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Eagerly Waiting For Biposy - Is Celiac Symptoms Dose Dependent?

Arginin

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Arginin Rookie
Arginin
Posted

I am new here. My son (4 years) is waiting to get a biopsy, and the wait is almost killing me as he is several times a day complaining about stomach ache and he is also being very aggressive in kindergarten when his stomach is bad. Today another mom asked me if I could talk to my son and get him to stop hurting her daughter. It is just devastating and extremely frustrating to see him like this. I am almost longing for a celiac disease diagnosis, which hopefully will take away both his physical and mental issues.

Some background: He has had trouble with his stomach for as long as I remember, but never tested positive for antibodies through blood samples (neither for any allergies), however he is DQ2 positive. He got diagnosed with gastroesofageal reflux when he was 18 months (through 24 h acid measurement), and obstructive sleep disorder when he was about 2 years (he got his tonsils and polyps removed). He ate 10 slices of bread a day when he was about a year, and just lost wait, moving to the lowest percentile. Gradually he started eating less bread and his weight curve has normalized. He has a lot of stomach ache (which he managed to communicate when he turned three), and loose and pale stool. He was particularly complaining about stomach ache when he had eaten cake, waffles, chocolate, grapes, and raisins. Two months ago we finally got to a gastro-doctor who really started to take his problems seriously. He was diagnosed with fructose malabsorption through a hydrogen breading test. It was heaven. Finally something we could do. We started him on a fructose free diet, and it really changed him, particularly his behaviour. He was calmer, not as agree and aggressive. But still he complained almost daily about his stomach. His doctor suspected there was more to the story, either milk allergy or celiac disease. First we started a milk free diet, on top of the fructose free. After a week the nightmare began. His stomach pain increased, and his temper was worse then ever. My immediate suspicion was that his diet now was mostly grain. When he started the fructose free diet he filled the void of fruit etc being removed from his diet with milk, he drank large amounts of milk. When we removed that as well, he started eating large amounts of bread. Therefore, we are now waiting for the biopsy.

I have also noticed some other signs that when I have searched for them here in this forum, seems to be celiac associated. He is constantly having something in his mouth to bite on, he says his teeth hurt. He also complains about joint pain. These things get worse when his stomach is bad. Also he starts wet his pants again.

I don

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Bubba's Mom Enthusiast
Bubba's Mom
Posted

So many symptoms your son has could be gluten related.

You have to keep him on gluten until the tests are done. With that said, no matter what the test results are, have him go completely gluten-free. Some people test negative for Celiac, but have it. OR he could be gluten intolerant? Very hard to test for that other than eliminating it for a while then reintroducing it to see the effect.

There is a lot written about the effects of gluten in the body. It can change people's personalities. Drs don't seem to catch those symptoms very well.

Good luck to you both..I hope you get the answers you need.

Arginin Rookie
Arginin
Posted
  • Author

Thanks for the support!

The Horticulturalist Apprentice
The Horticulturalist
Posted

Thanks for the support!

When is his biopsy date? So sorry that you have to endure this with him, poor little guy :(

You've made it this far and well done for helping him with the dietary changes so far. What do his celiac blood test show, are they positive? I understand in the under fives they often don't show up.

Keep us informed of your progress with him, it's a tough time for him and your whole family.

Arginin Rookie
Arginin
Posted
  • Author

I called and asked if we could come in soon for the biopsy, and we will get it already Wednesday, which is a relief. It is terrible to see my child like this. His antibody blood test was negative, both genetically he is predisposed (DQ2). As soon as the biopsy is taken, we will switch to a gluten free diet, and hopefully things will get better for him soon, although a read elsewhere here that it can take long (up to six months!!) - right now that sounds unbearable. But we will take one step at the time, and right now just focus on getting the biopsy done. Thanks again :) Great to be here and hear from others!

The Horticulturalist Apprentice
The Horticulturalist
Posted

I called and asked if we could come in soon for the biopsy, and we will get it already Wednesday, which is a relief. It is terrible to see my child like this. His antibody blood test was negative, both genetically he is predisposed (DQ2). As soon as the biopsy is taken, we will switch to a gluten free diet, and hopefully things will get better for him soon, although a read elsewhere here that it can take long (up to six months!!) - right now that sounds unbearable. But we will take one step at the time, and right now just focus on getting the biopsy done. Thanks again :) Great to be here and hear from others!

Great news that it is only a few days to the endoscopy. I hope that the GI will talk to you after the scope and tell you what he thinks, if he/she does and he give you any details do let us know what he/she said. Hopefully you will have the pathology soon afterwards.

Please do let us know how your little one does on the diet!

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