Daughter's Results Back

[horsegirl]

As you can see from my signature below, I have "non-celiac gluten intolerance" per the doctors.

I do not have the DQ2 or DQ8 genes, but according to Enterolab have 2 copies of DQ1 (hence my many neurological symptoms prior to going gluten free).

I decided to have my 4 year-old daughter tested through Prometheus (blood only) so the insurance would pay for it, & as an initial screening tool. Her symptoms, though mild, include occasional constipation, anxiety/clinginess, tantrums at times, & rash on her hands.

Her test results are as follows:

Anti-Gliadin IgG: 5.9 (range: <10)

Anti Gliadin IgA: 0.3 (range: <5)

Anti Human Tissue Transglutaminase IgA: 0.5 (range: <4)

Anti Endomysial IgA IFA: Negative

Total Serum IgA: 74 (range for age group: 41-395

Genotype: DQ8 heterozygous

So, this means that my husband has at least 1 copy of DQ8, since I do not have that gene at all.

His symptoms include occasional diarrhea, cramping, gas, & mood swings, all seemingly linked to some foods but not consistently gluten. He's never been tested at all.

I do not want to put my daughter through a Biopsy, plus I think it wouldn't show anything anyway since serologically she tested negative for antibodies to gluten.

I will talk with her doctor more next week about what to do next. But, what do all of you think of this?

Is the DQ8 enough reason to put her completely on a gluten-free diet for life? Her symptoms are so hit & miss now, & overall she seems to be thriving.

Let me know what you think, please.

Thanks.

[FlourShopGirl]

I would try the diet for her and see what happens. I've been holding back trying the diet for my son who has ADHD. It's just a major change although I think maybe I am building the walls not to start it for him. He eats it at home but not school. There are plenty of books (check Amazon) and I even made cookies tonight (Arrowhead boxed ones) and everyone loved them.

I don't think I would put her through the biopsy. I was thinking about he bloodwork for my son and I don't even want to do that. I haven't been fully diagnosed, I've had IBS for half my life and now a lot of mental problems which might be related. I've been on the diet for 2 weeks with very little change but it takes time from what I read.

The diet is the easy solution to just trying it and honestly, just getting the hang of all this is the hardest part. I felt like when I walked in the store, I could eat nothing and it's just a matter of getting an idea of what's out there to eat.

A good book is "Gluten-free for dummies".

[gfpaperdoll]

Horsegirl, just posting the obvious that your daughter also has one DQ1 gene from you. So she is DQ8 & DQ1.

[Worriedtodeath]

mY 18 month's iga was lower and her igg was higher than your daughter's. She was ftt, losing weight, and so horribly sick. We never received a dx of Celiac but put her on the diet and saw micralous changes. HOw did your dr decide to dx you with Non Celiac? We re still searching for dx for daughter and was just wondering what were the deciding factors in your dx. Wonder why everyone has such different reactions and such wide varying numbers? All my kids have .5 ttg and have wide ranging numbers for IGG and IGA.

Thanks

Stacie

[AllieB]

I'm struggling with the same issue, with roughly the same age kids. I'm trying to decide whether or not to put my 3 and 5 year old on the diet. I have celiac with one of the genes. My three year old has constant stomach aches, the 5 year old has lactose intolerance issues. But I've never even had them tested.

My blood work came back completely normal. I had the biopsy, which was suggestive, but not 100%conclusive since I was already on the diet when they did it. If I can't get a firm diagnosis, after my 31 years of struggling with this, there is no way my kids are going to come up with it already.

But does that mean that they should be a gluten free or gluten not free diet? I'm on the fence. Right now, we are going 100% gluten free at home, but allowing them to eat snack and other stuff at preschool. But my youngest doesn't complain about stomach aches after eating the gluten free food and he does all the time with gluten food.

It can't hurt if you start her on a gluten free diet. Keeping her from gluten shouldn't increase her chances of getting it. She's young enough to adjust quickly. This morning I presented my 3 year old with a gluten-free pancakes and he whined and carried on for a few minutes. Then he tried it, liked it, and ate almost the whole thing. The five year old ate his and then finished his brother's.

I'd like to know what you decide and how it goes. We might head the same way.

Thanks,

Allie

[horsegirl]

To answer a couple questions posed to me:

I was diagnosed Non-celiac gluten intolerance because of the fact that:

1). I didn't have DQ2 or DQ8

2). My blood work was all normal.

3). My biopsy was normal.

I really didn't care whether they gave me the celiac label or not; I knew that I needed to be gluten free to get some of my health back. I also found that avoiding other foods identified by Enterolab

(soy, casein, egg) has also helped.

For my daughter, I know she is DQ8 & DQ1, so she's at higher risk of developing gluten problems.

She eats mostly gluten free at home (she actually loves my gluten free snacks, bread, etc), but eats it

at school & restaurants. My husband & I both agree we won't put her through the biopsy, especially since with negative blood antibodies her intestines would probably look "normal" in the biopsy.

Now I'm just debating whether to proceed with the gluten free diet at this time or not. I've learned to manage it for myself, but it's hard to impose on someone else, especially a 4 year old.

I'll keep you all posted on what the doctor says when we talk next week about her results.

[Pattymom]

We are also in a similar place right now. I have been gluten-free for 3 1/2 years, since my yongest was born because she reacted to gluten with smelly mucusy poops. When did a gluten challenge after a few months, I felt lousy. I hadn't had significant symptoms, gas, bloating,e tc. but off glutne I felt great. My blood work was mildly positive, and I decided to leave it at that since I felt better off gluten. When my daughter turned 2 we started letting her have glutne she showed no reaction, after a few months we tested her, it was negative. Now at 3 1/2, she has fallen off the growth charts, she barely made 2 inches in the last year and a half. We just retested her and everything was negative. WE also tested her growth hormone,a dn one was bordeline, so we are waiting to see the endocrinologist.

We did decided to take her off gluten to see what might happen. she's been off for 3 1/2 weeks, and has already gained .5 pound. For someone who's weighed 25 pounds for the last 9months, this is great. It's hard to know since all her tests were negative--they didn't do a gene test though, just gliadin and endomysial. She is adjusting well to it since I don't eat it the idea of gluten free isnt' new to her, and I am after 3 years pretty good at the basics-I make a killer brownie, pizza, tasty waffles and pancakes. I alos bought a ton of gluten free snacks which I never did for myself to make it fun, adn every flavor of rice cake, dried fruits, etc. Her favorite cereal was already the Dora cereal and Little Einsteins. I can't help but wonder though if all the hassle is worth it considering that her blood work is negative. It seems like the easiet option to improving her health though, so I figure you need to at least give it a fair trial .

My question, how long have others needed gluten free to see growth changes? and what type of changes?

thanks,

Patty

[Nancym]

I would think the earlier you start the easier it is going to be to keep them on it. Besides, why not have the whole family eating the same? It's gotta be a ton easier and lowers the cross contamination issues for those of you who KNOW you have issues.