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Blood tests vs biopsy


Dp0155

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Dp0155 Rookie

Hi guys, 

I last week received diagnosis of celiac via blood tests and what the dr described as “pretty much 100% certain you are celiac as we don’t usually see numbers like that”. I suffered from severe symptoms nausea , vomiting , stomach pains , bloating. I dropped 6kg in weight rapidly and my state was awful to say the least especially as an advid athlete. 

I was advised by the dr to go gluten free immediately and the difference has been astounding. I can train again with increased strength , I can get outta bed some days I just couldn’t , no more nausea ect. I’m also on vitb12 and iron pills as I was also malabsorpbing. 
 

I was advised follow up appointments would be made and I now have an appointment with my dr to discuss a biopsy. I mean as I understand it’s the gold standard for testing in adults but my dr seems to be convinced I’m celiac, so it did take me by shock when she said once the biopsy date comes through I would need to eat gluten again for 6 weeks. Like what am I meant to do be happy with feeling horrendous again for 6 weeks and get weak ! Seems so counter productive to me. I’m just wondering if anyone else has had Similar issues and if I should contest a biopsy or not ? 
 


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cyclinglady Grand Master

While I think an endoscopy to obtain biopsies can be very valuable (benchmark), getting one now during this pandemic seems risky.  Your blood tests were high and you responded to the diet.  You would have to do a gluten challenge of 2 to 4 weeks (for endoscopy, longer for blood tests) which can be pure misery once you have been gluten free.  If you need a solid diagnosis, consider waiting until this crisis is over.  In the meantime, in six months, repeat the blood tests to see if they are trending downward.  Consider a genetic test too.  Many doctors will give you a formal diagnosis based on all these results.  

  • 1 month later...
Larzipan Rookie

Hi there, I'm not a medical professional but I had a very similar experience. I got a very high result on my blood test and my gastro doctor thought it was pretty definite that I had Celiacs Disease. They wanted me to do a colonoscopy and an endoscopy to 100% confirm it, which I could not afford so I turned it down. I've been eating gluten free since November and all of my symptoms have gone away. I feel very confident that I have Celiacs even though I didn't get a biopsy. I no longer have nausea, chronic diarrhea, migraines, anxiety/depression, and terrible joint pain after quitting gluten. I personally don't think it's necessary to get a biopsy if you can feel your body healing itself while being gluten free. I don't think it's worth the pain of eating gluten again for weeks to get further proof that an ingredient really hurts your insides, but that's just me haha.  

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    • trents
      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
      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
      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
      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
      @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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