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NYCisTHEplaceTObe

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NYCisTHEplaceTObe Rookie
NYCisTHEplaceTObe
Posted

hi everyone!

i just wanted to ask all you guys about some of the issues I have been having. I have been sick with these symptoms for about 15 years. I am 20 now and i was diagnosed with epilepsy around age 5 or 6. shortly after that, now this is as far back as i can remember, i have never felt good. i have always had major nausea, constipation or D, bloating, fatigue, brain fog, depression in starting around 13,no appetite or BIG appetite, I also have always had eczema and when i was 12-13 i was diagnosed with mono, which made me feel even worse. it has really gotten bad in the last 6 months. I lot A LOT of weight over the summer which has never really happened before. a few years ago it got really bad as well and i went to see a million doctors and everyone wrote me off and told me it was in my head. i went to my neurologist in july and he told me to go see my GP, which i did a couple weeks later. He ran a ton of bloodwork, all which i have had done before, and they came back normal as always. so he referred my to a GI , which i was happy about, since this was one doctor we had never seen before. He first mentioned IBS to me but said he wouldn't disgnose that unless he could rule everything else out first. so he did a bunch of bloodwork and he put me in for an endoscopy. he did mention celiac before the endoscopy and i did research on it and it sounded EXACTLY like me. so i wake up from the endoscopy and he says oh i just looked in you stomach and there is some inflammation, that is probably what is making you sick.

i was just a little upset because he didn't look for anything! so i went for a follow up a few weeks later and he had prescribed prevacid but it didn't do anything. so he just looked at me and said, 'well i'm not sure what is wrong with you'. ok this was a little upsetting but this is a first for me b/c no doctor has ever admitted that they didn't know and he didn't tell me i was making it up. unfortunetly he didn't see the point in doing further testing for celiac or anything else. he said to go back to my GP and see what he thinks.

so i am a little frustrated. any advice you can give me? i just want an answer at this point.

sorry this is so long!

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jknnej Collaborator
jknnej
Posted

It sounds to me like you should be tested for celiac disease. You certainly have some of the symptoms. It sounds like your dr. might not be the best dr. for you...maybe you can get another one who actually knows about celiac disease. If he hasnt' tested you and you have all those symtpoms than I don't think he knows much about celiac disease.

jenvan Collaborator
jenvan
Posted

you should absolutely get tested for celiac!!! you have many of the common symptoms. please get tested--the blood test is really simple and can be ordered by most docs. if you have it, your life could be so much better just by going gluten-free. there are others with epilepsy brought on by celiac. do you know what blood test to ask for? go here to get a guide: Open Original Shared Link keep us updated on what you find! good luck to you...

FaithInScienceToo Contributor
FaithInScienceToo
Posted

WOW...

Bad GI doc IF he never bothered to run a simple "celiac blood panel" ...

IF you never got the tests...

Get yourself back to your FP and tell them you MUST have another blood draw, and it MUST be sent to a lab that can test you for celiac disease, via 'a celiac blood panel' - this includes these 4 bloods tests (Serologic Tests):

AGA (IgA anti-gliadin antibodies)

AGG (IgG anti-gliadin antibodies)

AEA (Immunoglobulin A anti-endomysium antibodies)

tTGA (IgA anti-tissue transglutaminase)

Typically, the last 2 will NOT be run by the lab if your antibody levels to gliadin do not fall within the 'positive range' ...in my case, I got my blood testing done when I was 53 days POST going gluten-free, and one of my anti-body levels had already fallen to 29. Since 30 was considered to be 'positive' at that lab, they neglected to run the last 2 tests.

Anway....

If you find out that you have positive levels for antibodies to gliadin, tell both your FP and GI doc, and ask for a diagnosis of celiac disease WITHOUT having to get another endoscopy...since they already 'saw' inflammation.

If they will not agree, and you do not 'need' an official diagnosis of celiac disease, just go gluten-free on your own...if you improve significantly within 2 weeks to 2 months or so, you'll have at least part of your answer...perhaps the whole answer.

You can also get tested via "enterolab" - they use a single stool sample. You can find out if you have an autoimmune reaction already...meaning that you must stop all gluten.

And, via their cheek cell sample test, you can find out if you carry one of the genes that pre-disposes to celiac disease.

See: Open Original Shared Link

In addition, you can even had another blood test (simple finger prick test) done via York Labs, to find out if you are having 'problems with' other foods.

It put my mind at ease to find out that I only had problems with gluten and casein.

See: Open Original Shared Link

Of course, these tests are not cheap, but the knowledge is worth the price....

Best wishes,

Gina

nettiebeads Apprentice
nettiebeads
Posted

Sorry you are having such trouble getting a definitive answer. If it helps, you are describing the major "common" symptoms of celiac disease. Celiac has about 200 symptoms that can vary greatly from person to person. It is also one of the greatest mimickers out of all of the autoimmune disorders. And it is not as rare as once thought, just more drs (obviously not the ones you've been to) are testing for it. It is surmised that one in 133 may have celiac disease, but only 1 in about 4,000 are accurately diagnosed. Hope you get the right dx soon.

FaithInScienceToo Contributor
FaithInScienceToo
Posted

I just found a"Fact Sheet" (from March '05) on what blood tests are typically being used now:

Open Original Shared Link

Hope it helps -

Gina

NYCisTHEplaceTObe Rookie
NYCisTHEplaceTObe
Posted
  • Author

you guys are so great! thanks for all the info! we are planning on calling my GP next week and get an appt and talk with him again. thanks again!

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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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