Do You Think My Asian-Adoptive Child Could Have Celiac?

[VitaminDGirl]

Hi, all. I know this is not he pre-diagnosis area, but I"m not sure how many of you visit there and I am looking for some feedback from those who have 'been there.'

My daughter is 7. For the past few years at least she has has what seems to be chronic constipation. She sits on the toilet A LOT. She tested negative on the top allergy blood tests. Dr. just said she needs more fiber and water. Husband says she just needs to drink more water.

But as her mom, I'm thinking, my other kids all eat the same diet and don't drink insanely more water. So, why aren't they constantly on the toilet?

She also has ezcema.

I am happy to just take her off gluten, but I"m wondering if it would be more helpful to do some real testing to see if she is true celiac. I mean, she might be glad later that I did? And I would know how anal I need to be with what touches her body, right?

Anyways, any support you can give--like, if your kids had similar chronic tummy issues as their main symptoms.

She seems otherwise healthy and smart and grows at a good rate. Her weight and height are normal, as are her growth patterns.

Many thanks.

A concerned Mama,

VitD Girl

[missy'smom]

I'm not really up on the genetics but I was suprized when we got the results back from stool testing and found that my son, had two sets of gluten intolerance genes. Not the main celiac disease ones but I wasn't expecting it because my husband is Japanese and I am caucasian. I expected one not two sets-celiac disease clearly runs in my side of the family. Anyway, after being on this forum several years I have seen that there have been a few official celiac disease DX cases reported in Japan. And "wheat allergies" seem to be on the rise or there is more awareness as seen by an increase in wheat-free products there in the past couple of years.

My son doesn't have an official DX of celiac disease but he does have eczema that goes away when he is gluten-free. We have also identified another possible allergen that seems to trigger it, unless there was hidden gluten or CC in the forms that we trialed. Allergy test initially was positive, both blood and skin for wheat. Now, after a year gluten-free,latest skin test for wheat was neg. There is a celiac disease doc. from Australia, Rodney something, who has written quite a bit about gluten, kids and eczema if I remember right.

As for the constipation, I have that problem. Had some D, but mostly C. Now, I have also realized that a multitude of other minor food allergies trigger mild inflamation in the bowels that cause me C also. If I avoid gluten and all the other allergens then things work beautifully.

I recommend that you find an allergist who routinely does large panels of food allergy tests. One who believes in dietary elimination, not only for those with anaphalactic reaction. I was able to discover kiddos and esp. my other problematic foods by getting tested and following the allergist's protocol for eliminating all those foods, then reintroducing them one at a time, one per week, and seeing how we reacted. For the testing we were given a list of about 100 and asked to mark the ones that we routinely ate. We have a varied diet so marked about 80 each and those are the ones we were tested for. There was a standard panel of about 25 that everyone was automatically tested for. Out of 80 some I reacted to 26 and it seems that I really do have problems with most. Not major, but I now notice a difference and esp. more of a problem if I ingest them more often or more than one at a time.

Hope that helps.

So, it may be worth it to check into the celiac disease DX. Make sure to keep her on gluten until you're done. But also, it might be good to find a new allergist with a differnt perspective.

[Yup]

There is genetic testing out there. I just found a site called 23 and me. They can tell your heritage and disease profile. They claim that they can see if Celiac genes are present. The normal test is 500$, but sometimes they have sales (a friend of mine told me).

[GlutenFreeManna]

Why not just ask for the Celiac panel blood test? Or if you think the doctor won't do a celiac test you can take her to the dermatologist and have her tested for DH. If her "eczema" is really DH then she has celiac.

[cassP]

  On 8/13/2010 at 8:45 PM, VitaminDGirl said:

I am happy to just take her off gluten, but I"m wondering if it would be more helpful to do some real testing to see if she is true celiac. I mean, she might be glad later that I did? And I would know how anal I need to be with what touches her body, right?

as long as your daughter is not too uncomfortable or sick- i would try asap to get a complete Celiac blood panel- BEFORE u take her off the gluten.

[StephanieL]

They could both be connected with food allergies too. Food allergy testing IS NOT 100%. The blood tests can be incorrect. The skin tests can be incorrect. They are a place to start though. Trials of suspected foods are the best way to figure it all out.

I would also suggest a Celiacs blood test and a SERIOUS food log. Log EVERYTHING! You may see a pattern develops.

Good luck!

[VitaminDGirl]

Thanks for this advice, all.

I have a dermatologist appointment for her already set. I plan to have her go to a gastro ped. dr. as well.

Hopefully we can find out if she has this or not.

Thanks again for taking the time.

I was very interested to hear about celiac in Japan.

We lived there for a few years.

My daughter is actually from Central Asia though.

I"ll let you all know how it goes.

Thanks again.

I think we're on the right path to pursue this.

[ravenwoodglass]

  On 8/14/2010 at 4:19 AM, VitaminDGirl said:

Thanks for this advice, all.

I have a dermatologist appointment for her already set. I plan to have her go to a gastro ped. dr. as well.

Hopefully we can find out if she has this or not.

Thanks again for taking the time.

I was very interested to hear about celiac in Japan.

We lived there for a few years.

My daughter is actually from Central Asia though.

I"ll let you all know how it goes.

Thanks again.

I think we're on the right path to pursue this.

I just wanted to add a note on the gene testing. Although I am caucasian the double copies of the genes I carry are genes that are associated with celiac in the Far and Middle East. If you chose to do gene testing make sure they are not just looking for DQ2 or DQ8 as she may not have either of those. Her symptoms sound similiar to the ones I had as a child and my DH was misdiagnosed as 'poison ivy' for most of my childhood and then as atopic dermatitis as an adult. Make sure the Derm knows to biopsy next to the lesion and not the lesion itself. Excema is also associated with celiac so even if it is that it may resolve on the diet. My DD had that. After you are done with all testing do give the diet a good strict try for her. Although many think that celiac is not as prevelant in people of Asian background it is becoming much more common as their diet is being 'Westernized'.

I can't stress this enough, please do be sure to try the diet with her after all testing is done as false negatives are common especially in children.