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Hope This Is The Right Test

jodster

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jodster Rookie
jodster
Posted

First of all, I want to thank all of you for your words of encouragement and advice. I have spent 6 montsh positive I had MS, although the MRI's have been negative. Not once did I ever think that this could be celiac related until I read it somewherre. And then it was sort of like a hope, I know it's awful to wish for it, but after thinking it must be MS, and then just wondering if I'm crazy...your stories really helped. I ahve to admit, i had teh best weekend in a long time because of you. If only teh gastrointeroligist that did my biopsy 10 years ago hadnt put me on the diet for 5 montsh prior, then maybe I wouldnt be where I am today!!! But it all came back(previously dx'd at age of 1, then taken back) after my first pregnancy. Is that common, that it sort of comes back after pregnancy or trauma(I had both(???? And can it come and go like it does for me? Anyhow, I could go on forever and ever. My initial question is ....I had my doctor order the tTG blood test, because I was under teh impression that was teh best blood test for diagnostic purposes. Is that correct, because when I went to the lab, they said there is actualy a whole seris that I could have got, but instead my doctor only picked the one. Is it accurate, or did I just waste $60.00???? Anyhow, I hope that you are all feeling well and hope to chat soon. jodster

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chrissy Collaborator
chrissy
Posted

celiac disease does not come and go---but the symptoms can wax and wane over the years. and, becuase the symptoms often disappear through the teen years, it used to be thought that celiac could be outgrown. how were you diagnosed when you were a year old?

christine

CMCM Rising Star
CMCM
Posted
First of all, I want to thank all of you for your words of encouragement and advice. I have spent 6 montsh positive I had MS, although the MRI's have been negative. Not once did I ever think that this could be celiac related until I read it somewherre. And then it was sort of like a hope, I know it's awful to wish for it, but after thinking it must be MS, and then just wondering if I'm crazy...your stories really helped. I ahve to admit, i had teh best weekend in a long time because of you. If only teh gastrointeroligist that did my biopsy 10 years ago hadnt put me on the diet for 5 montsh prior, then maybe I wouldnt be where I am today!!! But it all came back(previously dx'd at age of 1, then taken back) after my first pregnancy. Is that common, that it sort of comes back after pregnancy or trauma(I had both(???? And can it come and go like it does for me? Anyhow, I could go on forever and ever. My initial question is ....I had my doctor order the tTG blood test, because I was under teh impression that was teh best blood test for diagnostic purposes. Is that correct, because when I went to the lab, they said there is actualy a whole seris that I could have got, but instead my doctor only picked the one. Is it accurate, or did I just waste $60.00???? Anyhow, I hope that you are all feeling well and hope to chat soon. jodster

You haven't really said much about your symptoms....but assuming you have zeroed in on celiac as a possibiility, check it out yourself. I'd suggest going directly to Enterolab and order your own test panel, including the gene test. That will tell you a lot that you need to know starting out, it's affordable ($369 for the full panel), and you can decide from the results whether or not to pursue other possible problems with your doctor.

As for symptoms....yes, they can come and go. Many kids are diagnosed with celiac, they later seem to get better, and then it all resurfaces as adults. I had trouble starting with BIRTH, then for most of my childhood-teens-20's I don't recall any particular problem. Then I started developing "sensitive digestion" and a variety of other things about 25 years ago.....asthma, migraines, muscle aches, high BP. Sometimes it worse worse than others. I just lived with it and for some things got other diagnoses from clueless doctors, never suspecting celiac as a cause for all their unrelated symptoms even though my mom was diagnosed with celiac when I was a teen. I didn't have her classic symptoms, so I never considered it. But the last couple of years, it got worse and worse and I finally started looking for answers....I ended up here, got the Enterolab test, and got all my answers. I'm 56 now, so you can see this can drag on for a LOONNNNG time without a person necessarily knowing the source of his/her problems! If your doctor isn't knowledgeable, you will get a lengthy and expensive run-around!

My advice to you is don't waste more time.....do the Enterolab test to inform yourself---you'd certainly waste a lot more money running from doctor to doctor to test to test trying to find out the exact same (or perhaps even LESS) information than you'd get from the Enterolab test.

jodster Rookie
jodster
Posted
  • Author

Hello again. I was DX'd by our family Ped based on symptoms of swollen belly, frothy stools, etc and the disappearance of all symptoms when gluten was taken out of system. My Ped had celiac as well. My parents believe there was a stool test of some sort done, but this was 33 years ago, and I cant find any records back that far, my Ped has passed away as of 10 years ago. When i look back now, after my first pregnancy the stomach pains and gas started and this past summer i went thru 3 week sof unbelievable heartburn, burning, upset stomach, you name it, my GP prescribed the strongest thing you can get for it, and it did nothing. i remeber my pharmacist saying that there had to be something else going on if those pills weren't working. Then a month later started all the MS like type symptoms, pain in left eye, wax and wane pins needles, shock sensations, percieved weakness, fatigue, sensitibity to glare, etctec. But after 2 MRI's spaced 2 yaers apart, the neuro tells me MS is very very unlikely. That is when the whole celiac thing hit me(a fact I didnt mention to teh neuro due to teh negative biopsy done 5 months after gluten free diet) Anyhow, I hoe the tTg will be adequate. There is a full panel i know of now thanks to you guys and I will ask for it if this comes back negative. The comments made about doctors(some) are quite true as mine has told me no celiac for years even with all my symptoms!!! He said if i had celiac i'd have a huge belly andconstant diarrhea, etcetc. I dont think he is even aware of teh neurological complications that can set in if not following diet(he is a bout 70 lol) Well I really hope that I finally get some answers.

I must ask.......have any of you had severe nosebleeds before being DX's. As I mentioned in my intro post. I had 2 life threatening episodes requiring transfusions thru both pregnancies and the docs still have no clues as to what they were caused by. I have read that nosebleeds can be a symptoms of celiac, but do they mean that type, or just minor ones??? Thanks guys you are awesome!!!!!! HUGGSS jodster

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