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Post by 1234 on Jun 20, 2011 9:00:04 GMT -5
Jenaya, this is amazing.
Lur6, I would love cook book suggestions that you have--particularly if any focus on vegetarian meals! and only a medical professional would comment on a nice brain shape!
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Post by JC on Jun 20, 2011 9:01:00 GMT -5
The first thing I did when I got the call saying my antibody came back positive was run to my vitamins and health supplements and check to see if they were safe. Thank GOODNESS!!! They all say gluten free on them! I would die if I had to give up my precious ALC/ALA.
I'm glad my brain is nicely shaped because I have smashed it a few times... lol I was a little worried.
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lur6
Junior Member
Posts: 60
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Post by lur6 on Jun 20, 2011 10:55:30 GMT -5
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Post by JC on Jun 20, 2011 11:55:13 GMT -5
After doing some research, here are all the blood tests available for celiac. Of course, a stomach biopsy is in addition to this list:
Anti-endomysial antibody (EMA) Anti-reticulin antibody (ARA) Anti-gliadin antibody (AGA)
New test becoming more available: Human tTG dot-blot test
Genetic tests: HLA DQalpha 0501 HLA DQbeta 0201
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Post by KSA on Jun 20, 2011 12:10:47 GMT -5
Thank you so much Jenaya for thinking of me I am writting the tests down and maybe with this I can avoid a lap for my liver biopsy and go from these tests. I see my nutritionist tomorrow and am finding out if all the supplements I take are ok. I think they are but of course need to double check. The brain calicifications I have and seizures are put on the back burner so much bc of the other issues I have but migraines OMG a life without those would be wonderful. Thanks for looking out for me. I have docs that like to blow me off and say oh its ok you will be fine. They let me live like this and just bill my insurance company for no answers. If this is my answer to my absorbtion issues and a way to resolve these problems I owe you a mansion LOL cause I do believe with what they have charged me I pay a few mortgages for the docs around here.
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Post by pretty on Jun 20, 2011 14:36:07 GMT -5
Jenaya wow can you even believe all this stuff! I am still SO blown away that gluten can do anything like this to your brain! but your brain looks like it's still really smart lol... you have a nice cranium. lol thanks for posting this, it's so interesting and I think it will help people understand that we ARE affected by EVERY little thing we put into our mouths! wow.
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Post by JC on Jun 20, 2011 15:26:43 GMT -5
HAHA you like my cranium. That's great. LOL
Hey Keri I just want you to get better! I see you struggling so much to just feel normal. No need to say you owe me anything! You are crazy. Just get better! Or else I may just fly down there and slap a few doctors in the face!
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Post by KSA on Jun 20, 2011 16:27:13 GMT -5
Some of them need a Jenaya slap lol. I am discussing all of this with my nutritionist in the morning. Its such a pain to get all the docs on the same page. My neurologist is convinced by botox and I can't get that out of his head. Infact he says oh try it a few more times before you give up. The headaches didn't stop and the neurotin I take even at a low dose hurts my right side when I take it. I track everything I feel and none listen. My sis said the neurologist should of ran blood work when the neurotin got increased since it is a anticonvulsant and can cause liver issues. They let me keep living like this and blame my galbladder surgery for the right pain most of the time I shake my head like ok you mean the same spot from before the galbladder was taken...no one listens so I have stopped talking. The brain stuff was blown off like everyone has calsifications and they are fine. My iron is a non issue too they want to try for another infusion like the first time didn't put me in shock. Its one mess up with another. If I didn't have you researching Jenaya I wouldn't know where to turn. A girl needs to eat something other than supplements and if it means gluten free I can do that. I doubt aby doc here will help me to be honest that is why I went to nyc for the endo I would pay a lot of money for a real answer.
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Post by KSA on Jun 20, 2011 16:35:44 GMT -5
A big virtual hug to you honey! Thank you over and over I appreciate every ounce of research you do for me and the rest of us!
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Post by pretty on Jun 20, 2011 16:40:45 GMT -5
yep jenaya you are a wonderful source of info AND inspiration. don't know what we'd do without ya!
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Post by JC on Jun 20, 2011 17:06:21 GMT -5
Aww you girls are too much! I like doing this stuff. And more importantly, I care about you guys. I just hope it all leads to some relief for you. It's not fair to have to be told to "just deal with it" when there's an answer out there.
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Post by Karen on Jun 20, 2011 17:28:02 GMT -5
Yeah, Jenaya, you're quite a slueth!
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Post by KSA on Jun 21, 2011 0:59:09 GMT -5
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Post by JC on Jun 21, 2011 5:27:34 GMT -5
Wow the link you gave is the part that talks about the brain calcifications and seizures. Sounds familiar Keri!!!! ;D
I was reading the part about the skin rashes, I ALWAYS have some rash somewhere. I am itching non stop like crazy and it can get quite awkward when I'm scratching all the time like an infested person with lice. The way this book describes the rash fits me perfectly. I get it in my hair, on my legs and trunk. All these damn years of these damn rashes! Son of a bitch!
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Post by hannahjex on Jun 21, 2011 9:57:16 GMT -5
Whoa, I missed all this!! I had no idea gluten allergy/coeliac could affect your brain!!! WOW. What a great neurologist! I imagine that for most of them, a food allergy is the LAST thing they'd look for because of white matter lesions. Gosh. I really hope that pretty brain of yours feels better now that you know the culprit. Here's to no more migraines! And thanks for posting all this info. Being on this site has taught me so much, and not just about endo!
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