorry i meant 500mg**

@Moodiefoodie, Sorry you are having such problems.   Gluten exposure, illness and vaccinations are situations in which there is a higher demand for Thiamine Vitamin B1.   We need more Thiamine when we have an immune response, whether it is caused by a cold or an inoculation to promote an immune response as with vaccines, or upon exposure to gluten and our autoimmune response to gluten.   Thiamine stores can be depleted within three days to three weeks.  Subclinical Thiamine deficiency can exist for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms may mysteriously wax and wane.  With illness, vaccinations, and gluten exposure, the demand for Thiamine increases, and symptoms flair. Thiamine has antibacterial properties.  Thiamine has analgesic effects, especially when taken with Pyridoxine B 6 and Cobalamine B12.  Thiamine has been shown to reduce inflammation in joints. The Gluten Free diet can be low in Thiamine.  Gluten free processed foods are not enriched with vitamins like gluten containing products.  Eating a diet high in these carbohydrates can also increase the demand for Thiamine.  This is High Calorie Malnutrition. Supplementing with Thiamine, the rest of the B vitamins, and magnesium is beneficial in correcting nutritional deficiencies as occurs in Celiac Disease.   References: Thiamine and benfotiamine: Focus on their therapeutic potential https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10682628/ Long-Term Treatment by Vitamin B1and Reduction of Serum Proinflammatory Cytokines, Hyperalgesia, and Paw Edema in Adjuvant-Induced Arthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5102562/ Thiamine deficiency disorders: a clinical perspective https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/ Hiding in Plain Sight: Modern Thiamine Deficiency Chandler Marrs and Derrick Lonsdale https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/ The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/

@knitty kitty yes I have tried higher doses - I think I’ve done 10 g hcl in a day a few times… I know in hospital for Wernicke they can give 500g injections which is obviously absorbed at magnitudes higher. Magnesium really knocks me out so I don’t take it (I could only take it at bed). I did supplement for a while but didn’t feel it helped. I’ve used benfothiamine for a while (2 months) and also don’t think I see a difference with hcl. I don’t feel comfortable ordering a supplement from a brand that’s not really big/well known so I stick to the more mainstream options.  I have a really great CFS Dr who would prescribe thiamine shots too but she worries about taking them for too long and throwing off other things which I also worry about. thiamine has sulfur which excretes metals and I don’t want to lower good nutrients like chromium, selenium, manganese, etc. I’ve had a hard time tolerating multivitamins, they make me feel wierd and there’s too many variables to narrow down…  i know biotin has similar pathways in the body to thiamine so i will also take that occasionally and find similar benefits (there are also a few genetic diseases where they are taken in tandem).

Thanks Scott. Just wondered about the test. Really not much question in my mind as to whether I have it  but I thought it would be cool if confirmed during test for celiac. The doctors I have seen over the years think I'm nuts when I ask about it so now I just go about my business.