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Child with possible celiac

Joy5

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Joy5 Newbie
Joy5
Posted

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!

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GFinDC Veteran
GFinDC
Posted

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.

*************************************************

Open Original Shared Link

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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Joy5 Newbie
Joy5
Posted
  • Author

Thank you for the information! I truly appreciate having a trusted resource as there is just so much to sift through online. 

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    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
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      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

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      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
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      Inconclusive results

      By Scott Adams · Posted

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    • JoJo0611
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      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

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