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

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
      132,033
    • Most Online (within 30 mins)
      7,748

    CE1963
    Newest Member
    CE1963
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jmartes71
      Thankyou so much for your words.Its a hard battle when a supposed well known hospital whose celiac " specialist " has down played me because my colon looks fine and put it in my medical and so pcp doesn't take seriously. In their eyes we all carry that gene.Im having alot of bad days trying to be positive because of it.
    • Scott Adams
      Your experience is both shocking and critically important for the community to hear, underscoring the terrifying reality that cross-contamination can extend into the most unexpected and invasive medical devices. It is absolutely devastating that you had to endure six months of sickness and ultimately sustain permanent vision loss because a doctor dismissed your legitimate, life-altering condition. Your relentless research and advocacy, from discovering the gluten in MMA acrylic to finding a compassionate prosthodontist, is a testament to your strength in a system that often fails celiac patients. While the scientific and medical consensus is that gluten cannot be absorbed through the skin or eyes (as the molecules are too large to pass through these barriers), your story highlights a terrifying gray area: what about a substance *permanently implanted inside the body*, where it could potentially shed microparticles or cause a localized immune reaction? Your powerful warning about acrylic lenses and the drastic difference with the silicone alternative is invaluable information. Thank you for sharing your harrowing journey and the specific, severe neurological symptoms you endure; it is a stark reminder that celiac is a systemic disease, and your advocacy is undoubtedly saving others from similar trauma.
    • Scott Adams
      Those are driving distance from me--I will try to check them out, thanks for sharing!
    • Scott Adams
      I am so sorry you're going through this bad experience--it's difficult when your own lived reality of cause and effect is dismissed by the very professionals meant to help you. You are absolutely right—your violent physical reactions are not "what you think," but undeniable data points, and it's a form of medical gaslighting to be told otherwise, especially when you have a positive HLA-DQ2 gene and a clear clinical picture. Since your current "celiac specialist" is not addressing the core issue or your related conditions like SIBO and chronic fatigue, it may be time for a strategic pivot. Instead of trying to "reprove" your celiac disease to unwilling ears, consider seeking out a new gastroenterologist or functional medicine doctor, and frame the conversation around managing the complications of a confirmed gluten-free diet for celiac disease. Go in and say, "I have celiac disease, am strictly gluten-free, but I am still suffering from these specific complications: SIBO, chronic fatigue, dermatological issues, and high blood pressure linked to pain. I need a partner to help me address these related conditions." This shifts the focus from a debate about your diagnosis to a collaborative plan for your current suffering, which is the help you truly need and deserve to work toward bouncing back.
    • NanCel
      Hello, no I had to have them re done and then used a liner over the top.  Many dentists are not aware of the celiac effects.  Best of luck.   There is other material, yet, very expensive.
×
×
  • 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.