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 ❤️❤️

[MomofGF]

Hey all!! M

i want to thank everyone for their suggestions and advice - I am a single mother of 4 (now 3) and was helping with my oldest leaving the nest. I have another child with medical issues and with work (it’s our end year), life has been crazy and I haven’t had the time to answer. 
 

so we got a blood test done for my daughter that can’t digest gluten. She had been eating gluten for 2 weeks. The blood work came back normal? How is that possible. I see her with my own eyes and it’s not normal. Is that not long enough? 

I am thinking about having her eat gluten another week then go to the hospital and see what they say. 
 

She did have 3 gluten-free days in those 2 weeks but she was getting afraid to eat and I told her to may take a day off - was this a bad thing to do? Girl was having constant back pains and muscle soreness as well. Headaches/migraines…should I wait longer. I did see 4-6 weeks of Gluten consumption prior to testing… kind of at a loss now. 
 

Thanks to everyone for whatever advice you can give.

 

Enjoy your Sunday 😃👋👋

 

 

 

[trents]

A "gluten challenge" of two weeks would be the bare minimum for expecting to render valid testing, and that would have been paired with eating a minimum of 10 g of gluten each day (the equivalent of 4-6 slices of wheat bread). And with the three gluten free days in the midst of that two week gluten challenge I would not have confidence in the results of the testing. Was there a blood test done for IGA deficiency? Can you post the test names that were done with the scores and with the reference ranges used by the lab?

By the way, with celiac disease the issue is not being able to digest gluten. Celiac disease is an autoimmune disorder defined by the fact that ingestion of gluten triggers an immune system response that attacks the membrane that lines the small bowel. The immune system mistakenly identifies the protein gluten as a biologic invader.

Edited Sunday at 10:25 PM by trents

[MomofGF]

I will have that info soon but it was a laundry list of a test and 9 viles.

ok so there were some days she was gluten she barely ate because of the reactions. I told her 3 weeks of atleast 10g’s a day and no gluten-free days. Thanks so much for your help! I didn’t know my suggestion for gluten-free days would have hurt her. 
 

I will come back with the list to make sure the req was proper!! 

[Scott Adams]

Considering how ill your daughter seems to get from eating gluten you may want to weigh the importance of an official celiac disease diagnosis against the potential health issues she would need to endure to get a formal diagnsis.

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

[MomofGF]

Thanks for your response Scott.

They don’t immediately go away. If she consumes gluten on accident, then she is sick for a couple to a few days.

She worked at a summer camp and this summer the chef contaminated the food and that one incident landed her in the infirmary for 2 days. She couldn’t stay longer because her cabin didn’t have a replacement councillor. Not to mention it affected her skin and the other person who had celiac offered her his cream he uses!! It helped but she still has the scarring from all the scratching. 

[MomofGF]

I really did tell her to have gluten-free days. Her negative result is on me and some days she barely ate because of how sick she felt. 

[trents]

20 hours ago, MomofGF said:

I will have that info soon but it was a laundry list of a test and 9 viles.

ok so there were some days she was gluten she barely ate because of the reactions. I told her 3 weeks of atleast 10g’s a day and no gluten-free days. Thanks so much for your help! I didn’t know my suggestion for gluten-free days would have hurt her. 
 

I will come back with the list to make sure the req was proper!! 

@MomofGF, I would refer you to the link from Scott's post above about Celiac Disease Blood Antibody tests as far as what labs we are looking for. That should narrow in down in that we are not looking for a complete CBC/CMP report. I would especially like to know from her labs if she is IGA deficient because that would make increase the likelihood of negative IGA antibody test scores. But I do agree with Scott in questioning the need for pursuing another gluten challenge for the purpose of more accurate testing. I think you already know your daughter must avoid gluten, whether because she has celiac disease on NCGS. At the end of the day, the antidote is still the same.

[trents]

39 minutes ago, MomofGF said:

I really did tell her to have gluten-free days. Her negative result is on me and some days she barely ate because of how sick she felt. 

Not necessarily. She may have NCGS and in that case doing a perfect gluten challenge would still yield negative antibody test scores. Don't beat yourself up over this.

[MomofGF]

Where I live - Celiac is covered on our taxes and is considered a disability as well. So that’s one reason (not just for me because she is almost 18 but when she is out in the world and starts out, I would hate for her to be broke all the time and barely able to feed herself) but she also has many health issues that could be related to Celiac or maybe something else!! But that has to be taken off the table first.

She has been so sick since she was 13/14 - dropping 20lbs because of this issue. Had her doctor thought about it then maybe we would have known but this was never tested.

Her family doctor never told us what we needed to do aside from eat gluten. It wasn’t explained to us and maybe I should have came here first but I didn’t realize what it meant. Once I see the results online I will come back here with them. I took a pic of the req but it disappeared completely from my phone. I have a bad memory so I don’t remember what they tested for.

thanks again for all advice.

it is greatly appreciated 

Nadia 😀👋

 

 

[Liamclarke]

I was diagnosed with celiac and basically had stunted growth because my body wasn’t taking In nutrients which may explain the weight loss I would take this seriously and get tested

[Brook G]

Years ago when I told my GI specialist that I'd like to be tested for Celiac he told me that being I had been gluten-free for over a year, I would test negative.  In order to get an accurate reading I would have to eat a full gluten diet for 5 weeks.  I agreed to do it and on the way home I stopped at the grocery store and stocked up on my favorite breads, deserts, and every other gluten product that I love and hadn't eaten for over a year.

Five days later I was in agony!  I was bloated, I stopped going poo, I could barely move my joints and I felt like my hands had been crushed in a car door.  I was bent over and couldn't stand straight, and I moaned constantly.  I had a very difficult time sleeping because of the pain. I lost nearly 20lbs that I didn't need to loose, and I had to go on a liquid diet to reset my digestive track.  I was sick for weeks.

Because of this experience, I can't recommend that anyone put themself through the change of eating a gluten free to eating a full gluten diet.  For me, it wasn't worth getting an official diagnoses.  I'm assuming that I'm probably extremely gluten intolerant because QUINOA gives me a gluten reaction.

Most of us have similar symptoms, but they do vary.  I'm not qualified to diagnose your daughter, but some of her symptoms fit the diagnoses.  She may be getting gluten from somewhere and not realize it.  I do recommend a good GI specialist and testing other than the blood test which she would have to eat gluten for.

[trents]

@Brook G, would you explain what you mean when you say, "I'm assuming that I'm probably extremely gluten intolerant because QUINOA gives me a gluten reaction." Quinoa is naturally gluten free. However, it is possible to have been cross contaminated with gluten-containing grains and the seed coat lectins can make some people (like me) quite ill if it is unwashed quinoa. 

[Brook G]

People who are Celiac don't have a gluten response to Quinoa, but some people who are gluten intolerant do.  I react to quinoa just like I do to gluten.  Freddies/Kroger came out with their own gluten-free Bread and I didn't think to read the ingredients.  I couldn't figure out where I would have gotten gluten in my diet until I read the ingredients in their bread... QUINOA

[knitty kitty]

Yes, some people with Celiac do react to quinoa.  I know i do.  Apparently, two different "breeds" of quinoa can stimulate the immune system.

Read here...

Variable activation of immune response by quinoa (Chenopodium quinoa Willd.) prolamins in celiac disease

https://pubmed.ncbi.nlm.nih.gov/22760575/#:~:text=Cultivars Ayacuchana and Pasankalla stimulated,for patients with celiac disease.

And some of us react to corn (maize) as well.

Maize prolamins could induce a gluten-like cellular immune response in some celiac disease patients

https://pubmed.ncbi.nlm.nih.gov/24152750/

 

P.S. @Brook G have you thought about getting a genetic test done for known Celiac genes?  

Edited 13 hours ago by knitty kitty
Added Post Script

[trents]

10 hours ago, Brook G said:

People who are Celiac don't have a gluten response to Quinoa, but some people who are gluten intolerant do.  I react to quinoa just like I do to gluten.  Freddies/Kroger came out with their own gluten-free Bread and I didn't think to read the ingredients.  I couldn't figure out where I would have gotten gluten in my diet until I read the ingredients in their bread... QUINOA

I question your terminology. I believe "gluten intolerance" is used as a synonym for celiac disease in most circles today whereas "gluten sensitivity" is used of NCGS (Non Celiac Gluten Sensitivity) though you still see a lot of inconsistency in how the terms are deployed.