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17 Month Son, Possible Celiac?

mamabickler

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mamabickler Newbie
mamabickler
Posted

Hi! I just found this forum. I know my questions will probably sound redundant, but I wanted to know if my sons signs point to celiac.

-poor weight gain after about 6 months

-patches of eczema (not bad)

-dermatographic skin

-night wakings with painful screams, tucking legs to chest

-foul smelling stools, sometimes with small round light colored foamy pieces???

-sometimes really shiny butt after pooping in his diaper

-dark eye circles

We had RAST done and he came back allergic to peanuts. Our dr. suggested we try a simple diet. We took out gluten, wheat, dairy, and all nuts. He improved dramatically and started sleeping through the night within the week. Within about 2 1/2 weeks, he'd gained 2 lbs. Our problem now is they want to test for celiac but he has to be eating it. We started him back about 5 days ago and suddenly he's waking up in the middle of the night again. The foul smelling poop has returned for 2 bowl movements.

My questions:

Do I continue with the gluten? If so, since he was only off for a month, how long before we can do the test? Our ped isn't being very helpful. I just keep hearing that the blood test for celiac often comes back neg for his age. I feel like I'm feeding him poison every time I give him the gluten containing food. I don't even know how much I should be giving him. I feel like I'm going crazy, but also don't want to explain to a teenager that I took him off gluten and wheat when he was little so he would sleep. I'm just a stressed out mama at this point. Thanks for reading! :)

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T.H. Community Regular
T.H.
Posted

My questions:

Do I continue with the gluten? If so, since he was only off for a month, how long before we can do the test? Our ped isn't being very helpful. I just keep hearing that the blood test for celiac often comes back neg for his age. I feel like I'm feeding him poison every time I give him the gluten containing food.

The blood tests DO often come back negative at this age, and they are finding that many people have gluten intolerance without having Celiac Disease, so the tests are always negative for that, anyway.

And I think your last statement says it all. What is going to happen if you put him back on gluten and you take the test and it's positive? You'll be putting him on the exact same diet you've already started, right?

So...what's are you going to gain if you actually have him tested? Will it change anything about how you treat him? If not, personally, my response would be 'no' to the testing. Possibly with curse words.

In part? Because for many celiacs, once they are off gluten, putting them back on gluten actually causes WORSE reactions than the original ones. The original ones seem very bad already with your itty bitty. I would not hazard worse ones.

A friend of mine had her daughter off of gluten, and she felt better, and the doctors wanted to test her and put her on gluten again. Her immune system was so affected that she had to be isolated, because the doctors were worried that if she caught anything at that point, it could literally kill her.

All to have her tested, when keeping her off of gluten would have told them what they needed to know: that staying off of gluten made her health improve. So she should stay off gluten. Period.

If your child needs to be tested at a later date, there are signs that some new tests may be coming out in the next few years that would not require this diet (saliva testing is one I've heard of, performed in some recent studies). You could have a genetic test. You can test yourself (it's recommended, as well as any siblings) and see if you have it, which would up the possibility.

But if your doctor is recommending putting your child on a diet with gluten, based on the previous reaction - he can't be aware of what he might be putting your child through. And if he is? IMO, shame on him.

Cara in Boston Enthusiast
Cara in Boston
Posted

Personally, I would stick with the gluten free diet and you can always try a challenge later when you son is old enough to really describe what he is feeling. (5-6 years old?) You don't have to wait until he is a teenager.

By then, you might have a new doctor who is more enlightened and open to giving you a diagnosis based on what is really going on.

You could do the gluten challenge now and STILL not get an accurate test result so it is just not worth it.

Cara

mamabickler Newbie
mamabickler
Posted
  • Author

thank you so much for your responses! i feel much better now about disagreeing with the dr and going ahead with what i feel best for my child. i think we are going to get him the genetic test and go from there. he's always been a happy child, but off gluten, he's happy, well rested and gaining weight!!! that should be enough for me :) thanks again for your help and good answers!

divamomma Enthusiast
divamomma
Posted

I would do the testing. It is tough for sure but having a clear diagnosis is at times very helpful. If the test came back negative then I would consider eliminating gluten anyhow.

mamabickler Newbie
mamabickler
Posted
  • Author

I would do the testing. It is tough for sure but having a clear diagnosis is at times very helpful. If the test came back negative then I would consider eliminating gluten anyhow.

if he's been off for a month and just had a little bit for 5 days, could we possibly get accurate results with blood?

mamabickler Newbie
mamabickler
Posted
  • Author

I would do the testing. It is tough for sure but having a clear diagnosis is at times very helpful. If the test came back negative then I would consider eliminating gluten anyhow.

if he's been off for a month and just had a little bit for 5 days, could we possibly get accurate results with blood?

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azagave Rookie
azagave
Posted

Personally- I don't believe in bowl biopsy. I won't put my kids through that as it opens up the doors to infections etc. Thats my opinion though. I used the following lab: Open Original Shared Link

I did the stool test and the gene test. I have gluten sensitivity and the genes for sensitivity and celiac. I went gluten-free and it saved my life. My 11yr old was suffering from excessive gas and bloat so I put him on the gluten-free diet and viola- all systems went away (including his temper tantrums etc). My 6yr old was not gaining weight or height- was the size of a 3yr old. I put him on gluten free and within 6 months he now looks like a 6yr old and his attitude and allergies improved greatly. If you son's in that much pain on gluten- try the lab above and take him off (in my opinion). Make sure you study the diet, understand the hidden sources in foods & meds and make sure he gets the necessary vitamins/minerals. Hope this helps! Also below I will list a blood test I may eventually do for my own kids. I am going to do the gene test because if they have the genes its a good idea to eliminate gluten to avoid developing sprue in the future.

http://www.(Company Name Removed - They Spammed This Forum and are Banned).com/

__________________________________________________________________________________

Hi! I just found this forum. I know my questions will probably sound redundant, but I wanted to know if my sons signs point to celiac.

-poor weight gain after about 6 months

-patches of eczema (not bad)

-dermatographic skin

-night wakings with painful screams, tucking legs to chest

-foul smelling stools, sometimes with small round light colored foamy pieces???

-sometimes really shiny butt after pooping in his diaper

-dark eye circles

We had RAST done and he came back allergic to peanuts. Our dr. suggested we try a simple diet. We took out gluten, wheat, dairy, and all nuts. He improved dramatically and started sleeping through the night within the week. Within about 2 1/2 weeks, he'd gained 2 lbs. Our problem now is they want to test for celiac but he has to be eating it. We started him back about 5 days ago and suddenly he's waking up in the middle of the night again. The foul smelling poop has returned for 2 bowl movements.

My questions:

Do I continue with the gluten? If so, since he was only off for a month, how long before we can do the test? Our ped isn't being very helpful. I just keep hearing that the blood test for celiac often comes back neg for his age. I feel like I'm feeding him poison every time I give him the gluten containing food. I don't even know how much I should be giving him. I feel like I'm going crazy, but also don't want to explain to a teenager that I took him off gluten and wheat when he was little so he would sleep. I'm just a stressed out mama at this point. Thanks for reading! :)

newmom07 Rookie
newmom07
Posted

I could have written your post 2 mos ago. We has DS blood tested after being gluten-free 1 week. Negative. I hemmed and hawed about restricting him to gluten-free without "proof" but after support from here, and a push from DH, we stayed gluten-free. We also ordered the enterolab, but the results aren't in yet. But here's what I know - he no longer has pink under his eye, foul loose stools and goes on hunger strikes. But all those instantly appeared when he was cross-contaminated. He also spent a day in pain and needing cuddles, but then he returned to his new normal self - happy, energetic! He gained nearly 3 lbs in 2 mos - more than 10% gain! To me, you know wheat is poison for him. When he is a teen he can make his own choice, but no way will we gluten-challenge until he wants to and is old enough to understand his symptoms and communicate clearly.

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