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Frustrated - Advice Please

Finlay

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Finlay Newbie
Finlay
Posted

Hi all,

Here's a brief description of symptoms I've been experiencing:

Occasional diareha but a constant need to empty my bowels. When I do empty my bowels the smell is really bad.

I am constantly flatulent.

I often have a foggy feeling in my mind and I can't think very straight at times.

I'm constantly hungry.

My muscles in my legs/arms often twitch or spasm. It doesn't hurt but its kind of annoying.

I don't sleep very well.

I've had some or all of these symptoms on and off for around 2 years.

I recently went to the doctor and they took a blood test for Graves but this came back negative. I suggested Celiacs disease to my doctor but she said that I would have shown up as anaemic when they did the blood test. Is this true - can Celiacs be ruled out with a blood test. I don't feel very confident with what I'm being told.

I feel as though I could have Celiacs and I'm really frustrated. Do people think I should seek a 2nd opinion. Am I better to go for an alergy test or to see a different doctor?

Thanks

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tarnalberry Community Regular
tarnalberry
Posted

Celiac can almost be ruled out by a blood test, but not an iron count. There are specific blood tests for celiac disease, but there are some false negatives amongst those. (And a lot more that are incorrectly read...) You might consider asking for the full celiac blood panel, or finding a doctor better suited for addressing your problems. Do continue doing some research, however, as your symptoms _could_ be consistent with celiac (though that's no guarantee).

llj012564 Newbie
llj012564
Posted

If this has been going on for 2 yeras and your Dr hasnt made any attempt to get to root of the problem I would seek another Dr maybe try a GI Dr. Celiacs can present in different way in different people. My Dr missed it in me in the begining because I wasnt the typical Celiac .... I was very overweight... it wasnt untill I got so sick and started losing 5 pounds a week that she finally figured it out. So what im saying is dont let them waste your time, if you feel your Dr isnt working with you then find someone who will. Just an added note my iron test was alway good even when I was at my worst and the blood test for Celiacs came back positive so like i said its different for everyone.

mommida Enthusiast
mommida
Posted

After reading most of these post, if I had to do this over again for testing, I would test through enterolab. www.enterolab.com Send the test in and try the gluten free diet while I waited for the results. If I felt that much better off gluten then I wouldn't really care what the results were except for validation.

Genetic testing is newer technology that is hopefully getting better every day. The rest of the testing is obviously missing a lot of diagnoses, and frustrating patients with doctors inexperience.

If you feel there is any other problems going on, by all means continue with specialist.

Laura

Teeny Newbie
Teeny
Posted

Finlay -

I definately agree with mommida! Enterolabs is the way to go. That is how I finally got results after 15 years. I am severe anemic, but that, in my case, actually hindered my diagnosis becuase the first doctor (out of four) that I saw was too hung up on that to look at anything else. He kept wanting to label it "female problems" ... dumped him and moved on. Next guy thought I had IBS and put me on a high-fiber, gluten laden diet that really reaked havoc on my body... dumped him and moved on. The third doc (my current doc who is awesome) sent me to enterolabs were I finally got results. My son is also celiac (and has autism) and my duaghters results are not in yet.

Keep pushing until you get results and feel better.

kvogt Rookie
kvogt
Posted

Finlay,

You sound just like me except for the twitching. I suggest you go gluten-free for 1 month and the answer will be obvious. You should see the majority of the bowel problems disapate.

Seosamh Newbie
Seosamh
Posted

Finlay,

I strongly agree with KVoght and others who've posted. I was not diagnosed as celiac for 30 years! I tended to avoid things like bread but was sick always with nearly the same symptoms that you describe.

I went gluten-free, and could notice the difference in weeks. I'd say, let the MDs scratch their heads (they can do that for a long, long time)--go ahead and figure out what will make you feel better--try to go gluten-free for a few weeks and see what happens.

good luck!

Seosamh

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gypsyfey Newbie
gypsyfey
Posted

Even my digestive specialist said that the best way ( other than a small bowel biopsy) to tell if I was celiac, was to go gluten free for awhile. I would give it about six months. That allows your body time to recuperate. If you go gluten-free for six months and your still having the symptoms, you will no that you need to keep looking for answers.

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