357.Gluten intolerance Moderated discussion and help for gluten free, coeliac, celiac, wheat allergies or intolerance, Cookery and recipes part 12

Re: Gluten Intolerance and Ulcerative Colitis: from aimee on 2009-07-06

Hey Vinnie I have had uc for 14 years. Also on Remicade which only worked for a few months. I am also 100\% Italian. We seem to have alot in common. I have been on a gluten free diet for approx. 22 days.Have not seen any progress yet. I sure hope to. Good Luck to you

Gluten Intolerance and Ulcerative Colitis: from Rich on 2009-09-01

I had UC for many years until I had to have my colon removed and now have a j pouch. About 2 years ago my pouch was diagnosed with moderate to severe pouchitis. I was on a course of antibiotics almost 2 weeks after I went off. Not wanting to get a bag, I went gluten and dairy free. Also, added SCD yogurt everyday. I found that I feel much better and hardly ever get irritation like I used to WHEN I stay on this program. The challenge is not eating off this program. There is a book about the SCD(specific carbohydrate diet). I found this to be too restrictive, so I just went gluten and dairy free. I also monitor how i react to foods.

I am convinced from personal experience that gluten 'sensitivity' is very real and effects physical as well as mental/emotional issues

Re: Gluten intolerance and severe joint pain: from beatrice on 2009-09-08

I am so happy you posted this.

I was diagnosed with all kind of arthritic diseases and prescribed all kind of heavy meds. A genius rheumi doctor from Russia thought of running a genetic test for celiac disease as all the blood tests I ran in 30 years were always negative. It was an overnight relief (per say, compare to the years of suffering) getting rid of debilitating joint paint as my diet went gluten free.

I wish more doctor were aware of the link, my life has turned around and I can now make plans again, work, skip naps, travel etc

Gluten Intolerance and Ulcerative Colitis: from Loye on 2009-09-22

Thanks to everyone who has posted in this discussion. I was diagnosed with UC about 4 months ago. Had urgency issues, and uneasy stomache for about a year and a half before I went to a GI. He did colonoscopy and said I had UC confined to the distal end, so more like proctitis. Prescribed Canasa (mesalamine) suppositories. No real improvement after 2 months. Then, he added Proctocort suppositories. Still no real improvement.

Here's the kicker. My dad has had definitely diagnosed CD for the past 25 years. This GI doctor refused to run celiac testing because I am overweight! He said if I had it, I would be a stick. I don't believe him, not with all I've read on the internet from reputable sites (Mayo Clinic, GI sites,etc.)

I have my next appointment with him in 3 months. I am going strickly gluten free until my next visit. We shall see what happens. After reading some of these messages, I have real hope that I can manage this. I have the advantage that I understand the GF diet very well, having cooked for my dad for years

Gluten Intolerance and Ulcerative Colitis: from Loye on 2009-10-11

Update: I've been gluten free for nearly a month, and what a difference. I can't say I haven't had a "bad day", but I'd say I am already 90\% there! I am using the Canasa and Proctocort, alternating days, and after another month or two more on the gluten free diet, I'll try to do without them.

I can't wait to tell this doctor in December. He'll brush it off, but I don't care. We need to be our own advocates. I wouldn't say my doctor doesn't care, I just think a majority of doctors don't care enough to look into what is working for people, even if they didn't learn it in medical school. As long as it does no harm, it's the results we're after isn't it

Re Gluten Intolerance and Ulcerative Colitis: from Jessi on 2009-11-05

I was diagnosed with ulcerative proctitis and just last week diagnosed also with inactive colitis. I insisted on a blood test for celiac which came back negative but that I have read isn't surprising.

I don't believe in relying on drugs to mask these symptoms so I started on a gluten free diet 4 days ago and I haven't felt this good in 3 years! I totally believe that I am gluten sensitive or have celiac. I believe that this undiagnosed sensitivity has caused the colitis. Even though I am just new to this gluten free diet I am so happy and proud of myself.

In my opinion doctors don't "want" to test and diagnose for celiac or gluten sensitivity because there is no drug that they can prescribe because its all about diet. It's easier for them to label it IBS or colitis

Re: Gluten Intolerance and Ulcerative Colitis: from Tom Contini on 2009-11-06


I've been in a bad way, ever sence 93' active duty army, v.a. called it different stuff, but it was figered out in 2000 that it was ulcerative colitis by a civilian doctor. I was put on asacol and think that its great, but it relieves the pain and relapes.( up to 12 pills a day)but I dont think i can live on this so to make this short im o pos blood and eating for my blood type no gluten no recordable results yet but feel better and loss of pounds. but i do beleve it is true ate wheat bread allways, and its in everything

thanks good by

Re Gluten intolerance and Pain: from Janette Ingham on 2009-11-12

THANKS for this support!

My (previously healthy) 15 yo daughter has just been through 6 months of suffering beginning with a stomach wog, then prescribed Flagyl (antibiotics), then they discovered Blastocystis Hominus a relatively common amoebic creature, so she was treated with 5x loads of antibiotics inserted as an enema. Her symptoms only worstened, cramps, reflux, undigested bowel movements. Then I found the symptoms of gluten intolerance online (no doctor came up with it) and (praise God) after 4 days off it the pains have gone away. However, she's sad her diet has to change, I'm hoping it won't be permanent.

Regards, Janette

Date Nov 2009

Re: Gluten intolerance and severe joint pain: from Tina on 2009-11-21

I can not believe I found this information. I have twins, one with autism, soon to be 8 years of age. Tried to use the GF/CF diet at 4 years of age. Unable to continue this because of the texture aversion and very limited foods. I continued to let my child eat what would go into his tummy. He began severe toe pain over a year ago. 2-'09 I took to a new pediatrician and she said Plantar Fasciitis ( pain would be in heal of foot from this). Wanted feet x-rays, mentioned arthritis and broke bones. Pedia. told me this toe pain and rubbing toes and screaming in pain from my child was all aggressive behaviors, told her my son went the opposite way and has never had aggressive behaviors. Told me that she saw my son jumping on his feet while at her office with my husband and that if he had toe pain he wouldn't be able to jump. I replied that well if you think that then what makes you think he may have broke bones in feet and requesting x-rays? I made her angry at me by saying this and she wrote me a nasty 3 page letter stating that I had a psychiatric disorder and sent copy to our new pedia. and we had a one hour conversation with him in which he told us he thought previous pedia. was stating maunchausen. My son recently began to have full blown allergic reactions after eating boxed cake mix. I took to allergist who said allergies have nothing to do with toe pain. Last week I got x-rays by podiatrist and his feet and bones are perfect. I am sick to my stomach that this doctor has done this maunchausen thing against me. I really don't care what they think of me , I just want my child to be pain free. I can deal with the autism. Because my child is non-verbal and unable to describe his pain with words is why we have been treated this way. Can someone please tell me where to find the scientific researched info. for joint pain in children with gluten intolerance. I am so grateful to the person's who posted this information

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