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mygfworld

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mygfworld Apprentice
mygfworld
Posted

I have a 4 yr old who is currently on the gluten-free/CF diet. She has been on the diet for almost 2yrs now. We have experience and know the gluten-free/CF routine well, so I am not very worried about contamination problems.

She started out in about the 75% for height and weight. After serious decline in health she was finally tested for Celiacs a little after she turned 2yr old. The results were negative. The Dr noted that she had severe irriation in her stomach or esphogus. (can't remember which). The Dr had nothing else to test her for or recommend for her. So we made her gluten-free. She immediatley showed signs of improvement. Started to grow, had formed poop, wasn't starving anymore...the list goes on and on.

The problem is she is almost 4 yrs old and still very small for her age. She's at the 20th% now. She eats very well. She knows not to share and asks if her food is gluten-free and safe for her. Every now and again she gets a bad rash on her legs. Recently she has started vomiting and having massive diahrea which lasts for over a week. Then the stomach pain lingers for weeks and is still going. The pediatrician sent us to a gastro, who since we were new, was far more concerned in verifying that she does in fact have celiacs than finding out what is wrong. (new blood test for celiacs was negative - but she is currently gluten-free/CF so wouldn't it be negative?)

The issues:

1. How long does it usually take a young child to catch up to the age average for size after going gluten-free?

2. Are there any other diseases or things that I should have her tested for? Is the vomitting and diahrea a new disease or food issue? (She tested negative for food allergies last year.)

3. I'm concerned that her blood work was negative years ago and is still negative now for celiacs. She had one gene for Celiacs. She responded well to the gluten-free diet and is still on it. I have no intention of taking her off the diet.

Sorry this is so long, but any advice or input would be really helpful.

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swalker Newbie
swalker
Posted

I really enjoyed "Is this Your Child" by Doris Rapp. It answered alot of questions we had about food sensitivities. Symptoms can be anything from rashes, red cheeks and ears to behaviour difficulties, reading problems and just plain zoning out.

90 percent of sensitive people are bothered by the same things: gluten, dairy, eggs, corn, soy, peanuts and other legumes, treenuts and nightshades

I don't trust any of the tests available personally. We had an iGA test done on my grandson, he didn't react to gluten and it gives him seizures. I don't think they know enough about how inflammation in our bodies works yet to be accurate in testing for it.

The best way to locate a problem food is watch for reactions after they eat and if you are wondering about a particular food then remove it for four days then give it to her and watch what happens.

If nothing turns up fairly quickly, then I'd suggest keeping a food and behaviour diary because reactions can sometimes take a day or even two.

B'sgirl Explorer
B'sgirl
Posted

1. How long does it usually take a young child to catch up to the age average for size after going gluten-free?

If growth was stunted they may never actually catch up. It is better to compare their personal growth than compare to other children.

3. I'm concerned that her blood work was negative years ago and is still negative now for celiacs. She had one gene for Celiacs. She responded well to the gluten-free diet and is still on it. I have no intention of taking her off the diet.

blood work will show up negative if there is no gluten in the diet. I don't trust the results because my son's blood work was negative but I put him on a gluten-free diet anyway and he improved a great deal. I KNOW he reacts to it so it doesn't really matter what the tests say (although his pediatrician doesn't seem to agree).

You might want to try removing other foods from her diet to see if that makes a difference with the rashes and growth. I removed milk and gluten from my son's diet and saw lots of improvement. But there were still periodic rashes and diarrhea until we pinpointed soy as another problem for him. Once we removed soy from his diet he didn't have anymore problems.

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