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

I'd Love To Eat A Normal Diet Again


DonnaEm

Recommended Posts

DonnaEm Newbie

I'm a 53 year old female with a 35 year history of Hashimotos. Most of my family have autoimmune disorders (Addisons, Graves, Psoriasis, Rheumatoid arthritis). About 5 years ago I started to become unwell, eventually ending up with daily diarrhoea, (massive amounts of floating, yellow stuff – sorry for the TMI) nausea, weight loss, bloating, abdominal pain, anaemia which didn’t respond to iron pills, dizzy spells, muscle pain and fatigue.

I consulted a doctor 2-3 times a year. I had heaps of tests and scans but repeatedly got told there was nothing wrong and I just needed to take my iron pills (I already was) and have a holiday! 

I finally worked out for myself that carbohydrates made me feel worse so I slowly excluded all bread, cake and biscuits from my diet which improved my digestive problems a bit but, overall, not a huge help. Finally, in desperation, I tried a different Dr.  He said that he thought he knew what the problem was and tested me for celiacs (which I’d never heard of). He never asked me about my diet.

The test was negative but I do carry the DQ2 (?) gene.  He advised me to try a gluten free diet anyway which I reluctantly did.  Within a few weeks I felt better than I had for years. I’ve been (99%) gluten-free for a year now and my former good health is mostly back which is great and I’m really grateful.

My questions: 1) could a celiacs test be negative if someone is still eating a small amount of gluten? (ie muesli a few times a week and pasta once a week)

2)  if I do not have celiacs then is it ok to eat normal food sometimes?  Bread is completely out but I do seem to be able to tolerate an occasional bit of pastry. Sometimes I would choose to eat "normal" food when out but is it causing damage if it does make me sick? 

 

I don’t really want to talk to the Dr about it – my faith in them is pretty low!


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Yes, results can be negative on celiac testing if you are not consuming gluten daily! You need to make sure you had the complete celiac panel. I have Hashi's and I tested positive on only the DGP IGA test. The others were all negative yet I had moderate to severe intestinal damage. If you do not have celiac disease, Non-Celiac Gluten Intolerance, or even a wheat allergy, then eat gluten! If you do have celiac disease, every gluten exposure sets off an autoimmune response and your intestines get damaged. It may even impact your Hashi's. It can certainly interfere with the absorption of your thyroid replacement medication (that should be gluten free too).

If you decide to go gluten-free because you really think you have celiac disease, then no cheating ever! If you are unsure, do the gluten challenge for two to three months and get re-tested. It migh help you adhere to the diet.

DonnaEm Newbie

Thank you very much for your reply and your advice. I didn't realise there was more than one test. I will consider my options.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,034
    • 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.