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Joy5

Child with possible celiac

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Hi, I am new here but have read many, many threads. I am totally lost in a gluten intolerance mess and need answers. My son is 8 years old and has had GI and extra-intestinal symptoms for a few years (some dating back to infancy). None of my concerns were addressed by his doctor until he went a full year without putting a single ounce of weight on despite eating us out of house and home. She first thought fructose, so we took him off fructose, including wheat as per the dietician's recommendation. When that only addressed part of the problem, his doc then ran a celiac test. Little did I know at the time that him being off wheat prior to testing could skew the results.

Okay, well the GI doc decided it didn't matter because she thought it was a delayed dairy intolerance. So, we took him off dairy and fructose, and he got much, much better! Whew. But then GI doc says wheat problems are rare so put him back on wheat. Three days later the school calls and asks me what in the world has happened to my son he is a grumpy gus with worsening handwriting by the minute. Back off wheat we go, me still focused on fructose. In three months he gains 6 pounds.

I'm still not thinking gluten, so not watching for cross-contamination or hidden gluten. He's better but having continued nasal/skin issues so get referred to an allergist. No allergies whatsoever, and so I mention my questions about wheat to him. He asks me 4 times if he was tested for celiac and if it came back negative. I kept telling him it did but he hadn't been on wheat prior to, so he said maybe a gluten challenge and another celiac test is in order, or maybe he has NCGS.

Soooo, we put him back on gluten. The pediatrician wants me to follow up with GI who won't help me anymore unless we do a scope. There is family history of sedation problems, so I don't want to do the scope. Pediatrician runs genetic test and he is positive for DQ8, so follow up tests every 3 to 5 years. She also ran another celiac blood test but he had only been on gluten for 2 weeks. She now wants us to test at 6 weeks. In the meantime, my son feels bad, isn't growing again, and I keep reading mixed information about how long he should be on gluten, how accurate the blood tests are, and so on. My grandmother had intestinal carcinoma and was 90 lbs her whole life, my mother has GI distress all the time, and I am getting tested next week. I just wonder if/when I will ever get an answer through my son's bloodwork.

 

So, after that long frustrated rant, I am open to any suggestions. What is my next step? Thank you!

Edited by Joy5

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I can understand why you are frustrated.  The child should not have been taken off gluten before the all testing was completed.  The University of Chicago celiac center is a great resource for information on celiac disease.  The usual testing process is blood antibody testing followed by an endoscopy to take biopsy sample from the small intestine.  They use a microscope to check the biopsy samples for celiac type damage to the villi that line the small intestine.

Gut damage can lead to malabsorption of nutrients, resulting in small stature, slow growth and dental problems in children etc.  I suggest you do a search for a celiac support group in your area.  They may be able to recommend a good doctor for celiac testing.

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http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/

What is a gluten challenge?

A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

  • Prior to blood testing we recommend 12 weeks of eating gluten.
  • Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten.

In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013

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