New To Celiac

[PB&kids]

I have a child who was diagnosed with type 1 diabetes in January and celiac this week. He is asymptomatic and celiac does not run in our families so this was a shock. We had just calmed down to living with diabetes.

My question is about zero gluten. With the diabetes we are constantly told by the medical professionals to be calm, work to keep his blood sugars within the OK range and not to freak out as infrequent highs will not lead to long term health issues.

I am completely freaked out by all that I've read about celiac, i.e. keeping a separate gluten-free toaster, making sure a restaurant worker doesn't touch a bun with gluten to his burger that we ordered without the bun, etc. If the child is not sick from slight contact with gluten like this, is it OK? Is there really long term consequences if you can keep the TTG levels under a certain amount (kind of like A1c's in diabetes)?

We are very on top of the diabetes and I'm working hard to remove gluten but is it OK for him to have a little bit the same as it's OK for him to run a high bloods for a few days when he's sick?

I really appreciate any insights you can give me to this new world.

Paula

[CeliacMom2008]

First, welcome, Paula! Second, it's going to be OK. Gluten free is a doable lifestyle change, but the first few months there is a lot to learn.

To answer your question - you need to aim for zero gluten. It isn't like diabetes where you can just get close. When your son ingests gluten it sets off an immune response in his body that in turn damages his intestines. I was recently at a meeting where the Celiac dietician said that the damages to the small intestine done by a small (think crumb of bread) amount of gluten take approximately 2 months to repair. It will take his body and immune system a long time to recover from a "glutening." (Those TTG numbers won't come down if he is getting repeated accidental (or intential) small amounts of gluten.) You may not see the effects of the damage (i.e. he's not throwing up, constipated, or having diarrhea), but long term his body will suffer the consequences.

Glutenings do occur. My son has been glutened 2 times that we know of in the last 20 months. We've had our suspicions a couple of times as well, but sometimes it's hard to tell (you won't know sometimes if they are just sick with the flu, in my son's case ate too many berries, or truly were glutened. Other people know 100% - projectile vomitting within minutes, etc.).

You say your son is asymptomatic. If this is truly the case and he stays that way, your road may be more difficult than if he showed symptoms. It only makes sense - my son was very sick for a week after eating some flavored popcorn salt that had gluten in it (who'd have thought you'd need to put gluten in a cheddar popcorn salt!) and he was pretty sick pre-diagnosis, so he is very motivated to stay on the diet. Without symptoms it might be a different story, I don't know. Also it will be a little more challenging for you in because you won't know for sure that you're doing it right until the next round of blood work. But it is still very doable and still very necessary.

Celiac is a very serious disease if left untreated, so it is completely worth every amount of effort that it takes. For us the first few months were really rough. There were the trips to the grocery store where I cried as I walked up and down the aisles. There were many tears over stupid stuff. Now, it's not that big of a deal. Our life is different - I wasn't much of a cook before, now I cook 3 meals a day 7 days a week for him (granted some might be a bowl of cereal or a nuked frozen mac & cheese ).

Your son can most certainly still be a normal boy and you'll learn to live with this too. If you have questions on what to do, how to do it, etc, ask away. We've all been where you're at!

Lastly, did your doctor tell you that you and your husband should be tested as well? You really do. Especially if you end up going with a gluten free household. Once you stop eating gluten the test results become unreliable. You need to be ingesting gluten for the TTG levels to show if you have Celiac or not. It may sound strange to you right now, but you may end up noting eating much if any gluten as a family. We're a gluten free household with only one Celiac. It's just easier on him and me, well all of us actually, if we don't have to worry about gluten in the house.

Good luck and again, welcome!

[Darn210]

Don't stress out too much . . . it's doable.

Paraphrasing my GI . . . there comes a point where obsessing about the diet is more harmful to your body (constant long-term stress) than an occasional slip-up. Now, he still expected my daughter to follow the diet and the "slip-ups" were accidental and not "cheats". He was just giving me some feedback on some of my "is this food/production environment/in-home-food-handling-procedure/etc safe" questions.

This is where I started:

https://www.celiac.com/articles/38/1/How-mu...liac/Page1.html

After I read that article, I calmed down a bit. I can imagine this "physical amount" of gluten. I can keep her under that level of gluten a day. She has not shown any symptoms and her bloodwork has been clear for the last year and a half.

We use products from shared facilities. We do not have a gluten-free home. My daughter does have her own toaster and butter and peanut butter, etc. All my cooked meals are gluten free as is all my baking (because I can't be bothered to cook twice at every meal and it's not hard to convert the family favourites). The rest of the family has access to regular (gluten) bread and cereal. We do take precautions. I don't knowingly give her something that has a "crumb" in it because a "crumb" is still under her allowable limit. It's just that the "limit" allows me to relax and enjoy our meals.

As a caveat, I feel the need to say that some people need to be stricter than what we are. Let symptoms (he may develop glutening symptoms once he's gone gluten-free) and follow-up blood work be your guide.

[PB&kids]

Thank you for your explanations. This does help. My husband and I were going down this line of thought after a dinner at Garlic Jim's last night. While our son liked the gluten free pizza, we had little faith that the fast-food pizza worker were really preparing the gluten free pizza separate from the area where they prepare the pizza with gluten.

Also, we are in the process of testing all family members and we will not intentionally have him eat gluten. Per the Pediatric GI, it's is extremely common for type 1 kids to be asymptomatic because they are caught early by the endocrinologist who does regular screening for celiac.

We just need to know if we should avoid restaurants like this or just do our best and let him eat the gluten free (hopefully) pizza.

Thank you again, Paula

[ang1e0251]

You may find as time goes on that he did have some symptoms of celiac disease but you didn't recognize them as such. Maybe they were subtle or you didn't know these could be attributed to celiac disease. Also after being gluten-free for awhile, sometimes an accidental glutening will kick in a strong reaction like you've never seen before. The people I know that are diabetics are pretty casual about their eating. They say they can eat anything they just adjust their insulin. That doesn't work for celiac disease as others have mentioned.

If he continues to be asymptomatic, watching his antibody levels should tell you if you are on track. The book "Living with Celiac Disease for Dummies" by Dana Korn is informative and funny. Her son was dx'd as a baby and she talks a lot about dealing with her child's celiac disease. It could put your mind at ease and is very helpful about how to cope with the diet.