Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Help Celiac.com:
    eNewsletter
    Donate

6 years of battling


Mctutu

Recommended Posts

Mctutu Newbie

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! 

 

 

 

Link to comment
Share on other sites

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Irene Joanne Explorer
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

Link to comment
Share on other sites
squirmingitch Veteran

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.

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,458
    • Most Online (within 30 mins)
      7,748

    RUTHANN BRANOFF
    Newest Member
    RUTHANN BRANOFF
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      And the fact is, no two celiacs will necessarily respond the same to gluten exposure. Some are "silent" celiacs and don't experience obvious symptoms. But that doesn't mean no harm is being done to their gut. It just means it is subclinical. 
    • AlyO
      Thank you, Trents.  I appreciate your helpful and friendly reply. It seems more likely to be a bug.  It has been a pretty severe bought. I feel that I don’t have enough experience to know what signs my little one shows after exposure to gluten. 
    • trents
      Hannah24, be aware that if you are on a gluten free diet, you will invalidate any further testing for celiac disease (except genetics) and would need to go back to eating significant amounts of gluten for weeks or months to qualify for valid testing.
    • knitty kitty
      Hello, @Hannah24 Have you had a DNA test done?  Celiac Disease is genetic.  You must have at least one gene to develop celiac disease.  You don't have to be consuming gluten for a genetic test.   Anemia, diabetes and thiamine deficiency can cause false negatives.  Some lucky people are seronegative, but still have celiac disease.  Peripheral neuropathy, tingling in hands and feet are symptoms of vitamin deficiencies.  Vitamin C, Thiamine B1, Niacin B3, Pyridoxine B6, and Cobalamine B12 can each cause peripheral neuropathy.  These same vitamins are needed to produce blood cells.  Most undiagnosed Celiacs suffer from nutritional deficiencies. The DNA test would be helpful.
    • trents
      We do hear of cases of remission but they generally eventually revert back. I wouldn't push your luck.
×
×
  • Create New...