Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Feel Like I'm Poisoning Myself


jmryan83

Recommended Posts

jmryan83 Rookie

My topic title says it all. I feel like I'm poisoning myself everytime I eat something with Gluten in it.

Forum members recommend to keep on a regular diet until testing can be done, but I don't know if I can do it.

I ate some macaroni and cheese today and have been sick all evening. Stomach cramps, diarrhea, and extreme lethargy.

On days when I've tried eliminating gluten I feel an immediate difference in my energy levels and stomach cramps.

 

Worst of all is I rely on my local public health system and it takes a month just to get a GP appointment. I have one about 3 weeks from now, but then I'll have atleast another month before I can see a specialist. I just don't know what to do.

 

Is it dangerous to just stop eating gluten without absolutely knowing if your a Celiac patient?

What's the worst that could happen to me if I just cut out the gluten and see how I feel in a month or two? (besides possibly screwing with any test results)

 

HELP!!!!

 

 


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



Celiac.com Sponsor (A8-M):



psawyer Proficient

Is it dangerous to just stop eating gluten without absolutely knowing if your a Celiac patient?

No, it is not. There is no essential nutrient in gluten that is not also in other foods.
SeekingSarah Apprentice

I feel the same way, originally my GI appt was for May, but I found another one who could see me sooner, appt on Monday! Having been brushed off by a GI a few years ago and told I had IBS...I have no idea what my blood results really sad I didn't suspect Celiac, never really knowing much about it so I didn't inquire further as to what tests he actually did, etc. So NOW I want to know, I want to see the results, I want the endoscope...I want the DX. I also don't want to go off Gluten and then have to re-gluten for tests, but again I was lucky to get a quick appt. I've seen others who don't necessary need/want an official dx go off Gluten so they can feel better...the decision is up to you really. 

jmryan83 Rookie

Thanks for everyone sharing.

 

I've decided I'm going to give the next 3 weeks to my G.P. visit a try gluten-free.

 

I'll still have a full month to re-glutenize before I see any G.I. specialist.

 

I wonder since I can feel such a difference in such a short time if it's gluten intolerance or if I actually have damage which I heard can take months to repair?

 

 

EmiPark210 Contributor

Most general practitioners can order a blood pannel test so I wouldn't recommend going off it. But staying on doesn't mean cheerios for breakfast, sandwiches for lunch, and pasta for dinner. It can mean as little as a half serving of wheat crackers, a piece of bread, a cookie (or two) per day. 3 weeks is enough time that if they tested you at that appointment, you could come back falsely negative.


I know it sucks. I was gluten free for 3 weeks before I got my biopsy scheduled and I just started back on it. It's hard, but it's a bit easier when you know that it is necessary to get your answers. Hang in there, and feel free to ask any questions that come up. 

 

And in terms of clearing up: some people (myself included) notice a change after a week, but some people take months to years to really start to feel like they're getting better. For testing, it's better not to risk being a great healer. You usually need a blood test to get sent for a biopsy, and blood tests take a recommended 3 months on gluten to be accurate (Open Original Shared Link)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,143
    • Most Online (within 30 mins)
      7,748

    sillyyak52
    Newest Member
    sillyyak52
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.9k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • sillyyak52
      I was diagnosed with celiac disease just over a year ago. I never had any gastrointestinal symptoms before I started eating gluten free, and the diagnosis did come somewhat as a shock. The symptoms that led to my diagnosis were fatigue, and an ongoing Iron and Vitamin D deficiency that worsened even when taking supplements. I visited my GP with these symptoms, which consequently led to a positive celiac blood test and eventually a positive biopsy. Since starting the gluten free diet, I no longer have any deficiencies or unexplained fatigue. When I am glutened now, I experience bloating, severe constipation (that often affects my sleep!) and an onset of fatigue.  My family does not believe that I actually have celiac disease, and thinks that all these symptoms are a 'placebo' effect of being told the 'wrong' diagnosis. Ever since my diagnosis, they have constantly been telling me that I should seek a second opinion. I really don't see the point of getting a second opinion. I trust that the blood test and biopsy were accurate, and the improvement in my blood tests, fatigue and the symptoms I experience now when I now accidentally consume gluten are enough for me. On top of that, if I were to seek a second opinion now, I believe I would need to do a gluten challenge to get an accurate diagnosis, which I am definitely not willing to do just to please my family.  Because they don't believe in my diagnosis, they think that I take the diet 'too seriously'. They are always comparing my celiac disease to my siblings' mild peanut allergy, and it is so exhausting trying to explain it when they just look at me like I am crazy. For example, since my siblings can eat products with 'may contain peanuts' with no issues, they tell me I am ridiculous for avoiding 'may contain gluten' products when possible.  I am also very careful about cross-contact in restaurants, which they will make similar comments about. I have been told are that "I need to stop being so fussy because I live in the real world". Recently, when I did not want to buy my birthday cake from a local bakery that confirmed their gluten free items are not coeliac-safe, my family told me "Well, who cares? They said it's gluten free. What more could you want? Do you need to take them to court to prove it's gluten free so you'll eat it?" It is truly so upsetting that after a year they have made no effort to understand celiac disease, and why I am so strict or 'fussy'. I have thought about giving them information to read, but my mom never ever reads anything. Not even her own emails, and will often make me read things and summarise them for her. She is honestly the one who is most difficult and very obviously still sees my celiac disease as something that I choose to believe.  How do you deal with people close to you who just refuse to understand? Are there any resources anyone could recommend for families that are short and easy to read?
    • Katya773
      Ohh gotcha , thank you! Makes sense why I got so sick 😕 Definitely avoiding this in the future 
    • pmarklesparkle
      Thank you, Hopeful!  I've downloaded both of those apps and will try them out.  Much appreciated!
    • Thelma Cadieux
      Thanks but I will check it out with my doctor, usually stress will trigger it,
    • Hopeful1950
      Has any doctor suggested taking a round of Dapsone?  If you have dermatitis herpetiformis, dapsone will clear it fairly quickly.  It is not a drug you would want to take forever, but when all else failed my doc had me take it as a way to determine if it was dermatitis herpetiformis.  Sure enough it worked like a miracle and itch stopped and after 2 months the rash cleared.  Then I embarked on figuring out how to eat to avoid the breakouts.  It is my understanding that once you expose to gluten, the reaction happens and antibodies are deposited in your skin.  They can blister right away or hang around for a long time and get "activated" by other things like your monthlies, pressure, stress etc.... It makes it difficult to diagnose and difficult to manage.
×
×
  • Create New...