Jump to content
  • 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):

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. - trents replied to ThomasA55's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Iron loss and potential celiac.

    2. - Joseph01 replied to bethmon's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      We Keep Getting Glutened With Vegetable Oil

    3. - ThomasA55 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Iron loss and potential celiac.

    4. - Aretaeus Cappadocia replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Edy's and Dreyer's ice cream

    5. - knitty kitty replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Edy's and Dreyer's ice cream

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,086
    • Most Online (within 30 mins)
      10,442

    Joseph01
    Newest Member
    Joseph01
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com community, @ThomasA55! Before I give my opinion on your question about whether or not you should undergo a gluten challenge, I would like to know how you react when you get a good dose of gluten? Are you largely asymptomatic or do you experience significant illness such as nausea and diarrhea? You mentioned intermittent joint pain before you began experimenting with a low gluten diet. Anything else?
    • Joseph01
      This is way past due for your post.  I have Celiac and have been recovering for more than a year.  Doing well.  Used Essential oil to day to fry some chicken.  Read the label all good.  Then ate some chicken.  Here comes the gluten reaction.  I haven't had a gluten reaction since year.  I am angry.   I have been so careful with this crap and don't wan't any set backs!!!!! Good luck to you with your post.   Celiac is HELL!
    • ThomasA55
      Hey everyone. I'm a young adult who had very high iron in 2024. 64% saturation 160 ferritin. In 2025 I had far lower iron. 26% saturation and 130 ferritin. I know this is still in range but it seems to be a large drop. That combined with the fact that I developed some intermittent joint pain between the two years makes me wonder if I could be celiac. My dietary intake of iron was pretty steady (mostly in the form of red meat). I did carnivore (therby eliminating gluten) for a bit after the second test and felt improvements in my joints and digestion. I still consume gluten occasionally socially, for religious reasons, and through cross contamination/food sharing. For these reasons, I would need to know if I had it, because although my lifestyle is low gluten its not at the strict level it should be if it turned out I was celiac. I will get a gene test first and hope I don't have DQ2.5,DQ2.2, or DQ8, but if I had any combination of those do you guys think I need proper screening through a gluten challenge / blood test? Other context. From 2024-2025, my b12 stayed about the same in the mid 600s folate went up slightly, but I heard it takes longer for celiac to affect the absorption of these. ANA negative, CRP low, ESR low.  I don't know how much noise exists around the saturation and ferritin, but it caught my eye and Celiac seemed like a possibility. I'm under no illusion that it is probable that I have celiac, only that it may be worth screening given my overall profile.   
    • Aretaeus Cappadocia
      Sigh. I posted this yesterday based on the Safeway website. I went back again today to their website to double check. On the page where they are selling Vanilla Bean flavor, it has a distinct Certified Gluten Free label. Other flavors on the Safeway website didn't have the gluten-free statement. Today I went into the store. None of the flavors I looked at, including Vanilla Bean, have a Gluten Free statement. Is it safe? Who knows. The ingredients are either safe or nearly safe (some have "natural flavor"). There are warnings about "contains milk and soy" but not about wheat - this implies they are safe, but again, who knows. On the other hand, every flavor I checked of their Slow Churn line of ice creams has wheat as an ingredient. 100% not safe.
    • knitty kitty
      Do keep in mind that many of the newly diagnosed have lactose intolerance.  This is because the villi lining the intestinal tract are damaged, and can no longer make the enzyme lactAse which breaks down the milk sugar lactOse.  When the villi grow back (six months to two years), they can again produce the enzyme lactAse, and lactose intolerance is resolved.  However, some people (both those with and without Celiac Disease) are genetically programmed to stop producing lactase as they age.   Do be aware that many processed foods, including ice cream, use Microbial Transglutaminase, a food additive commonly called "meat glue," used to enhance texture and flavor.  This microbial transglutaminase has the same immunogenicity as tissue transglutaminase which the body produces in response to gluten in people with Celiac Disease.  Tissue Transglutaminase (tTg IgA) is measured to diagnose Celiac Disease in blood tests.  Microbial Transglutaminase acts the same as Tissue Transglutaminase, causing increased intestinal permeability and inflammation.   New findings show that microbial transglutaminase may be able to trigger Celiac Disease and other autoimmune and neurodegenerative diseases.   Microbial Transglutaminase is not required to be listed on ingredients labels as it's considered a processing aid, not an ingredient in the U.S.  Microbial Transglutaminase has been GRAS for many years, but that GRAS standing is being questioned more and more as the immunogenicity of microbial transglutaminase is being discovered. Interesting Reading:  Microbial Transglutaminase Is a Very Frequently Used Food Additive and Is a Potential Inducer of Autoimmune/Neurodegenerative Diseases https://pmc.ncbi.nlm.nih.gov/articles/PMC8537092/
×
×
  • Create New...