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My 1 Year Old Just Diagnosed


bchapa

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bchapa Newbie

Hello all, my 1 year old was diagnosed about a month ago and my wife and I were in complete shock. After the endoscopy came back clear, our doctor mentioned the possibility of celiac when the biopsy was studied.


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kbtoyssni Contributor

It can cause pain but not always which makes it tricky with a child that young. A lot of people get stomach pain/cramps, but not everyone. Most parents will notice a difference in bowel movements and/or behavior. You'll probably have to go by the symptoms he had that lead you to seek a diagnosis.

cornflakegirl-1980 Newbie
Hello all, my 1 year old was diagnosed about a month ago and my wife and I were in complete shock. After the endoscopy came back clear, our doctor mentioned the possibility of celiac when the biopsy was studied.
happygirl Collaborator

Just because no one in your family was diagnosed, doesn't mean that no one in your family has it. 1 in 133 Americans have Celiac and yet 97% of them are undiagnosed. Celiac symptoms range from debilitating to no overt symptoms (called silent Celiac). All first degree relatives of a dx'ed Celiac are recommended to have the full Celiac panel run. It "runs" in families because there is a genetic link to Celiac. The two main Celiac genes are HLA DQ2 and HLA DQ8, which about 30% of the American population has (one or both). Just having the gene alone does NOT mean that you have Celiac. About 98% of diagnosed Celiacs have one or both of these genes.

The statistics for a family member having it are:

Group Prevalence (from a 2003 study by Dr. Alessio Fasano)

First degree relatives 1 in 22

Second-degree relatives 1 in 39

Symptomatic patients 1 in 56

Not-at-risk individuals (overall prevalence) 1 in 133

Check out the book listed in my signature...it is the best resource out there.

ssjrobbins Newbie

Hi!

I just came across your post. I would recommend you go to the Parents of Children and Babies Message Board here on Celiac.com, it is great to talk with other parents about your concerns, questions, etc. My husband and I have two small children and they have both been diagnosed with celiac disease through biopsy. Our oldest is now 4.5 and she was diagnosed about a month before she turned 3. Our youngest is 20 months and he was just diagnosed about 4 weeks ago. It was so much easier with our daughter, even though she was barely 3, she could talk and tell us how she was feeling. Her tummy certainly hurts when she gets even a spec of gluten but more importantly is her behavior. This is very common in children with celiac disease. Their behavior is terrible when they are "glutened". I would really recommend you go to the Parents of the Children and Babies part of this Message Board, I think you will find it most helpful!

Good luck to you and please know....it will get easier!!!

:)

NoGluGirl Contributor
Hello all, my 1 year old was diagnosed about a month ago and my wife and I were in complete shock. After the endoscopy came back clear, our doctor mentioned the possibility of celiac when the biopsy was studied.

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    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
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