I also forgot to add, her menstrual cycle is not regular. She gets maybe 5 periods a year. 

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    

@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/

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/

In my case I the rash and marks that present tend to be AFTER I have been scratching the skin, not before.  There are several varieties of eczema.  .   https://www.aad.org/public/diseases/eczema/types A few years ago, I was convinced my son had ringworm.  He had marks all over his torso, and given we live near livestock, I assumed he'd picked something up at the nearby farm.  Took him to the doctor who had seen a lot of different types of rash fully expecting him to agree, and he told me, "No, he's got discoid eczema".  He gave me a cream to put on my son, and it was gone within a few days and has never come back.  I think then it was to do with bubble bath we were using. Do you use that sort of thing? If so, do use hypoallergenic products, and make sure you rinse properly.  I remember one dermatitis saying only reserve 'heavy soaping' for under the arms.  Any large areas of skin which don't look dirty just need water.  This has been helpful.  A good emollient cream would be good too, for eczema sufferers, to be put on straight after your shower or bath.    Another tip that I have found helpful is 'treat any new outbreak'.   If I do that, I find it really stops it spreading.  I hope you get to see a dermatologist soon, but for the meantime do keep a food diary.  Try to identify all the foods that are causing your eczema and mouth symptoms.  I am sorry your doctors are being so dismissive of your symptoms as those sound very real to me.  I have a friend who has experienced the same and she couldn't get any doctors to believe her either.  In the end she paid for a private allergens test and it turned out yeast was a huge trigger for her.