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No Diagnosis For Me

KAG

By KAG
in Coping with Celiac Disease

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KAG Rookie
KAG
Posted

In brief, problems with food started around pregnancy (also on birth control pills for many many years), being in Mexico and being on three courses of antibotics within a very short period of time. Dealing with this for the last 12 years. Low thyroid diagnosis helped. Dealing with candida helped. Organic, natural whole food helped. Juicing vegetables instead of supplements helped. Through process of elimination found gluten to be a problem, and dairy to be a problem. At one time I was very sick with low energy and had to cut back on working. Had every type of digestive problem, and a lot of pain. Sticking to whole foods helped so much with the pain. Sometimes when I read posts I feel guilty because if I were to accidentally gluten myself it's more of a gradual and cumulative reaction that I have. But then I remember all the pain I was in years ago. All this makes me feel like I have more of an intolerance than actual celiac. I also wonder if the candida caused the problems with gluten. Which came first? It did take YEARS for my intestines to heal though. I can now tolerate other grains besides gluten and gluten free replacement products don't make me sick.

Anyway, I went back to the doctor to test for celiac and went on gluten for three weeks. I know it was not long enough, but it was long enough for me to know there is a problem. (I had to find a new doctor because polyps were found in my large intestine years ago and I have to have a colonoscopy done every so often.) I was completely egg and dairy free so that I know there was no reactions from these.

My blood tests were negative and my biopsy came back negative. The doctor found inflammation in my stomach but I only started having acid problems right before the endoscopy and since I went back to gluten free I am fine.

So I guess I'll call myself gluten intolerant. I know there has been a lot of discussion about celiac verses gluten intolerance. Gluten does cause my body to break down.

I may or may not have celiac, but I still....

have problems eating out.

have to deal with insensitive relatives who will not respect my wishes as to how I eat.

have to spend a lot more time planning and cooking meals.

have to think about how long I will be out of the house and what I may need for food to take with.

have to spend time dealing with bathroom issues.

have to deal with all the stupid, insensitive questions.

have to spend a fortune for chocolate chip cookies.

Just venting. I was thinking about using enterolab for justification, but I don't need to spend the money. I cannot eat gluten AND I CHOOSE TO EAT AND LIVE A HEALTHY LIFESTYLE.

To all of you dealing with wondering how long the process will take to heal, I just want to say that it will come. It just takes time. And thank you for all of you who post and listen and respond.

THANKS

Kim

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gfgypsyqueen Enthusiast
gfgypsyqueen
Posted

Hi Kim,

Sorry to hear you are having such a hard time getting a diagnosis. Sounds like you have determined the problem to be gluten, so stick around here. The label of Celiacs vs gluten sensitive or intolerant shouldn't matter to anyone but a doctor, IMO. The fact is gluten causes you problems. I have a positive biopsy diagnosis that took years of me being terribly sick and removial of a gallbladder and a few other things to get. Still, I get the third degree from new doctors...they can't belive someone actually has this crazy disease. My daughter is 2. She has had a negaitive blood test and inconclusive biopsy. The dr yelled at me for taking her off gluten. After a few months of no results his way, I took her off gluten again. I can already see changes and she already had her first accidental challenge. Yup, she's a celiac! It will take me a lot of work to get the necessary paperwork from the doctors for the school system, but I have no doubt she is inthe middle of a gluten reaction. I tell people I have a food allergy. People understand that concept. If they ask questions I clarify that it is a genetic disease. In the end, we all get violently ill from gluten, we all have problems with friends and family, and we find support here because noone gets this disease unless you live it.

Hope you are feeling well.

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