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

Felt Great Going gluten-free, Now Bad Again?


Try2LiveHealthy

Recommended Posts

Try2LiveHealthy Newbie

I never had any bloodwork done but had an EGD biopsy which came back negative for celiac. My grandmother had celiac and I was so miserable I went ahead and decided to do a gluten free test. This has been close to 3 weeks now that I have been gluten free. I would say the first week I felt a huge improvement!! I had felt:

Extremely bloated, more so than at 9 months pregnant with my children

Constipated

Random sharp stomach pains all over

Heaviness in upper stomach

Headaches

Back pain

Always tired

Terrible hives

I've also got hypothyroid and bad anxiety/depression

Within days all the stomach problems cleared up, my body wasn't aching, I had more energy, my hives were better, I stopped getting the headaches I have been getting every day for years!! My anxiety was much less and I felt happier all around. Basically, diagnosis or not, I was determined never to touch gluten again.

Now the past week some of these symptoms have been sneaking back in. I can't figure out what I'm doing so wrong? Does that mean the problem isn't gluten after all? I hate that I felt so good right at first

And now it is gone. Is there something I am missing?


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



Celiac.com Sponsor (A8-M):



dilettantesteph Collaborator

The same thing happened to me.  At first I felt completely healed from just eliminating bread and Cheerios.  The longer I was gluten free the more sensitive I got to gluten.  I had to educate myself more about the diet.  I was still eating gluten in unexpected places.  It was quite a long process for me.  Be patient.  It is worth all the effort.  I feel so much better now.

nvsmom Community Regular

Gluten could have snuck back into your diet somewhere. I did that a few months ago - I nibbled on some fries that had gluten every few days and felt poorly for a month or so. It was mainly intestinal and headaches that came back for me.

 

I think the symptoms like pain and fatigue are harder to get rid of and tend to keep cropping up for months, or even years, after going gluten-free. When I had been gluten-free for three months, I had a bad autoimmune flare-up of some sort with symptoms that included deep fatigue, arthralgias that were affecting my everyday movements, and increased hairloss. I though something else must be wrong with me but my doctors seem to think it is still my body healing from years of gluten caused injury. Apparently it can take a loooong time to get rid of all symptoms for some people.

 

It could also be your hypothyroidism acting up, or even healing on gluten, which could alter your thyroid medication needs.

 

It could be other food sensitivities too. dairy is a common offender for many celiacs in the first few months. It is possible something else is not agreeing with you. I have discovered something in my Vegan protein powder that makes me react with bloat and stomach pain but it appears to be gluten-free, and I don't eat enough processed foods to pin point which ingredient was doing it to me. A food journal with symptoms might help you figure out which foods are causing problems or if gluten is in your diet.

 

good luck!  I hope you feel good again soon.

Try2LiveHealthy Newbie

Thank you, I definitely plan to stick with it as I know something must have been helping. I just hate that I can't figure out what changed. Tonight I know that everything I cooked was gluten free and my stomach still hurts. How big of a deal is cross contamination? I haven't replaced any mixing bowls, pots/pans , etc but pretty much everything has been run through the dishwasher.

dilettantesteph Collaborator

It depends on how sensitive you are.  Pots and pans that aren't scratched up should clean up in the dishwasher.  What are you eating?  Do you have gluten in the house that could be causing cc?  It can take a couple of weeks for me to heal from a glutening with my safe diet.  Could you be healing from an earlier mistake?

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,025
    • Most Online (within 30 mins)
      7,748

    Amari Love
    Newest Member
    Amari Love
    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

    • 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.
    • sleuth
      He is not just a psychiatrist.  He is also a neuroscientist.  And yes, I have already read those studies.   I agree with benfotiamine.  This is short term while glutened/inflammation occurs.  As I had already mentioned, these symptoms no longer exist when this phase passes.  And yes, I know that celiac is a disease of malnutrition.  We are working with a naturopath.
×
×
  • 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.