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No grains at all?

carle

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carle Rookie
carle
Posted

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.

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GFinDC Veteran
GFinDC
Posted

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.

squirmingitch Veteran
squirmingitch
Posted

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

carle Rookie
carle
Posted
  • Author
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.

carle Rookie
carle
Posted
  • Author
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.

squirmingitch Veteran
squirmingitch
Posted

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

GFinDC Veteran
GFinDC
Posted

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.

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carle Rookie
carle
Posted
  • Author

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

 

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GFinDC Veteran
GFinDC
Posted
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?

carle Rookie
carle
Posted
  • Author

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

squirmingitch Veteran
squirmingitch
Posted

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.

 
manasota Explorer
manasota
Posted

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!

Caspi-Ann Newbie
Caspi-Ann
Posted

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!

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