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Suggesting Celiac Testing For Others?

taweavmo3

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taweavmo3 Enthusiast
taweavmo3
Posted

I'm not sure where to post this, so I'll post it here, lol.

I am struggling with a situation, and I'm curious how you all would handle it. I work in a children's hospital, and in the past have come across patients of mine who I think would really benefit from at least being tested for Celiac. I had one today that really troubled me, b/c this young girl's entire life was on hold b/c of debilitating symptoms. And she wasn't getting any answers at all.....even the GI docs basically said they didn't know what was wrong with her. SO, I couldn't leave without telling her mother about Celiac. I tried explaining it, but it's difficult explaining Celiac in a brief five minute encounter. Anyway, the mother mentioned it to the doctor, who said that testing for Celiac would have been included in the IBD antibody test. I didn't know enough about testing for IBD to say much more, I just mentioned that doing some research about Celiac might help her find some answers.

My first priority are my patients of course, but I was a little worried the doc would come questioning me about telling HIS patient what they needed to test for! I think you all know how some doctors can be, lol. I would like to keep my job, but it is so hard to just watch some kids suffer w/out at least mentioning Celiac.

How do you all handle approaching other people (especially parents of sick children) about being tested for Celiac? I'm finding it to be a little tricky, b/c some might get offended. But at the same time, I always wished someone had mentioned it to me so I didn't have to go searching for answers on the internet. Anyone have any thoughts on this?

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kevsmom Contributor
kevsmom
Posted

Maybe you could find some information in an easy to read format and print it out for them to read in their spare time. One thing I found quickly was:

Open Original Shared Link

Also something listing which blood tests are in the Celiac blood panal (for those doctors who are clueless).

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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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