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Should I get retested?

mcez
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mcez Newbie
mcez
Posted
(edited)

I was tested for celiac in February because of extreme stomach issues that had been going on for a couple of months. My doctor had previously told me to go gluten free because I noticed symptoms after ingesting gluten, and I had the blood test after being gluten free for at least a week. It came back negative, but I decided to stay mostly gluten free. I was also diagnosed with a Vitamin D deficiency, which I know can be a symptom of celiac. I'm a college student on a meal plan at a school that is not accommodating to dietary restrictions so it was hard to do it 100% but I made my best effort. I did notice that I felt better the longer and stricter I was gluten free. Last weekend, I had a couple of bites of a chocolate chip cookie because I was at a restaurant with my family, and within 10 minutes I thought I was going to throw up and was in extreme pain for about 24 hours afterwards. Along with the lasting pain and nausea, I found it really hard to focus on anything for a couple days and felt more tired than usual. At this point I'm wondering if I should be retested because of the extreme reaction that I had to only a few bites of something that contained gluten. 

Edited by mcez
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Ennis-TX Grand Master
Ennis-TX
Posted

Did they do the full blood panel? Do you have copies of the test so someone here can help you interpret the results?(many doctors are not celiac savy). Did they do the endoscope and biopsy?

The test requires eating gluten for 12 weeks for the blood test, and 2 weeks for the endoscope and biopsy. Some people do not show up on the blood test, and with the intestines having the surface area of a tennis court they can miss it with patchy damage. There is also the chance you could just be Non Celiac Gluten Sensitive. Read up on testing here.

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mcez Newbie
mcez
Posted
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6 hours ago, Ennis_TX said:

Did they do the full blood panel? Do you have copies of the test so someone here can help you interpret the results?(many doctors are not celiac savy). Did they do the endoscope and biopsy?

The test requires eating gluten for 12 weeks for the blood test, and 2 weeks for the endoscope and biopsy. Some people do not show up on the blood test, and with the intestines having the surface area of a tennis court they can miss it with patchy damage. There is also the chance you could just be Non Celiac Gluten Sensitive. Read up on testing here.

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They did a celiac panel, I’m not sure exactly what that entails. My doctor did not give me the actual results, she just told me that it was negative. I also did not have the endoscope and biopsy

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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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