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I Know I Have This...
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2 posts in this topic

Hello All, new here. I will try to keep this as short and to the point as I can... but I have a lot of things to say and vent about.

I am 37 and the mother of a child with PKU (in inborn error of metabolism, cannot use excess amino acid in protein).

As a child I had bad headaches, diarrhea, mood swings etc. The doctors blamed it on my parents divorce. Then they said a mild case of scoliosis...

In my teens and 20's I had times of pain, body pain, but not muscle pain... Again doctors said stress. I have always, since the time I began had monster pain with my periods. I even passed out a couple of times with them. They said they would get better after I had a child, they did not, they got worse. In the meantime my over all body pain got worse, diarrhea, stomach cramps, tingling you name it.

I went thought Mayo Clinic, mostly for female trouble but also for the pain I was in. I had been in several car wrecks etc. I went from specialist to specialist, they could not find anything wrong with me, said it was from old injuries. They suggested cortisone shots for when I really needed them. I said No thanks.

I have been to countless doctors. No one can find out what is wrong with me. Some of them pat me on the head and say stress, others give me antidepressants, which made my skin crawl and depressed me to the point of curling into a fetal postition and staring at walls.

Some people tell me its Fibromyalgia, it isnt. Then someone told me it was candidasis. I went on a diet, no flour and no other things either. The symptoms did not fit but I did it anyway and within several days, I felt like a new person. But this yeast diet is very very restrictive and I got too thin on it so I switched to low carb, avoiding flour etc yet. Then they came out with low carb breads etc and I began to put them back into my diet and within 2 weeks was back to the way I had been. Diarrhea, stomach pain, tingling, numbness, heart jumping around, nearly incapacitated with pain, bone pain, not muscle. The only symptom I dont have is a rash, but I had one last year, all over my body. The doctor said infection....

When I eat fat, I get sick, when I drink a couple of beers, I get very very sick, feels like the worse case of flu I have ever had.

A friend said to me, have you been tested for celiac? I had heard of people who could not have gluten thought my daughters disease... she said her cousin had it and she had same symptoms I do. My aunt sent me an article on it. I went online and really really researched it and a light went on in me.

I have absolutely no faith in doctors. I know it can take up to 11 years to get this diagnoses and I thought why even bother? I have been on a gluten free diet for 4 days now and I feel better. A lot better. Not completely well but better than I have since I put flour back in my diet. ANd every day I get a little bit better. And now that I am not eating any gluten, will the testing even work? Or will it, like every other thing they have done to me come up normal and negative? Do I need to be tested? How do you get a doctor to listen to you? I am a forceful person... but they have never, not once helped me. To tell you the truth, I loathe doctors....

I saw the list of tests... I am going to copy it and try to get the courage to insist that my latest doctor do them. But if I am gluten free, will they still be able to tell me yes you have this? Because I am as certain as I can be that I do. And if I continue to feel better, do I really need a doc tell me yes you do have it?

If anyone can help me, I would very much appreciate it. I probably dont have to tell any of you what this does to your mind and spirit. To be in pain, afraid to eat because you may have an attack and have to be sick in a public restroom, not being able to do the things you want because you hurt so badly. I have withdrawn very far into myself and felt hopeless for so long...

Thank you for listening.

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Four days gluten free won't skew the tests but if you go for very long it might. Given all the symptoms you've described I would think your doctor would quickly agree to the blood tests. If they're positive you could skip the biopsy if you wanted, which probably would take a while to schedule. Or you can just skip all the tests and go gluten-free. It all depends on how important it is to you to have an official diagnosis.

I know you read it takes 11 years to get diagnosed but that doesn't mean 11 years from this point for you. Think of it, it's already taken you 37 years so you're already way over the average.

richard

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