Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Rogol72
      - Rogol72 replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying...
    2. Scott Adams
      - Scott Adams replied to HAUS's topic in Gluten-Free Foods, Products, Shopping & Medications
      8

      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin. In the early 1900s, refined white flour replaced whole grains, and people began...
    3. Scott Adams
      - Scott Adams replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted...
    4. JoJo0611
      - JoJo0611 replied to JoJo0611's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      CT with contrast.

      Thank you.
    5. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Inconclusive results

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased int...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,441
    • Most Online (within 30 mins)
      7,748
    Linda Boxdorfer
    Newest Member
    Linda Boxdorfer
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.