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Eating a lot of gluten before biopsy

Airlion
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Airlion Rookie
Airlion
Posted

I have been 80-100% gluten free for years. I have been eating gluten for 3 werks pre-biopsy. I have thrown up, acid reflux is out of control, mouth sores and canker sores. Fatigue, puffy achy joints, head aches.... one week to go. I am needing encouragement and stories. My blood test was neg years ago. And maybe I am not celiac. But certainly gluten sensitive: this is awful. 

Ugh 

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cyclinglady Grand Master
cyclinglady
Posted

Hang in there!  A challenge can be very tough.  My heart goes out to you.  My only advice is to rest as much as possible.  

If you just had the screening TTG test years ago, your diagnosis might have been missed.  For example.  I only test positive to the DGP IgA test and never the TTG or EMA.  And do you know that 10% of celiacs are seronegative?

Whatever the outcome, it looks like gluten is not for you!  

 

 

Ging Contributor
Ging
Posted

Oh, wow, I sure hope you are done with this soon - you're almost there as the post date implies!  Don't give up after all this investment - maybe you'll get that positive result for the insurance coverage if nothing else.  Best to you!

lyfan Contributor
lyfan
Posted

There's something I don't understand about blood protein tests. For someone who currently has been gluten-free, and ignoring the cost issue, wouldn't the proper procedure be to DO THE TESTS to get a baseline of the protein levels, THEN do a gluten "challenge" and RETEST to see what difference there is in blood protein levels. Regardless of whether someone completes 12 weeks or is in agony after four...Do the test once, to get the baseline. Then repeat, to see what changes the glutenous diet has caused.

Having someone tell me to poison myself for a whole twelve weeks when that may be totally unneeded, just doesn't sound like good medicine. Or good science.

 

frieze Community Regular
frieze
Posted
  • cost, and habit.
Airlion Rookie
Airlion
Posted
  • Author

Some time ago I did food intolerance test with my naturopath. Wheat and gliadin came up as high (along with 34 other foods). I ate wheat for 3 weeks before my biopsy this past Friday. Wednesday of last week I was throwing up and so sick. FINALLY IT IS DONE!!! And I am done with wheat, gluten regardless of results. This weekend was exhausting and yesterday I slept so much. I have been having CRAZY BM's and yesterday my tongue was bleeding! Way at the back I think. It seemed to have stopped. My fingers don't feel like sausages anymore! And my puff/bloat is going down down down. I am feeling more myself! 

I still don't know if I am celiac. But I know I have never felt worse eating it regularly. And I know I feel much better now. But I am starting to wonder if maybe times where I have thought I was eating gluten-free, I perhaps wasn't. Or maybe had cross contamination. And maybe that is why I kept having bad days here and there. I am going to go gluten free like a celiac and see if I improve. 

 

ravenwoodglass Mentor
ravenwoodglass
Posted

Glad your challenge is over and you can now heal. Sometimes the body gives us answers the most clearly. If there is anything that we can help with feel free to ask.

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cyclinglady Grand Master
cyclinglady
Posted
(edited)

 

 

On 10/11/2018 at 2:23 PM, lyfan said:

There's something I don't understand about blood protein tests. For someone who currently has been gluten-free, and ignoring the cost issue, wouldn't the proper procedure be to DO THE TESTS to get a baseline of the protein levels, THEN do a gluten "challenge" and RETEST to see what difference there is in blood protein levels. Regardless of whether someone completes 12 weeks or is in agony after four...Do the test once, to get the baseline. Then repeat, to see what changes the glutenous diet has caused.

Having someone tell me to poison myself for a whole twelve weeks when that may be totally unneeded, just doesn't sound like good medicine. Or good science.

 

Celiac testing is not perfect unfortunately.    For example, some celiacs do not have measurable antibodies in their bloodstream, yet they have intestinal damage.  Some celiacs can maintain high levels of antibodies in their blood stream even though their intestines have healed (based on repeat biopsies) and years of being gluten free.  Again, the tests are not perfect, but they are all that we have for now.  It is one is of the reasons why intestinal biopsies are still the gold standard in diagnosing celiac disease.  

The good news is that celiac disease testing does catch most — just not all.  

Edited by cyclinglady
will4318 Apprentice
will4318
Posted
On 10/18/2018 at 5:00 AM, Airlion said:

I still don't know if I am celiac. But I know I have never felt worse eating it regularly. 

 

I was told to have sime gluten with every meal untill my biopsy and i feel much worse for it so no matter what the result i think i definitely have some issue with gluten. 

Interestingly my consultant said that with my symptoms and deficiencies he would consider me to have coeliac even with a negative biopsy if i have a positive gene test.

He said that something is clearly wrong so just because he cannot find it doesn't rule it out. 

 

  • 2 weeks later...
Airlion Rookie
Airlion
Posted
  • Author

Very interesting. Well my GI booked me in for a followup. So I am guessing it is to tell me the biopsy was positive since he never books follow ups when all is normal. 

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