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5 replies to this topic

#1 kentsmom

 
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Posted 05 May 2004 - 11:09 AM

Greetings all!

My son is almost three, and has been diagnosed with a developmental delay. He doesn't talk much, and when he does, his speech is at an 18 month level. He has none of the sensory issues or repetitive motions associated with autism spectrum disorders.

Is it possible to have Celiac disease without the skin problems? Also he rarely has constipation or diarrhea.

He does, however, have painful gas and loss of tooth enamel; he's very pale and small for his age; he's an incredibly picky eater, and he's only grown an inch and a half and gained three pounds in the past year.

I'm going to ask the ped. about this at Kent's appointment in two weeks, but the responses to this query will determine how hard I push for a referral.

Is a biopsy really the only valid diagnostic tool?

Thanks,
Jen
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#2 Guest_jhmom_*

 
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Posted 05 May 2004 - 11:24 AM

Hi Jen, welcome, you have come to the right place for support and encourgement.

yes it is possible to have celiac disease without Skin problems. It is also possible to not have diarrhea or constipation, in fact some people have the disease and never have GI problems at all.

In my opinion a biopsy is not the end all be all however docs look at it as the "gold standard". The reason I say this is because I went through all the blood test, biopsies and they all came back negative. My doc NOW informs me that it takes TIME for a disease to show up in the blood or to damage the villi in the small intestines. A lot of docs will accept an improvement on a gluten-free diet as a dx too.

I was tested through Enterolab they test the stool which is more sensitive than blood and more accurate than blood. You also do not have to be on gluten. This is how my 8 year old daughter was tested too, I refused to put her through ALL the test that I went through.

Ihope your little one feels better soon! :D
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#3 mat4mel

 
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Posted 05 May 2004 - 02:04 PM

Yes, it is possible to have Celiac and have no Gi symptoms and no skin problems. I would definitely insist on blood tests. I personally do not think you "need" to have a biopsy to make a diagnosis. The procedure is not without risk, and false-negatives are really common. I would say have the blood work up and if any of that is positive, do the gluten free diet.

Mel
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#4 kaylee

 
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Posted 05 May 2004 - 04:46 PM

Hi Jen,

if your son is very small, pale, has tooth enamel loss and painful gas then looking into celiac disease is indeed a good idea as the others have suggested. Could I also add as a suggestion that you could put the time before the ped. visit to good use by keeping a food diary? Make notes on absolutely everything your son eats and also on anything that could be related - like mood (for example, irritability), physical things (the gas, but also trips to the toilet), tiredness, etc. Is his belly distended?

I found keeping this type of diary invcredibly useful when we first put our son on a gluten-free diet, but we were striking out sort of blindly, looking for answers without really knowing where we were going (it turned out to be a really good direction, though!). A diary might give you some extra info to give your pediatrician, too.

Best,
Kaylee
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#5 ashlee's_mom

 
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Posted 06 May 2004 - 05:53 AM

Hi Jen, I agree that you are looking in the right direction here! I think you have gotten some great advice, I would like to add that you might have to educate your ped about celiacs. My daughter was having extremely slow growth, but everyone assured me it could't be celiac disease. Unfortunately, she had to get extremely sick (the diarrhea did come eventually!) and lethargic before we were able to get her to the RIGHT specialist who could diagnose her. I later sent some information to our Ped who is ordering Danna Korn's book for the ped office now! Just be prepared to have to put up a fight, and don't let the Ped reassure you without doing tests! If it is celiac disease, it would be much better to find out now then to have him get really sick. Hang in there, you are doing the right thing!

Michelle
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#6 Guest_Evelyn's mom_*

 
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Posted 06 May 2004 - 07:11 PM

Jen,
You are definately doing the right thing by seeking information regarding Celiac. Take the time to study as much as you can. Some information seems conflicting but this site is really an excellant place to start.
My daughter's blood tests came back inconclusive but her symptoms were severe. I wish I had known about Enterolab at that time because I would have gone that route instead of putting her through the biopsy. It's a personal decision I think, but the biopsy procedure was very hard on all of us and I won't do it again with any future children I'd have that may have Celiac.
Hope this helps! Again, you're on the right track!
RaeAnn
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