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. - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

    2. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

    3. - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

    4. - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

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

      Stomach hurts with movement


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,465
    • Most Online (within 30 mins)
      7,748

    Catherine17
    Newest Member
    Catherine17
    Joined

  • Celiac.com Sponsor (A20):



  • Celiac.com Sponsor (A22):




  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Ginger38
      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • 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.