Aloha, could use a little insight from those who are familiar with celiac. I’m starting to think my dad , me and my son all have it As a kid I had severe stomach cramps and constipation. I would sleep on the bathroom floor all night often and the pain waves would end in diarrhea. I vomited often. Easy bruises, vitamin d&b12 deficiencies, asthma,  iron deficient anemia, chronic sickness, fluid in ears, hearing loss, adhd, depression, and as I got older extremely heavy periods, mood swings, and severe allergies where doctors would prescribe me epipens saying  I had a reaction but allergists would say I’m not allergic to anything. I’ve been so sick my whole life until I randomly decided to cut out our gluten because I was so tired of doctors. Felt great and all my symptoms started going away.    when my son was born people started making us meals and I ate gluten again and was breastfeeding. My son was always projectile vomiting, colic, acid reflux, screaming all night and day and doctors did what they did with me and treated symptoms separately. He’s 14 months now and always severely constipated, has stomach pains, poor sleeping, always had red eyes, loses weight, fluid in ears, rashes, 4 ear infections in 2 months. we don’t feed him dairy but started giving gluten when he was about 11mo old.  doctors just say to give him formula still , MiraLAX, acid reflux meds, no dairy and I feel like I’m symptom chasing just like I was my whole life.  has anyone had experience with toddlers having celiac? I didn’t do the blood test because poor guy has been under so much testing and er visits and I stopped giving him gluten 2 weeks ago so I didn’t want to do it for a negative test.  I also had all the same issues he’s having when I was a baby    I don’t want to eat gluten for long periods just for a positive test but has anyone been in this boat? Does celiac get progressive because I believe my dad has it too and his health is even worse than mine  mahalo       

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. 

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/