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6 years of battling

Mctutu

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Mctutu Newbie
Mctutu
Posted

Hello everyone. 

Desperate for answers! 

6 years ago I started with two end expulsion when I ate wheat, it started with spaghetti. Then shortly after that, 2 months maybe, barley had the same effect. A few months after that rye followed then spelt. Now I can't eat oatmeal doesn't matter if it's gluten free, I end up with cramps and pain. So I just avoid. 

Went to dr - he tested me (blood test) for celiac whilst I had been gluten free for over a year. Obviously it was negative. 

I'm also lactose intolerant. 

Fast forward to two years ago,4 years of gluten free,  tried the gluten challenge to have a blood test done again. 6 weeks one slice of bread a day, it was horrific! 

I ended up with blisters on my bot and elbows. My elbows looked like DH - blood Negative. 

So my question is, I got glutened four weeks ago, I had blisters on my thighs and fingers this time. Sides of my fingers, pin prick type blisters. I was as sick as a dog, both ends. I had a stool sample done and it revealed lots of fat globules which explains my floating waste but no bacteria/parasites.

I have hypothyroid, secondary adrenal insuffiency all well managed. No hashis. Otherwise ok. Other than the horrendous brain fog since the gluten incident. 

I had high IgA in my saliva but low in blood.

 

Should I opt for biopsy? Apparently I'm not allergic which is good, as I have multiple allergies.

appreciate any kind of advice you can offer!

 

thank u! 

 

 

 

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Irene Joanne Explorer
Irene Joanne
Posted
2 hours ago, Mctutu said:

Hello everyone. 

Desperate for answers! 

6 years ago I started with two end expulsion when I ate wheat, it started with spaghetti. Then shortly after that, 2 months maybe, barley had the same effect. A few months after that rye followed then spelt. Now I can't eat oatmeal doesn't matter if it's gluten free, I end up with cramps and pain. So I just avoid. 

Went to dr - he tested me (blood test) for celiac whilst I had been gluten free for over a year. Obviously it was negative. 

I'm also lactose intolerant. 

Fast forward to two years ago,4 years of gluten free,  tried the gluten challenge to have a blood test done again. 6 weeks one slice of bread a day, it was horrific! 

I ended up with blisters on my bot and elbows. My elbows looked like DH - blood Negative. 

So my question is, I got glutened four weeks ago, I had blisters on my thighs and fingers this time. Sides of my fingers, pin prick type blisters. I was as sick as a dog, both ends. I had a stool sample done and it revealed lots of fat globules which explains my floating waste but no bacteria/parasites.

I have hypothyroid, secondary adrenal insuffiency all well managed. No hashis. Otherwise ok. Other than the horrendous brain fog since the gluten incident. 

I had high IgA in my saliva but low in blood.

 

Should I opt for biopsy? Apparently I'm not allergic which is good, as I have multiple allergies.

appreciate any kind of advice you can offer!

 

thank u! 

 

 

 

The biopsy is a great idea- plus you only need to eat gluten for two weeks for that I think. 

Couldnt you have gotten a biopsy of your skin to check for DH? That would be enough for a celiac diagnose. People do test negative on blood work sometimes and then have a positive biopsy

squirmingitch Veteran
squirmingitch
Posted

60% of celiacs with dh test negative on the celiac serum panel. This may be why you tested negative. I would agree that a dh biopsy sounds like the best route. They take it NEXT to an active lesion NOT ON one. Be sure that's how they do it or it will come back negative.

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