Not sure if this is Celiac or just a gluten-free intolerance

[MomofGF]

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

 

 

[MomofGF]

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

[trents]

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.

[Scott Adams]

5 hours ago, MomofGF said:

Also, I heard it was genetic. I checked with my family and no one has any issue with gluten.

I just want to add that many celiacs do not have any obvious symptoms, but still have the same health risks if they continue to eat gluten. Unless all of her first-degree relatives, including yourself, are screened for celiac disease, there is not way to be sure that other relatives don't also have it (some studies have shown that up to 44% of first degree relatives also have celiac disease).

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.

 

 

[MomofGF]

@trents @Scott Adams I want to thank you both very much for putting me at ease with your replies. I am making an apt with her doctor this week but all my worries of it being more have dissipated. This is all new to us and I think she originally had it from 2021. She lost 20 lbs because it felt like whatever she ate caused a crazy reaction. She was bloated, would have severe diarrhea and/or vomiting and it was a year of testing and nothing coming out of it. However celiac was never a thing that she was tested for.

Also I just realized, my dad had a bathroom time when he would come home after night shift to poop. It was diarrhea every time and it never occurred to me that maybe it could be a reaction🤷‍♀️🤷‍♀️ I am going to ask my mom why that was a thing. He is dead now, so testing is not an option. 

These answers really helped me out and I truly appreciate your help ❤️❤️