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Word Must Be Getting Out
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In the past 48 hours I have met two total strangers both of whom have gone gluten free without any diagnosis from the medical profession. It was my understanding both did so after doing research on the internet concerning their gastro issues. To me this is very encouraging as more and more people are finding their way to this possible solution on their own.

One person has been on the diet for over a year and the other is just starting. Neither seemed overly concerned about the prospect of having to do this the rest of their life. Both were open about discussing their symptoms (just like most of us) and I did not sense any reservations on their part. I told them how impressed I was with their effort and wished both of them luck. Both encounters were in grocery stores. One worked as a cashier and the other was shopping in the gluten free section. Both were young women in their teens or early twenties. I sensed a lot of maturity when speaking to each of them. The word is getting around.

Tom

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Tom:

In the two years since I was diagnoses and learned what in the world Celiac Disease, I have witnessed tremendous awareness.

You are familiar with my hometown. We had no gluten free products. This week the Food Lion (one of two grocery stores) put in a huge health food section and more gluten free products that I only have heard about from this site. Talk about a kid in a candy store.

It's also good product marketing to the "Boomer" generation.

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I've been in the gluten free aisle in the store and I'm always amazed how friendly people are who are looking at the same time. I've been asked several times if I'm gluten free and how long etc., etc. People are so willing to share tips and I've been invited to come to meetings. The other day I was in Barnes and Noble looking at G.F. cook books and another gal comes over right by me and I noticed she pulls a G.F. cookbook down. It didn't take long and we were sharing stories of how long we had to suffer before we got the right diagnosis.

I'm so happy there is the awareness out there now. It's not such a loner disease anymore.

Gail

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I think there are a lot of people out there that have gone gluten-free without a diagnosis. I know a lady from my office building that she & her daughter & a friend are all gluten-free & DF & they have no intention of getting a diagnosis, & they are very strict on the diet & do not cheat. They all had a lof of gastro problems and were constantly at the doctors office. No more, they laugh about not making appointments and spending all that money at the doctors office. they had everyone in their apartment complex researching on the internet for them - in addition to talking to me, & they said that all the people in the complex were amazed with what they learned...

With all the publicity that gluten-free is getting now, I think that there are a lot of people that have looked at their health & the health of their families and figurered it out & just threw out the flour etc. There are a lot of people out there that are now used to getting their info on the internet & they are checking it out.

I would also like to say that I have been amazed at the diagnosed celiac people that I know that do not belong to a support group and do not post to the internet etc. I live in a poor part of Houston & the local grocery has a nice gluten-free section and it is sometimes sold out of the best things, people are buying this stuff. & one of the main whole Foods here in town, sometimes you can go thru there & say yes, someone from out of town has been in here & claned out all the Lundberg Rice Chips, the brownie mixes etc etc. Sometimes I am guilty of buying the last three boxes of something myself, maybe picking up a few things to gift to my friends, etc.

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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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