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1 Year Gluten Free Check-Up; Gluten Challenge Or Not?

cdmom1

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cdmom1 Rookie
cdmom1
Posted

My son who is 9 went for his 1 year check-up with his gastro Dr. yesterday. Quick recap- we found out he had Celiac accidently through bloodwork. He is a silent Celiac. The only real symptom he shows is that he is small for his age. At 9 1/2 he is 49 pounds and 49 inches. After 3 months of being gluten free, he had bloodwork which all came back clean, which we were very happy about.

Now, a year later, he has only gained 1 pound but grew 2 inches. I have to say this is very upsetting. We were hoping to see some significant catch-up growth. The doctor seems okay with it because his BMI is fine. It is disapponting though, when I look at him and see Kindergarteners bigger than him and he is going into 4th grade! The doctor suggests giving him supplement drinks to help add pounds, but will this really make a difference?

The doctor also suggested we do a gluten challenge for 6-8 weeks. My big question here is, if he does it, will all the work we did over the past year be wasted?? Will he end up with the same damage as when he was first diagnosed?

The doctor said it isn't a big deal because the intestine heal so quickly. This has me so confused. I thought a small crumb does extensive damage, so how can eating gluten for 2 months be 'okay'? Should we not even bother with it?

I am sp confused as to how much gluten creates how much damage. I see people posting that they were cross-contaminated here and there, so does this mean they are never truly healing? With us, we are very careful to try and make sure my son is not cc'd because he would not even know if he was. Right now we can control what he eats. But, what happens when he is 13 and he wants to go get pizza with his friends? If he sneaks it, will that slice of pizza do years of damage, or will his body recover in a short time?

Sorry this turned into a rant- I just feel like there are no concrete answers, which makes this whole diet thing really hard to accept.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Two inches may not seem like a lot but at least you are getting some growth. Personally I would not do a gluten challenge with him. You had positive blood work and have seen some improvement on the diet and his blood work after being on the diet has been negative, which is good.

You may want to consider a referral to a ped endrocrinologist just to make sure he is not lacking a good level of growth hormone. If his hormone levels are good you may see a bit more of a growth spurt when he gets closer to puberty.

Some kids also grow in height before they put on weight. My DD for example was rather chubby for a long time but then all of a sudden grew but didn't gain weight during that time. If your son is feeling well and is strict with the diet when not at home you may find he does gain some weight eventually.

Jestgar Rising Star
Jestgar
Posted

The doctor also suggested we do a gluten challenge for 6-8 weeks.

Why would you even consider this? Why would any MD suggest you deliberately damage your child when you know it's an issue?

Maybe he should just re-test your son's blood to make sure he's been really gluten-free.

Poppi Enthusiast
Poppi
Posted

I wouldn't do a gluten challenge. I would request blood work to check for growth hormone levels and x-rays to ensure that the growth plates are developing properly.

Keep in mind that the tests can be wrong. We had the growth hormone and growth plate testing done when my oldest was 7 and was the size of a 4 year old. At that time we were told that his blood work and xrays were okay but we should only expect his adult height to be about 5'3".

He turns 16 next month and he's 5'9" and still growing. He was just a really, really late bloomer.

cdmom1 Rookie
cdmom1
Posted
  • Author

My son is actually going for a blood test to check to see if he is GH deficient. My daughter is being treated for it. He had seen the endo dr. a year ago, but she wanted to wait until he was a year gluten free before doing any further testing. Hoping that gives us a clearer answer.

melikamaui Explorer
melikamaui
Posted

My son who is 9 went for his 1 year check-up with his gastro Dr. yesterday. Quick recap- we found out he had Celiac accidently through bloodwork. He is a silent Celiac. The only real symptom he shows is that he is small for his age. At 9 1/2 he is 49 pounds and 49 inches. After 3 months of being gluten free, he had bloodwork which all came back clean, which we were very happy about.

Now, a year later, he has only gained 1 pound but grew 2 inches. I have to say this is very upsetting. We were hoping to see some significant catch-up growth. The doctor seems okay with it because his BMI is fine. It is disapponting though, when I look at him and see Kindergarteners bigger than him and he is going into 4th grade! The doctor suggests giving him supplement drinks to help add pounds, but will this really make a difference?

The doctor also suggested we do a gluten challenge for 6-8 weeks. My big question here is, if he does it, will all the work we did over the past year be wasted?? Will he end up with the same damage as when he was first diagnosed?

The doctor said it isn't a big deal because the intestine heal so quickly. This has me so confused. I thought a small crumb does extensive damage, so how can eating gluten for 2 months be 'okay'? Should we not even bother with it?

I am sp confused as to how much gluten creates how much damage. I see people posting that they were cross-contaminated here and there, so does this mean they are never truly healing? With us, we are very careful to try and make sure my son is not cc'd because he would not even know if he was. Right now we can control what he eats. But, what happens when he is 13 and he wants to go get pizza with his friends? If he sneaks it, will that slice of pizza do years of damage, or will his body recover in a short time?

Sorry this turned into a rant- I just feel like there are no concrete answers, which makes this whole diet thing really hard to accept.

It scares me that a doctor would even consider a gluten challenge on a diagnosed celiac. The fact that he thinks this is "okay" upsets me even further. If I were you, I'd start looking for a new doc.

kareng Grand Master
kareng
Posted

I agree that something is wrong with this docotor. Would he tell a diabetic to go off insulin for a few weeks just to make sure he is really a diabetic. If they go into a diabetic coma....

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