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adamsona28

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adamsona28 Newbie
adamsona28
Posted

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.

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kareng Grand Master
kareng
Posted

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 Newbie
adamsona28
Posted
  • Author

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 Grand Master
kareng
Posted

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

adamsona28 Newbie
adamsona28
Posted
  • Author

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 Grand Master
kareng
Posted

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

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