Changing symptoms?

[Viola11]

Hello!
 

This is my first post in here… I would like to get your input or experiences on changing symptoms with celiac or gluten intolerance. 
In my 20s I had severe eczema, and was prescribed steroid creams by the dermatologist. It however kept coming back. On my own, I ordered a food sensitivities test (IGg) and it showed I was very sensitive to gluten (gliadine) and some other substances (wheat, soy, egg white…). They told me to avoid all those foods for a long time, then to reintroduce them and see if it was better. This was 10 years ago. (They said food sensitivities can go away like that). So I avoided all gluten for several years. Then after my pregnancy (4 years ago) I started reintroducing gluten and the other foods and the eczema stayed away, so I thought all was clear and continued eating “normally”. About 2 years ago I started having a pain in lower left belly. Got a blood test/ stool sample, was all ok. They checked for a hernia, for ovarian cyst, all ok. The pain came and went, in waves, and all those tests had a lot of time between them. In the last year I also started losing lots of weight, feeling more anxiety, having a mild rash (bumps) on forehead (not itchy), and I have more painful spots in left side belly. Also a lot of changes in bowel movements. I finally get to see the doctor again tomorrow and will ask for a gluten/ celiac test. But, have any of you experienced a change in symptoms like that? My eczema never came back, and that was the original symptom (and back then I didn’t experience the other things, only sometimes bloated tummy).

Thanks for your input! 

[trents]

Welcome to the forum, Viola11! I can't speak to your question as I have never had that experience. But I just wanted to ask if you have started eating gluten free yet. You would need to be on "regular amounts" gluten for about two months leading up to the test blood draw in order for the testing to be accurate? Sounds like you have not started a gluten free diet since going back on regular amounts of gluten some years ago but I just wanted to make sure you realize that.

It's too bad you were not tested for celiac disease ten years ago. Having said that, some experts believe that gluten sensitivity (NCGS or Non Celiac Gluten Sensitivity) can be a precursor to developing celiac disease.

[Scott Adams]

I agree, and now might be the perfect time for you to be retested if you've been eating gluten daily for the last 6-8 weeks. 

The symptoms you mention could certainly be related to untreated celiac disease and/or NCGS.

[Viola11]

3 hours ago, trents said:

Welcome to the forum, Viola11! I can't speak to your question as I have never had that experience. But I just wanted to ask if you have started eating gluten free yet. You would need to be on "regular amounts" gluten for about two months leading up to the test blood draw in order for the testing to be accurate? Sounds like you have not started a gluten free diet since going back on regular amounts of gluten some years ago but I just wanted to make sure you realize that.

It's too bad you were not tested for celiac disease ten years ago. Having said that, some experts believe that gluten sensitivity (NCGS or Non Celiac Gluten Sensitivity) can be a precursor to developing celiac disease.

Thank you for your reply! 
I have been eating gluten regularly for the last couple of years. It’s only now that my symptoms are worse (since the last few months) that I have been thinking maybe it’s the gluten… and so while I wait for the doctor’s appointment I’m eating some gluten every day. I just hope all the necessary tests can happen quickly so I can cut it out again and see if it gets better… 

Thanks again!

[Viola11]

13 minutes ago, Scott Adams said:

I agree, and now might be the perfect time for you to be retested if you've been eating gluten daily for the last 6-8 weeks. 

The symptoms you mention could certainly be related to untreated celiac disease and/or NCGS.

Thank you for your reply! I have been eating gluten regularly… but I have to say since I started thinking that might be the cause it’s hard to make myself eat those foods. I hope the tests can happen quickly. The waiting is the hardest! It’s reassuring to know the symptoms might point to gluten intolerance. (And I agree, now is the perfect time to ask for these tests) Thanks again!

[Scott Adams]

Better late than never, let us know how it goes. There are also home test kits you can order online, for example https://imaware.health 

[Kurlykaitlyn]

I was diagnosed at age 24. Im 28 now. I was sick all the time previous to diagnosis and after, but not in the way I am now. My symptoms have changed. 
I often had stomach cramps and abdominal pains regularly and especially after gluten, sometimes eczema, joint pains- especially in my hands and fingers! Headaches or migraines, and anxiety! 
After some years of being extremely careful about cross contamination and avoiding gluten as often as possible, I get watery stools about 3 hours after exposure. Sometimes sooner than that. Intense nausea and light headed/dizziness along with the diarrhea. I’ll keep needing the bathroom basically until my stomach is empty. Every 15min for about 45-90min. It’s like clockwork and happens due to any gluten exposure. At the time of diagnosis I remember my friend telling me I’m lucky I don’t get diarrhea like his other celiac friend does. Lol it’s my main symptom now! But in a way, I’m sort of grateful because it’s super clear it’s a celiac response and not something else. And of course after, the next few days I’ll experience dizzy spells, weakness and fatigue! Joint pains and sensitive stomach!