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Possible Misdiagnosis?

stephtara

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stephtara Newbie
stephtara
Posted

Hi everyone - My story is kind of long but I'll keep it as short as I can!

For as long as I can remember I've had serious, mostly bowel related, issues - diarrhea, abdominal cramps, joint pain, gas, nausea. Nine years ago during a trip overseas I had very serious bowel symptoms, pain, exhaustion and erethema nodosum (red itchy painful lumps on my shins). The doctors overseas were totally confused and sent me home to Canada. When I arrived home I spent TWO years going from doctor to doctor being "diagnosed" with all sorts of various ailments (Sarcoidosis, Chronic Fatigue Syndrome, Fibromyalgia). FINALLY after a colonoscopy I was diagnosed with Ulcerative Colitis. Over the following years my symptoms waxed and waned in spite of medication. My symptoms were quite bad for the three years leading up to the birth of my daughter but I couldn't take any medications at the time as I was going through infertility treatment. Needless to say, I just suffered through all the pain. After my daughter was born I got worse again. Horrible diarrhea, vomiting, painful cramps, sore joints, mouth ulcers, exhuastion, depression and anxiety. To say the least, the last year has been quite an ordeal!

Recently I found a new family doctor who I really like and - for the first time ever - seems sympathetic to my plight and is not brushing off my symptoms as the ramblings of a mad woman. I told him about my Ulcerative Colitis diagnosis and he immediately asked me if I had ever been tested for Celiac disease. Here's the strange thing - I'm originally Irish and so is my doctor - Apparantly it is much more common there than here in Canada. Also, my first cousin has Celiac Disease. Anyway, he said that I could have misdiagnosed with UC when really the damage to my intestines could have been caused by Celiac. So, off I went to the lab for blood tests. My IgG was negative but my IgA was 25. The doctor told me that is a "slightly positive" result. Not sure what that really means? I went for an antiendomysial antibody test yesterday and am currently awaiting the results.

Is it possible to be misdiagnosed with something instead of Celiac? It sort of sounds like Celiac but I'm just not sure anymore. I feel like I've been messed around by doctors for so long I just don't know what to believe anymore. The only thing I know is that I want to feel healthy again!

Any advice, insight would be appreciated.

Thanks for your time!

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plantime Contributor
plantime
Posted

Celiac disease is very often misdiagnosed as other bowel diseases. Try the diet for 6 weeks, see how you feel. That will tell you a lot. You could ask your doctor for an endoscopy with biopsies of the small intestine.

rinne Apprentice
rinne
Posted

I think you might find the diet an accurate diagnostic tool if you can follow it exactly. It is a steep learning curve and takes time but given your symptoms it is entirely possible that gluten is causing your problems.

I have been trying to find out what is wrong with me for over a year now and am currently waiting for an endoscopy and colonoscopy at the end of September, I saw the specialist in early May, that and the fact that my mother has spent 30 years trying to find out what is wrong with her, doesn't give me much confidence in our medical system.

I went gluten free in early May and dairy free in June, although I have had accidental glutenings and lapses on the dairy front, and I am now just beginning to feel better. I also have arthritis which I believe is related to the Celiac through bad bacteria in the gut. I chose to go gluten free because I have known for years that bread is a problem for me and generally I avoided it but until I found this site I didn't understand what gluten free meant.

Welcome, this is a great site, lots of support and information.

stephtara Newbie
stephtara
Posted
  • Author

Thanks for the words of advice. I should find out the results of my latest test next week, although hopefully it will be something more definitive than "IgA 25 is a weak positive". Um.... Great, thanks. Regardless, I think it might be worth trying the diet for 6 weeks just to see. I'm pretty much willing to try anything to feel better at this point. I have a one-year-old daughter and spending hours a day on the toilet and feeling too exhausted to pick her up is just not acceptable.

Thanks again!

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