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I Hope I Have Celiac's
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8 posts in this topic

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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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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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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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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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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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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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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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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    • Mnoosh,    Can you give us a link to the article you read about the increased risk after being diagnosed and maintaining a strict gluten-free diet??       IMO,   You are over reacting to a misprint or most likely a misread article.
    • Yes!  With dairy, celiacs can often have a temorary lactose intolerance due to damaged intestinal villi (where the enzymes normally are released to digest lactose).  Of course you could be naturally lactose intolerant based on race or age.  It is best to stick to a whole foods diet while you are healing.  Really, is ice cream or potato chips going to provide you with nutritional value?  Stick with naturally gluten free foods like meat, fish, fats,  veggies (even those with carbs like sweet potatoes or winter squash) and fruit.  Avoid that processed junk as you may react to the additives right now.  Later, you can add back in dairy (test) and other foods you miss and crave.   Good luck!  
    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
    • Well....one common symptom that most celiacs have when they are diagnosed (or undiagnosed) is anxiety.  So, there is a risk of cancers, but science has demonstrated that that risk goes down on a gluten free diet (if you have celiac disease).  In goes down to the same risk as those without celiac disease.   I kind of was a basket case.  I drive my family a bit crazy because I was anxious.  I felt a bit stupid too.  I guess I had a little brain fog going on too.  All that resolved after I healed. Welcome to the fourum.  Read our Newbie 101 thread under "Coping" (pinned at the top of the page) and learn about hidden sources of gluten and cross contamination.  I think most of us do not worry about cancer. We mourn the freedom to eat anything anywhere!   I did not have swollen lymph nodes, but I am sure others have and they did not have cancer.  Hopefully, they will chime in and set your mind at ease.  If not, you can search for "lymph nodes" at the top of the page (little magnifying glass).  There are lots of members with the same issue!  
    • I was recently diagnosed as having celiac and to be honest the part I'm having the most trouble with isn't the change in food or lifestyle. I'm really upset about what I've read about the risk of cancer increasing with celiac disease. I think this is playing into my fears because I currently have lymph nodes all over my body-my Doctor says they are not considered swollen or concerning, but I don't usually feel nodes. The lymph nodes and horrible diarrhea for the last 3 weeks were what got me into the the doctor for lab work. My blood work came great so I'm wondering if anyone else experienced lymph nodes reacting when they found out they were celiac? Also how do you deal with anxiety surrounding the increased risk of cancer? Thanks!
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