My Little Girl Possibly Celiac/gluten Intolerant

[BettyinMD]

Hello!

My little girl is 5. I've always suspected something was up with her. Her tummy has always been distended and she has the craziest GAS

Aside from that nothing major, you know?

But just last Saturday we were out to eat.She ate her normal foods that she likes(corn bread, battered fish,crutons on salad) only she didn't eat as much and she grew very quiet after. After we were done and getting ready to get in the car she vomited right in the middle of the parking lot.

We thought maybe she just ate too much but she didn't really.

She was mostly fine the next day. I remember my DH went out and got Dunkin Donuts that morning. She had like 2 donuts, I forget what she had for lunch(typical pb&J probably)We noticed her cheeks would get rosey almost feverish like after she ate and she started to develop what we now think is a dermatitis type rash on her knee. (I'll post a couple pics)

She didn't want dinner and she was doing bad again.

She was sick all last week. Like a stomach 'bug,' without the fever. She was very fatigued and didn't want to eat much.

I might add that I had the same issues as a little girl, around the same age. The Dr's back then just said 'I would grow out of it.' Who know's what's going on with me. I guess my Mom eventually added it back in small doses. I was also diagnosed with Hashi's Hypo-T about 5 years ago. I think it's the Gluten. I mostly avoid it because I feel better. I had some tests done but I don't think they prove anything. I was already gluten-free for a couple months beforehand, so I ate small amounts the month leading up to testing.

We didn't restrict the gluten last week. She had 'sick,' people food;crackers, soup etc..she wasn't getting better

We took it away for two days and she was better! Her brother got into Dad's oreos and snuck his sister one and she got that rosey cheeks thing again and her stomach hurt

She has an apt with her Doc on Thursday. I'm going to explain everything I just told you all and ask for testing.

I want to make sure I ask for the right tests. We are a military family and they love to give the most basic/generic tests for everything!

So from doing reading, I've come up with:

~Tissue transglutaminase antibody (tTG), IgA

~endomysial antibody (EMA) ??

ttg IgA/ttg IgG

~total immunoglobulin IgA

~Deamidated Gliadin Peptided IgG&IgA

Is there anything else? From what I'm ready the tests for Gluten Sensitivy and Celiac are not different, is that right?

FWIW, I tested negative for the genes. But have some antibodies present and also my total IGA was low( I think???!) 189(44-441)Also, I'm having a terrible time getting my Vit/Mineral levels up.

Ok, I know that was long, whew. Thanks for letting me share!

[BettyinMD]

Also, as much as it pains us to see her do bad when she has gluten should we still include it until Thursday?

Or since she's had it almost everyday since she was alive is there enough in her system that we can go ahead and take it away?

Hubby was out with the kids at a baseball game today and she had 1 cookie and he sat there and watched her cheeks get rosey. She started batting at her rash as well.

[pricklypear1971]

List of tests: Open Original Shared Link

Keep her on gluten til your appointment, you may have to find a new doctor if this one won't test.

If the doctor refuses to test her, find a new one. You may consider a dermatologist for a biopsy for Dermatits herpetiformis - the skin form of celiac disease. Not all gluten induced rashes are DH but if you're fighting for dx it's worth a shot.

[BettyinMD]

List of tests: Open Original Shared Link

Keep her on gluten til your appointment, you may have to find a new doctor if this one won't test.

If the doctor refuses to test her, find a new one. You may consider a dermatologist for a biopsy for Dermatits herpetiformis - the skin form of celiac disease. Not all gluten induced rashes are DH but if you're fighting for dx it's worth a shot.

Thanks for the quick response.

By keeping her on gluten would just a serving a day work? Like 1 cookie or a sandwich with her lunch?

Her Dr is very good..very astute! She hypothesized a heart defect when she was just 3. No hesitations and sent us for further testing,etc..she had a coarctation of her aorta..a kink basically. Just some side info there.

I know all about fighting for ones health. It took me 5 years and countless docs to get prescribed the right meds for my own thyroid problem. I finally had to go outside the network and pay out of pocket.

I'm going to get a good picture of her knee when she gets home. It doesn't look as severe as pics I've seen online but it has come about around the same time of her getting sick, so who knows.

Thanks!

[pricklypear1971]

Dig through the University of Chicago Celiac Center site. In one of those fact sheets or a free ebook they talk about how much gluten is needed.

From memory, the more the better with kids.

[pricklypear1971]

And IMO pictures or visual inspection of gluten rashes are pointless. It's really how they act that defines it, and a biopsy if you can get it.

But post them anyway, I'm sure plenty of people will say its DH and plenty won't. Don't mean to sound sarcastic or defeatist but that's just how it goes with gluten and rashes.

IMO, if eating gluten gives you a rash you shouldn't be eating it...get my point??

[BettyinMD]

well innocently enough the husband stopped at a restraunt with the kids and daughter had a corn dog..instant tummy pain

[Aprilelayne]

I hope you get some answers soon enough, its hard to watch the little ones get so sick and not know the cause

I honestly hadn't read anything about the 'rosy cheeks' until you mentioned it here!! I need to read on that as it may be yet another symptom to add to our growing list and odds of celiac (she's 18mons)

[BettyinMD]

I'm not the worlds greatest photog but I grabbed a pic this morning.Hopefully I did this right!

Open Original Shared Link

well, obviously I don't know how to upload photos here the right way and I would have to stay logged into flickr for everyone to see the pic.

[BettyinMD]

Let's try this

Open Original Shared Link

cool, that worked!

Like I said, not the best pic.

[BettyinMD]

This board moves fast! wow!

I also wanted to mention and it may be kinda gross, but my daughters stools have been green. She hasn't eaten anything green

whatever the test says, I won't feed her something that hurts her tummy. But what if it stops hurting and still does damage?

I had the same thing when I was younger and now I have Hashi's. Seems like there is a connection there.

[eatmeat4good]

You are very astute.

I admire your observations of her reactions.

Keep reading.

Are YOU getting tested?

Are you gluten free?

Sounds like you know how to fight for testing.

Either way the testing goes, you might want to both be gluten free.

[BettyinMD]

I hope you get some answers soon enough, its hard to watch the little ones get so sick and not know the cause

I honestly hadn't read anything about the 'rosy cheeks' until you mentioned it here!! I need to read on that as it may be yet another symptom to add to our growing list and odds of celiac (she's 18mons)

awww, does that happen to your little one as well?? Has she been tested yet??

[BettyinMD]

You are very astute.

I admire your observations of her reactions.

Keep reading.

Are YOU getting tested?

Are you gluten free?

Sounds like you know how to fight for testing.

Either way the testing goes, you might want to both be gluten free.

well, thanks!

I've been tested. I don't have the genes, but I believe I am intolerant. I was mostly gluten-free before I got tested..there were a small amount of antibodies that showed up. I'm sure it would have been higher if I had been eating more.

I have a history from when I was my daughter's age(throwing up, diarrhea, etc)..the Dr's back then just said 'I'd grow out of it.' But do we???

I stay gluten-free like 90% of the time. It doesn't affect me in the tummy but I get almost hung over feeling and achy if I eat a lot. It takes a few days to recover. So I know what I'm getting into if I eat it..when/if I do it's only in small amounts.

I need to start learning how to bake more yummy gluten-free treats. MY daughter has such a sweet tooth! The rest isn't that hard. We're more a meat and potato kind of family anyway.

[Aprilelayne]

awww, does that happen to your little one as well?? Has she been tested yet??

Tests are pending right now.

but yes, she's often 'rosy cheeked' and we've never found the cause. I figured it was just some of my irish fairskinned blood coming through on occasion. ha!

Its not everyday, more like every two or three days and it lasts about five to six hours. Since it never lasts too long or seem to bother her we've never really paid too much attention to it before. The school always makes a note about it because of the policy about sunblock (we are in Texas) but haven't connected it to sun exposure directly.

[BettyinMD]

I have a weird thought/question.

I tested negative for the Celiac genes but can one be a 'carrier,' of those genes??

can Gluten Intolerance turn into full blown Celiac??

Are there different tests to measure gluten intolerance -vs- celiac? (I can probably look that up)

Daughter's appt is tomorrow morning.

And for anyone who would like to make sense of the tests I've had myself that would be great!!

*I had been gluten-free for a few months and then for a month before testing ate the equivalent of a handful of wheat thins everyday

Gliadin IGG...6 (greater than 20 is the range)

IGA....11 (same, greater than 20)

Does everyone have these antibodies present?? Or do you think if I would have waited longer and ate more Gluten, it would have showed higher?

TTG IGA...o.7 (0.0-10.2)

TOTAL IGA...189(44-441)

Thanks!!!

I wonder if I should do a gluten challenge just to know for sure for sure. I'm just too darn curious and to see the numbers would solidify it I guess.

[pricklypear1971]

I have a weird thought/question.

I tested negative for the Celiac genes but can one be a 'carrier,' of those genes??

can Gluten Intolerance turn into full blown Celiac??

Are there different tests to measure gluten intolerance -vs- celiac? (I can probably look that up)

Daughter's appt is tomorrow morning.

And for anyone who would like to make sense of the tests I've had myself that would be great!!

*I had been gluten-free for a few months and then for a month before testing ate the equivalent of a handful of wheat thins everyday

Gliadin IGG...6 (greater than 20 is the range)

IGA....11 (same, greater than 20)

Does everyone have these antibodies present?? Or do you think if I would have waited longer and ate more Gluten, it would have showed higher?

TTG IGA...o.7 (0.0-10.2)

TOTAL IGA...189(44-441)

Thanks!!!

I wonder if I should do a gluten challenge just to know for sure for sure. I'm just too darn curious and to see the numbers would solidify it I guess.

Your genes do not change.

The bigger question is are you really gene negative? I don't see your gene test results here.

Some labs only test the alpha portion of the genes - genes are made of alpha and beta. You have 4 chances to have a half a Celiac gene.

For example - I am half dq2, half dq8.

If tgey had only reported or tested for alphas, my test would have shown only the half dq8 since the dq2 is in the beta.

AND the lab reported my genes as "negative" in the lab summary. You had to read the full report to see the half genes (where one was reported positive, the other negative) which were illustrated in the full typing, positive.

So, get your genetic results. the full report.

If you are - genetically, and your daughter + I am guessing Dad has a double copy or she has half a gene.

[pricklypear1971]

And if you are shocked that Dad has come into the equation genetically - imagine my hubs surprise when my sons half gene came from HIM. We know that because it's a half gene I don't have .

[BettyinMD]

I don't know..the gene tests just said 'not detected.'That is what is on the lab report. I don't know how I would track down the actual gene report??

And where would these genes come from? Can they come from grandparents and skip the parents? lol

I don't know anything about my Dad accept his parents are from Italy and my Grandparents on my Moms side are from Germany and Ireland. My Mom is healthy.

So should I stop thinking about doing a Gluten Challenge? I guess if I saw a definitive answer it would be like figuring out the missing piece of a puzzle.

But Gluten is not good for anyone anyway and it's so connected to Thyroid disease I should just stay away.

I still want to know though

[BettyinMD]

What do the small amounts of Gliadin mean?

And the Total test? I know the lower it is the more 'positive,' it is, right?

No matter what, if my daughter pops positive on anything I will quit it for good in show of support.

[pricklypear1971]

What lab ran the report? Call them.

If you were gluten-free before testing all accuracy goes out the window.

If gluten makes you feel bad, you have a problem with gluten. You are probably NCGS if not Celiac. Don't eat it.

[BettyinMD]

ok one more question(maybe two)

I'm on a low carb eating plan but once a week you get to have a 'refeed.' If I ingested a lot of gluten during this time period, do you think that would equate to having the 2-4 slices of bread daily that is recommended for a gluten challenge?

Just a thought.

Another issue I'm trying to understand. If you have genes for Celiac it doesn't necessarily mean you have or will become a Celiac patient. Can the opposite be true? If you DON't have the genes you can STILL be or become Celiac??

[pricklypear1971]

Having one dose of gluten per week is not the protocol for Celiac challenge.

It is possible to have Celiac without the dq2/8 but I think it's in the 1% range, according to current publications/research.

[BettyinMD]

What lab ran the report? Call them.

If you were gluten-free before testing all accuracy goes out the window.

If gluten makes you feel bad, you have a problem with gluten. You are probably NCGS if not Celiac. Don't eat it.

Makes sense. Maybe I just want to make it complicated, lol.

[BettyinMD]

Having one dose of gluten per week is not the protocol for Celiac challenge.

It is possible to have Celiac without the dq2/8 but I think it's in the 1% range, according to current publications/research.

so the chances of Gluten Intolerance of turning Celiac is low too?

I don't think I could eat it everyday and expect to maintain my weight Oh well, it was just an idea.

I'm pretty set with avoiding Gluten only because I'm Hashi's. My thyroid seems to behave more when it is not included.

I'm more concerned for my daughter and the results will be interesting.