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Not Sure What To Think

Pink Lady

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Pink Lady Newbie
Pink Lady
Posted

Well to begin my child is 3 1/2 and might have celiac disease. I have thought for many years that something has be wrong with my child but never knew what. When he was an infant he was alway small and was always gasey and lactose intolerance. And I even asked the doctor do you think he is a celiac and the answer was no he is not I was ok then. So through out the years he has been growing at a very slow rate and they have done test after test until recently and doctor took a look at a recent celiac test that was done and said well one his results were high. So lets do a second one to make sure it a true result. So I get a call today for a doctor office for appointment at gastroenterologist. I asked does this mean my son has celiac disease? And of course they cant give me any answers other than sorry this is just a referral. It just says this is an abnormal celiac test results and a needs appointment..I was if someone here can help shed some light for me. I have been looking on the Internet for answers I know that sometimes to much information can be good and sometimes it can be bad but I'm just wanting something to hold on to..thanks for listening...

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Beth03456 Newbie
Beth03456
Posted

I think the likely answer is yes. I don't think the Celiac Panel gives many false positives. However, they generally do an endoscope as additional support of the blood test.

Our blood test (just the IGA TTG) was positive and the endoscope was iffy and they said that it therefore supported the blood test and that my son (also 3) had Celiac.

Go to the GI doctor. Don't start on the gluten free diet until they say to start.

Skylark Collaborator
Skylark
Posted

Hi there. It's hard to find antibodies in little kids so a positive test probably means he's celiac. The GI doctor will probably want to do an endoscopy to check for villous damage in the lining of his small intestine. As Beth said, don't take him off gluten until all the testing is done. If he's celiac all the antibodies and damage they look for will go away.

I know it's scary that he might be celiac, but in the scheme of things a lot of us figure we'd take a disease that can be treated with diet over a lot of other health problems. Once he's off gluten, he'll probably start growing well. :)

Pink Lady Newbie
Pink Lady
Posted
  • Author

Thanks everybody for responding to my post it does make me feel better. I wasn't sure of the test results. I'm a little nervous about the up coming doctors visit but I know good will come from it. I'm glad that I have joined this forum so I will have support and have wonderful resources on what to do and where to go for help when I don't know where to turn...thanks again...amber.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Hi, it sounds like he may have it. Keep him on gluten until you meet with the GI and all testing is done. BTW, if you are in the US, you have a legal right to get copy of the test results. Get the results and read them for yourself. Few doctors are very educated about celiac, so that may be why they hemmed and hawed and wouldn't give you a straight answer. You may have to educate the doctors even if you have a positive test result for your son. Some doctors still think that kids outgrow celiac disease, which is not true at all.

Grace'smom Explorer
Grace'smom
Posted
  On 8/9/2010 at 10:08 PM, Pink Lady said:

Well to begin my child is 3 1/2 and might have celiac disease. I have thought for many years that something has be wrong with my child but never knew what. When he was an infant he was alway small and was always gasey and lactose intolerance. And I even asked the doctor do you think he is a celiac and the answer was no he is not I was ok then. So through out the years he has been growing at a very slow rate and they have done test after test until recently and doctor took a look at a recent celiac test that was done and said well one his results were high. So lets do a second one to make sure it a true result. So I get a call today for a doctor office for appointment at gastroenterologist. I asked does this mean my son has celiac disease? And of course they cant give me any answers other than sorry this is just a referral. It just says this is an abnormal celiac test results and a needs appointment..I was if someone here can help shed some light for me. I have been looking on the Internet for answers I know that sometimes to much information can be good and sometimes it can be bad but I'm just wanting something to hold on to..thanks for listening...

Hi Pink Lady

I learned that my 6 yr old has celiac just 2 mos. ago. I wish I knew the statistics back then, after her bloodwork returned positive. (She had no symptoms, long story, the blood test was accidentally ordered). I found out AFTER the biopsy that with positive antibody blood tests, only 3% of the endoscopy biopsies are negative for celiac. So in other words, your child has a 97% chance of having celiac becz. of her positive blood screenings. In fact, just minutes after the biopsy, the dr who did the surgery told me she "looked great" and that he would be surprised if she had celiac, or that if she did, it was very early. Well, you could have knocked me over when my daughter's GI called to say that the results were positive, so positive that it "wasn't even close. She has full blown celiac" was what I was told. So prepare yourself that this GI will most certainly order the endoscopy - and if he doesn't - find another GI who will! It would also be helpful to do some gluten free homework so you will know what to buy and a little more about the diet before she has to go gluten free. They'll want you to keep her on gluten through the biopsy so that they have an accurate result. Get the book "Raising your Celiac Child" by Dana Korn; it was a great resource for me. Most libraries carry it. Best of luck....Emily

Pink Lady Newbie
Pink Lady
Posted
  • Author

Thank you Emily Yeah I'm on pin and needles right now waiting on the doctors appointment. They told me that the appointment is just going to be a consult. So I'm not sure what they are going to tell me. I know there is life after celiac but its going to be a big lifestyle change. I will have look for that book bc I will need all the resources to help me and my husband throughout this. I'm so happy I have found this forum everyone who has responded has helped me thus far. Thanks Again everyone and I will Update when I go to the doctors appointment next Wednesday..amber

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mommida Enthusiast
mommida
Posted

Hi Amber,

Just want to let you know, we are sending our thoughts and prayers with you!

Danna Korn's book is an excellent resource. The tip on having all the better than gluten treat bag available at all times is a lifesaver for newbies!

Speaking of Lifesavers, the peppermint ones are all top 8 allergen and gluten free.

sarahbella636 Newbie
sarahbella636
Posted

Hi there-

I'm in a similar situation as you right now. My 19 month old son has a positive celiac panel and we are waiting for our first appointment with the GI doctor (next month), which will also be a consultation. Our pediatrician initially ordered the Celiac panel since his weight gain has slowed down and he's a little anemic. I am assuming that he will have it, due to the positive blood test, but I am afraid my three-year-old will have it too since she demonstrated the same growth pattern and anemia when she was her little brother's age, in addition to a few food allergies. If my son does have it, everyone else in our family will be tested. Skylark's words are a comfort- that to manage this disease all we will have to do is change a diet, I keep reminding myself it could be a lot worse.

I wish you well at your appointment with the GI doctor!

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