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cyberprof

Surprise, Surprise, Surprise...not Really!

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I have suspected that my son (almost 15) was not healthy for about 3 years now. Mother's intuition, I suppose, but he just had too many infections, colds etc. And he fell off the growth chart- had previously been 75th percentile for height and weight and dropped to below 25th. At my request, the pediatrician tested him for diabetes, kidney problems, leukemia etc., all of which (thankfully) were negative. But his growth slowed and even though he eats healthy food he hasn't gained weight in a few years and is much shorter than his classmates.

Fast forward to my diagnosis a year ago and suddenly I knew that I was right -- there was something wrong. But, like me, his blood work was negative and his dad (my husband) didn't want to take the risk of an endoscopy, especially given the sometimes unreliable results (e.g. 1 in a million risk of death is really bad odds if you are the unlucky one). If the test were required to save his life, obviously, it would be a different decision.

However, DS is a smart kid and didn't want to follow the diet if he wasn't sure it was necessary. Can't say I fault him for that logic. He wanted the gene test and some indication that he was showing a reaction to gluten.

I'm uncomfortable with Enterolabs because Dr. Fine hasn't published. But given my choices - keep DS on gluten and let the gluten hurt him or force him to go gluten-free against his will -- I chose Enterolab. I mainly chose it for the gene test because I KNEW the rest would be positive and it was. Antigliadin IgA, Antitissue Transglutaminase IgA, fecal fat and casein were all way high. And, he has both gluten sensitive and celiac genes. So he can blame his dad for one of the genes and for the casein, which runs in dad's family.

He isn't too sad and had tried gluten-free for a month, so he's ready. He gets one last Pagliacci pizza this week -- although he does love my homemade pizza recipe from the Gluten-Free Girl's book. Then he goes gluten-free. I am worried about college -- dorm food is problematic as is beer and pizza parties. But we'll cross that bridge when we get there.

So, now all he has to do is grow, grow, grow. And maybe he'll stop getting sick with every virus that goes around.

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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This sounds so much like what happened with my youngest daughter! I had her tested last fall by Enterolab just before she turned 16. Two years ago her blood tests were negative (one a high negative, though) and she refused to try the gluten-free diet as a result.

As with your son, she was getting more unhealthy all the time. Not dreadfully sick, just never well. Fortunately, she grew and grew without ever stopping when younger (4 inches a year from the time she was two, until she stopped growing when she was twelve). When she was 12 years old, she was five feet and eight and a half inches tall, towering over everybody in her class.

When she started getting unwell, she stopped growing, no problem there at least with the growth. She sure is tall enough.

I am sure my son is gluten intolerant, too. But he is in denial. He didn't grow as a teenager at first, and at 15 looked like a little twelve year old boy, and even still had a soprano voice! But then, when he was 16, he just grew and grew and by the time he was 17 he was six feet tall. You could almost watch him growing! :huh:

So, I bet your son will catch up, especially now that he will be gluten-free. I know how it feels when you have finally figured out what is wrong, have proven it, and your kid will cooperate. That must be a load off your shoulders.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

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