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

      Going for upper endoscopy today

    2. - Midwesteaglesfan posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Going for upper endoscopy today

    3. - marlene333 replied to Grace Good's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Bee balm lipbalm not gluten free

    4. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      4

      Related issues


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,267
    • Most Online (within 30 mins)
      7,748

    Kristine Ryder
    Newest Member
    Kristine Ryder
    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

    • Wheatwacked
      Hello @Midwesteaglesfan and welcome. A result greater than 10 U/mL is considered positive. Some labs use 15 as the cutoff, but 34 is in the positive.  The endoscopy and biopsy is looking for damage to your small intestine.  I don't don't think 5 days is enough to repair the damage. This comment is effectly your answer, regardless of your biopsy results.  The endoscopy has been the Gold Standard diagnostic, and most healthcare providers won't diagnose celiac disease until your intestinal lining Marsh Score reaches stage 3. You don't really want to wait for the damage to get worse, especially since only five days mostly gluten free gave you relief.  Yes, migranes is one of the 200 symptoms that may be caused by Celiac Disease. Malabsorption Syndrome is often comorbid with celiac disease.  The western diet is deficient in many vitamins and minerals.  That's why gluten processed foods are fortified.  Gluten free processed foods are not; Vitamin D deficiency is a virtual given.  40 to 60% of the industrial population is deficient in vitamin D, Damage to the intestinal lining from celiac disease can decrease the number of vitamin D receptors.  So now you get no vitamin D from the sun (skin cancer scare) the major source of vitamin D, plus absorbtion from food is poor because of intestinal damage.   Low iodine intake is getting more of a concern because the major source of iodine used to be bread (dough conditioner with iodine was stopped in the US in the 1970s), dairy (lactose intolerance from eating quick pickles with vinegar instead of fermented pickles which supply lactase excreting lactobacillus to improve Lactose intolerance. Commercial Dairies have wheat, barley and rye added to the cow feed. Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein causing the problem.  And people use less iodized salt.  In the US intake of iodine dropped 50% from 1970 to 1984. Switch to Grass fed only milk and consider supplementing Liquid Iodine drops to your diet.  The omega 6 to omega 3 ratio of commercial milk is 5:1; Organic milk is 3:1 and grass fed milk is 1:1. The typical western diet is around 14:1, optimum for humans is 1:1.  Wheat flour is 22:1 omega 6:3.  Choose vegetables lower in omega 6, it is inflammatory. Eat fermented foods and switch to Grass fed only milk.  Some say they are sensitive to milk protein, but it is the gluten added to supplement the cow feed to increase milk production that becomes part of the milk protein.   
    • Midwesteaglesfan
      At 41 years old I have been fighting fatigue and joint pain for a couple months.  My family doctor kept saying nothing was wrong but I was insistent that I just didn’t feel right.  Finally after running several blood labs, one came back showing inflammation in my body and I was referred to a rheumatologist.  He was extremely thorough and sat with me and my family for a good hour asking questions and listening. He ordered X-rays of all my joints and more bloodwork.  He suspected some sort of reactive inflammatory arthritis.  My TTG (Tissue Transglutaminase) came back at 34. he told me to try going gluten free and out me on Salfasalzin to help the join inflammation.  Over the next couple days going gluten free and doing a lot of research and talking to people with celiacs,  we found that I should have an upper endoscopy for insurance purposes in the future.  I reached back out to my rheumatologist and expressed this concern and he got back to me stating I was correct and resume regular gluten diet and stop the medication until after that scope.     They were able to schedule me in for 2 days later.  I had been gluten free, or as close to it as I could be for about 5 days.  I know I ate some brats with it but wanted to use them up.  My symptoms had gotten slightly better in those 5 days.  I felt less fatigue and joint pain was slightly better(it had gotten really bad) so for these last 2 days I’ve gone crazy with wheat bread, pasta and such.  I’m hoping those 5 days didn’t screw this endoscopy up.  I can’t imagine after a life of gluten, my intestines healed in 5 days and after eating gluten again for these couple days,  my stomach hurts, joint pain is coming back up so I know the inflammation is there.   Hinesight after this diagnosis, I have had chronic migraines since my late teens.  Has that been a lingering symptom of celiacs all these years?  I’ve never really had the stomach issues, for me it came in heavy these last couple months as the fatigue, just always feeling tired and exhausted.  And the joint pain.     So getting in the car for the 2 hour drive to the hospital for this scope now.     Wish me luck!
    • marlene333
      To play it safe, use Vasoline Lip Therapy. No questions as to it containing gluten.
    • Mari
      jmartes, Thank you for sharing  more information with us. Most of us Celiacs whose problems do not clear up with in a few years have to decide what to do next. We can keep seeing DR.s and hope that we will get some  medication or advice that will improve our health. Or we can go looking for other ways to improve our health. Usually Celiac Disease is not a killer disease, it is a disabling disease as  you have found out. You have time to find some ways to help you recover. Stay on your gluten-free diet and be more careful in avoiding cross contamination . KnittyKitty  and others here can give you advice about avoiding some foods that can give you the gluten auto immune reaction and advice about vitamins and supplement that help celiacs. You may need to take higher doses of Vit. B12  and D3.  About 20 years before a Dr. suggested I might have Celiac disease I had health problems that all other Dr said they could not identify or treat. I was very opposed to alternative providers and treatments. So many people were getting help from a local healer I decided to try that out. It was a little helpful but then, because I had a good education in medical laboraties she gave me a book  to read and what did I think. With great skeptism I started reading and before I was half way through it I began using the methods outlined in the book. Using those herbs and supplements I went from hardly able to work to being able to work almost fulltime. I still use that program. But because I had undiagnosed celiac disease by 10 years later some  of my problems returned and I started to loose weight.    So how does a person find a program that will benefit them? Among the programs you can find online there are many that are snake oil scams and some that will be beneficial. by asking around, as I did. Is there an ND in your area? Do they reccomend that person? If you would like to read about the program I use go to www.drclark.net   
    • Scott Adams
      It's unfortunate that they won't work with you on this, but in the end sometimes we have to take charge of our own health--which is exactly what happened to me. I did finally get the tests done, but only after years of going down various rabbit holes and suffering. Just quitting gluten may be the best path for you at this point.
×
×
  • 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.