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  Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › celiac
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celiac (Read 3555 times)
mg12061
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celiac
Jun 25th, 2011 at 6:08am  
Kathleen saw the Gastro Doc yesterday and he's 99% sure she has celiac disease. This will mean a gluten free diet for her (and probably for us). She's not been herself for months and has had so much belly pain the thought that just changing her diet is a relief, it could be worse. After all she's been through... this we can do... She will still need to have the scope and biopsy to confirm it. This means she needs to go off the asprin (yikes). Have any of you been of the asprin for several days???  The doc ordered lots of blood work to check vitamins levels clotting and thyroid all of which can be affected because of the malabsorbtion of vitimins and medications. Her scope will be a week from Tuesday and unless he finds something different she will be going gluten free...
Mary Grace
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twinsmom
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Re: celiac
Reply #1 - Jun 25th, 2011 at 11:30am  
Hi, Mary Grace!! Smiley

My girls have each had two surgeries after their brain surgeries - once to have their tonsils out, and once for sinus surgery.  Both times they had to go off the aspirin for 10 days before and 5 days after.  I was as nervous as you are, so I understand how you're feeling.  But my girls did fine.  I know I slept better on day 6 post surgery when they were back on!!

Also, FYI, in case you haven't found it already - google "Raising Our Celiac Kids", often referred to as R.O.C.K.  It's a support group for families of kids with Celiac Disease.  I have a friend with a little girl with Celiac Disease here in NH, and she finds it very helpful.(she does not also have MM, but she's VERY knowledgable about celiac disease).

I bet she'd be happy to talk with you via email, if you'd like!  Send me a P.M. if you want, with your home email address, and I'll pass it along to her.

I'm sorry you have another thing to worry about - but Kathleen is SO lucky to have you.  I know you're going to be a Celiac expert in no time!!

XO, Kristen
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mg12061
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Re: celiac
Reply #2 - Jul 3rd, 2011 at 11:20am  
  Kathleen is scheduled for the endoscopy and biopsy on Tuesday morning. She's been off the asprin since last week, I will be relieved when she is back on. I'll be very happy to see her feeling well again once we start the diet of gluten free. Just one more reason to go with your gut and question Dr.'s. I mentioned testing her to a few different Dr.'s when she was in the hospital and afterwards when she was still having symptoms for weeks and then months. They still insisted it was a virus. Her Primary care doc even said well jsut try the diet and see if it helps. (her gastro doc said he hates when dr.'s do this because then he can't test properly).but it was finally her neurologist who listened and actually did the first test. I could kick myself for not insisting on the test when I first brought it up. He gastro doc is great and tested her for any deficiencies. She could be deficient in any or all vitamins or her meds. He has also set us up with an apptointment to see a dietician.
Mary Grace
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momkaren
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Re: celiac
Reply #3 - Jul 3rd, 2011 at 5:44pm  
I pray everything goes well with the endoscopy. If all her blood work is fine and once she starts the gluten free diet, she should see results quickly.

Don't know if you are aware that gluten can be found in non food products also, such as shampoo, conditioner, toothpaste, play doh, etc.

Please let us know how everything goes. Best wishes to Kathleen and your family!

Karen
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