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Diagnosis

a-adamson

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a-adamson Newbie
a-adamson
Posted

Just after my son turned 1 year old he started having really bad diarrhea. The doctor told us for about 6 weeks that that it was a virus and we just had to wait for him to get over it. I felt that wasn't right but we waited some more, trusting our doctor. Then he stayed with my in-laws for a weekend and my mother-in-law said she thought it was a gluten allergy. So rather than listen to the doctor we went to the store and bought gluten free food. He got better within a week. So we are 90% sure that he has celiac disease.

We have had some issues with diarrhea but not nearly as bad as before (I think it is because I am not experienced at reading labels yet so there was some hidden gluten). We went to our doctor again and he still said it was just another virus but did write a referral for an allergist.

Today we had our visit to the allergist. They did a scratch test and he was not allergic to wheat, milk, egg, rye, oat, or soy. The allergist does think that he has celiac disease due to the family history (mother-in-law) and the symptoms. However, he said our son was too young to do the blood test but he would do it in six months. He said to keep the gluten free diet. But then he said the blood test will most likely show negative since he will not have gluten in his system. I don't understand why we would do a blood test on an 18 month old if you already know it will be negative. Has anyone experienced a diagnosis for a child this young?

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Dixiebell Contributor
Dixiebell
Posted

Sorry to hear your little one is having tummy troubles. Celiac is not an allergy so the allergy tests would not find it. If you want blood test or endoscopy keep him on gluten. I think some children that young have been positive on the blood test. If you think you have found your answer to his problems and don't need an official diagnosis then keep him gluten free. A good thing is that being gluten free will not mask other medical problems.

sarahbella636 Newbie
sarahbella636
Posted

Hi there- my 19 month old tested positive to the celiac panel when he was 18 months. The doctor ordered it due to his slow weight gain and mild anemia. We have a follow up appointment with the pediatric GI doctor next month. We will see if he will have further bloodwork done then or a biopsy. From what I've heard on here, his results from the bloodwork definitely look like Celiac.

Good luck to you and I hope you are able to find some answers :)

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    • MI-Hoosier
      Test uncertainty

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    • MI-Hoosier
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    • trents
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      By trents · Posted

      Welcome to the forum, @MI-Hoosier! You are operating on a misconception about your "mixed" test results. You only had two celiac disease diagnostic tests run out of six that could have been ordered if your doctor had opted for a complete celiac panel. It is perfectly normal to not test positive for all possible celiac disease diagnostic tests. That is why there is more than one test option. It is the same way with other diagnostic testing procedures for many or most other diseases. Generally, when diagnosing a condition, a number of different tests are run and a diagnosis is arrived at by looking at the total body of evidence. The tTG-IGA test is the centerpiece of celiac disease blood antibody testing and the one most commonly ordered by doctors. You were strongly positive for that test. It was not an unequivocal result, IMO.  Having said that, it is standard procedure to confirm a positive celiac disease blood antibody test result with an endoscopy/biopsy which is still considered the gold standard of celiac disease diagnosis. Had your tTG-IGA been 150 or greater, your doctor many have opted out of the endoscopy/biopsy. The absence of GI distress in the celiac disease population is very common. We call them "silent celiacs". That can change as damage to the lining of the small bowel worsens. Elevated liver enzymes/liver stress is very common in the celiac population. About 18% of celiacs experience it. I was one of them. Persistently elevated liver enzymes over a period of years in the absence of other typical causes such as hepatitis and alcohol abuse was what eventually led to my celiac disease diagnosis. But it took thirteen years to get that figured out. Within three months of going gluten free my liver enzymes were back into normal range. Thank goodness, there is more awareness these days about the many long fingers of celiac disease that are not found in the classic category of GI distress. Today, there have been over 200 symptoms/medical conditions identified as connected to celiac disease. It is critical that you not begin a gluten free diet until your endoscopy/biopsy of the small bowel is over. Doing so before that procedure will invalidate it because it will allow healing of the small bowel lining to begin. Here is a link to an article covering celiac disease blood antibody testing:  
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