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lucky28

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lucky28 Explorer
lucky28
Posted

HI, I just had another piece of the puzzle put into place, I had a chat with someone who new my mother before she passed away-my mom was great but headstrong--example: she was diagnosed with type 1 diabetes at 40 something but refused to believe the diagnosis and continually ate wrong etc etc. Well this friend said that my mom told her she never drank beer (etc, etc) because she was allergic to wheat!!!!!!! since i discovered celiac disease and did ALOT of research I had almost diagnosed her as having celiac disease from what i could remember of her symptoms-- anemia, b-12 deficiency, increasingly low birthweights, bloaty abdomen, gas, intestinal distress-I could go on-It is pretty sad that she didn't know/refused to find out more about celiac disease-- I go to my dr. monday for a consultation (my new insurance kicks in tomorrow) so I have more ammo-other than my grandfather and 2 cousins and my symptoms to tell him about-Anyway I have been back on gluten since august after only 2-3 months gluten-free(barring accidents). so I'm pretty sure my levels are up there-

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Claire Collaborator
Claire
Posted
I have been back on gluten since august after only 2-3 months gluten-free(barring accidents). so I'm pretty sure my levels are up there-

<{POST_SNAPBACK}>

Hi - I guess you went 'back on gluten' so you could be tested. This may work for you but it is a tough way to go to get test results. The damage - both seen and unseen - that is done to the body by just a grain of gluten is so significant. Do get back gluten-free just as quickly as possible. I know whereof I speak - have gluten induced neurological damage that is not reversible.

Enterolab does a stool sample test for celiac. Kimball labs does a mouth swab test for genetic testing. This one won't tell you for certain that you have celiac but it will tell if it is possible for you to have it. No genetic marker - no celiac disease. Blood tests are fluky. False negatives seem to abound, In some cases I think lab personel are unfamiliar with the tests and do not read them properly. I am told that you have to be on gluten at least six months prior to a test to have a shot at a true diagnosis. My neurologist said no way would he suggest introducing a gluten challenge - too risky when I already have signigicant damage done. Good luck, get that test and get off the stuff as soon as you can. :) Claire

lucky28 Explorer
lucky28
Posted
  • Author
get that test and get off the stuff as soon as you can.  :)  Claire

<{POST_SNAPBACK}>

That's the plan, I'm tired of being tired, bloated, gassy etc etc. I look like I'm 3 months pregnant and have no enegy.

I'm fairly certain I have celiac disease but I over analyze everything and just want to get the testing done so I know for certain, I'm asking my gp to send me for a full celiac panel, as well as to a dermatologist to biopsy a rash I have. I'm pretty sure the lab at the hospital here is familiar with celiac disease, I have just started working there and one doctor was quick to suggest possible celiac disease for her patient, if my doc won't order the tests for me, you know who I'll choose as my new gp!

Thanks for the advise--

I'll be gluten-free asap!! :D

taweavmo3 Enthusiast
taweavmo3
Posted

Claire......could you elaborate a bit on gluten induced neurological damage? I'm really interested in this, since my 3 1/2 year old daughter seems to have some neuro problems as well. She is significantly behind (18mos delay), but there seems to be something else going on too. It's as if her brain processes things differently. I'm not entirely confident that this is something that will just catch up in time.

Thanks for any info you may have! I've had her evaluated by the school, so she will start therapy soon. But, if there is any info out there about neurological damage, it will give me some ammo to take to the ped so we can see a pedi neurologist in the future.

taweavmo3 Enthusiast
taweavmo3
Posted

Nevermind Claire (love the name btw, it's my dd middle name), I read more about it in the other posts about ataxia. Very interesting stuff, thanks. Seems as if my dd has something different from that....but I have no doubt gluten halted/altered her brain development. Ugh, who would have thought that the touted "required" and "healthy" grain could wreak such havoc in the brain? Thanks for all your info.....good luck to you!

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