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Orinda

Sibling Of A Celiac Kid -- Chances? With Symptoms?

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My 8-year-old daughter was diagnosed a year and a half ago via positive tTG-IgA (it was over 120) and a positive biopsy.

I have another daughter (born a week after her sister's biopsy) and she has confirmed milk protein allergy and possible egg allergy. I have not kept her gluten free (she gets crackers and cheerios as well as puffs).

She has had a couple of episodes of fissures and blood because of firm stool, so we introduced fruit juice and the blood problem is gone. However -- a week and a half ago, when the latest blood scare happened, she had a lot of mucus in her stool. The fissures healed but the mucus kept occurring. Small amounts, but it was there. Today she's had tons of mucus and extra pooping episodes.

My question is -- what are the chances that a full sibling will have celiac disease?

I've decided to give her another week just in case it's a virus. But if she's still having mucus in her stool I'm going to take her to the doc.

I don't want to make a permanent change to her diet in case it is a simple virus. But I figure 2 weeks is long enough to go with abnormal poop. I will probably let them do some blood testing but if it's positive I may waive the biopsy considering her family history.

Thanks!


Mother of a 7-year-old girl dx in December 2009

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How many other people in the family were tested when your daughter was diagnosed? If your doctor did not mention, all siblings and parents should have been tested at that point. With no symptoms, the chances are about 1 in 22 that you, your spouse, or your children will have celiac disease.

With symptoms, the chances are even greater. And with it in the family, the chances are very good that it will develop at some point in your lives, so retesting every few years is recommended after a negative result.

If the test is negative - which is not unusual for very small children, you may want to try the diet for a few weeks, at least if symptoms are persisting.

In my family, my father was diagnosed first, and we were never told that everyone else should be tested. I was diagnosed 8 years later, even though it looks as though I have been sick with this same disease for over 20 years (no gut issues but other problems). We tested everyone at that point, and my brother and daughter (also no gut issues) both came back positive for it.

My son had symptoms, but a negative test. We took him off of gluten too, partly because we made the whole house gluten free. His symptoms went away, and they came back when we did a gluten challenge 12 months later.

So I'd say that at least in my experience, testing, or at least a trial gluten-free diet for a few weeks, is a really valuable thing if it's in the family.

If you are curious what symptoms might be caused by the disease that aren't gut related, in case you are thinking of getting yourself tested, this site has a good list:

http://glutenfreeworks.com/gluten-disorders/celiac-disease/symptom-guide/


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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How many other people in the family were tested when your daughter was diagnosed? If your doctor did not mention, all siblings and parents should have been tested at that point. With no symptoms, the chances are about 1 in 22 that you, your spouse, or your children will have celiac disease.

With symptoms, the chances are even greater. And with it in the family, the chances are very good that it will develop at some point in your lives, so retesting every few years is recommended after a negative result.

If the test is negative - which is not unusual for very small children, you may want to try the diet for a few weeks, at least if symptoms are persisting.

In my family, my father was diagnosed first, and we were never told that everyone else should be tested. I was diagnosed 8 years later, even though it looks as though I have been sick with this same disease for over 20 years (no gut issues but other problems). We tested everyone at that point, and my brother and daughter (also no gut issues) both came back positive for it.

My son had symptoms, but a negative test. We took him off of gluten too, partly because we made the whole house gluten free. His symptoms went away, and they came back when we did a gluten challenge 12 months later.

So I'd say that at least in my experience, testing, or at least a trial gluten-free diet for a few weeks, is a really valuable thing if it's in the family.

If you are curious what symptoms might be caused by the disease that aren't gut related, in case you are thinking of getting yourself tested, this site has a good list:

http://glutenfreeworks.com/gluten-disorders/celiac-disease/symptom-guide/

Thank you for your reply! We were all tested when she was and all came back negative. Well, we were all tested except for the newborn baby that is. I've been tested twice, everyone else (two sons and husband) just once. Found out one son is IgA deficient in the process too.

I'm actually considering eliminating it entirely for awhile. We're about to go on vacation so it may be hard, but not hard once we get home. We'll see.

Thanks again!


Mother of a 7-year-old girl dx in December 2009

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