Am I Accidentally Glutening My Daughter?

[PLGW2012]

About nine months ago my nine year old was diagnosed with Celiac disease during a routine blood test. She has no symptoms, except for scalp psoriasis which may or may not be related, according to her doctor.

When she was diagnosed, her blood work was off the charts with every marker for celiac, according to the nurse (not sure if that's true). Her upper endoscopy showed stage 3-4 damage - the doctor said he was shocked for all of these results in a nine year old with no symptoms.

My question is this: her doctor is not interested in doing any follow up tests, but I'm concerned - how do I know if she's improving?

Everyone else in the family eats gluten. Is the risk of cross-contamination high? When I asked the doctor (celiac specialist) he said "don't go overboard" with trying to keep gluten away from her just keep her from eating it.

Should I push the dr to retest and see if she's getting better, since we don't have symptoms as indicators?

Thanks, sorry for all of the questions.

Here are the original labs:

IgA Gliadin = 63.1

IgA TTG = GREATER THAN 100

EDIT: I forgot to mention the IgG Gliadin = 53.7

The reference value says:

Less than 20: Negative

20 to 30: Weak Positive

Greater than 30: Strong Positive

[cyclinglady]

Your daughter should have post-diagnosis testing. Your Doc doesn't sound very knowledgable. Here is a link to the U of Chicago's Celiac Center. You can share it with him and push for testing.

Open Original Shared Link

My house is gluten free as the risk for cross contamination is high --especially with kids in the house. I send pre-packaged gluten food with my daughter to school.

Ugh, I am on an iPad. Will write more tomorrow on a laptop!

Welcome to the forum. Check out the newbie section.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

[powerofpositivethinking]

follow-up testing should definitely be done

 

I would print off the link cyclinglady gave you and take it to the doctor.  If he refuses...find a new doc!

 

since I didn't get a positive biopsy, the GI doctor I saw wouldn't officially diagnose me with celiac even though I had three strong positive DGP IgG tests and symptoms with symptom resolution.  However he's testing my antibodies at the intervals of those officially diagnosed with celiac anyway. 

 

Push for those tests

 

EDIT:  If the doctor is a celiac specialist, and he isn't interested in doing follow-up testing, perhaps he shouldn't call himself a specialist   Also I'd get a copy of all of your daughter's test results.

[NoGlutenCooties]

When I asked the doctor (celiac specialist) he said "don't go overboard" with trying to keep gluten away from her just keep her from eating it.

 

 

I'm not sure what your doctor meant by "don't go overboard".  You have to go 100% gluten-free.  Does your daughter need to live in a bubble?  No.  But getting little bits of gluten from time to time is out of the question.  Whether she shows outward symptoms or not.  Because a little bit of gluten still triggers the antibody production, which causes damage.

 

I agree with the others that they should do follow-up bloodwork to make sure her levels are coming back down to normal.  In my opinion, any doctor who calls himself a specialist should know this.

[WinterSong]

I agree with everyone on follow up testing.

 

I'm concerned, as well, with what your doctor said about "not going overboard." It is WAAAAAYYYYYY more than just not eating gluten. Cross contamination is so easy in shared kitchens. Toasters, cooking utensils, pots, pans, cutting boards, plastic Tupperware containers, jars of peanut butter/jelly/condiments, counter tops with crumbs on it - all of these things could easily make your daughter sick. 

 

You might want to look into getting a new doctor.

[skullgrl]

Hi, Judging by the time line of my health problems, my celiac disease showed up around your daughter's age unlike her I wasn't diagnosed until this year (6ish months ago) mainly because mine was largely asymptomatic.  Or I didn't have the standard symptoms that people/Dr,'s associate with Celiac disease. (I wasn't pooping myself/wasting away etc.) I even have had big issues with scalp psoriasis. I really glad your daughter's Celiac disease got caught so early, I really wish mine had too. This doctor sounds like they know nothing about celiac disease, take your test results and run!

 

I can guarantee you if I was eating your daughter's food right now I would probably not be doing to well. For example, my boyfriend touched his keyboard, wiped his mouth and then kissed me which glutened me. I've trained myself to never touch my mouth without washing my hands first. I can't have anyone touch anything and then continue to prepare my food.

 

If you are using the same nonstick pans for her pancakes and the gluten ones then hers will contain gluten. Please read up about cross-contamination. Here are two very good sources.

Open Original Shared Link

Open Original Shared Link

 

I'm glad you found this site, its a huge help Best of luck on all your gluten free adventures.

[PLGW2012]

Wow, thanks so much for the replies. This is so frustrating, because I start to feel like we have it down, then we learn about something new, like cross-contamination! We've been careful with peanut butter and jelly jars, but the pots and pans never occurred to me.

I did stop using regular flour, because I read that it stays in the air, and now the whole family eats almond flour and coconut flour baked goods instead. But the other kids still eat regular bread and tortillas. The rest of us have all tested negative for celiac, but I that either my husband or I must have it because it's genetic.

I'm glad you all replied, because now I feel more comfortable insisting on follow up tests. I assume if she's not improving, we need to be more careful, right? Or is there something else that would need to be done?

Thank you all so much!

[NoGlutenCooties]

The rest of us have all tested negative for celiac, but I that either my husband or I must have it because it's genetic.

 

Just wanted to add that yes, one of you must have the genes that predispose you to Celiac, but that does not mean that you actually have Celiac or even that you ever will.  It is estimated that approximately 30 to 40% of the population has the genes, but only about 1% of the population actually gets Celiac.

[pricklypear1971]

From personal experience I can tell you that kids and gluten (them being the custodians of it) is the worst thing to try to work around. They track it everywhere, touch everything, leave crumbs, lick things (and each other), and refuse to wash with soap. In short, I don't suggest giving them gluten in the house. I advise looking at gluten as the contaminating exception to be eaten outside only, and under extreme supervision. They must be dusted off and soaped before coming in.

There are plenty of opportunities for the non celiacs to eat gluten outside the home. My husband and son don't eat gluten at home (except on rare occasions), and are likely to be kicked out when they do. They also get tired of the Gluten Police (me) watching every move.

Also, you must not wash gluten dishes with the same dishwater and rag. I personally use a disposable towel to wash it off, then put it in the dishwasher. My dishwasher isn't sufficient to clean it off and safely decontaminate the crest of the load (but we have hard water).

Anyway, getting gluten out of the house and cleaning all surfaces and cooking items is a chore in the beginning. Don't feel bad when you discover something else that must be cleaned/replaced. We've all been there. This is a process.

Given that you now know she's been getting contaminated, I'd concentrate on fixing that instead of more tests. Of course she's having issues if she's continuously getting exposed at home.

Again, please do not beat yourself up about this. Even when the celiac is in charge of deglutening and learning the diet, these things happen. It's a process.

[cyclinglady]

I'd really convert the house to being completely gluten free until your daughter is feeling better and you can handle both gluten-free and gluten in your house and that includes training the rest of the family.  Yes, your family may balk, but wouldn't they all come together if you were dealing with cancer?  

 

It's easy to keep gluten out of the house.  Use corn tortillas instead of flour.  Whip up batches of fresh popcorn, eat potato and corn chips, fruit, veggies, etc.  Make gluten-free cookies and other treats and even your gluten-eating kids won't be able to tell the difference.  Send them off with pre-packaged cereal bars, etc. in their lunches.  

 

Treat them with gluten outside of the house.  I often stop after school for Beans, Rice and Cheese burrito for my daughter or the donut shop for a special treat.  Again, get the gluten out of your house,  at least for a while.

 

I do have some gluten in the house, but I only have one kid and she's trained to wash her hands immediately when she gets home and we never allow gluten in our car.  She eats some pre-packaged gluten things in her lunch, but I'm the one to control the cooking of noodles, etc. and the clean-up.  

 

Sounds crazy for all these precautions, but both my husband and I are gluten free.  I fractured my back this past summer doing nothing!!! So, celiac disease is serious!  I only had anemia as my main symptom, who would have dreamed I was doing so much damage to my body and not know it?   So, I have to be careful about glutenings.  I do not want any more fractures!  And I don't want to develop any more autoimmune disorders either!

 

It is a learning process and it will take time, but it does get easier!

 

Best of luck!

[1desperateladysaved]

When you get retests, the antibodies should be low.  That would mean that you are doing a good job being gluten free and the body is cleaning itself out.  One must remain gluten free for life!  I just said to clarify, because we have heard of doctors that do not understand this also.

 

D