Please Help!

[adamsona28]

Hi,

 

I'm sorry this is so long. I explain my situation in detail below but the main question is:

 

Is it possible to have such severe celiac symptoms and then after a long time being gluten free suddenly be asymptomatic?

 

For 5 years my sinuses were completely swollen shut (even though I took prednisone, prescription nasal spray, and 3 allergy pills a day. I even had surgery to open pathways - which only lasted a couple months until they were swollen shut again). I also had eczema on my hands and scalp, little bumps on my arms, constantly bloated, stomach pains, and alternating constipation and diarrhea (these symptoms I have had my entire life). I also slept about 12 hours a day and sometime took 2-3 hour naps in addition and still always felt tired. Towards the end I was getting pretty bad brain fog as well. I had seen a bunch of doctors and they all told me I was fine - that it was IBS or in my head.

 

I finally went to see a holistic doctor who immediately suspected celiac. I had bloodwork done that came back positive. I immediately went on a strict gluten free diet and within 2 weeks ALL of my symptoms disappeared. This was nothing short of miraculous to me - for 5 years I couldn't breath through my nose and just like that I was off all medications and breathing clearly. I was overjoyed! This doctor said a biopsy was not necessary because of the positive blood work and the complete elimination of symptoms on a gluten free diet.

 

I have been following a gluten free diet for 1.5 years. In the first 6 months I think I got glutened about 3 times with pretty severe reactions. Brain fog, exhaustion, and massive diarrhea - couldn't be away from a toliet for 3 days. After the first 6 months I never experienced that again. Within the last 6 month (so a year of strict gluten free) I started eating cross contaminated foods - mainly french fries fried in the same oil as gluten products WITH NO PROBLEMS. 

 

Just 2 days ago I started doubting my diagnosis and I purposely ate gluten. I had 3 gluten doughnuts and a sandwich on gluten bread with seitan (seitan is a vegan meat substitute made exclusively from gluten). I was expecting to get sick immediately - maybe not even be able to finish the sandwich. But to my amazement and surprise I had no reaction at all - it's been 2 days. I mean I had slight bloating and a tiny bit of gas - but nothing like a regular gluten reaction.

 

Does this mean I'm not celiac? Is it possible to have such severe celiac symptoms and then after a long time being gluten free suddenly be asymptomatic? 

 

I'm thinking that perhaps I had leaky gut and it was causing all those problems but a strict gluten free diet healed my gut and now I can tolerate gluten. Maybe I was never celiac all along?

 

Any insight or experience with having severe reactions and then having none would be greatly appreciated! 

 

I am a strict vegan so it would be so great if I wasn't celiac and could start eating gluten again. But I am worried that I had positive bloodwork and such a clearing of symptoms. I don't want to damage my intestines and increase my risk of cancer.

 

I'm so sorry this post was so long. Thank you so much if you made it too the end. I would love any feedback.

[kareng]

What tests were actually done by this holistic person?  Many of them don't do the actual Celiac blood work so you may never have had a positive test after all.

 

It is possible for a Celiac, that it could take a few days or a few weeks to build up enough antibodies to start damaging the intestines and cause problems.  Most people seem to get a reaction within a day, but a few are different.

[adamsona28]

What tests were actually done by this holistic person?  Many of them don't do the actual Celiac blood work so you may never have had a positive test after all.

 

It is possible for a Celiac, that it could take a few days or a few weeks to build up enough antibodies to start damaging the intestines and cause problems.  Most people seem to get a reaction within a day, but a few are different.

I had 2 tests done. 

 

1.Wheat/Gluten Proteome Reactivity & Autoimmunity

I test positive on (theres a bunch of other stuff listed that I was negative on)

Wheat IgA

Transglutaminase-2 IgG

Transglutaminase-3 IgA

Transglutaminase-6 IgA

 

2. Gluten Associated Cross-Reactive Foods and Food Sensitivity

negative on all

 

I had been eating gluten free for about two weeks when I took the blood work. Could I get those positive results but still not be celiac? It's just so frustrating because of my symptoms that cleared up it seems most likely I am but it also seems impossible that I would all of a sudden have no reaction.

 

Thanks

[kareng]

Those don't sound like the medically accepted Celiac tests.  Maybe you don't have Celiac? 

[adamsona28]

Those don't sound like the medically accepted Celiac tests.  Maybe you don't have Celiac? 

Do you know what the commonly accepted tests for celiac are? I thought testing of the IgG and IgA was pretty common. I'm going to contact a gastro doc today and see if I can be retested - I'm just not sure if they'll do it at this point because I'm not showing symptoms. 

[kareng]

Do you know what the commonly accepted tests for celiac are? I thought testing of the IgG and IgA was pretty common. I'm going to contact a gastro doc today and see if I can be retested - I'm just not sure if they'll do it at this point because I'm not showing symptoms. 

 

 

You need to be eating gluten to get a positive test.  You might have had one of these, but I don't think those numbers would be positive.  Without a reference range and the complete lab report, its hard to know.  I see the "Cross-reactivity" test was done, that makes me doubt they did any tests that were legitimate.  Sorry.

 

This is a good website to get some answers:

 

Open Original Shared Link

 

Open Original Shared Link

 

 

Open Original Shared Link