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Too Late For A Diagnosis?

Lshetler

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Lshetler Rookie
Lshetler
Posted

I didn't have health insurance for a bit after high school, but my 'supposed' celiacs had me unable to function at all, my mental/fatigue symptoms were really bad. I heard about going gluten free and couldn't wait to have the blood test, so I have been on a diet with no gluten, corn, dairy, sugar, garlic, legumes, nuts, and whatever else I have reactions to. I've been on it for about 7 months, my life is completely different now, but I want to have the celiacs diagnosis because I need more help with dealing with my diet and CC.

The doctor I most recently saw for it was a moron. He told me to take a blood test and I said it won't work if I haven't been eating gluten. Then I asked if it would detect gluten intolerance as well, to which he replied, 'What's the difference?' (My number was 12, but I didn't expect it to show up since I've been 'clean' for so long)

So, is there some way I could test it if I've been gluten free for so long? I can't start eating it again, I have such a violent reaction. You'd think I could just show a doctor my symptoms or something, maybe bring in a bloody stool sample after having a bit of gluten. I've made a lot of progress, but my grandparents are healthier than I am, and I want to be able to work and and start living. I've been sick my whole life.

So any information/help with diagnosis and doctors would be greatly appreciated.

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gfpaperdoll Rookie
gfpaperdoll
Posted

You have a diagnosis just not from a doctor. & I do not think that they would be much help even if they did give you a diagnosis. You need to be getting well, not making yourself sicker by eating gluten...

What type of problems are you having with the diet and cross contamination?

I am sure there is someone here that is having or has had the exact same problem.

You could test thru Enterolab.com if you want additional information, about your genes, absorption and if you have a reaction to gluten and dairy. Their complete test is about $369 & no doctors orders are needed.

ravenwoodglass Mentor
ravenwoodglass
Posted
So, is there some way I could test it if I've been gluten free for so long? I can't start eating it again, I have such a violent reaction.

That reaction is a positive diagnostic result.

If you want a positive diagnosis solely for the sake of healing and CC knowledge you could not have found a better place than you have right here.

Most of us have been through the idiot doctor routine, some for so long that it almost killed us. You may be able to find a good allegist who deals with food intolerances who could help, but after he has you challenge with gluten he will most likely send you to a GI for confirmation and more glutenings until you are damaged enough again to show positive on a biopsy. If you don't want to deal with all the pain then that is pretty diagnositic in itself. With the other intolerances the allergist may be able to help with those, through the same elimination and challenge process. You may find that some of the foods you have taken out are actually tolerated. Using myself as an example, I thought I couldn't tolerate nightshades, tomatoes and potatos etc, until we realized it was the gluteny canopener that got me every time I used tinned tomatoes, not the tomatoes themselves. With nuts it wasn't the nuts but the processing, either soy oil or gluten CC or gluten in the seasonings. Plain nuts right out of the shell were fine. It is hard to figue everything out, and we are all different and even amoung celiacs there are differing degrees of sensitivity. The most helpful place I have found is right here.

Ask any questions you need to here and read as much as you can.

Lshetler Rookie
Lshetler
Posted
  • Author

While reading here, I am SO glad I found out about celiac's somewhat early (21 years old). I can't type much, my wrists are completely destroyed, and I have a lot of muscle/joint problems, which got better but are still quite severe. My aunt is currently on her deathbed because of colon cancer, and my mother has lots of problems as well.

This thing really ruined my childhood. I had blood/mucus in my stool since I was 14, and symptoms before that as well. By the time I switched to a good diet, I didn't notice much change because my intestines couldn't even tolerate fruit without making me tired/giving me a headache. Now I can have a lot more stuff.

My symptoms were: fatigue, depression, irritiability, malabsorption, anemia, hair loss, joint/muscle pain, severe dry eyes, hormonal imbalance/adrenal problems, and that's not counting the GI problems. I also have type 1 bipolar disorder, which reacts VERY poorly to malabsorption, so I used to be constantly episodic, whereas now the episodes have almost gone away. I was so tired and miserable all the time. If I hadn't found out about this, I would have died within a few years, whether it was the disease or at my own hands. Which is sad, because now I realize that I'm actually a very happy/optimistic person. I had just become something unrecognizable.

The problems that remain are: Mucus in stool, occassional fatigue/sadness/irritability, but much lesser severity. Joint/muscle pain, Severe dry eyes, and hormonal imbalances.

I'm setting up my own cabinet in my house with my own dishes/utensils. It's hard because I'm not healthy enough to work, and my parents don't have much money. I need to get new shampoo and such as well. I don't want to have to be obsessive compulsive and shake people's hands with my sleeve, but it seems like I might have to... This has been a long process, and I'm learning more every day. I'm just a bit paranoid that I may never be able to eliminate CC while living with other people.

Oh, and thanks for the replies!

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      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
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