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I Was Off Gluten For 3 Weeks But Would Like To Get Tested

Libbyanne

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Libbyanne Newbie
Libbyanne
Posted

I have been tested for Celiacs before (maybe twice) via blood tests but was always just told the tests were negative. I never saw my actual results so I don't know if they were high or if they tested for everything necessary. After dealing with "IBS" problems for years (and now realizing all the other problems I have that are related - nightmares, vertigo, mood swings, hunger, brain fog, etc.) I stumbled upon an article discussing Gluten Intolerance and decided to give the gluten free diet a shot. I felt better instantly, in all areas, and stuck with it for three weeks. My doctor is still pushing for a colonoscopy to rule out Crohn's but I've decided if I'm going to do that I would also like the endoscopy to test for Celiacs. My question is ... since I was gluten-free for three weeks, how long would I have to go back on gluten in order for the test results to be accurate? Also, if I wanted to try the blood test again first, or even have them test for Gluten Intolerance first, would the time "back on gluten" be the same for those tests?? I'm pretty miserable when I'm eating gluten so I'm hoping I wouldn't have to do the full 3-month gluten challenge that I keep hearing people talk about, but I do want the results to be accurate.

Any advice is appreciated. Thanks!

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karenhockley Apprentice
karenhockley
Posted

Don't quote me on this but I think you have to be on gluten for at least 3 months (not too sure though). If I were you I'd also get the Doctor to test for gluten allergy, I've got a few friends who have gluten allergy and the symptoms they had mimic Celiac. They were also tested for Celiac but test was negative. Hope this helps out a bit and good luck. What ever the results of the tests are do what makes you feel better and if that means staying on the gluten free diet then do that

Libbyanne Newbie
Libbyanne
Posted
  • Author
Don't quote me on this but I think you have to be on gluten for at least 3 months (not too sure though). If I were you I'd also get the Doctor to test for gluten allergy, I've got a few friends who have gluten allergy and the symptoms they had mimic Celiac. They were also tested for Celiac but test was negative. Hope this helps out a bit and good luck. What ever the results of the tests are do what makes you feel better and if that means staying on the gluten free diet then do that

Thanks for the info, Karen. I'm not sure I'm up for 3 months...especially during swimsuit season :(. I've requested to have all my lab results sent to me so I guess I'll start by making sure they tested me correctly and go from there.

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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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