Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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:
    Help Celiac.com:
    eNewsletter
    Donate

No grains at all?


carle

Recommended Posts

carle Rookie

Hi. Im 49 male. I was diagnosed with celiac disease last year. In high school, I was diagnosed  with psoriasis (p) and psoriatic arthritis (psa). For 30 years about I took high-dose ibuprofen for the inflammation. The psa got so bad 5 years ago I had to start enbrel. A biologic drug that is an injection. So Ive been very good about eating gluten-free. Ive had 2 glutenings in 9 months. Symptoms were migraines and stomach pain. I was feeling better in a couple days.

In September I started getting same symptoms.  After a couple weeks, bad constipation. Same as before celiac disease diagnosis. I was going crazy! I couldnt figure where the gluten was coming from! Then I was reading the forum here, great resource by the way, and I read how some celics are intolerant to rice also. So I stopped my brown rice that I had been eating daily for years. A matter of days all gluten symptoms were gone. The real magic to me is that within a couple weeks all my psa pain was gone. Now its been been a couple months without enbrel or anything! No sign of p or psa. Im never eating a grain again! Am I crazy? Feels to good to be true.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Hi carle,

I wonder if you might have dermatitis herpetiformis (DH)?  DH is a skin condition associated with celiac disease.  the reason I thot of that is because you had a flare up from eating rice.  Rice has iodine in it and iodine makes DH symptoms worse.  DH is primarily a skin rash that is very itchy.

Anyhow, congrats on your PSA symptoms reducing!  That's great that you figured out a diet change to help it.

Open Original Shared Link

Of course it might not be iodine that made that change for you.  I just think it is interesting your symptoms flare from rice and people with DH have symptoms that flare from iodine.

Link to comment
Share on other sites
squirmingitch Veteran

Carl do you eat gluten free processed food made with rice flours? You know, cookies, crackers, cakes, breads, pastas?

Link to comment
Share on other sites
carle Rookie
2 hours ago, GFinDC said:

Hi carle,

I wonder if you might have dermatitis herpetiformis (DH)?  DH is a skin condition associated with celiac disease.  the reason I thot of that is because you had a flare up from eating rice.  Rice has iodine in it and iodine makes DH symptoms worse.  DH is primarily a skin rash that is very itchy.

Anyhow, congrats on your PSA symptoms reducing!  That's great that you figured out a diet change to help it.

Open Original Shared Link

Of course it might not be iodine that made that change for you.  I just think it is interesting your symptoms flare from rice and people with DH have symptoms that flare from iodine.

No DH just the psoriasis....so strange. To be clear, all my psa and p are gone.

Link to comment
Share on other sites
carle Rookie
55 minutes ago, squirmingitch said:

Carl do you eat gluten free processed food made with rice flours? You know, cookies, crackers, cakes, breads, pastas?

Pretty much whole foods. No processed food fo awhile now.

Link to comment
Share on other sites
squirmingitch Veteran

I say good for you!!!! There are many skin conditions associated with celiac disease so it's not too awfully surprising about the psoriasis but the psa must be an amazing relief for you! Congrats!!!!!

You might be interested in a Paleo diet.

Elana's Pantry has some outstanding recipes. She has both celiac disease as well as MS.

Open Original Shared Link

Link to comment
Share on other sites
GFinDC Veteran

Hi Carle,

Congrats on your symptoms going away.  I did seem to have reactions to rice for a while after going gluten-free.  But after some years on the gluten-free diet I can eat it again.  So reactions can change over time.

I was searching for an article on gluten in common store products, but didn't find it.  There was a group that did testing on some common grocery products like beans, rice, corn etc that we would normally consider to be gluten-free naturally.  But they found some level of gluten in some of them.  So it's not impossible to pick up something off the shelf that ought to be naturally gluten-free and find it is contaminated.  That may have happened with the rice you ate.  A quick rinse of water before using the rice might help.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



carle Rookie

Thanks everyone for your comments and support. I stumbled uppon this vid. Id be interested in what you guys think.

 

Open Original Shared Link

Link to comment
Share on other sites
GFinDC Veteran
4 hours ago, carle said:

Thanks everyone for your comments and support. I stumbled uppon this vid. Id be interested in what you guys think.

 

Open Original Shared Link

We can't see the video carle.  The site is banned from celiac com for spamming.

Not having seen it, I'd guess they are selling something?

Link to comment
Share on other sites
carle Rookie

Sorry - didnt realize you couldnt see it. Talked about all grains having gluten.  

Link to comment
Share on other sites
squirmingitch Veteran

Yes, there are other grains that have gluten but they don't have the TYPE of gluten that affects celiacs. Celaics can not have the gluten in wheat, barley, & rye. Corn has gluten but it is not the kind of gluten we react to. I actually use corn gluten in my garden as it prevents weed seeds from sprouting. LOL! Hey, it works great!

Read these:

Gluten is the name for the protein in grains. All grains contain protein that is theoretically gluten but people with celiac disease and most other gluten allergies only react to the form of gluten found in wheat (including spelt, kamut, triticale and all varieties of wheat), barley, and rye.

From:

Open Original Shared Link

 

I've run across another gluten urban legend that needs to be dispelled: the idea that people with Open Original Shared Link and non-celiac Open Original Shared Linkactually react to gluten in all grains, not just wheat, barley, rye and sometimes oats.

This just isn't true, despite what you might have heard or read. People who react to Open Original Shared Link found in Open Original Shared Link don't automatically need to avoid rice, corn, millet, sorghum and other grains.

From:

Open Original Shared Link

 

There are some unsavory sites out there in internet land that will tell you celiacs cross react to all grains. They generally have something to sell, a book, a video, some vitamins or other things. They use scare tactics to sell what they are selling. These claims simply are not true. If they were, then all the people on this site who have gotten well while not eating wheat, barley & rye but continuing to eat rice, quinoa, corn & so forth would not have gotten well; they would be dead by now & there would be no "old timers" on this site because they would have eventually died from eating grains other than wheat, barley & rye.

Celiacs can develop sensitivities to other foods, even foods like cabbage or lettuce or potatoes or even rice or maybe only brown rice but that does not mean they are reacting b/c of gluten in those things.

You may be doing great since eliminating rice from your diet and that is wonderful that you figured out that it affects you but that does not mean the rice contains the kind of protein that celiacs can not tolerate.

 
Link to comment
Share on other sites
manasota Explorer

Hi Carle,

I didn't really get much better until I eliminated all grains.  I'm diagnosed Celiac for 6 1/2 years and still do much better without any grains.  I don't do dairy either because it causes me pain.  (Never was lactose intolerant.  Dairy "just" causes me pain.)  I still stick to mostly whole foods.  I still would not call myself "well"; just doing the best I can.  I was diagnosed after 6 decades of ingesting gluten and am pretty sure I've had Celiac since infancy.

You definitely are not alone.  I just try to do my best, remain optimistic, and count my lucky stars that I don't have it worse.  

Just keep trying different foods until you find what works the best for YOU--as long as you remain gluten free, of course.

Life is still good.  Hugs to you!

Link to comment
Share on other sites
Caspi-Ann Newbie

There is a low starch diet that is paleo with reduced or eliminated starch for people with ankylosing spondylitis, or any of the spondyloarthropathies. It was developed by Dr. Ebringer in London so it was at first known as the London Low Starch Diet. You can find out more information about it at a support group called Kickas dot org. I have axial spondyloarthritis and I do much better not simply gluten free, but low starch (grain free, legume free, and reduced starchy veggies and fruit). Best wishes!

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,151
    • Most Online (within 30 mins)
      7,748

    Debbie Shetrit
    Newest Member
    Debbie Shetrit
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • CatherineWang
      I'm pretty sure that in stores, you can find plenty of gluten-free options. But they are usually a bit more expensive.
    • cristiana
      Hello @BunnyBrown and welcome to the forum. I cannot say that I have had the procedure you describe, but recently I did have general surgery and was routinely intubated.  That pain was what troubled me most after the operation, far more than the operation site.  It took a few days to really settle down, I was quite badly bruised. It was taking so long I was a bit concerned so asked the question on another forum. A few patients came back to me and said they had suffered the same.  I imagine in my own case possibly the throat got bashed about a bit,  maybe they had difficult inserting the tube?  I've suffered with a painful throat post-endoscopy too, but never as long as the intubation pain.   I hope you will be feeling better very soon.   PS BTW - love the name!  I saw this today in an Easter display in a shop and your name reminded me of it.🙂  
    • cristiana
      This wonderful, Anne. I think you have a point about why people disappear off forums.  I found the first few years post diagnosis a real struggle and frankly wondered if I would ever feel better (not to dishearten people, but just to say it can take a while longer for some folk to heal).  However, once my antibodies were back within normal range it really has made a big difference to my health.  I've chosen to stick around because I'm a Mod, otherwise I might have been one of those that disappeared, too!      
    • Exchange Students
      Yes absolutely, we work with all public schools and some private schools in all 50 states.
    • Scott Adams
      Just a quick question, can the host live in any state in the USA?
×
×
  • Create New...