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Diagnosing A Sibling

Amie

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Amie Newbie
Amie
Posted

Sorry.. this will look like a repeat post. I tried to edit my last one to include another question and I deleted it.. :) Newbie!!!

My now 10yo son was diagnosed with Celiac at 4.5y. He has been Gluten free since. Before diagnosis, He was extremely symptomatic... he had fallen off the growth chart, had weight loss, diahrea, projectile vomitting, migraines, leg cramps, etc.etc.etc... He has been doing great since the changes.

I had my 4yo tested last summer because he was getting alot of stomach aches, and he seemed to have diahrhea alot. Also, issues with anxiety. I was surprised when it came back negative. The blood work was sent to Mayo clinic, and I know they are considered reliable for Celiac testing. Since then he has been to his 5yo check -up and he has not grown.. weight is the same, but he still has diarhea alternating with pasty stools and occasional headaches. His also seems to struggle with his behavior. At times he is ahead of his age in behavior and other times he will have a couple days where he seems to have a very hard time controlling his emotions. He can get sad easily and seems very anxious. I have since learned that Anxiety is a symptom of celiac, and I am curious if anyone else has had any experience with this related to Celiac and if so, did the issues get better on a gluten-free diet? Also, is there anything else connected to Celic given that we have it in the family that I should be looking into ? Any other food sensitivites, etc that maybe causing these issues?

His doctor agreed to have him tested again for Celiac, and we are awaiting the results. Given that we will be using just the local lab at our childrens hospital, I am wondering how reliable the results will be. (They do not send out to Mayo clinic) Is it imparitive that I retest him if it is negatvie and send them out to promethius(which I have since learned they can do? Can I trust the results if they are negative? Also- I have also recently learned that if you have a child with Celiac ond others show symptoms, you should retest them every couple of months? Has anyone else done this and found that they tested negative one month and then positive two months later? just curious.

Any advice on these issues from those who have btdt would be much appreciated!!

Thanks for listening!

:)

Amie

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Amie Newbie
Amie
Posted
  • Author

Sorry.. this will look like a repeat post. I tried to edit my last one to include another question and I deleted it.. Newbie!!!

My now 10yo son was diagnosed with Celiac at 4.5y. He has been Gluten free since. Before diagnosis, He was extremely symptomatic... he had fallen off the growth chart, had weight loss, diahrea, projectile vomitting, migraines, leg cramps, etc.etc.etc... He has been doing great since the changes.

I had my 4yo tested last summer because he was getting alot of stomach aches, and he seemed to have diahrhea alot. Also, issues with anxiety. I was surprised when it came back negative. The blood work was sent to Mayo clinic, and I know they are considered reliable for Celiac testing. Since then he has been to his 5yo check -up and he has not grown.. weight is the same, but he still has diarhea alternating with pasty stools and occasional headaches. His also seems to struggle with his behavior. At times he is ahead of his age in behavior and other times he will have a couple days where he seems to have a very hard time controlling his emotions. He can get sad easily and seems very anxious. I have since learned that Anxiety is a symptom of celiac, and I am curious if anyone else has had any experience with this related to Celiac and if so, did the issues get better on a gluten-free diet? Also, is there anything else connected to Celic given that we have it in the family that I should be looking into ? Any other food sensitivites, etc that maybe causing these issues?

His doctor agreed to have him tested again for Celiac, and we are awaiting the results. Given that we will be using just the local lab at our childrens hospital, I am wondering how reliable the results will be. (They do not send out to Mayo clinic) Is it imparitive that I retest him if it is negatvie and send them out to promethius(which I have since learned they can do? Can I trust the results if they are negative? Also- I have also recently learned that if you have a child with Celiac ond others show symptoms, you should retest them every couple of months? Has anyone else done this and found that they tested negative one month and then positive two months later? just curious.

Any advice on these issues from those who have btdt would be much appreciated!!

Thanks for listening!

Amie

Nancym Enthusiast
Nancym
Posted

Given the high probability that there exists a non-celiac gluten sensitivity, something many of us have figured out even if our doctor's haven't, why not just try the 2nd child on a gluten free diet and see if it relieves their symptoms?

I think there's a lot to be said for the entire family going gluten-free to support the family member with a gluten sensitivity. Less risk of cross-contamination, fewer meals to cook, plus you're not making the celiac feel like they're weird and out-of-place. And finally, you and your husband passed on the genes, it is possible that you could benefit from the diet as well.

Ursa Major Collaborator
Ursa Major
Posted

Oops, sorry about that.............Amie, you submitted this post twice, and to get rid of the duplicate, I merged the posts, not knowing it would then also duplicate your original in this post (the last time I tried this, it didn't do that, just put any responses in.......but there were no responses yet). I am still new as a moderator.

The problem with little children is often, that their bloodwork comes back negative initially, and turns positive several years later, after more damage has been done by the gluten. A biopsy of the small intestine could find damage, even when the bloodwork is negative.

I agree with Nancy, it is likely that your younger son either has celiac disease or is gluten intolerant. The way to find out is to have him eat gluten-free too, and to see what happens.

Tony'sMom Rookie
Tony'sMom
Posted

Hi Amie.

My son was diagnosed 3 years ago. At that time the whole family was tested and came back negative. We were all tested again this past December, again with negative results.

I just had my dd tested for the 3rd time Monday. She's starting to have some issues that I felt resembled Celiac- stomach pains, constipation, lack of growth, no appetite,etc. There are other symptoms that she has but they also could be related to her Cerebral Palsy.

I had asked about sibling testing not too long ago and the answers I got seemed to indicate testing every 3-5 years.

If you think he would benefit from the gluten-free diet than give it a try. It certainly won't hurt him :)

I hope you get your test results soon.

francelajoie Explorer
francelajoie
Posted

I don't know if anxiety is a symptom but I certainly have it :(

I bought some "nerve tonic" cause my heart was just beating so fast I couldn't sit for 2 seconds. I'm better now but I think that's where my celiac started. I'm a pack of nerves I tell ya. Thank goodness for red wine :D

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