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Skin Rashes
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Oh my gosh! I was just diagnosed with Celiac this past Friday and as I'm reading more and more about it, more and more things are starting to make sense. A while back, I kept getting this rash all over my neck. I never did figure out what it was or why I got it. I hadn't changed anything about anything so I just couldn't figure it out. But now I realize that it's because of this!

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Yep. When I first was diagnosed it was like a lightbulb went off in my head and I could look back at the past 10 years and think "THIS is why! Now it all makes sense!". It's a relief isn't it? It's terrible to have something wrong with your body and not know what it is.

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It really is a huge relief. I mean, it stinks to have something like this, but at the same time, it's great to finally know all the why's and what's that have been going around all my life. When I was 12, one day I woke up and had all these watery-looking bumps all over my right knee. I went to doctor and after doctor and no one could figure out what it was and no one could cure it. Just as suddenly as it had appeared, a few years later it was gone. Last year I was suffering from really bad muscle cramps in my legs and went from doctor to doctor, again no one could figure it out. My hair has been falling out like crazy for a while now, to the point where I have all these little bald patches around my face. Now that I look back at these things, I've noticed that when these things were happening, I was also having really bad stomach problems at the same time. It's like all the pieces of the puzzle finally fit now.

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Hi shortstuff2309,

It's so cool when it all falls into place like that isn't it? :D I know what you mean. When I figured out that I had celiacs I balled my eyes out. Not because I was sad that I had the disease, but because I was so relieved to finally know what was wrong with me and that I could "cure" it (manage it, and make myself well) simply by being gluten-free.

Now that we have more knowledge and information than our doctors we can go back and tell them what we have, and get them educated. Yeahhh!!! :D Maybe we can help save someone the agony we went through by not knowing for so many years what was wrong with us.

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    • 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".  
    • Thanks cyclinglady & manasota! I appreciate it. I came to give an update...... I'm still 99% itch free. I get a "place" like a bug bite once in a while that itches and I just use the prescription steroid cream on it & that takes care of the itch. My rash is healing up rapidly everywhere. Almost clear skin now! Yaaaaayyyyyyyyyy! Now for a rundown of the "treatment". For 20 days I took a 100mg doxycycline twice a day. Then we upped it to two 100mg doxy twice per day. I took those for 5 days & made rapid progress and the itching stopped. The doxy was getting my tummy though. It was getting really rough despite my eating yogurt. So on day 6 and day 7, I took two 100mg doxy in the am but in the pm I just took 1 of them. On day 7, I was nauseous for hours on end. So since I was still doing well without itching and the rash was healing everywhere, I decided to cut back some more. On days 8, 9, & 10 I have only taken two 100mg doxy in the am and none at night. I'm doing good and my tummy is much, much happier! No more nausea!  I'll update as things go along.
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