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

What's My Sensitivity?


HelenaHandbasket

Recommended Posts

HelenaHandbasket Newbie

Over a year ago, I had an extreme flareup of joint pain. My knees were the worst. I was wearing braces and using a cane. I thought I had lupus or rheumatoid arthritis. I had every possible fix there could be, cortisone shots, antiinflammatories, etc. No tests came back positive, so nobody really knew what I had, and nothing helped the pain go away. In my desperation, I tried every possible fix I could find on the internet and when I hit on gluten free and tried it, ALL THE PAIN WENT AWAY! It was insane, I couldn't believe it. Thankful, but still, I couldn't believe it. I've been good since and been staying gluten free for the most part. While being gluten free, I also noticed that I don't have the excessive flatulence I always used to have. I just thought I was a gassy person and never attributed it to eating gluten.

So here's my question. I have found that I can eat a little bit of gluten with no repercussions. Bread still gives me mega gas, so I stay away from that completely. Oatmeal doesn't bother me at all and pasta doesn't seem to give me any gas. If I really go off the wagon, I notice my fingers toes start getting a little stiff and sore again, so I know there's some kind of problem. Have I been strict gluten free for a year for nothing, or have I healed something or do I have a particular allergy to something specific and not all glutens, possibly? I don't like restricting my diet for nothing, but I'll die if the joint pain ever comes back. Just wondering what kind of approach I should take.


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



Celiac.com Sponsor (A8-M):



Bubba's Mom Enthusiast

Gluten can cause many different symptoms. It's one of the reasons it's hard to get a diagnosis.

Since your reaction is joint pain, you may not see an immediate and severe response after eating small amounts of it.

Those of us with digestive reactions get instant symptoms.

If you are Celiac or gluten intollerant, it's best to keep every trace of it out of your diet. Eating it will cause inflamotory reactions in your body, causing damage. Over time, the effects of inflamation can kick off other diseases, all pretty severe.

In my own personal case I had a laundry list of symptoms, none severe enough for a Dr. to think to test me. It was only when my intestinal damage became so severe that I couldn't eat and was in constant pain that it was obvious something was very wrong.

I hate to say it, but Dr.'s are trained to treat symptoms rather than look for causes of them. They are most likely to write a prescription to alleviate the pain, or similar. By going gluten free you can get rid of the CAUSE. Isn't that a lot better than having your bones degenerate until you're crippled and on heavy pain meds?

HelenaHandbasket Newbie

So even though it appears that I can tolerate it in small amounts, you are saying I'd be better off keeping it out completely? I guess that was what I was getting at. I really hate being a hundred percent gluten free, but if that's what it takes to feel good, then I'll keep to it. I'm still not completely sure what I'm sensitive to. Could it be just wheat and not all gluten? What might be the differences in symptoms if it were merely an allergy vs a gluten intolerance?

For instance, pasta, for some crazy reason, doesn't appear to bother me, not sure why. Different kind of wheat? Bread does me in. This is very difficult to sort out.

Bubba's Mom Enthusiast

Unfortunately, "gluten light" doesn't work. You must be completely gluten free in order to prevent the inflamation that causes your symptoms. Even things like pasta, that don't seem to give you a strong reaction should be avoided. Damage is happening, but you just aren't seeing it. It will be cumlutive though.

Switch to a rice or quinoa based pasta so you can still have your favorite recipes. Smash up Rice Chex cereal to make meatloaf..there are ways to go without gluten and still eat well..in fact if you stick with eating more fruits and veggies, lean meats, and dairy the diet is very healthy.

If you have doubts, write down a list of all symptoms you may have, go completely gluten free for 6 months and see if any of symptoms are gone? if they are...you have your gluten answer.

Archived

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

  • 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. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    2. - trents replied to Sarah Grace's topic in Related Issues & Disorders
      25

      Headaches / Migraines and Hypoglycaemia

    3. - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

    4. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      2

      Heat intolerant... Yikes


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,151
    • Most Online (within 30 mins)
      7,748

    Travis25
    Newest Member
    Travis25
    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

    • knitty kitty
      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
×
×
  • 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.