The 2 Depressing C's: Colitis and Celiac

[ryleigh]

Hi,
I am new to the forum and looking for any advice/help regarding Celiac and lymphocytic Colitis. I was misdiagnosed for 5 years and recently found out I actually do have Celiac (after three doctors told me I do not). Now along with Celiac I was also diagnosed with Lymphocytic Colitis. I have been gluten free for a year now with no relief. After my initial Lymphocytic colitis diagnosis I was put on entocort with no relief and then on pepto with no relief. After the diagnosis I moved to NYC for work and now am in the process of establishing a new GI doctor. I went to Dr. Cohen the other day at Concorde medical group and have now been asked to complete even more tests. My goal in establishing a new GI in NY was to hopefully be referred to a nutritionist that can work with me on diet since medicine did not seem to work in the past. Dr. Cohen said he would gladly put me with a nutritionist but he wants to complete other tests first to make sure I even still have colitis. This was all very disappointing because I felt like I finally got a diagnosis and now it could be different. I discussed that I have been on the SCD diet minus dairy for over a month now and have not seen any change, he did not acknowledge the diet of course. He did a blood test while I was there and it came back positive for a peanut/sesame allergy.

All in all I am at a loss, I felt like going on this strict SCD/Paleo diet would help with my diarrhea/non-bulky stools, pure exhaustion, muscle pains but I have not seen any relief yet. I have only felt worse and more depressed because now I can't eat much and am not feeling any better. Has anyone else had the same non-result when starting paleo/scd? Am I doing the wrong diet?

 

[Beach]

Hi Ryleigh, welcome to the forum.

It seems we are in a similar boat! I have microscopic colitis, and eat a paleo/gluten free diet. (Hmm... come to think of it I also tested positive for a peanut allergy). What I found is that the paleo diet didn't solve my gut issues. Several of the health problems remained. The diet did help me in some ways though such as lessening cramping, improved energy, improved dental health etc.

Of late I've found further relief by eating a limited diet, more or less using paleo ideas as the base for what I eat. Along with a limited diet, I'm also writing a food journal, recording most meals of what I fix along with how I feel.

A couple threads that might be of help are David's, were he talks about how he gained remission.

"My holistic treatment diary for Lymphocytic Colitis"

http://www.crohnsforum.com/showthread.php?t=43814

& my thread on how I'm feeling better. It's a work in progress, but it can be seen at:

http://www.crohnsforum.com/showthread.php?t=48760

Good luck with the new doctor. Hope you find relief soon.

 

[Jennifer]

Hi ryleigh and welcome to the forum!

Its actually pretty common for a new GI to want to run their own tests not just to make sure that you do in fact have a particular health condition but also so they know how bad things are inside so they can provide the best treatment possible for you.

The only medication you've mentioned thus far is Entocort (I'm curious what the dose was and how long you took it). There are other medications out there used to treat Lympocytic Colitis such as Prednisone, Mesalamine, Questran, Azathioprine, 6MP, and Methotrexate. http://emedicine.medscape.com/article/180664-treatment

I imagine the reason why your GI didn't respond to you mentioning the SCD diet is because you haven't shown improvement with it. Its good that they are willing to refer you to a nutritionist as well so you can tackle this on all fronts.

Have you had your vitamin levels tested recently or at all? Being low or deficient in certain ones can cause symptoms like fatigue, body aches, head aches, depression etc. Also try to stay hydrated as much as possible since you're losing a lot of water when you have diarrhea. Dehydration can also cause muscle aches and fatigue.

Here's a little extra information from the forum wiki that may benefit you and that you can also share with your GI:
"There is an increased risk of Lymphocytic Colitis in persons with Celiac Disease and is estimated to be approximately 50 fold. This risk appears to be greater in middle aged women. Researchers suggest that persons with Celiac Disease (middle aged women in particular) who adhere to a Gluten Free diet but continue to have symptoms of Diarrhea, should actively investigate whether a diagnosis of Lymphocytic Colitis may be warranted." http://www.crohnsforum.com/wiki/Lymphocytic-Colitis

Keep us posted on how you're doing.

 

[HannahR]

Don't give up hope! It seems like many of us go through these things that don't work for these illnesses until we find the one that works best for us! Have you looked into Jini Patel Thompson's books? I have been following her protocol and have been symptom free for 4 months and I am dosing off of all my medication. I hope you check her out! You can just type in Listen to Your Gut on a search engine. If you want any more information I would love to help! These illnesses can be so stressful at times but I feel we are blessed with them to make us stronger! You will be in my prayers!