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Dr Issues

Reissa

By Reissa
in Doctors

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Reissa Newbie
Reissa
Posted

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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missceliac2010 Apprentice
missceliac2010
Posted

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.

ravenwoodglass Mentor
ravenwoodglass
Posted

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.

Reissa Newbie
Reissa
Posted
  • Author

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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    • knitty kitty
      Accuracy of testing concerns

      By knitty kitty · Posted

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
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      By trents · Posted

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      By Peace lily · Posted

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
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