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Faecal Calprotectin Test-Anyone Has Heard Of It?

Kate35

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Kate35 Apprentice
Kate35
Posted

Hello. I was diagnosed with celiac disease 6 years ago. I tested both of my kids at that time and they were negative, but one was positive for both genes DQ8 and DQ2 and another was only positive for DQ2. The child who tested positive for both genes does not seem to have problems with gluten. The other child has major GI issues. We eat mostly gluten-free at home , but I let them eat gluten at school occasionally. His pediatrician thought that his GI issues could be caused by IBD and ordered fecal calprotectin test which came back elevated (300). His symptoms are gas, bloating, green loose stool (once a day, not diahrea). His pediatrician said that since he is only positive for DQ8, his chance of developing celiac is very low and we should not worry about it. He dropped in the growth curve and Is Very skinny (5%percentile for weight). I took him to GI who is concerned with the positive calprotectin test and wants to do endoscopy and colonoscopy to check for IBD and/celiac. He wants him to go back on gluten diet though.

The problem-he immediately felt better on gluten-free/dairy free diet. Even his stool has gotten solid! He still occasionally gets GI discomfort, but it dramatically improved! I am trying to introduce dairy back, but I am reluctant to go back on gluten since he feels so much better and even gained a couple pounds. Anyone had experience with that? Anyone d do heard of calprotectin test? I told doctor No to testing, that I would like to keep him on gluten-free diet, but he yelled at me saying that it could be Crohn among other things and that I am restricting my child's diet without any reason! I asked him if there was any benefit in gluten and he says:@ if course! Whatever you read on the Internet is false!"

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ravenwoodglass Mentor
ravenwoodglass
Posted

In children it can be important to get a diagnosis so they can get the accomodations they need at school and college. Did they run a celiac panel on him before you took him gluten free? He could very well have celiac even with just the one gene. The fact that his symptoms have improved gluten free IMHO is signifiacant. How long has he been gluten free?

Adasmama Newbie
Adasmama
Posted

My daughter had the calprotectin test done prior to diagnosis. Fron what the Dr told me it only reveals the presence of inflammatio in the stool, but not the cause of inflammation. So, it could be caused by any number of GI issues. I would highly suspect celiac for your son but knowing for sure would be usefully for school etc. The dr had no right to tell at you.

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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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