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caek_is_a_lie

I Just Had The Best Doctor's Appointment!

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I went to the Naturopath yesterday. I go to a community clinic of the National College of Naturopathic Medicine in Portland because it's a lot cheaper. I haven't been in to see them since I made all my wonderful discoveries about gluten, so my appointment ended up lasting about 2 hours!

I guess in a way, I was just going in to vent a bit, with all my frustrations about trying avoid gluten. But to my surprise, she not only understood everything I was telling them, but she actually had ideas on how to help me get even better. I guess I've lost such faith in the medical community that to have a doctor say "You have been doing an amazing job and we know exactly what to do to help you get even better" is the last thing I expect to hear. It really helps that most people at the clinic have family members with gluten intolerances and Celiac.

I talked to her about whether I should go back on it and get tested for Celiac, which I don't really want to do, and she said I could if I really wanted it listed on my chart at the MD's office, but it wouldn't really change symptoms or treatment. She brought up the point that kids some with autism have remarkable recovery going gluten-free but never test positive for Celiac, and since most of my symptoms are neurological, I think I'll just stick with staying gluten free and feeling better. My plan is to get HLA typed as soon as I can afford it. I really want to see if I have DQB1*0603 because boy would that explain everything.

She even knew right away what my skin reaction was -- those itchy blisters I get on my finger 4 days after gluten is an id reaction. She agrees that the temporary weight gain for 3 days after being glutened is related to an inflammatory response, and they've given me a phytogen supplement to help boost my immune system. The theory is that for some people, if you boost the good part of the immune system, it stops attacking its own tissues so much. The goal is to make me less hyper-sensitive to gluten so that, say, eating off the clean community silverware at work won't give me seizures that night. (for now I bought my own disposable plastic-ware for work.) Fingers crossed that it works, but so far they've been right about everything since I started going in last August, so it probably will.

I feel so much better about everything today, it's great! I can't believe there are doctors out there that can actually help me! :D

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Sandi ~ learning to live in a world obsessed and infested with wheat.

"You don't need a weatherman to know which way the wind blows" probably was not referring to us . . .

"For the love of money gluten is a root of all sorts of evil, and some by longing for it have wandered away from the faith and pierced themselves with many griefs." (apologies to 1 Timothy 6:10 (NASB)

The person we most dislike is still a soul for whom Christ died. (David Jeremiah)

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I went to the Naturopath yesterday. I go to a community clinic of the National College of Naturopathic Medicine in Portland because it's a lot cheaper.

My plan is to get HLA typed as soon as I can afford it. I really want to see if I have DQB1*0603 because boy would that explain everything.

She even knew right away what my skin reaction was -- those itchy blisters I get on my finger 4 days after gluten is an id reaction.

Wow - that is great. I'm currently waiting for my test results... and kind of freaking out that regardless of the test results I'm going to be poo-pooed by the doctor (you know, have him think I'm a hypochondriac). A large part of my fear is driven from the trials folks on the forums have had with getting diagnosed.

Your comment about getting HLA typed... can you explain that? I'm not familiar with that test.

Also, I'm curious to know more about the blisters you get on your fingers. I get little blisters on the ends of my fingers all the time (sometimes worse than others). My blisters aren't really itchy, they usually just peel off on their own and then I have very raw and sensitive finger tips. Does this sound like what you experience?

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Wow - that is great. I'm currently waiting for my test results... and kind of freaking out that regardless of the test results I'm going to be poo-pooed by the doctor (you know, have him think I'm a hypochondriac). A large part of my fear is driven from the trials folks on the forums have had with getting diagnosed.

Boy I've been through the ringer with doctors and have decided I'm through. I don't really call my Naturopath a "doctor" since that's kind of a bad word to me. She's so much more awesome than I could have ever hoped for, so she gets a special "better than a doctor" designation. :D

Your comment about getting HLA typed... can you explain that? I'm not familiar with that test.

This is a genetic test that tells you if you have certain variations of genes that are involved in the immune system. If you have certain versions of these genes, it means you have a predisposition to getting Celiac, gluten intolerance, etc. Some are more predictive of symptoms than others. In my case, DQB1*0603 would indicate a predisposition to gluten intolerance with neurological symptoms. It is also 1 nucleotide different than the widely accepted "Narcolepsy gene", DQB1*0602. It would explain why gluten intolerance aggravates--and may have even caused--my Narcolepsy. However, I haven't had the test yet, so who knows what the truth is? I'm eager to find out since I know gluten problems are a heritable trait in my family.

Also, I'm curious to know more about the blisters you get on your fingers. I get little blisters on the ends of my fingers all the time (sometimes worse than others). My blisters aren't really itchy, they usually just peel off on their own and then I have very raw and sensitive finger tips. Does this sound like what you experience?

It sounds like what a lot of people here experience. My blisters are on the top of my fingers where the hair grows between the 1st and 2nd knuckle (counting from the end of the finger.) Sometimes it 'spills over' to the sides as well. It usually only happens on my right pinky but can happen on my right thumb as well. They are very small but stick up quite far...sometimes the whole area is red and raised like a coin on my finger...and they are extremely itchy for a few hours. If I don't scratch, they go away completely, but if I scratch I can have a scab for a couple of weeks and it gets very dry and cracks, so I try not to scratch. This is a relatively new reaction for me, but it is 100% predictable...if I eat gluten, 4 days later I will get this rash, with out fail.

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