MAJOR improvements in all my UC symptoms by going gluten free!

I just wanted to add a quick update, as it has been perhaps a bit more than 1 month since I've gone exclusively gluten free. My joint pain disappeared at about week 2, along with the nearly debilitating headaches that were related to the constantly floating joints in my cervical spine.

Before I say anything else, I cannot emphasize strongly enough that I was tested for celiac, as this was my FIRST suspicion when my symptoms began in 2005, and I am assuming it was the generic old school celiac test, and it was negative. My improvements have been so dramatic, that I do believe I would test positive for one of these more modern gluten intolerance tests, but I did choose to just continue going gluten free instead of resuming eating gluten in order to get testing. I made this decision in large part because I was having very disruptive IBS symptoms that I really REALLY was sick of dealing with.

I was diagnosed with active UC and some signs of gastritis by colonoscopy and endoscope in 2006 after having been admitted to the E.R. I tested negative on two occasions for parasites on stool testing.

I am currently on Roxanne generic balsalazide, due to the fiasco with Colazal not being available. Several years back, my insurance auto-switched me to this generic and I didn't realize until after 1 year that I was getting a ton of leakage/mucous, gas, and I believe was losing weight and generally not doing as well.

This time, I seem to be doing quite well. My improvements include full relief of what was tormenting joint pain which always to me resembled the symptoms of Ankylosing Sponylitis (which I went to a rheumatologist to be tested for and xray showed no sign of). The related disabling headaches also ceased. My joints feel "tighter" like the skeletal muscles have beefed up after 5 years of emaciation.

Anxiety and negative thoughts have gone away.

I can count on one hand the number of loose stools or anything resembling diarrhea I have had since going gluten free. Since I have seen anywhere between an 80-100% improvement across my symptoms by going gluten free, I truly believe that another food allergy is behind the remaining stubborn 10-20% (ie the rare loose stool now). I am particularly suspicious of Dairy, and in particular Casein. The other night I had a glass of Lactaid milk and felt a flush of nerve like pain in the stomach. I plan on getting an extensive food allergy test once I find out a trustworthy route to do this.

The insidious emaciation that occurred over the course of my UC is reversing. I am regaining fat deposits in my face and upper back that mysteriously vanished upon the onset of my UC. The fat around my eyes is back, and I no longer have that sunken eye appearance that I had for 5+ years. I am beginning to resemble my old self again.

My skin problems seem to be going away as well.

Also, I was getting terrible leakage after/during eating that was getting out of control. This had led me to using Canasa, which I noticed was helping eradicate this, but as soon as I stopped taking it, it would come right back. Likewise, while I remained on Canasa, the what I would describe as proctitis type pain during bowel movements would go away. However, since going gluten free, I have not even been taking Canasa because I can't be bothered about it and these leakage issues have pretty much gone away as well. (I still have cases of the "million-wipers" but I think this might be due to the Balsalazide making my stools mushy - as I remember this didn't happen until I was DX with UC and put on Colazal).

I highly recommend all and sundry to read the following:

"Wheat Belly" by William Davis M.D.

and "Dangerous Grains" by James Braly M.D. Ron Hoggan M.A. and Jonathan Wright

There may be other good books in this arena, but these two are VERY relevant. I can't tell you how badly I wish I had known about this 5+ years ago! The thing that threw me off was having been tested negative for celiac in 2005, from a GI that I found by surfing the web for celiac disease.

I am not embarking on an academic discussion of UC or whatever, I am not even going to speculate on words like "cure" but in my situation, every day seems to be telling me that gluten and or possibly additional food allergies (for which I also heavily suspect genetically modified foods) are the cause of my UC.

I have posted here for the last 5 years, so I am not a one-time poster. You can click on my name and search through all of the fun times this disease has given me!

[edit 2/24/12: The other symptoms which have improved or gone away are: I used to have a feeling of discomfort, call it like a blood pressure type dull ache, or a feeling of hemorrhaging (like when your gums bleed) particularly at night laying in bed - this symptom went away almost immediately. The other symptom that is probably 85% reduced are the muscle twitches that I would get all over my body, especially in my legs and especially at night. Again things are not 100% perfect for me, but these have been SIGNIFICANT improvements for me]

Hope this helps someone!

Post Edited (doors12) : 2/24/2012 7:37:38 PM (GMT-7)

That's good to hear that you are doing well. I've often thought about going gluten free too, just to see if it makes a difference in my skin and joint issues. I've read that a gluten intolerance, perhaps even Celiac, can cause little watery blisters. I tend to get a lot of small blisters on my legs but they come in waves. I will get them all of a sudden and as quickly as they show up, they disappear again. I also get a lot of rashes of unknown origin.

Perhaps, I will explore this path further. Thanks for sharing!

     Congrats!  I tried the gluten free diet shortly after I was diagnosed, but still flared .  Hope it keeps working for you !!!

Thats great news doors12!! Since I went gluten free / and SCD diet, I put myself in remission! My mom was researching heavily on gluten tests, and how there are three different methods of testing to determine gluten intolerance, and a cileac test is 100% separate. I did a cileac test last month (as a few extended family members have cileac disease) and I still got a negative. But like I said, going gluten free was the best thing I could've done! Congrats

Thanks for the feedback. Things aren't perfect, but like I said its been about 80-90% improvement overall on my symptoms that coincided with my dx with UC, joint pain, IBS, diarrhea, etc.

I am now on the generic Colazal, since the brand name is no longer available, and I am having to monitor how I'm doing, as the Roxanne generic didn't do me very well before. I think the only reason I am doing well is because of having gone gluten free. I just filled an RX for the Mylan generic to try that out also.

Thanks for the feeback, Slimcook, I am trying to figure out how to integrate how I've achieved more of an improvement going gluten free than I did with any medication with the fact that things aren't 100% fixed...yet.

Of course, I think any of us would be happy with an 80-90% improvement, but it's even more fascinating to think what information does that 80-90% improvement provide for curing the remaining 10-20%?

I hope we can keep this thread going, because it is obvious that more than a few people diagnosed with UC are getting significant benefits out of the gluten free diet.

That's great to hear!

Did your doc ever test you for Celiacs disease? All 4 GI's I had tested me for Celiacs due to the symptoms being so similar (even though they all knew I had CD as it was very apparent with my symptoms) the standard where I live is GI's testing possible IBD patients automatically to rule out Celiacs.

There are other foods that cross react to gluten, diary is one of them. There is more information in the articles in the links below. The first article is called the many faces of gluten the masquerader of disease and symptoms. And the second article states that diary and gluten have similar structures which cross react the same way in the body, they both cause inflammation.

http://intmedny.com/blog/2011/07/15/the-many-faces-of-gluten%E2%80%A6masquerader-of-disease-and-symptoms/

http://thyroidbook.com/blog/page/6/

Post Edited (deepblue sea) : 2/26/2012 1:35:38 PM (GMT-7)

I too experienced great improvements from going gluten free. The gold standard for diagnosing celiac disease is a biopsy from the small intestine through an endoscopy. if you have celiac then your villi (little hair-like structures on the small intestinal lumin) will be flattened due to the damage from your immune system reacting to gluten -this is GLUTEN ALLERGY. I had one done and it came back negative.

However some people react to gluten because it causes issues but not quite enough to causes villi damage: this is called GLUTEN INTOLERANCE. For example, gluten containing foods increase intestinal permeability and gassiness and mucous. So if you already have a sensitive gut with a condition like UC then having gluten will worsen this.

Im interested though: Do you people who follow a GF diet ever consume small amounts of gluten like just one bisdcuit or a slie of cake on any day? or do you refrain from gluten all together?

The reason i ask is because i recently over the last 2 months started cheating and having things here and there and what do you know i came down with a proctitis flare (back to strict diet now though and rectal meds and slowly getting there).

Also, there is no way to test for food intolerance (only food allergies). The only way to find out if you have an intolerance towards something is by doing an elimination diet through a registered dietitian. She will then make you go throuugh challenges, a wheat challenge, dairy challenge etc to see if you react to them. I know that because i myself am a dietitian.