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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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    • Marip, Have you been diagnosed with celiac disease or Non-celiac Gluten Intolerance?  I notice you joined in 2014.  Did you ever go guten free?  How can we help?   Sorry, I'm not a stool expert!  You could Google it...  Malabsorption?  Standard lab tests that check for anemia and vitamin deficiencies, etc.  should help make that diagnosis.  
    • You can eat just a slice or two (or equivalent) of bread a day for accurate testing.   I understand about the high deductibles.  We're self-employed and we pay for our health insurance. 
    • Sure, if it's gluten free, then fine.  I am very allergic (like anaphylactic) to ibuprofen and aspirin.  So, in my case, I would just tough it out.  Go to bed.  Sleep it off.....eventually. My money is on the garlic and onions.  I can't consume those either (damn that zonulin/leaky gut -- google it along with Dr. Fasano).  I just season with salt, pepper.  Boring.  But no gut issues.  I'm hoping like my lactose intolerance (resolved), that I will get garlic and onions back.   Finally, sometimes just eating anything can hurt when you still have intestinal damage.  Hopefully, you'll feel better in two or three hours if it's celiac related.  Longer if it's an intolerance (leaky gut thing....) Hugs!      
    • I read on their website that all Advil is gluten free, I had such bad pinching cramping today(which I don't why since I prepared all my food at home today.) I made a pot roast, salt garlic, onions...No gluten but still pain, That's the only thing I ate today..I don't eat breakfast or anything.   Anyways.   Is it a good idea to take Advil for the cramping? That's how I would describe it like someone is reaching inside me and pinching me and twisting my insides.    This is what I took  
    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)   --Edit--
      I just now reread the part that you still need to be on the gluten foods even for biopsy so I'll be sure to do that too.
       
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