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Celiac Disease

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15 years 4 months ago #4872 by Sheryl589
Celiac Disease was created by Sheryl589
Havn't been on here in a LONG time. I have a 21 year old daughter diagnoised with ITP in 2002. This week she was diagnoised with Celiac Disease. I'm just wondering if anyone else has both of these conditions or has ever heard of someone with both? :unsure:
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15 years 4 months ago #4887 by Sorenna1
Replied by Sorenna1 on topic Re:Celiac Disease
I have issues with gluten. They do not know if it is celiac or sensitvity. I went off it, so they can't do the tests now. In order for it to be accurage, you have to have the test done while it is still in system unless I went with the gene test. I had a Drwho did the gene test, but all his tests were errored for some reason. It did not show the gene but I had IGg response to gluten.

So I stay off it. My counts did go up a bit actually.
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15 years 4 months ago #4908 by Sheryl589
Replied by Sheryl589 on topic Re:Celiac Disease
I did read that you do have to have the gluten in your system for the test to be done right. Today I started reading a book by Dr. Stephen Wangen called "Healthier without Wheat". It says there are over 200 symptoms and diseases that Celiac can cause if it goes untreated. One of them is "ITP". There both autoimmune diseases. It says one causes the other. It says doctors are unsure but think if you catch it soon enough after being diagnoised with ITP you might reverse ITP or at least manage it better. If it caused Kayla's we definatley didn't catch it in time. Since Kayla's spleenectomy her count still drops to 0. She still recieves IVIg up to 3 times a year. More if she gets colds or infections.
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15 years 4 months ago #4916 by denn01
Replied by denn01 on topic Re:Celiac Disease
I was diagnosed with ITP in 2007, and then with Celiac in 2008. By the time I was diagnosed with Celiac, my platelets had gotten back up to the normal range. Immediately went on a gluten free diet, and it really isn't that difficult to follow. I do feel much better since I do not have wheat in my diet. The question will always be did the 2 go hand in hand, or was it just another autoimmune issue (had thyroid issues in the 70's w/an overactive thyroid gland which was removed). Is your daughter having trouble following the gluten free diet?
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15 years 4 months ago #4936 by Sheryl589
Replied by Sheryl589 on topic Re:Celiac Disease
We went to the libary and got books out to see what she could eat. We live in a very rurual area so there is NO place to buy anything. Also I read where its not just wheat,barley,rye and oats but that its hiden in things like hairspray and lipgloss. She bought a bread maker at a yardsale yesterday but still no way to make gluten free bread. I'm not sure at this point how she's going to eat ANYthing.

I would strongly recomend that anyone newly diagnoised with ITP and has stomach problems or any other problems (the list of symptoms says there over 250)to be tested for Celiac. I think if we found it sooner it might have saved her years of monthly IVIG and platlets transfusion.
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15 years 4 months ago #4939 by eklein
Replied by eklein on topic Re:Celiac Disease
I had a different problem with digesting, and when I got it figured out and changed my diet, I also had an increase in platelets and have sustained a remission that was started by Rituxan for over two years. I can't be sure that healing my gut helped my platelets, but I think it probably did. At conference Dr. Liebman said that if you have gut problems, fixing that can have a positive impact on platelets.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
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15 years 4 months ago #4941 by Ann
Replied by Ann on topic Re:Celiac Disease
My Panasonic bread maker has a gluten free program which is meant to be used with gluten free bread mixes, it recommends Glutafin, Trufree, Juvela and Schar mixes. I've never heard of any of them but looking on their respective websites there seems to be lots of recipe advice.