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Advancing celiac disease One Person At A Time
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To those who don't know my situation, my husband has celiac, I don't. But that doesn't stop me from caring about those who deal with celiac disease just like my husband.

I was in of all places on Saturday, an Italian restaurant, alone grabbing something to eat before I finished my errands and it was empty at lunch hour; I sat chatting with the waitress. She asked me if I was married, had children, etc. She was busy folding cloth napkins but was free to chat. I told her a bit about myself and when asked if my husband would come to restaurant and eat there and I replied that it wasn't the best choice for him due to celiac disease.

She inquired as to what celiac disease was and I had time to explain; her eyes widened and she stated: "I have had test after test for my IBS and the Dr. still can't tell me what's wrong." She further stated that she is anemic, low Vitamin B levels, gets foggy headed and dizzy; has osteoporosis and of course diarrhea. She stated that since she works at restaurant & her meals are free all she eats is pizza and pasta dishes.

I got her home address and I will send her the official brochure from the Celiac Assoc. Of course I told her to get tested. But as with many, it just might come down to a case where going gluten free will resolve her issues whether she tests positive or not.

One of the websites I always give out is Celiac.com and this Message Board. If anyone has other sites that they want me to share with her, please let me know.

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this is the best website by far and lots of useful info on the forums too... but you can always refer people to CSA Celiacs I think it is csaceliacs.org that is the main page for the national support group and it's local chapters. For kids you can refer them to R.O.C.K (raising our celiac kids) info for that is on Celiac.com (thanks Scott!)

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I always approach with statement "Have you considered that it could be celiac disease?" I don't say it's definitely celiac disease as that's too presumptive. But in many cases eyes light up when I review symptoms with them.

I am giving her booklet fromt the CSA which I purchase for these occasions.

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That's awesome, being proactive and talking to a stranger like that! I am trying to learn to be so brave myself. :)

Also, I'm hoping to put together an article to try to increase awareness along those lines on the Gather site (link in my sig). Something that gets people thinking about how it might be POSSIBLE that their symptoms have a reason and aren't all just random.

Does anyone know if there's a simple information sheet to give people who have never considered the possibility of celiac before? When I talk to people about my own situation I nearly ALWAYS hear that someone shares (or knows someone who shares) symptoms that sound the same, but I nearly ALWAYS hear "but it couldn't be that." And then they never investigate further.

What can we do to get people to at least find out? And what do we do when they go to a doctor who says "nah" before they bother taking a history or doing an exam, as some doctors still do?

Aughhhh, it gets frustrating to think about! We need a gigantic celebrity to publicize the facts, like it says on the other thread. Sigh, there's got to be SOMEone!

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Yes another million or more to go....gave me a silly thought. Perhaps we should organize and go door to door like the political or religious groups do.

"Hello, my name is Deb and he's Mike. We're out here today to talk with you about the gluten free plan. Here's our brochures ... we want to help you maintain good health. Have you ever considered going gluten free? Our mission is to instruct those who need to go gluten free and don't know it."

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That's awesome, being proactive and talking to a stranger like that! I am trying to learn to be so brave myself. :)

Also, I'm hoping to put together an article to try to increase awareness along those lines on the Gather site (link in my sig). Something that gets people thinking about how it might be POSSIBLE that their symptoms have a reason and aren't all just random.

Does anyone know if there's a simple information sheet to give people who have never considered the possibility of celiac before? When I talk to people about my own situation I nearly ALWAYS hear that someone shares (or knows someone who shares) symptoms that sound the same, but I nearly ALWAYS hear "but it couldn't be that." And then they never investigate further.

It would be really cool to have an "Introduction to Celiac & Gluten Intolerance" in the form of a Word .doc ready to print up into a brochure on standard paper. It would be easy to carry around, and anyone who was interested in doing so could edit a paragraph or two to include a bit about their own experiences.

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Yes another million or more to go....gave me a silly thought. Perhaps we should organize and go door to door like the political or religious groups do.

"Hello, my name is Deb and he's Mike. We're out here today to talk with you about the gluten free plan. Here's our brochures ... we want to help you maintain good health. Have you ever considered going gluten free? Our mission is to instruct those who need to go gluten free and don't know it."

OMG! that's hilarious! That would be as irritating as the Jehovah's Witnesses who are always knocking on my door! Hey, maybe we could don white robes and hand out out fact sheets at airports like Hari Krishnas!

:P:D;)

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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