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Kamma

Testing, New Beginnings And Hope

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Morning everyone. In a few hours I'm going to be walking into a lab and having some blood pulled for the TTG test. I'm excited and ecstatic because regardless of the testiing, today was the last day that I will ever eat gluten.

I haven't posted much here being a bit shy but for the last three months I've been reading like crazy any and all posts that bore a remote resemblance to what I was going through. After three years of symptoms that started with extreme vertigo with an onset and gradual increase in seizure like episodes, hair falling out, extreme fatigue, gas/bloating, swelling of face, hands, legs, which started me on the odyssey of many specialists who all tentatively diagnosed me according to their specialties. None of the diagnoses were a perfect fit and I felt extremely reluctant to take drugs for a condition that I might or might not have. Special mention goes to the family doctor who brushed aside protein in the urine, hair falling out, swelling of the body, stomach pains with the words, "they could be the cause of anything", and never doing the job of what I always thought doctors should do: investigate. But he very much wanted to give me testosterone supplements (my testosterone levels were very low in addition to other low levels of vitamins, minerals, etcetera) to increase my libido so I could have a fulfilling sexual life with my partner. I didn't take him up on the offer and that's about when I stopped going to him.

All of this experience has just left me very frightened, feeling alone and hopeless. I never, ever was a doctor going kind of person before all this and these medical encounters have further cemented my position of being distrustful of the quality of professionalism that's offered. In my province, there is a huge shortage of doctors and I've learned that the doctors that take new patients are the inept ones.

Anyway, last summer I readjusted my head and thought real hard about what known diseases run in my family (brother has MS and niece was diagnosed with celiac twenty years ago). The neurologist that I initially had contact with because of the vertigo / balance problems who is a good man, had ordered an MRI and ruled out the MS, so that left celiac. I stumbled upon this site and started reading, reading, reading. I decided to try elimination of the gluten and within weeks I was actually waking up feeling like I had rested, had energy, balance was stable, vertigo was lessened, weepies (crying at the drop of a hat) were gone. I felt great! More than that, hope began to creep in that maybe my life wasn't over.

I went back to the neurologist and asked to be tested for celiac. He's a good guy and if I didn't have him, I would be utterly lost. He agreed and so Ive been eating bread for the last seven weeks. Until today. Today is liberation day.

At this point, I don't care what the tests results are. Ive read enough to understand that I could be negative since the ones who suffer from the neurological aspect of celiac are harder to diagnose through the regular blood tests.

Today, I am hopeful. I have been isolated for two years, no longer being able to work and living in a city that I had moved to shortly before I got sick. Very much alone and very much broke!!! :) I went from being very independent to housebound / bed bound with a partner whose forte is not understanding.

and...

I'm writing this to say thank you to you all who share your trials, tribulations and experiences on here. You have brought warmth to my heart, shone a light on possible paths to take and lessened my aloneness. You're all heroes and heroines to me.

Thank you!

Kamma

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Posts like yours are one of the reasons I have stuck around here for so long. We have a lot in common. Boy can I identify with the 'diagnosing based on their specialties'!!!! Many of us have been put through the ringer by doctors that only look at the symptoms that fit their specialty rather than taking in the whole picture. Ask any questions you need to. You are not alone we are here for you. I hope you are feeling better soon.

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