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Adopted & Have Cd
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4 posts in this topic

I was adopted as an infant & recently found out that I have celiac disease. I met my natural Mother last year but it didn't go well. Our short relationship ended quicked mainly b/c I wasn't the person she wanted me to be.

The main reason I wanted to contact her in the first place was to find out any medical background so I could find what was wrong with me. Her medical history was not much but including heart arrthemia (sp)?, IBS, indigestion, bloating, etc. She would often say that she doesn't eat much but can't lose any weight either.

Now I am thinking that I inherited celiac disease from her. She is now married & has 2 grown children. Should I write a note & let her know what I have in case she has it too?

Our daughter is also adopted. She comes from China. When we got her, she was very underweight, had lots Eczema, & had acid reflex upon eating. Now she is much healthier but still has the Eczema, craves sweets, never feels full after meals, & very small for her age. Her last physical in April, she weighed 42 1/2 pounds & her height was 43 3/4-inches. They did a bone scan & found her bone age to be 5.10 years. The doctor wasn't concerned at this moment because she is growing on a yearly basis.

She will not allow anyone to take blood from her b/c she is very afraid of needles for whatever reason. So what we can do is limited. Can her symptoms be related to celiac disease?

Thanks!

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You didn't mention how old your daughter is, but I figured older than 5.

It wouldn't hurt to get her tested. A needle-free way of testing for gluten intolerance is to go through Enterolab. You might even be able to get a doctor to order if, since you can't use needles on her. It might help when trying to get it covered by insurance.

They do a stool test for gluten antibodies and they also do a gene test (cheek swab). The complete test kit costs about $350 + @$20 shipping. You can find more info about the testing here:

A link to Enterolab's Website

It wouldn't hurt to drop a letter to your birth mother and let her know that you were diagnosed with this disease and based on her symptoms she might want to be tested. You could also include a printout from a reputable site regarding the disease. Then at least you did your part. The rest is up to her to decide if she wants to pursue testing for her and her family.

Good luck and God bless,

Mariann

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Oops -

My daughter will be 9 in March.

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Then yes, she is very small for her age and like I said it wouldn't hurt to have her tested. You already have to follow the diet, so it would be easier for her to follow it as well.

God bless,

Mariann

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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