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Thank you again for your reply and comments which I have read carefully as I appreciate any input at this stage. I'm tending to listen to what my body wants me to do, having been in agony for many years any respite has been welcome and avoiding all wheat and lactose has thankfully brought this.  When in pain before I was seen by a number of gynacologists as I had 22 fibroids and had an operation 13 years ago to shrink them . However the pain remained and intensified to the point over the years where I began passing out. I was in and out of a&e during covid when waiting rooms where empty. My present diet is the only thing that's given me any hope for the future. As I say I had never heard of celiac disease before starting so I guess had this not come up in a conversation I would just have carried on. It was the swollen lymph node that sent me to a boots pharmacist who immediately sent me to a&e where a Dr asked questions prescribed antibiotics and then back to my GP. I'm now waiting for my hospital appointment . Hope this answers your question. I found out more about the disease because I googled something I wouldn't normally do, it did shed light on the disease but I also read some things that this disease can do. On good days I actually hope I haven't got this but on further investigation my mother's side of the family all Celtic have had various problems 're stomach pain my poor grandmother cried in pain as did her sister whilst two of her brother's survived WW2 but died from ulcers put down to stress of fighting.  Wishing you well with your recovery.  Many thanks  

Welcome to the forum, @Nacina, What supplements is your son taking?

@BluegrassCeliac, I'm agreeing.  It's a good thing taking magnesium. And B vitamins. Magnesium and Thiamine work together.  If you supplement the B vitamins which include Thiamine, but don't have sufficient magnesium, Thiamine won't work well.  If you take Magnesium, but not Thiamine, magnesium won't work as well by itself. Hydrochlorothiazide HCTZ is a sulfonamide drug, a sulfa drug.  So are proton pump inhibitors PPIs, and SSRIs. High dose Thiamine is used to resolve cytokine storms.  High dose Thiamine was used in patients having cytokine storms in Covid infections.  Magnesium supplementation also improves cytokine storms, and was also used during Covid. How's your Vitamin D? References: Thiamine and magnesium deficiencies: keys to disease https://pubmed.ncbi.nlm.nih.gov/25542071/ Hiding in Plain Sight: Modern Thiamine Deficiency 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/ High‐dose Vitamin B6 supplementation reduces anxiety and strengthens visual surround suppression https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9787829/ 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/ Higher Intake of Dietary Magnesium Is Inversely Associated With COVID-19 Severity and Symptoms in Hospitalized Patients: A Cross-Sectional Study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9132593/ Magnesium and Vitamin D Deficiency as a Potential Cause of Immune Dysfunction, Cytokine Storm and Disseminated Intravascular Coagulation in covid-19 patients https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7861592/ Sulfonamide Hypersensitivity https://pubmed.ncbi.nlm.nih.gov/31495421/

Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  

It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.

Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 

But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.

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 !