Do I really have colitis?

So I am one of those people that responds very well to the SCD diet. This means that when I am on the diet, I need no drugs and I get no flares whatsoever. However, if I ever cheat by eating illegals, then over time, symptoms of colitis arise (including blood, mucus, frequent BMs, etc) and I go into a flare. I noticed that in the past 8 years that window of time between cheating and getting a flare has shortened. Initially it was 2 months, then one, and now it could be as short as a few days depending on the illegal I ate. Regardless, no matter how big a flare, if I go back on the basic diet I do return to normal in a couple of weeks time (this is often accompanied by really bad migraines during the return to remission). I have done this cycle about 20 times or so over the past 8 years and each time is like clockwork.

I have gone to a GI specialist and had several endoscopies done, the problem is that if I have it done when I'm properly on the diet, then the doctor can find absolutely nothing. Only once did I purposely go into a flare to have the endo done and lesions on the colon wall could be clearly seen.

So this makes me wonder, do I really have colitis? Is it just some weird dietary thing that give symptoms that resemble colitis? The funny thing is everything in the SCD diet works for me to the letter. If it was said that such and such is an illegal food even though it makes no sense that the food should be an illegal, it will eventually lead to symptoms.

I am wondering if my experiences with this disease make me more amenable to a fecal transplant since it appears to be so linked to food processing for me. Is anyone else like this?

Thanks.

Were you ever scoped during a flare? Just curious to how you think you have had colitis then. The SCD does work for a lot of people. I have been on it for a month not, however I'm on a small amount of predisone. I have noticed a big difference.

The sad thing about IBD and research is, that they simply do not think the two are related, therefore don't spend the money to do the research and correlation of diet and IBD.

How can they not! When people such as yourself have success with diet and so many others. Have you ever tried to rule out Celiac disease? Or done allergy tests? That may be your next step. Consider yourself VERY lucky that diet works for you.

TrinitySierra said...
Were you ever scoped during a flare? Just curious to how you think you have had colitis then. The SCD does work for a lot of people. I have been on it for a month not, however I'm on a small amount of predisone. I have noticed a big difference.

The sad thing about IBD and research is, that they simply do not think the two are related, therefore don't spend the money to do the research and correlation of diet and IBD.

How can they not! When people such as yourself have success with diet and so many others. Have you ever tried to rule out Celiac disease? Or done allergy tests? That may be your next step. Consider yourself VERY lucky that diet works for you.

Yes I did once during a flare and mild inflammation was found near the top of the rectum only, but there was no formal diagnosis of UC. I was given drugs but didn't take them since the diet worked so well. The Celiac was tested and came up negative.

You could possibly have food allergies. Which do cause symptoms similar to UC. However, the only way to be certain is to get a biopsy when you have inflammation. Good Luck!

brucen36 said...

TrinitySierra said...
Were you ever scoped during a flare? Just curious to how you think you have had colitis then. The SCD does work for a lot of people. I have been on it for a month not, however I'm on a small amount of predisone. I have noticed a big difference.

The sad thing about IBD and research is, that they simply do not think the two are related, therefore don't spend the money to do the research and correlation of diet and IBD.

How can they not! When people such as yourself have success with diet and so many others. Have you ever tried to rule out Celiac disease? Or done allergy tests? That may be your next step. Consider yourself VERY lucky that diet works for you.

Yes I did once during a flare and mild inflammation was found near the top of the rectum only, but there was no formal diagnosis of UC. I was given drugs but didn't take them since the diet worked so well. The Celiac was tested and came up negative.

brucen36,
Did you ever get a formal diagnosis of ulcerative colitis? You say you have stayed in remission for 8-10 years (each time you 'cheat' you said the healing time got shorter). Now, you're not on SCD but said it worked to keep you in remission.

Pardon my being frank: Are you in a country or region which can properly diagnose ulcerative colitis? I thought it was pretty well understood GI's could determine that.
I would demand a better GI if you are not certain you have UC.

You said if you cheat from SCD you have flares. Please describe what cheating is. Are you talking one saltine cracker or coming off all SCD 'allowed' foods for several days or weeks or more?

More detail would really help me.

Thank you

Trinitysierra: it's not true what you said, "The sad thing about IBD and research is, that they simply do not think the two are related, therefore don't spend the money to do the research and correlation of diet and IBD." the SCD business (and other 'naturals') are raking in so much money. Naturals are a multi $B business without having to verify efficacy, interactions with other drugs and side effets.
Universities, doctors, governments and hospitals long ago started more studies which include more people. The problem with diets and supplements and studying them on humans (versus rats) is that there is little control to rule out nutrition, genetics, stress, activity levels, cheating, etc. But, several studies began years ago and more are coming.

Yes I had a new colonoscopy done last week. It surely is colitis now. In fact it spread from rectum only to the entire colon now. I started taking Mesavant and that appears to be helping a lot. I'm still doing the SCD now, but I may consider going off of it since it appears to have stopped working now. On the other hand, I may continue SCD because it may still help minimize inflammation.

Post Edited (brucen36) : 3/10/2015 10:41:21 AM (GMT-6)