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Dr Issues

Reissa

By Reissa
in Doctors

Recommended Posts

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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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
    • Theresa2407
      Doctors and Celiac.com

      By Theresa2407 · Posted

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