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Reissa

Dr Issues

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Hi,

I am not offically diagnosed celiac. However, about a year ago I went on an elimination diet and found out that I seem to have a bad reaction to both soy and wheat!

When I first was starting this elimination diet I had asked my doctor if I could be tested for celiac. She refused over... and over and over again.

Since I live in Canada, it can also be quite a pain switching doctors... And right now I also have some other issues my doctor is working on with me so it's a very inopportune time.

I want to get diagnosed celiac... since I believe you can possibly get it written off in your taxes to a certain extent (so I hear). Because I am currently a college student, broke, and not able to survive on Ramen/Cup of Noodles, ever dollar needs to be stretched.

Problem is I have been almost entirely gluten free for almost a year, and my doctor has not been very supportive. Since I have heard someone wishing to be tested should be on a gluten diet for a few weeks (I've heard between 2wks to 3months) I am not sure what I can do testing wise. I don't know if I can intentionally make myself sick that long.

For about 7yrs I was in almost constant pain. I was being treated for chronic migraines and only ate about once a day since I would get so I'll that I wouldn't want to eat. I could barely move... and after I while I couldn't walk without jarring pain in my skull nevermind jog or workout. I was constantly clouded up, I felt like my brain was swollen against my eyeballs, I was nauseous, and bloated. I gained weight, unlike some celiac people, but I think it was due to my severe inactivity.

Then, I went of soy and wheat... I got off my headache meds. My headaches went away. I shrank not only 60 pounds but also 2.5 shoe size (I used to be in mens shoe as well). I lost 8 pant sizes. My period lightened up. My GI tract had many things start functionning better again. I started living again. All this happened in a year.

But my doctor still won't support me. Hell, sometimes I am not even sure I can call myself celiac without a true diagnoses. All I know is I want to be offically diagnosed, but I think I am out of options. Am I wrong about the conclusions I have drawn? I am new to the website so I am sure that there's many topics on this... but I figured I would through it out there.

Thanks everyone.

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I don't know much about Canadian healthcare, but I do know that you have Celiac Disease!! I am in the middle of a terrible accidental glutening thanks to a pre-made Tao Chai Tea mix I bought at Target. Man do I remember this pain, and it sucks! This is my first bad glutening since beginning my new diet 2 weeks ago. Ugh! I hope by tomm I will feel better! So intentionally making yourself sick sounds like it's not an option!

It might be hard, but I think you need a new doctor! My doctor heard how good I did on the elimination diet and diagnosed me asap. Of course, his daughter has the disease and he knows the disease well. I'd find a new doctor. Squeaky wheels get lots of grease. ;)

Good luck!

Hi,

I am not offically diagnosed celiac. However, about a year ago I went on an elimination diet and found out that I seem to have a bad reaction to both soy and wheat!

Thanks everyone.


Heather C.

July, 2010: Diagnosed with Celiac Disease via elimination diet and strong Lactose Intolerance via blood work. My symptoms of glutening include 1. extreme abdominal distention, 2. severe abdominal pain, 3. gas, 4. mood swings/generally negative and unpleasant to be around!

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You are in a very hard spot and you have my sympathy. You have to go back on gluten to be tested and you would have to find a doctor willing to test.

It sounds like your best option is to just continue the diet at least until you are out of school and able to find work and live in an area where you can find a new and more knowledgable doctor.

I wish I could give you some more helpful advice but to be tested you need to redamage your body, not an option that is a good one when you are actively pursuing a degree.

Do you have Thai Kitchen noodles available there? With those and some gluten free broth and some veggies at least you would have a healthy alternative to the Ramen noodles.

Ask some questions here about how us folks with limited funds manage food wise. You should find lots of replies with good and workable ideas for you.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I actually cook quite a bit... and love it. Actually, I find that the wheat/gluten issue is much easier to avoide than the soy allergy... I have found more than a few neat recipes and I tend to do crockpots and whatnot quite a bit. I am making a chickpea socca with rosemary today. :) Hopefully it turns out good.

I guess I was just hoping there was some alternative I haven't heard of through my research. I am not even sure how long I am supposed to poisen myself. My doctor did finally agree to give me the test, but considering it was only the blood test (which is somewhat unreliable), and I'm in the middle of some classes, I haven't done it yet. I don't even know how long I should attempt it and I am scared that even if I do that the test will come out negative (which is likely) and it will all be for nothing. Considering I highly doubt my doctor will do a biopsy or follow up...

(My doctor told me if I am celiac chance are that I am still on enough gluten that it will come out positive... which I know is wrong. Funny thing with me is I get imediate reactions to both (within 20/30min) so it is pretty easy to tell when I screw it up. Even a tablespoon of the wrong mayo will trigger an instant migraine. Last time I had regular chinese food I ended up curling into a ball in the middle of the day and sleeping for 6 hours. I KNOW I don't have gluten in my diet.)

I just wish it was a better time to attempt to switch doctors.

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