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Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  

Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/

Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.

Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 

Constantly! I don't want everything to cost as much as a KIND bar, as great as they are.  Happy most of the info is available to us to make smart decisions for our health, just need to do a little more research. 

Today, I received the results of my Tissue Transglutaminase (tTG) Ab, IgA test. I am not sure how to interpret the results. I have left a message for the doctor that requested the test but have not heard back. The results stated that the normal range is from 0.00 - 4.99 FLU. My results came back at 92.08. Is this concerning? This seems extremely high for someone who has reached the age of 50 before finding out he has celiac disease.  The reason that I was administered the test in the first place is due to bloating issues that started about a year ago. I met with a Gastroenterologist and after a short question and answer session she wanted to test me for celiac disease and a bacteria test via the H. Pylori Breath Test. She seemed more concerned with the fact that I am a healthy male suffering from Anemia. Is it possible the anemia could be a result of celiac disease? I have been on an iron supplement for the better part of 5 years.      

Be sure to keep eating gluten daily until all testing is completed.  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:    

You can always to the gluten challenge later, after your pregnancy, should you need a formal diagnosis. I think it's best to play it safe in this case.

Very true. I also suffered from candidiasis which had affected my intestines and toes. I think this might have triggered my gluten intolerance/celiac.

Welcome to the forum community, @Jesmar! The HLA DQ2 and DQ8 genes were the original halotypes identified with the potential to develop celiac disease. Since then, other genes have been discovered that apparently afford a predisposition to celiac disease. As is always the case, these new discoveries are not yet common knowledge and not yet widely dispersed in the medical community. It is not genetically as black and white as we once thought.

It's a moving target, isn't it!

@Nacina, I would add a B Complex to all that and extra thiamine B 1 and magnesium glycinate, and high dose Vitamin D to get his level up faster.   We need the B vitamins to repair our body and for energy to function.  Thiamine B 1 is especially important for athletes.  Thiamine works with magnesium.  Thiamine and magnesium deficiencies can cause constipation.  All eight essential B vitamins work together.  Due to poor absorption in celiac disease, supplementing with B vitamins boosts our ability to absorb them.  Here's some reading material that is helpful... An open-label, randomized, 10 weeks prospective study on the efficacy of vitamin D (daily low dose and weekly high dose) in vitamin D deficient patients https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6618212/ Micronutrients Dietary Supplementation Advices for Celiac Patients on Long-Term Gluten-Free Diet with Good Compliance: A Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6681258/ The Effects of Thiamine Tetrahydrofurfuryl Disulfide on Physiological Adaption and Exercise Performance Improvement https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6073388/ 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/ B Vitamins: Functions and Uses in Medicine https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9662251/ 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/ A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10542023/ Effects of thiamine supplementation on exercise-induced fatigue https://pubmed.ncbi.nlm.nih.gov/8815395/ The effects of endurance training and thiamine supplementation on anti-fatigue during exercise https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4241913/ Hope this helps!

Hi all.  I am an 18 year old male. Recently I had anti ttg-igA tested and it came back as 9.1 IU/ml (weak positive) (increased from previous test which was 5.6iU/mL) . What does this mean please? I am booked for an endoscopy however, i am negative for both HLA DQ2 and DQ8. I have a family history of coeliac. 

Yes and variations in their sources for natural and artificial flavors could be the culprit as well.  I might be on the more sensitive side, but I do fine with McDonald's fries and burgers if I take the bun off, and other foods that have certified gluten free ingredients and only cross contamination risk preventing the gluten-free certification. 

Yes, the yeast could have been cultured on a wheat substrate. But another batch may use a yeast extract cultured on something else that did not contain gluten. These food companies will switch suppliers according to what is the cheapest source at any given time. I take it you are a pretty sensitive celiac.

The regular cheddar and sour cream Ruffles have yeast extract, which is probably the source of gluten.  Pinpointing the exact cause of gluten exposure is always tricky, but I've come to learn my initial reaction to gluten compared to the ongoing symptoms that will occur days, weeks, and sometimes months later.  

Yes, that's probably best. (Honestly, that is an extraordinarily high number, I've never seen anything like that. I repeated my blood tests (not taken while pregnant BTW); before giving up cake, pizza, and beer, I wanted to know for sure! You don't wanna mess around with anything while pregnant. Congratulations and best of luck!

Here are the ingredients listed for the regular sour cream and cheddar Ruffles: Potatoes, Vegetable Oil (Canola, Corn, Soybean, and/or Sunflower Oil), Maltodextrin (Made from Corn), Salt, Whey, Cheddar Cheese (Milk, Cheese Cultures, Salt, Enzymes), Onion Powder, Monosodium Glutamate, Natural and Artificial Flavors, Buttermilk, Sour Cream (Cultured Cream, Skim Milk), Lactose, Butter (Cream, Salt), Sodium Caseinate, Yeast Extract, Citric Acid, Skim Milk, Blue Cheese (Milk, Cheese Cultures, Salt, Enzymes), Lactic Acid, Garlic Powder, Artificial Color (Yellow 6, Yellow 5), Whey Protein Isolate, and Milk Protein Concentrate. CONTAINS MILK INGREDIENTS. Here are the ingredients listed for the baked ones: INGREDIENTS: DRIED POTATOES, CORN STARCH, CORN OIL, SUGAR, MALTODEXTRIN (MADE FROM CORN), SALT, SOY LECITHIN, DEXTROSE, WHEY, WHEY PROTEIN CONCENTRATE, ONION POWDER, CHEDDAR CHEESE (MILK, CHEESE CULTURES, SALT, ENZYMES), MONOSODIUM GLUTAMATE, BLUE CHEESE (MILK, CHEESE CULTURES, SALT, ENZYMES), CITRIC ACID, ARTIFICIAL COLOR (YELLOW 6 LAKE, YELLOW 5 LAKE, YELLOW 5, YELLOW 6), SKIM MILK, NATURAL AND ARTIFICIAL FLAVORS, GARLIC POWDER, LACTIC ACID, DISODIUM INOSINATE, AND DISODIUM GUANYLATE. CONTAINS MILK AND SOY INGREDIENTS   They look a lot the same except for the baked product contains soy. What do you suppose is the hidden source of gluten in the regular Ruffles that is not found in the baked ones? Could you be mistaken in attributing your reaction to the Ruffles? Could it have been from gluten in something else you ate around the same time or even a non-gluten tummy event?

@plumbago on my blood tests I got 4500 and normal should be between 25-30 but they wanted me to continue eating gluten until a endoscopy was done and also biopsies taken. I’ve took it upon myself to cut gluten out today based on the research I’ve done about it during pregnancy 

If you tested positive for celiac on labwork, I would definitely give up gluten.

I have Celiac and had a bad reaction to the regular cheddar and sour cream Ruffles.  The baked ones in this flavor are apparently marked gluten-free, but watch out for the regular ones.  I wish I would have seen a post like mine, instead of one that was specifically referring to the baked chips from my google search, before I pulled the trigger.  Hopefully some day they'll require gluten disclosure on the ingredients, not just "wheat."  

I am trying to find a Celiac Dietician who works with the Celiac Disease Foundation.  They don't have to be located in my area because I can do video visits. Can anyone help with this?

What is a "boots pharmacist"?

Well, that's a big question. When he was seeing the nutrition response testing dr. that changed each time we went in. He hasn't been seeing him regularly for theist ten months. When he had a horribly week in March I started him back on the 4 that were suggested to keep him on. Those are: Standard Process Chlorophyll Complex gluten-free, SP A-F Betafood gluten-free, SP Tuna Omega-3 Oil gluten-free, And Advanced Amino Formula. He also takes a one a day from a company called Forvia (multivitamin and mineral) and Probiotic . Recently he had to start Vitamin D as well as he was deficient.  

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!