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Severity Of Disease
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Our 5 year old daughter has recently been diagnosed. Biopsy showed no damage but stain test (??) was positive. Only symptom is dull stomach pain. Has been gluten-free for 2 months...no improvement. She is also lactose intolerant and type 1 diabetic.

When we mentioned to gastro doc that playdoh has gluten or that some lotions and other products have gluten she seemed to think that avoiding these things are not necessary. She said that she only has a mild case, beginning celiac, no damage done. Is it really necesary to avoid non food products? Does it get absorbed through skin contact? Are most of the message board members severely affected celiacs? We are not trying to be ignorant or offend, it is just that we don't feel our docs really know much beside diagnosing. We are just trying to get more perspectives from actual celiacs. One last question, does anyone ever get "bad growing pains" in their legs? Thank you in advance for your help

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Is it really necesary to avoid non food products?

Yeah, important to avoid all sources of gluten that you can. Gets on the hands, then can be ingested when she eats, or just puts her hands in her mouth.

Your doctor may not think it she needs to avoid all sources, but she is intolerant to gluten. So best to keep all sources out of her body. Think of it as being posion. Would you let her have some, just because she didn't have much damage done to her from it yet?

Does it get absorbed through skin contact?

Nope, it's too big to be. At the molecular level, or something smart sounding like that, lol.

Not sure about the leg pain. I did have knee pain, but that was doing a major growth spurt.

Hope some of this helps.

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Our doctors are at Duke Hospital and as smart as they are, they do not seem to know much about the day to day stuff iwth Celiac Disease. YES, you need to avoid all gluten. I understand the disease to affect/damage each person to the same degree even if the Celiac is not exhibiting symptoms from gluten. I was even told that that is when it is most dangerous, b/c the Celiac may beginning ingesting gluten and not know it and be doing serious harm.

2 of the moms in my support group said their daughters complained of severe leg pain/cramps. Once they became gluten free, the pains went away.

Hope this helps.

Leslie

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I disagree with the idea that it damages everyone equally, as biopsies taken on people who have had symptoms for a long time still show quite a variety of damage. And some people seem to never register full damage on biopsies, but are still gluten-intolerant. (I'm no expert, so this is the opinion I've formed from my studies; I could well be wrong. :-) )

But that doesn't mean that you should have any additional gluten. I would avoid even "topical" products because it's just not worth the risk of ingesting ANY. Yes, yes, the chance is low. But the chance of getting hit by a car crossing a freeway at 2 in the morning is lower than at noon - you still don't do it! ;-)

I'm NOT very symptomatic. I get some symptoms, but I was never losing weight, dangerously sick, or unable to work. I was tired and cranky, and had some abdominal pain and some constipation. Didn't really interfere with my life, just "brought it down a notch". I still avoid gluten like the plague, 'cause I don't want to risk whatever damage it COULD cause.

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    • Thanks.  This is very helpful.  Our first post diagnosis grocery store trip took several hours, just trying to read labels to make sure everything is safe.   Our son loves bread and this going to be the hardest part. 
    • i would agree with most of your assessment but overall the popular chefs are very aware. Ed Kenny at Town did have  gluten-free options on the menu.  Mavro's will fix something special given advance notice but its expensive.  excellent but very expensive.  Alan Wong is very aware and will have his staff prepare something as well.  We did find many options at both Oahu  whole foods -- mostly  with tofu. the only thing  there is to be aware of cross contamination with things  next to it.  they make a great gluten-free southwestern tofo dish which is great but not if its sitting next to anything with gluten. Its not whole foods but people use the smae  spoons and tongs i found more at   down to earth in peal city than by  University ave  
    • Hi,  I'm in KOna but my kaiser doctor just retired  who was pretty good about it. I dont know of a specialist here  but most of hte kaiser docs wil test you if thats when you need to talk to them about. good luck  
    • Yes.  And wouldn't it have been nice if your doctor had tested you for Celiac disease before you went gluten free? Then you would know if your issues are Celiac or not.  That would help you know how careful you need to be, what other illnesses and problems to look for, whether you might be passing a genetic disease on to your children, if you should look for another cause of your symptoms, etc  
    • I would be very careful in giving this kind of advice, she is in an advanced stage. I was there and one additional symptom that I was getting was a strong urge to commit suicide so eating gluten for three months might not be the way to go for some people. If a gluten free diet stop the problems them gluten is the problem or a least part of it. I eliminated MSG from my diet because I notice that the common denominator for some products that affected my well being was MSG. I eliminated oats because I notice that I would get canker sores every time I ate it. Wheat is what affect my brain the most, irritability gets uncontrollable, my mental capacity greatly diminish, rash in my arms appear, can't sleep,etc. Barley makes my stomach groan, and constipated. Will try testing how Rye affect me some later time. 
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