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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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    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, you had both and endoscopy with biopsy and a colonoscopy. That helps me understand what you were trying to communicate. No, no! It never occurred to me that you were trying to mislead me. It's just that we get a lot of posters on the forum who are misinformed about what celiac disease is and how it is diagnosed so I need some clarification from you which you were so gracious to give.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I had both the genetic genes for celiac.  My gastroenologist advised he also took a biopsy during one of my colonoscopies and endoscopy and advised I had celiac disease, along with stomach ulcers from my esophagus stomach down to my small bowel. I was shown the ulcers on the catscan and endoscopy report.  I also had polyps in 3 places throughout my large bowel. I was on a strict diet for months following.  I am sorry if I didnt define how I was diagnosed with celiac disease.  I am sorry if you think I was misleading you. I also had to pay $150.00 for the genetic testing.
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      So, I'm a little confused here. I understand you to say that you have not been officially diagnosed with celiac disease. Is this correct?  You have had genetic testing done to check for the potential for developing celiac disease and that was positive. Is this correct? I think you meant to type "gluten sensitivity" but you typed "gluten insensitivity". Just so we are clear about the terminology, there is celiac disease and there is NCGS (Non Celiac Gluten Sensitivity). They are not the same but they have overlapping symptoms. Celiac disease causes damage to the small bowel lining but NCGS does not. NCGS is often referred to in short form as gluten sensitivity. However, people often use the terms celiac disease and gluten sensitivity interchangeably so it can be unclear which disease they are referring to. Genetic testing cannot be used to diagnose celiac disease but it can be used to establish the potential to develop active celiac disease. About 40% of the general population has one or both of  the genes that have been most strongly connected with the potential to develop active celiac disease but only about 1% of the population actually develops active celiac disease. This makes the genetic test useful for ruling out celiac disease but not for diagnosing it. A colonoscopy cannot be used to diagnose celiac disease because it doesn't permit the scope to go up into the small bowel where celiac disease does the damage. They use an endoscopy ("upper GI) for checking the small bowel lining for celiac damage.
    • barb simkin
      celiac, chocolate and alcohol

      By barb simkin · Posted

      I did nor read the chocolate pkg as it was of fered to me and I ate 2 pcs. I do know that only very dark chocolate and and a very few others are gluten free. Most alcohols contain gluten. I have several yrs of not knowing my celiac condition as docs would not do the test. After looking on the internet about my sufferings I insisted on the gene trsting which showed positive for gluten insensitivity and a biopsy on my next colonoscopy that also showed positive which could not help the damage done to my small bowel. So I very rarely have a glass of wine
    • trents
      celiac, chocolate and alcohol

      By trents · Posted

      @barb simkin, are you sure the chocolate products are gluten-free and not "manufactured on equipment that also handles wheat products and tree nuts", i.e., cross-contamination? And what kind of alcoholic beverages are we talking about? Most beers are made from gluten-containing grains. Just checking.
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