Help - Still High Numbers - Contamination!

[ashtonjames]

Hello...we could use some help.

Our 5 year old was diagonosed in February, and since then we have been extremely diligent in his food selection. We call companies to confirm food is gluten free, etc. The rest of us in the house are gluten-eters. We immediately went to seperating things out like toasters, butter, etc to minimize the chance of cross contamination.

So, we ust went back for our first 6 month test recently, and his Transglutaminase number was even higher than when it was diagnosed! It was initially 188, and now was 251! On the top of this he has diabetes type 1 so when we heard this news it was simply overwhelming.

Again, we are gluten free in all of his food as much as we can tell now, and after we went gluten free with food he started growing again very well and seemed to be feeling better (no more tummy aches).

Any suggestions? Shoot them our way. Thanks!

[dilettantesteph]

I am sorry that you are having these problems. It is so difficult to have a sick child. It is wonderful that he is feeling better and growing again. I find that I react to many foods that state that they are gluten free. Labeling laws allow items to state that they are gluten free even when they contain some amount of gluten. If you eat enough of them they can still cause a reaction. Some celiacs are more sensitive than others as far as how much gluten is necessary to cause a reaction. Some people find that they have to have a gluten free household. I find that I need to avoid all products that aren't made in a dedicated facility. It it says processed in a facility that also processes wheat, it is likely to be contaminated with some amount of wheat. Sometimes, I just look at what other products that company makes, and if they contain wheat, I know that I have to avoid that item. In my case, my symptoms tell me that I have eaten gluten, and then I can make sure that my son doesn't eat those same things. You have it much harder. Some soaps, shampoos and lotions contain wheat. If you bake with wheat flour, it gets everywhere and he might be picking some up. You need to consider every item that may end up in his mouth. With a young child that is a lot of things. Did you know that playdoh,finger paint and stickers contain gluten? Good luck.

[ashtonjames]

I am sorry that you are having these problems. It is so difficult to have a sick child. It is wonderful that he is feeling better and growing again. I find that I react to many foods that state that they are gluten free. Labeling laws allow items to state that they are gluten free even when they contain some amount of gluten. If you eat enough of them they can still cause a reaction. Some celiacs are more sensitive than others as far as how much gluten is necessary to cause a reaction. Some people find that they have to have a gluten free household. I find that I need to avoid all products that aren't made in a dedicated facility. It it says processed in a facility that also processes wheat, it is likely to be contaminated with some amount of wheat. Sometimes, I just look at what other products that company makes, and if they contain wheat, I know that I have to avoid that item. In my case, my symptoms tell me that I have eaten gluten, and then I can make sure that my son doesn't eat those same things. You have it much harder. Some soaps, shampoos and lotions contain wheat. If you bake with wheat flour, it gets everywhere and he might be picking some up. You need to consider every item that may end up in his mouth. With a young child that is a lot of things. Did you know that playdoh,finger paint and stickers contain gluten? Good luck.

Thanks for your reply! What type of brands are you eating for snacks, chips or cheese? We are using tillamook cheese, and get Mission tortilla chips from Costco which say 'gluten free' on the bag, and we've called. Any advise is great. Thanks again all.

[Fiddle-Faddle]

I kind of hate to say this, but a 5-year-old is old enough to cheat on the diet, especially if he goes to school and can trade lunches with others or share their treats. I know teenagers who cheat!

Depending on how many others there are in the house, I might recommend making the house gluten-free. Bake all your own bread (it tastes SO much better than the store-bought crap), cookies, etc.

The gluten-free diet will not hurt anyone else in the house, and if they're old enough, they can buy their lunches at school/work if they're that desperate for gluten. It does sound like the health of the 5-year-old is at stake. Many parents of peanut-allergic children make their households peanut-free. I don't see a whole lot of difference in this situation.

If he is able to sneak a taste of gluten here and there, he won't be able to stop craving it--and those cravings are as real as any drug addict's. They only go away when one is TRULY gluten-free for an extended period.

My other thought is that there may be an additional issue, such as a food intolerance, that is preventing healing. If he just got a vaccine, that can also be an issue, though most doctors either won't admit it or won't believe it. But the flu shot contains 25 micrograms of mercury, and that can do all kinds of nasty things with gut permeability, as well as cross the blood/brain barrier.

[dilettantesteph]

I live in NY state where we have Wegmans. They mark their store brands as gluten free or not. So far not one of them has made me sick. Lots of other gluten free brands have. So most of the things we eat, you probably don't have access to. There are a few things though: Kinnikinnick donuts, made in Canada carried in our stores, but you can mail order. Glutino crackers, Pamela's cookies, Tropical Source chocolate, Real Foods corn thins from Australia. Seasoned nuts can be coated with gluten to help the seasoning stick better. I heard yesterday that oranges can be coated with gluten to make them more shiny or something so I wash ours now. Apparently some orange juice contains gluten. Strawberries can contain gluten. I think my son noticed this, he stopped eating strawberry smoothies be can contain gluten. There are a lot of little sources like that that you would never think of. You need to do lots of research. I was assuming that you child hadn't started school yet. If he is in school, even if he doesn't cheat, there are crumbs everywhere and it is really easy to get cross contaminated. My son has a lunch mate that would spit a lot when he talked and he kept making my son sick that way. We think. His doctor suggested that he use a tray in the lunchroom to avoid contact with food left on the tables.

Most cheese should be OK except blue. Careful with flavored yoghurts.

Whenever I try something new I search it on line with cross contamination in the search.

[ShayFL]

I agree with Fiddle-Faddle. He is getting it somewhere and school is a likely source. And if you keep gluten foods in the house, he will get to them. He needs 100% gluten-free for a few month to "withdraw" from gluten. Yes, it is like a drug and there is withdrawal. He might be edgy and moody during this time. Metabolites of gluten fit into our opium receptors in our brains. So it isnt his fault. But you have to get through it.

You will need to talk to his teachers about food sharing and treats. Maybe they can work with you to let you know when someone is having a birthday and such so you can pack a gluten-free cupcake for him so he doesnt miss out.

Even still the teacher cannot watch him throughout his entire lunch period. He may swap and sample other children's food. Can you eat lunch with him? OR Grandma eat lunch with him kind of arrangement? At least until he gets completely well and those numbers go down and he gets through the "withdrawal" phase?

Once he is clean from gluten, he wont crave it like he does now. And he will enjoy gluten-free substitutes.

A 100% gluten-free diet will help manage the T1 better too.

[happygirl]

It can take awhile to heal, even on a strict gluten free diet.

Was your child biopsy confirmed in February? Is another biopsy planned? What did your doctor have to say about it?

Hopefully with a lot of minds, including your doctors, working together, you will get the solutions you need.

[MNBeth]

Have you thought very carefully about cross contact in your own kitchen? When my son and I went gluten free last year, I tried to keep a mixed kitchen. It was hard work, though, and very stressful. My sister and her family do keep a mixed kitchen, and it makes me nervous when we're sharing a kitchen. (And last time they stayed here I did get sick.)

Some of the kinds of things that happen: Everyone eats something like pizza or burgers, which gets flour all over their hands. Then they're reaching into bags or bowls of gluten free things like chips or grapes and contaminating them. Those glutened hands are also handling ketchup bottles and butter dishes, and opening cabinets and drawers and the refrigerator, and moving chairs around, so I can get gluten on my hands just from touching the same things. I don't enjoy having to get up and wash my hands after I put ketchup on my burger.

Regular flour is notoriously hard to contain. It gets airborne when measuring and mixing and eventually drifts down onto everything exposed in the kitchen. I'm even wary of people's sugar canisters because they're so often right next to the flour canister and both are regularly opened at or near the same time.

Things like colanders, scratched or ruptured plastics and scratched nonstick cookware that are used for both gluten and gluten-free foods can often be the cause of gluten contamination.

So eventually we decided it was easier to keep the house mostly gluten free. We still buy some gluten cereals, but that's about it. It's a great relief for me not to have to be policing everyone's movements in the kitchen in order to keep my son and me from getting sick.

[AndrewNYC]

Another allergy/intolerance could send the number up again, or send it higher. In my case, 5 years after I thought I had gluten intolerance under control, corn sent my TTG level up and I developed the same problems I had when eat gluten.

Hello...we could use some help.

Our 5 year old was diagonosed in February, and since then we have been extremely diligent in his food selection. We call companies to confirm food is gluten free, etc. The rest of us in the house are gluten-eters. We immediately went to seperating things out like toasters, butter, etc to minimize the chance of cross contamination.

So, we ust went back for our first 6 month test recently, and his Transglutaminase number was even higher than when it was diagnosed! It was initially 188, and now was 251! On the top of this he has diabetes type 1 so when we heard this news it was simply overwhelming.

Again, we are gluten free in all of his food as much as we can tell now, and after we went gluten free with food he started growing again very well and seemed to be feeling better (no more tummy aches).

Any suggestions? Shoot them our way. Thanks!

[missy'smom]

Things like baking powder, baking soda and spices used for baking can be cross-contaminated. Mine were because I dipped my measuring spoons into more than one ingredient before washing them, so I had to get rid of the ones that were already opened and had been used and bought new ones shortly after I went gluten-free. There was one that I overlooked and it got me later on.

[cruelshoes]

So, we ust went back for our first 6 month test recently, and his Transglutaminase number was even higher than when it was diagnosed! It was initially 188, and now was 251! On the top of this he has diabetes type 1 so when we heard this news it was simply overwhelming.

Type I diabetes can cause a falsely elevated TtG reading. I am not saying he isn't getting contaminated somewhere, but you may want to explore the diabetes angle with his doctor.

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The University of Chicago Celiac Disease Center recommends additional testing, because the tTG test can sometimes be inaccurate in people with autoimmune disorders like Type 1 diabetes and thyroid disease.

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Causes of false positive celiac serologic tests

The endomysial antibody test is virtually 100% specific for celiac disease. However anti-tTG has been reported to be positive in the presence of liver disease, especially cirrhosis [33], diabetes [34, 35] and severe heart failure [36], as well as arthritis [37] and various autoimmune disorders [38]. The use of human tTG as the antigen in the test kit adds some greater specificity. Antigliadin antibodies may be present in inflammatory bowel disease [39], collagen vascular disease [40], and in many healthy people as well [41].

[Fiddle-Faddle]

Type I diabetes can cause a falsely elevated TtG reading. I am not saying he isn't getting contaminated somewhere, but you may want to explore the diabetes angle with his doctor.

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Wow, I did not know about these possibilities. I would feel horrible if it turns out to be something like this-- I assumed that the child was cheating on the diet. Either way, I hope you find out soon, with a minimum of angst!