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- trents replied to MomofGF's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms2Not sure if this is Celiac or just a gluten-free intolerance
Welcome to the forum, @MomofGF! I know you said you are not looking for a dx but the symptoms you describe scream of celiac disease as opposed to NCGS (Non Celiac Gluten Sensitivity). Celiac disease does not damage the stomach lining but rather the lining of the small bowel, i.e., the intestinal area right below the stomach. This is the area where... -
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- MomofGF replied to MomofGF's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms2Not sure if this is Celiac or just a gluten-free intolerance
I also forgot to add, her menstrual cycle is not regular. She gets maybe 5 periods a year. -
- MomofGF posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms2
Not sure if this is Celiac or just a gluten-free intolerance
Hey all I have a 17 year old daughter. Since last May 2024, she has not been able to digest gluten period. I want to be clear that I am not looking for a diagnosis but just someone who may be experiencing the same things. Here is what she has as symptoms; 1) first off, if she eats anything with gluten she is violently ill. She is bloated. Has extreme... -
- knitty kitty replied to Louise Broughton's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease4Louise
@Louise Broughton, Some types of interferon drugs can precipitate a Thiamine deficiency, by destroying thiamine and blocking its absorption. Thiamine deficiency symptoms encompass all the symptoms you listed. Gastrointestinal Beriberi caused by Thiamine deficiency has symptoms of vomiting, bloating, abdominal pain and diarrhea. I've experienced this...
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Welcome to the forum, @MomofGF! I know you said you are not looking for a dx but the symptoms you describe scream of celiac disease as opposed to NCGS (Non Celiac Gluten Sensitivity). Celiac disease does not damage the stomach lining but rather the lining of the small bowel, i.e., the intestinal area right below the stomach. This is the area where all of the nutrition from what we eat is absorbed. This lining is made up of millions and millions of microscopic finger-like mucosal projections that create an enormous nutrient absorbing surface area. Celiac disease causes chronic inflammation of this lining (when gluten is consumed) that wears down the finger-like mucosal projections or causes "blunting" of them as we say. This greatly reduces the nutrient absorbing surface area of the small bowel. All this explanation to make the point that long term undiagnosed and untreated (by a gluten free diet) celiac disease typically results in vitamin and mineral deficiency related medical problems and other symptoms, even for those who are eating well. Several of your daughter's symptoms and health issues, such as hair loss, fatigue and irregular menses could well be caused by celiac nutrient malabsorption. And nausea and diarrhea are certainly classic celiac disease symptoms. The problem is, as she has already been eating gluten free, an official diagnosis of celiac disease would require her to undertake a "gluten challenge" for a period of weeks. Given the severity of her reaction to gluten consumption, that does not seem advisable. I would suggest you consider getting her genetically tested for possessing the genes that have been connected with celiac disease. We know that two genes, RLDQ 2 and RLDQ 8, are primary markers associated with the development of celiac disease. Since 40% of the population possesses one or both of these genes, genetic testing cannot be used to diagnose celiac disease but it can be used to rule it out and, therefore, push the diagnosis toward NCGS instead. To answer your original question, let me assure you, as a moderator and one who has participated on this forum for many years, all of the symptoms your list in connection with your daughter's gluten-related disorder are common to the celiac/gluten sensitive community with the possible exception of the epidermal brown spots. Oh, yes, for an adult in often takes two years or more for thorough healing of the small bowel lining once going gluten free. Less for young people, probably. Regular mistakes in gluten exposure will extend that of course. I also wanted to add that it sounds like your daughter should be on some high potency vitamin and mineral supplements. And I'm talking about more than a multivitamin. All supplements must be gluten free as wheat starch can be used as a filler in pills. -
I also forgot to add, her menstrual cycle is not regular. She gets maybe 5 periods a year.
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Hey all I have a 17 year old daughter. Since last May 2024, she has not been able to digest gluten period. I want to be clear that I am not looking for a diagnosis but just someone who may be experiencing the same things. Here is what she has as symptoms; 1) first off, if she eats anything with gluten she is violently ill. She is bloated. Has extreme pain in her abdomen. She vomits and has diarrhea. This may last up to a day or it can go up to 3 at most. She was a camp counsellor this summer and the chef contaminated the gluten-free zone and a lot of people were sick but she was out for 2 days in their clinic. 2) extreme fatigue (she has fallen asleep in school a couple times) 3) joint pain and/or muscle pain 4) hair loss 5) frequently nautious 6) brown spots on skin (not a rash) Also, I heard it was genetic. I checked with my family and no one has any issue with gluten. I thought she might have had addisons disease because that’s where it could have developed but her blood was ruled out for that. They didn’t blood test her for Celiac weirdly and I didn’t know that is how you can be diagnosed to be honest. I am just worried. This girl feels ill everyday. I did read another blog where it was said it can take a year for the stomache lining to be ok again, would this be the reason for her feeling sick despite not have gluten in her diet what so ever? Thanks 🙏 for all your advice/feedback if any and have a great day MomofGF
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By knitty kitty · Posted
@Louise Broughton, Some types of interferon drugs can precipitate a Thiamine deficiency, by destroying thiamine and blocking its absorption. Thiamine deficiency symptoms encompass all the symptoms you listed. Gastrointestinal Beriberi caused by Thiamine deficiency has symptoms of vomiting, bloating, abdominal pain and diarrhea. I've experienced this. I took high dose Thiamine in the form Benfotiamine, and a B Complex. Thiamine can also be low on the Gluten free diet. Talk to your doctor about supplementing with Benfotiamine and the B vitamins. Interesting Reading: Gluten-free diet intervention reduces thiamine intake in two weeks, increases glycaemic response and decreases body weight in four weeks, with no long term nutritional deficiencies https://pubmed.ncbi.nlm.nih.gov/34583628/ Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/ -
By knitty kitty · Posted
Hi, @Blue Roan, I have Sjogren's Syndrome that made my salivary glands under my jaw swell. I also have dry eyes from Sjogren's. Yes, Sjogren's is yet another fun autoimmune disease that can occur in Celiac Disease. It starts in the salivary glands. Vitamin D deficiency can also make salivary glands swell. I was very deficient in Vitamin D also. Vitamin D is instrumental in regulating the immune system and lowering inflammation. My dentist checked for stones blocking ducts in the salivary glands, too, but I didn't have any of those. Yeah! Try cutting out the antihistamines, because they make everything dry up. Correcting my Vitamin D level to 80-100 nmol/ml has helped immensely. I also supplement with Omega Threes (flax seed oil, oil of evening primrose) which has also helped my dry eyes and reduced my enlarged salivary glands. Hope this gives you some direction to go next on your journey. Wish it was better news. Keep us posted on your progress! P.S. Interesting Reading: Association Between Vitamin D and Minor Salivary Gland Inflammation https://pmc.ncbi.nlm.nih.gov/articles/PMC9807185/ Outline of Salivary Gland Pathogenesis of Sjögren’s Syndrome and Current Therapeutic Approaches https://pmc.ncbi.nlm.nih.gov/articles/PMC10342367/
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