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

Don't Know What It Could Be Then?

KMMO320

By KMMO320
in Food Intolerance & Leaky Gut

Recommended Posts

KMMO320 Contributor
KMMO320
Posted

I posted a few days ago about a possible yeast problem...

SInce April of this year, I have been poked and prodded by 4 different doctors, racked up thousands in medical bills and just been sick for what seems, forever. Since 1997, I have been diagnosed with "IBS" and I just lived with it until I started feeling other things like migranes and dizziness, that is where the new drs came in. Initially, I was deficient in vitamin D and Iron, which is why they suspected Celiac. ALl tests came back negative, but with my IGA deficiency, IBS, immune problems, thyroid and all my other symptoms, my Dr was willing enough to say I had Celiac DIsease and to go gluten-free. Prior to the "diagnosis" they put me on vitamin supplements and before even going gluten-free, my levels were all back up.

Well, It has been 2 months, and while my IBS has seemed to settle (FINALLY!), everything else is the same. Nausea, dizziness, shortness of breath, heart palpatations, foggy head. Always after I eat, and it can happen randomly. Doesnt always happen WHEN I eat, but when it does, it is after I eat. Could be an apple, could be a gluten-free sandwich, could be some chips, could be scrambled eggs. I just never know.

I thought it was yeast, then I thought it was sugar, caffeine, salt, dairy.

So, 2 days ago, after being exclusively gluten free, I started eating it again to see what happened. The first day, I ate a bagel and a muffin. Nothing happened. Yesterday, I ate crackers and cheese. Nothing happened. this morning, I ate a muffin. Nothing. I am waiting and waiting....but I have been feeling fine.

Because my tests were all negative anyway, and my vitamin levels went back up on supplements before even going gluten-free and because I am not having reactions, I am thinking maybe I do not have celiac disease after all. I can't deal with any more doctors or medical bills, and I am thinking it is time for experimentation. I just don't even know how to begin. There is no denying that going gluten-free seemed to help my digestive system, I just want all of the other problems to stop too :(

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

Celiac.com Sponsor (A8-M):


SMDBill Apprentice
SMDBill
Posted

I wonder if you could have an intestinal issue that could be caused by sugar, other grains, or a combination of celiac and something else? However, when you ate foods with gluten and had no reaction, and based on the fact that you were diagnosed based on deficiencies rather than blood or biopsy confirmation, maybe you don't have celiac. That's a pretty good challenge to eat that stuff and the fact that it didn't make you sick-er is really a positive because celiac causes damage. Biggest concern to me would be if you had an internal reaction to gluten but didn't feel it. That would be troubling because you'd never really know when you were glutened.

It's troubling for sure. From the surface of it and with medical tests unable to confirm celiac, it does sound a bit like an allergy to something rather than intolerance or celiac disease. Have you begun to isolate foods and reintroduce them slowly to see what causes a reaction? You'd need a journal to accurately track what you ate and what the ingredients were, but that could possibly give you some insight without further medical bills.

KMMO320 Contributor
KMMO320
Posted
  • Author

Thank you, no I havent begun to isolate, but I think that is my next step. My primary was so sure it was Celiac that I guess I jumped on that idea too because it would be so easy to explain. I think I have a big process ahead of me :(

GFinDC Veteran
GFinDC
Posted

Please read this article and the study linked in it. This new research (2012) shows 2 possible additional gluten related conditions exist in addition to celiac disease. They are newly identified and don't show up on celiac disease testing. The symptoms can be very similar though.

Non-celiac wheat sensitivity article

http://www.celiac.co...ists/Page1.html

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. Florence Lillian
      - Florence Lillian replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      Hi Scott: A wonderful, thoughtful explanation. Controlled human studies would be very interesting and quite informative. I have been eliminating certain foods and have narrowed it down considerably. Having other autoimmune diseases along with Celiac has become rather challenging. I appreciate your input, thank you. All the best, Florence
    2. trents
      - trents replied to HectorConvector's topic in Related Issues & Disorders
      326

      Terrible Neurological Symptoms

      Hector, have you had a follow-up biopsy to check the progress of small bowel villous lining recovery after going gluten free?
    3. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      326

      Terrible Neurological Symptoms

      @HectorConvector, Please try adding Niacin to your supplements. Low Niacin has a connection with suicidal ideation. Been here, done that. Niacin made me feel better mentally and physically. Omega Three fats will help, too. For pain, Thiamine, B12 and, Pyridoxine B6 have been shown to have analgesic effects when taken together. I know this works...
    4. Scott Adams
      - Scott Adams replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      Hi Florence, thank you for clarifying — and no worries at all about late-night writing. I appreciate you explaining that you’re specifically asking about gluten cross-reactivity, particularly the proposed immune cross-reaction between alpha-gliadin and certain non-gluten foods on a gluten-free diet. It’s an interesting and often confusing topic. The Vojda...
    5. Scott Adams
      - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      326

      Terrible Neurological Symptoms

      I’m really sorry you’re dealing with such intense burning pain right now. When symptoms get that overwhelming, it can feel unbearable and even trigger really dark thoughts, and that’s a sign of just how much you’ve been carrying — not a sign of weakness. It makes sense that you’d want to go back to a lower-carb, meat-and-vegetable approach if that’s help...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,629
    • Most Online (within 30 mins)
      7,748
    EssexMum
    Newest Member
    EssexMum
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Florence Lillian
      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      By Florence Lillian · Posted

      Hi Scott: A wonderful, thoughtful explanation. Controlled human studies would be very interesting and quite informative. I have been eliminating certain foods and have narrowed it down considerably. Having other autoimmune diseases along with Celiac has become rather challenging. I appreciate your input, thank you. All the best, Florence
    • trents
      Terrible Neurological Symptoms

      By trents · Posted

      Hector, have you had a follow-up biopsy to check the progress of small bowel villous lining recovery after going gluten free?
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      @HectorConvector, Please try adding Niacin to your supplements.  Low Niacin has a connection with suicidal ideation.  Been here, done that.  Niacin made me feel better mentally and physically.  Omega Three fats will help, too. For pain, Thiamine, B12 and, Pyridoxine B6 have been shown to have analgesic effects when taken together.  I know this works because I've cracked some vertebrae and this combination relieves the pain.  I was prescribed opioids, but couldn't function or poop, so... I can highly recommend these vitamins for pain relief.   I adopted a paleo diet, the Autoimmune Protocol Diet which has been shown to improve intestinal health.  Improving intestinal health improves mental health because of the gut brain-axis.  Important neurotransmitter Serotonin is made in the digestive system.   Please Read... Association between dietary niacin intake and suicidal ideation: mediating role of C-reactive protein https://pubmed.ncbi.nlm.nih.gov/40859220/ Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/
    • Scott Adams
      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      By Scott Adams · Posted

      Hi Florence, thank you for clarifying — and no worries at all about late-night writing. I appreciate you explaining that you’re specifically asking about gluten cross-reactivity, particularly the proposed immune cross-reaction between alpha-gliadin and certain non-gluten foods on a gluten-free diet. It’s an interesting and often confusing topic. The Vojdani & Tarash paper you mentioned did report antibody cross-reactivity in laboratory settings, which has led to a lot of discussion in the gluten-free community. However, it’s important to note that in-vitro antibody reactions (in a lab dish) don’t always translate into clinically meaningful reactions inside the human body. At this point, major celiac research centers generally conclude that true immune cross-reactivity to non-gluten foods in people with celiac disease hasn’t been clearly demonstrated in well-controlled human studies. That said, many individuals do report symptoms with foods like corn, dairy, oats, or others, and those reactions can absolutely be real — they just may involve different mechanisms, such as food intolerance, FODMAP sensitivity, separate immune responses, or individual gut permeability differences rather than molecular mimicry of gliadin specifically. If certain foods consistently trigger symptoms for you, keeping a structured food and symptom log and discussing it with a knowledgeable gastroenterologist or dietitian may help clarify patterns. It’s a nuanced area, and your question is thoughtful — we just have to separate what’s biologically plausible in theory from what’s been conclusively demonstrated in patients.
    • Scott Adams
      Terrible Neurological Symptoms

      By Scott Adams · Posted

      I’m really sorry you’re dealing with such intense burning pain right now. When symptoms get that overwhelming, it can feel unbearable and even trigger really dark thoughts, and that’s a sign of just how much you’ve been carrying — not a sign of weakness. It makes sense that you’d want to go back to a lower-carb, meat-and-vegetable approach if that’s helped reduce symptoms before; sometimes dialing things back to simple, whole foods can calm inflammation or gut irritation. At the same time, your safety and mental health matter just as much as the physical symptoms. If the suicidal thoughts are feeling strong or hard to control, please consider reaching out for immediate support — in the U.S., you can call or text 988 for the Suicide & Crisis Lifeline, or go to the nearest emergency room if you feel at risk. You don’t have to handle this alone. It may also be worth checking in with your doctor soon to review what’s changed and see if there are adjustments or treatments that could ease the burning pain more effectively. You deserve relief, and you deserve support while you figure this out.
×
×
  • 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.