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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. If you are considering getting a local guide, I'd suggest this one https://gowithguide.com/korea They were very helpful when I needed to find places with gluten-free food options because they provide tours tailored to your preferences. 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.

Hey travelers, Newbie here, I am preparing for a trip to South Korea and need help with finding gluten-free options. Because I have celiac disease, it is important for me to find restaurants that are safe for me to eat at. Could you please give me some advice on restaurants that serve gluten-free food or Korean dishes which are naturally without gluten? Furthermore, do you have any tips for someone traveling in South Korea who needs to follow a gluten-free diet?

Your daughter's safari with Chris Samwel of I Dream of Africa sounds incredible! It's awesome that they were so accommodating with her Celiac needs. I'll definitely keep them in mind for future trips!

Hi @Scott Adams Thank you for the info it's really useful. The doctor did say the specialist might not do the biopsy but it is the specialist I have been referred to that has to make the diagnosis as far as I am aware so I am waiting for the appointment. Our healthcare system here in the UK is very different to America so forgive me if I don't articulate our system well. 

Hello @Rogol72 Thank you for the info, I don't have private health care here in the UK so unfortunately I can't see this guy without paying for it myself which I'm not in a position to do. 

How are you doing, @susiegoldcoast?

@Vicrob, There's a connection between increased liver enzymes and Thiamine deficiency.  Thiamine deficiency is a result of malabsorption due to Celiac Disease and increased demand during illness.   Thiamine deficiency can cause Ataxia.  Thiamine deficiency can cause lesions on the brain.  Thiamine deficiency can cause neuropathy.  Thiamine deficiency causes migraines.   Thiamine needs the other seven B vitamins to function properly.  You should add a B Complex and Vitamin D.   How much and what kind of Thiamine are you taking? References: High-dose vitamin B1 therapy prevents the development of experimental fatty liver driven by overnutrition https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7988776/ Thiamine deficiency-related brain dysfunction in chronic liver failure https://pubmed.ncbi.nlm.nih.gov/19067139/ B Vitamins and the Brain: Mechanisms, Dose and Efficacy—A Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4772032/ 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/

Hi Christina! Thank you so much for your in depth reply  it's nice to hear from a fellow Brit as the health care system here is a lot different to the US as you know.  I am waiting for my referral and I'm going to see what they say at the appointment, the GP did say they might well just confirm the diagnosis without a biopsy and they may want to do other tests but i'm not 100% sure. It's great that you have told me what I should be entitled to on the NHS once the diagnosis is confirmed so I will push to get the other tests for deficiencies and a nutritionist if they are not forthcoming. I am in Nottinghamshire, so not sure about the Coeliac care here as you know nationally with a lot of the NHS services it is more of a postcode lottery than anything else. I am trying to make the most of this time like you said, I do love a penguin too! I have made a list on my phone of things I am going to eat for the last time.... haha a bit sad I know. Fish and chips is near the top and black forest gateaux, not had one for years but suddenly I have a craving knowing I won't be able to anymore. Sorry... I will stop talking about the food no one on this forum can eat! I am feeling more and more fatigued since the tests results, I'm not sure if know knowing I have this diagnosis has sort of made me worse. Work have allowed me one day working from home a week so that's something I suppose, I feel shattered after two days on the trot of going in to the office. I am going to wait for the 'official' diagnosis and then ask for two days at home at least, but not sure how that will go. Do the prescriptions for the gluten free food work out cheaper than buying it in the shops? I know prescriptions are nearly £10 a go now so wondering if it is worth it?   Thanks again for your reply, I feel less alone in all this  

It took years  to realise it was gluten making me poorly but I’d cut it out my diet when I was finally tested. So, not diagnosed celiac and presume it’s gluten ataxia due to lesions on cerebellum. I’m much better yet still have mild neuropathy especially if I’m feeling unwell. I take thiamine and magnesium for it. I’ve had problems with liver enzymes but last test I was ok. Taking to my neurologist I’m told it’s unrelated to my gluten issues , I’m wondering why when I read lots of the time that it is indeed related to celiac disease - which is gluten related? I tested positive for both gluten intolerance genes. I no longer have awful migraine or dizzy spells. Ok I’m off balance and fall but I’m stable ish. Are there medical opinion differences linking liver enzymes to gluten intolerances ? 

@Celiac16, When the effects wear off, have you tried taking MORE thiamine?   Have you tried Allithiamine (Tetrahydrofurfuryl Disulfide TTFD) or Thiamax?  Are you taking a magnesium supplement, too?

@Celiac16, Fat soluble vitamins are Vitamins A, D, E, and K.  There's little risk of toxicity unless one takes supplementing to excessive levels for a long period of time.   https://ods.od.nih.gov/factsheets/VitaminA-HealthProfessional/#h17 https://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/#h36 https://ods.od.nih.gov/factsheets/VitaminE-HealthProfessional/#h14 https://ods.od.nih.gov/factsheets/VitaminK-HealthProfessional/#h14  

@lasthope2024, I'm thankful I can help. An Erythrocyte Transketolase test is a better test for Thiamine deficiency than a blood test.  The Erythrocyte Transketolase test needs to be taken before starting vitamin supplementation.  Otherwise, the vitamins you take will invalidate the results.    I take Ecological Formulas Allithiamine (Tetrahydrofurfuryl Disulfide TTFD).  I take Life Extension Benfotiamine and B Complex.  I like these brands because they don't use rice flour fillers and they are gluten free.  These are available online.   Thiamine needs magnesium to make enzymes, so be sure to take a magnesium glycinate or magnesium citrate supplement.  Magnesium Oxide is not a good choice as it is not absorbed well and pulls water into the digestive system, causing diarrhea or relieving constipation.   Vitamin D needs to be between 75- 100 nmol/L in order to work as it's supposed to.  Vitamin D is frequently low in Celiac Disease.   Try the Autoimmune Protocol Diet (AIP diet), a Paleo diet that can help inflammation and promote intestinal healing.  Choosing low histamine foods helps further.  Remember to consume healthy fats that contain Omega Threes (olive oil, flaxseed oil, algal oil, fish oil, sunflower seed oil) because our brains are mostly fats.  Choose low carbohydrate foods.  The more carbohydrates you eat, the more Thiamine is required.  Excess carbohydrates feed SIBO bacteria.  Thiamine helps keep them in check.  Thiamine also helps stop the release of histamine from overly sensitive mast cells.   Malabsorption due to Celiac Disease can also affect trace minerals like molybdenum, iron, selenium, zinc, copper and iodine.  Calcium should be checked as osteoporosis is common in Celiac Disease, especially if we avoid dairy.   A discussion with a Nutritionist can be helpful.     References: Thiamine deficiency disorders: a clinical perspective https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/   Hiding in Plain Sight: Modern Thiamine Deficiency https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/   B Vitamins and the Brain: Mechanisms, Dose and Efficacy—A Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4772032/   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/

Hi Scott Thank you for your reply I don't think I'm having any gluten in my diet. I only cook fresh food at home and I'm really careful about reading labels. On the whole my symptoms have improved and I'm feeling very much better. However, I still do have the occasional 'attack' severe stomach pain and vomiting which probably happens about once a month.  My partner eats gluten containing food and I think these attacks may be due to cross contamination in the kitchen. I think the new sensitivity the airborne allergens may be just a coincidence. 

I will look into this first thing tomorrow, as when I was first diagnosed I was tested for b12 and I was deficient. This has been incredibly helpful and I thank you. If there's anything else you can think of as you read my story I'd really appreciate it.  My only concern when taking supplements is if they're deluded/low quality and not really gluten free, are there any brands you recommend? or possibly have it made in pharmacy? Thank you for approving my post, you give me hope. All the questions you ask are answered within the first 2 paragraphs of my post. Any advice is greatly appreciated.

Welcome to the forum, @lasthope2024, Blood tests are not reliable measures of vitamin deficiencies.   Antibiotics are known to cause Thiamine Vitamin B1 deficiency.   Gastrointestinal Beriberi is caused by Thiamine deficiency.   "At age 14 I started having constant, chronic abdominal pain and acid reflux (also constipation and reduced appetite, fatigue, moodiness,etc." All your symptoms here are the same symptoms as Gastrointestinal Beriberi caused by Thiamine deficiency. "My mind is not the same, my sleep is not the same, my body has never been the same, I don't think the same way." Thiamine deficiency can produce alterations in brain function, called Wernicke's Encephalopathy.   Thiamine has antibacterial properties.  Thiamine has analgesic properties. The Gluten free diet, even if followed strictly, can be nutritionally deficient in essential vitamins and minerals.  There are EIGHT Essential B vitamins, Vitamin C and four fat soluble vitamins. They all work together interdependently.  B12 cannot function properly without sufficient Folate B 9, Pyridoxine B 6, and Thiamine B1.   "Supplementation with functional medicine vitamins (B12, D, C, GABA, etc.) had no effect." Doctors are not given sufficient training in nutrition.  They forget to correct the malabsorption caused by Celiac Disease.  They don't recognize the subtle symptoms of Thiamine deficiency outside of alcoholism which presents differently.  Eventually, Thiamine deficiency symptoms, with or without alcohol, overlap and can result in Wernicke's Encephalopathy, 80% of cases are diagnosed postmortem.   The World Health Organization recommends taking Thiamine and looking for improvement because blood tests for vitamin deficiencies are so unreliable.   Talk to a nutritionist.  Take a B Complex supplement with all eight essential vitamins and additional high dose Thiamine in the form Benfotiamine (shown to promote intestinal healing) and Allithiamine (Tetrahydrofurfuryl Disulfide for brain function improvement).  Niacin B3 deficiency can cause GERD and reflux problems.  Another form of Niacin, Tryptophan, is necessary to make melatonin which regulates sleep cycles.   Riboflavin B 2 makes essential life sustaining enzymes with Thiamine.   Pyridoxine B6, Cobalamine B12, and Thiamine B1 together have analgesic properties.   Read my blog for excerpts of my journey through vitamin deficiencies. Hope this helps!

Welcome to the forum community, @lasthope2024! Many of the symptoms you describe seem to have been temporary and transitory. What would you say is your biggest current cause of concern and suffering? May we ask you age?

Please take a moment to read this. your testimony might save my life. I am 21 years old (from a third world country) in my childhood I never had any stomach issues aside from recurring mild gastroenteritis (a few days every couple of months which went away on its own) some times could go six months to a year without any illness at all.  At age 14 I started having constant, chronic abdominal pain and acid reflux (also constipation and reduced appetite, fatigue, moodiness,etc). I was swiftly tested by doctors over the following 2 months, after a biopsy and blood test, I was confirmed celiac. However, my pain has never stopped, I've never been free. My mind is not the same, my sleep is not the same, my body has never been the same, I don't think the same way. What I have done (that I can remember): tests completely normalised after a year and a half on STRICT unyielding Gluten Free diet. Corroborated by a laboratory that specialises in Gluten blood tests. tests every 6 months have never got high results. These results were corroborated by one of the 5 most important celiac disease doctor and researcher in the world, who happens to live in my country. He seems certain I am not in any way (even indirectly) contaminated. My house is entirely gluten free, I don't eat anything processed, I don't eat lactose. The endoscopy revealed partial damage, my small intestine was not completely destroyed by gluten. Initially tested positive for H.pylori. Successfully treated with antiobiotics and re-tested negative. (6 months after antibiotics) Normal full abdominal ultra sound I underwent an esophagogastroduodenoscopy: The presence of gastroesophageal reflux reaching up to the upper third of the esophagus was confirmed,  Thickening of the gastric body mucosal folds was noted. Numerous blood tests were conducted with no nutrient malabsorption or inflammatory markers present. Serial parasitological examinations of stool samples were normal, and calprotectin levels were low. Histamine degradation tests showed a very low probability of histamine intolerance; however, my degradation of histamine is poor. A histamine-free diet for three weeks did not help, and DAO supplementation was also ineffective. A diet for irritable bowel syndrome without FODMAPs was unsuccessful. Eliminating dairy products did not yield results, and completely avoiding all processed foods while consuming meat, chicken, fish, rice, potatoes, sweet potatoes, and other cooked vegetables along with eggs also had no effect. Treatment with all commonly used types of antidepressants for chronic functional pain had no effect (e.g., amitriptyline, duloxetine). However, during an 8-month period between 2021 and 2022, clomipramine (50 mg) completely eliminated all my symptoms. It lost its effect overnight without any justification or event that altered my condition in the slightest. I simply woke up in pain. Higher doses and combinations were tried to no avail.  I also tested negative for SIBO, and was given medication for a fungal infection as a precaution, which was merely a speculation by the doctors. Contrast-enhanced MRI enterography showed completely normal results. IMPORTANT In 2023, during my third colonoscopy, a more thorough examination was conducted, including access to the terminal ileum where ulcers, abscesses, leukocyte presence, and inflammation were found. This led to the consideration of a high probability of a very mild form of Crohn's disease. However, the pathologist in his report also explained the possibility and attributed the cause more to a transient infection or inflammation (an abdominal Doppler ultrasound also revealed inflammation, which seemed even more abnormal). Despite this, the doctors treated me with corticosteroids. A subsequent colonoscopy revealed that the ulcers were no longer present, the inflammation had substantially decreased and was now (apparently) minimal, and there was only a very slight shortening in the villi, which does not necessarily indicate any disease and could simply be the way my villi are. A capsule video endoscopy also examined my entire digestive tract, finding no abnormalities beyond the ulcers that were later biopsied during the colonoscopy and subsequently treated. A blood test for food intolerance conducted at a prestigious laboratory in the United States, covering over 600 foods, revealed moderate intolerances only to gluten and some dairy products—two compounds that I do not consume either directly or indirectly. A comprehensive blood test specifically conducted for markers of inflammatory diseases was carried out at the University of Miami Hospital in the United States. It showed no positive results for any conditions, only indicating a high ASCA IgG level (20.6 EU/mL with a reference value of 11.9 EU/mL). Years of seeing psychiatrists specialized in pain management and behavioral psychology have yielded no results. Digestive enzymes and probiotics yielded no results. Supplementation with functional medicine vitamins (B12, D, C, GABA, etc.) had no effect. Massages, stretching exercises, acupuncture, ice baths, and sauna sessions also had no effect. This is all I can remember. Worth nothing that I only drink mineral water I buy from stores, however I use regular tap to cook, which might be unwise considering my country is not the USA, even so, everyone around me is fine and there are no reported cases of the water being a problem. I live in a big city. if relevant: suffered from acute otitis infections fairly regularly as a child, antibiotics. The last 7 years have been hell. I've been forced to leave relationships, miss opportunities, fall back on university, my life is flashing before my eyes. If you suffered or know anyone with a similar story that had something work for them. Please share.     

1000 mcg of B12 supplementation is peanuts. You should be taking 5000 mcg. and you should be taking a high potency B-complex to boot. The B-vitamins are seldom found in isolated deficiencies but are usually deficient as a group. If you live near a Costco, their Nature Made product line is a good choice and if gluten free will be labeled as such. Most of them are. You should also be taking 5000IU of D3 daily, zinc and about 400 mg. of magnesium glycinate daily. Vitamin and mineral deficiencies are part and parcel of having long term, undiagnosed celiac disease because of the absorption impairment caused by the damage to the villous lining of the small bowel, where all of our nutrition is absorbed  from what we eat. And by the way, the common blood tests for vitamin deficiencies do not necessarily mean much as they only reflect how much is circulating in the body, not how much is being assimilated by the cells and tissues. Symptoms are probably a better indicator.