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I Hope I Have Celiac's


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7 replies to this topic

#1 coco676

 
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Posted 01 December 2011 - 12:17 PM

I am beginning to think I may be the only one who WANTS to hear I have Celiac Disease.
For almost 2 years I have been struggling with worsening chronic wrist, shoulder, ribs, shoulder, back and hip pain. I have had MANY blood tests, countless x-rays and 2 MRIs. Prescription pain killers and regular stuff don't seem to make a difference. All my doctors (orthopedist, rheumatologist, physical therapist and chiropractor)have not reached a diagnosis... or atleast, haven't reached one they didn't reject a few weeks later. All my results tell my doctors I'm as healthy as a horse. My family can't understand why I'm not thrilled by this. It's nice to hear I don't have Lupus, but I'd also like to know what I do have and what I can do about it.
So my most recent test was a blood work for Celiac's. And considering Fibromyalgia is an option on the consideration table, I think I'd prefer to be diagnosed with Celiac's.

Has anyone else gone through similar emotions of just wanting a (any) diagnosis? I don't know anyone who (openly) has a chronic pain condition and I'd appreciate any shared thoughts.
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#2 eatmeat4good

 
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Posted 01 December 2011 - 01:45 PM

Yes, you might want to have a Celiac diagnosis...to avoid long years of pain and sitting on the couch with Fibromyalgia as a diagnosis.
I diagnosed myself with this site, or I would still be on all those meds and wondering what the hell was wrong with me and being unable to use my muscles.
Remember even if the tests don't come out positive...you can still be Celiac or Gluten Intolerant.
You can live as a Celiac if you want to. I do.

It's no relief to hear that you don't have Lupus if you are still as sick as someone with Lupus. So I completely understand. I was repeatedly tested for Lupus and in the end I was told it was Fibromyalgia and would not get better. 7 years later....I found these souls on Celiac.com and saved myself. Hope you can too.
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#3 Booghead

 
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Posted 01 December 2011 - 02:41 PM

Well before I was diagnosed I hoped it was Crohns. Everyone wants to get better and a diagnosis is a step in the right direction. Good Luck
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#4 beebs

 
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Posted 01 December 2011 - 10:47 PM

yeah - I know what you mean. Celiac is the only autoimmune disease that you can put completely (usually) into remission. I have other autoimmune stuff happening - and they still don't know why. They are talking hip dye injections next :o Before we realised it was gluten - my GI suspected something completely different that would require multiple operations and give me an almost 50% of dying of cancer before I turned 57!!! So needless to say - I was thrilled when it was celiac. I am not thrilled that I have other autoimmune stuff happening - I think it is a result of eating gluten as a celiac for so long and no-one ever thought to test me:(
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HLA DQ8, gluten-free since January 2011

#5 AVR1962

 
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Posted 01 December 2011 - 11:32 PM

Yes, infact when all my symptoms came to a head and docs knew something was wrong they first (after being told it was stress and age) doc had me reading on parathyroidism, my blood calcium was high, I have existing kidney stones and he thought that probably one of my parathyroid glands was bad. Simple right? Remove the gland and all was going to be okay again. I put a monkey wrench in there when I went gluten-free which made my over the top calcium levels go to bordering low. However, eventhough I didn't realize it at the time, it was a turning point and all the tests that were eliminated were put togethr like a puzzle and I had my diagnosis.

Calcium has stabilized, heart palpitations went away, blood pressure went back into normal range, what I thought were itchy moles on my shoulder disappeared, irritability gone. Just had to supplement to get everything else figured out but it is amazing what gluten can do to the body.
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#6 coco676

 
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Posted 02 December 2011 - 01:17 PM

Thanks everybody. It's nice to know that other people have gone through similar emotions with the whole diagnosis process. I didn't put it in my original text but yes I also have digestion problems. I do what it is like to eliminate something from your diet- when I was 12 my doctor put me on a dairy free diet because of my asthma. Although that was difficult to accept at first and I cheated at the beginning, eventually I saw the benefits. I have to admit it took until I was about 18 to really obey this dairy-free rule. Man I hope I'm smarter now and am able to stick to a gluten free diet if need be.

I did get my test results back today.

And they were negative for Celiacs. Whenever I hear that "oh you're still as healthy as a horse" I never know what to say. Thanking my doctors for still not knowing what is wrong with me or thanking them for telling me I appear healthy... so usually, I stay quiet.
Despite the results of my bloodwork my rheumatologist wants me to try the gluten free lifestyle for 3 months to see if things improve. So I'll play it like eatmeat4good at least for 3 months. It will be interesting. And as much as I like bread I like the idea of having a pain free day more. Going to Whole Foods tonight for new groceries.
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#7 Aly1

 
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Posted 13 December 2011 - 08:11 AM

I am right there with you. I had chronic pain for years that started with tendinitis in my wrists and culminated with severe bone pain and fatigue (I have numerous symptoms but those two are the biggest) that out me in a wheelchair. Every doc - even went to Mayo clinic - found nothing. It gets so depressing when you are seriously ill and everyone says you are fine.

A new doc ran a celiac panel on me 6 months ago and it came back negative. Nothing new there, tests always show nothing for me. BUT - went gluten free 3 months ago and am seeing major differences. Mostly in how I feel when I break my diet. I now feel truly horrible whenever I eat anything with gluten. I am watching to see how my overall health does but I do find myself wishing for a celiac diagnosis to legitimize a decade of suffering...
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#8 Bubba's Mom

 
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Posted 13 December 2011 - 03:26 PM

A diagnosis of Celiac is much better than many alternatives. You can control what you eat and get healed.
If your blood tests come back negative give gluten-free a try..for at least 3 months. Some issues take longer to resolve, but you should notice a difference by then?

I also recommend keeping a log of what you eat. It will help you figure out if there are other foods you are sensitive to. I found soy gave me achy bones. other people find reactions to other things as well.
You may get a delayed reaction with some foods. A log can be very useful.
Good luck! I hope this is the start to your pain free life.
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