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Possible Celiac

Discussion in 'Parents of Children with Type 1' started by Colinsmom, May 17, 2013.

  1. Colinsmom

    Colinsmom Approved members

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    OK. I am having an anxiety attack over this. My don had bloodwork done last week as part of a routine endo visit. I got a call today saying he tested with very high levels of antibodies to suggest celiac. He is sending out for additional labwork. Is it normal that he has zero symptoms? The only thing he has that seems to be listed anywhere as a symptom is that he is short. Could the numbers be due to anything else?

    He is the pickiest eater around and I am just so sad at this possibility for him. I know food should not be such a big deal. But we tell our kids that they are no different and can do anything any other kid can do.

    This would change all of that.

    This may sound stupid, but I literally cried watching him eat his favorite cookie today. I am crying as I type this. Someone tell me I am jumping the gun on freaking out about this.:(
     
  2. Darryl

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    Gayle,

    Celiac in children is often non-symptomatic, as untreated celiac leads to a long and slow process of damage which may not be symptomatic until adulthood. It's great to know about it now, because if he stops eating gluten, that damage will never happen.

    If he has celiac it's not a big deal once you get past the adjustments that you need to make, it's like a food allergy, and there are a few things he'll need to stop eating. Almost every food is gluten free with the exception of traditional breads, pastas, cereals, etc., and there are gluten free substitutes for those. He can still eat at most restaurants as long as you have a talk with the chef about ingredients and food preparation. Most importantly, celiac will not impact his health or life expectancy at all if he eats gluten free.

    Do you have more details on the antibody tests? Usually they test TTG, which if over 20 is likely celiac. They also test EMA and if that is positive, it is 100% specific to celiac. There is a third test call IgA which simply validates that the other tests are valid.
     
  3. Colinsmom

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    I am not sure which test, but I know his number was 107, so I am thinking that is pretty high. Does your child ever eat gluten? Will cheating once in a while negate any changes you make? I am concerned about things like pizza at birthday parties, the occasional chicken nuggets, etc...
     
  4. MamaC

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    Someone with celiac should never KNOWLINGLY ingest gluten. Accidents happen; slips happen; some suffer symptoms with ingestion, and some do not. There's almost always a solution/substitution that can be provided.

    I've been at this with my daughter for over 20 years, mostly successfully. Once she was out from under my thumb, she started being less...careful about gluten than I was. It's impacted her in various, somewhat invisible ways. She's always anemic, for example.
     
  5. Darryl

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    A TTG of 100+ (if EMA is also positive) is a virtually certain diagnosis of celiac. If so, eating gluten once in a while IS a problem. The elevated antibody reaction from a single ingestion of gluten exceeding 1/50th of a gram (a crumb of bread) can take a months or even a year to return to normal levels. It took our daughter 2 years eating GF for her a TTG to drop under 10 from an initial dx of 75. If gluten is accidentally eaten, there may be no symptoms, but the underlying antibody inflammation may last a long time and increases various health risks to the whole body.

    Birthday parties and such can be difficult but there is often some other kid at the part who can't eat pizza or cookies because of an allergy to dairy or nuts. You just need to arrange something GF with the host of the party. There are terrific GF cookies and brownies and a couple of really good GF Pizzas like Amy's (http://www.amys.com/products/product-categories/pizzas). Many other foods at parties are GF - ice cream, M&M's, potato chips, corn chips, just about any kind of drinks, etc. And of course, meats, cheese, salads, nuts, dairy, fruits, vegetables, most salad dressings, hard candy - these are all GF unless something unusual is added to them.

    So don't worry about it too much even if the dx is confirmed.
     
  6. Nicole N

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    We received a letter from the doctor last week that our son's initial blood work (not sure what test) came back positive for celiac. The dr. said we'll talk about this further at his next visit. I assumed it was not an emergency then (our appt isn't until July)...and that he was probably going to order additional tests. I am hoping and praying this is just a false positive result. I will die if I/we have to deal with this on top of T1D!!!! Cereals, pizza, pastas, bagels are foods he loves and eats often (cereal daily).
    Nicole
     
  7. quiltinmom

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    Yes, you can have celiac without any symptoms.

    I don't know if this will help, but I have a few celiac friends (or their kids).

    One said to me, "I'd rather have celiac than diabetes." (Meaning, she feels celiac is easier to deal with, her 4 year old DD has it)

    Another friend is trying gluten free diet (not diagnosed, but has good reason to suspect some form of celiac/gluten intolerance) said, "it's not that much of a sacrifice." She can still make GF cookies and her kids don't even notice. She can still eat most of what she wants, using alternate flour. She said the bread is the thing that is the most different, but everything else is not that much different. (I know she's an adult, and a child will react differently, but take it for what it's worth.)

    I think it's another adjustment, and once you find your "new normal" your emotions will calm down. That said, I think I would be crying right now if one of my kids was diagnosed with celiac. I don't think you are overreacting. I think what you are feeling is normal. I wish there was more I could do than say these things. I really do feel for you right now. But you will get through it.

    Good luck! Keep us posted.
     
  8. Meredithsmom

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    Ok. My DD had just about the same experience and I reacted just about the same way as you are. I was also in complete denial and loaded her up on gluten filled foods until the very moment of getting the biopsy results.

    You need time to wrap your head around this. You will be fine, eventually. Breathe and take it one step at a time.
     
  9. Darryl

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    Many cereals in the supermarket are GF, just check the box. There are GF pastas (we use Tinkyada brand) that you can't tell from regular pasta. Bagels, breads, and pizza are a little different from the non-GF counterparts, but after a year or so they won't remember the difference. It's like a food allergy, only not as bad as a food allergy because there is no immediate serious reaction.
     
  10. manda81

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    Celiac isn't so bad. Even Chuck E. Cheese now has GF pizza/cupcakes (completely sealed so no cross contamination!) for birthdays, etc. My kids eat donuts, cereal, pasta, pizza, bagels... everything anyone else eats, only his are gluten free. There are a lot of really great gluten free products, even for picky eaters.

    My oldest son had no symptoms, either, until he fell off the growth chart completely. He's still in the 3rd percentile, even almost 3 years later. That is a symptom, just not a painful one.
     

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