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In Need Of Dr. In Northern Ca

DANIEL*S AMBER

By DANIEL*S AMBER
in Doctors

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DANIEL*S AMBER Newbie
DANIEL*S AMBER
Posted

Hello, Im writing this because im very very confused. i have no primary Dr. because the two i did have knew nothing about my disease. they told me to find my own Dr. myself. Im currnetly diagnosed with DH and every book or online thing i read it said if you have DH than you are celiac positive. But again because im working with DR.s that have no idea about my disease they made me go gluten free for 2 months than made me go back on a gluten diet. They had me eat gluten for 2 weeks than did an endoscopy and colonascopy. They found nothing so i came home to research myself and found that if you were to do a test like that you are do eat 4-5 pieces of bread a day so again why did my DR. do this test it was done for nothing i feel. Im really confused. i Live in northen CA. i need a Dr. who can understand me. i have been trying to learn on my own how to live this strict gluten-free life.It will BE helpful if anyone could help me im not alot of pain my limbs go numb alot i cant sleep anymore. thanks amber

  • 2 weeks later...
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knittingmonkey Newbie
knittingmonkey
Posted

Hello, Im writing this because im very very confused. i have no primary Dr. because the two i did have knew nothing about my disease. they told me to find my own Dr. myself. Im currnetly diagnosed with DH and every book or online thing i read it said if you have DH than you are celiac positive. But again because im working with DR.s that have no idea about my disease they made me go gluten free for 2 months than made me go back on a gluten diet. They had me eat gluten for 2 weeks than did an endoscopy and colonascopy. They found nothing so i came home to research myself and found that if you were to do a test like that you are do eat 4-5 pieces of bread a day so again why did my DR. do this test it was done for nothing i feel. Im really confused. i Live in northen CA. i need a Dr. who can understand me. i have been trying to learn on my own how to live this strict gluten-free life.It will BE helpful if anyone could help me im not alot of pain my limbs go numb alot i cant sleep anymore. thanks amber

I'm in No. Cal, Petaluma. Had many symptoms of celiac for years, and then changed my doctor because the other doc moved even further away. I found this new doctor, went in for a physical where I told him I thought I had celiac and was going to try a gluten-free diet. He asked me if I wanted a blood test... I had not known there was a blood test! So I had my blood drawn and a few days later he called, very excited, "your test is positive for celiac and you need a gluten-free diet."

I saw him today for other results, he confessed a LOT of people come in thinkng they have celiac and test negative, but he was surprised I tested positive and we're happy we found something wrong so we can know how to fix it. He's a FP, so he doesn't usually treat celiac or specialize. I think my biggest resource for help with this new diagnosis has been a friend with celiac. His name, is case you're interested is Nikolai Lozanov.

Takala Enthusiast
Takala
Posted

It's a real bleeping wasteland up here.

If you have DH, and a diagnosis of DH, you've got Celiac. Don't worry about any of the dishonest, greedy doctors wanting to cheat you out of more positive test results. (there is so much technical information online available about diagnosing this disease, at this point any doctor you run across who does it the wrong way doesn't have an excuse other than they're milking your insurance.)

Since you have it, the best thing to do is to do as much research as possible into what you should eat, and how to shop for it and prepare it without cross contaminating yourself. A doctor, alas, is not going to be able to help you with this aspect. Neither, strangely enough, are many "nutritionists." (I've read numerous accounts online of "nutritionist" advice on celiac and gluten intolerance that was just .... plain.... wrong. Very wrong. )

If you don't eat properly, avoiding gluten, no amount of access to a doctor who knows what they are doing is going to "help" you.

Google search "gluten free name of your town" and you should be able to find places to shop for gluten free foods, and even eat out. Last week we found a really yummy Indian restaurant down in Natomas (North Sacramento) that has most of their items gluten free - just a little store in a shopping mall, but Oh My Gosh, it was totally delicious, and I didn't react. What a treat ! My local Raley's/Belair specialty aisle, and health food stores carries enough items I don't have to mail order. I don't do much Whole Foods shopping, because the one in Roseville is laid out so stupidly it takes forever to find the gluten free items scattered all over- the Natural Foods is so much faster.

Thai food, such as pad thai, and some sushi, if the chef is really good, can also be gluten free. There is a gluten free restaurant in Davis and Steve's Pizza also has a gluten free crust option.

The biggest thing to realize is that in the beginning you may have to eat more simply, avoiding a lot of gluten-free grain carbohydrates, and once healed, you may be able to branch out further. I started with the Specific Carbohydrate diet, which uses a lot of nut meals for baking. I see to be okay with corn and rice, sorghum, amaranth, beans, and I'm pretty sure I'm not so okay with any large amount of flax. I can eat tapioca but it tends to make me puffy, so I am not using it at home anymore. Life is a journey in finding out what agrees best with my body. And then there are things like toasters, shared cutting boards, lipsticks, body lotions- a lot to learn. ( I also have some pets with wheat allergies, so we are pretty much avoiding the stuff here. my spouse eats gluten free at home. )

With doctors, I don't wait for them to "understand" me, I tell them I'm gluten intolerant, I have related auto immune problems as a result, and that they are not to give me anything with it. Changes the dynamic. I told my current PCP about the last chain of inept doctors and he believes me, even if I don't have an "official" diagnosis because I had so many other related conditions, and he's seen those test results- it's not my fault if they can't pull a diagnosis out of it. That, and I've not eaten the stuff in about 7 years, and got rid of most of the blatant neuro problems subsequently, tends to convince them it's not just a fad.

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