Crohn's And Celiac?

[Chiron]

I have been poking around and have seen a couple of other threads on Crohn's and Celiac so I know there are several of you (us?) out there. In 2005 I was diagnosed with Crohn's after an abscessed mass in my terminal ilium was surgically removed, the biopsy showed the Crohn's pattern of inflammation. In 2008 I was diagnosed with Celiac (biopsy confirmed). However, when I was diagnosed with Celiac my GI doc said he thought that I had simply been misdiagnosed with Crohn's and I only had Celiac all along. After 4+ years of Gluten Free living I am still having a lot of problems- diarrhea on a weekly basis, body aches, fatigue, not able to digest foods (beans, nuts, lettuce, corn etc.), still deficient in Iron, Vitamin D, and B12. I am wondering more and more if my doc is wrong and I am actually dealing with both conditions. I had an endoscopy and colonoscopy in January following an obstructed bowel. Report said no celiac damage or signs of Crohn's inflammation, or obvious reason why things stopped working.

Any advice out there? Part of me says I just need to double down and make sure I am not getting inadvertent gluten- but the biopsy showed no signs of villi damage (most recent Celiac panel also looked good). I am already very careful, so I am not sure what this would mean other than restricting myself to only eating inside my home with no processed foods (that aren't certified). Or do I follow the Crohn's path with a second opinion? I have a GI appt coming up in August but I am pretty certain he would discourage the Crohn's idea. I saw a post that said its pretty hard to mistake Crohn's and Celiac b/c they affect different parts of the bowel and in different ways- but wouldn't a GI doc know this?

I am so tired of being sick all the time no matter how hard I try to follow the gluten-free diet. When I get sick seems to have no rhyme or reason- I am sick now and haven't eaten anything I didn't cook myself in the past 2 weeks.

I'd really appreciate any advice from folks who have had to tease out these two diagnosis.

Thanks!

[Newbee]

Have you thought about trying the specific carbohydrate diet? It is recommended for celiac, crohns, and ulcerative colitis. It is very restrictive but I wonder if it might help. There is lots of info on this board and the intranet on it if you are interested. I'm doing it now and it seems to be helping with problems being gluten free is not clearing up.

[GlutenFree-MLDub]

I don't have Crohn's, but have a couple friends who do. They tend to eat gluten free when they're having flare-ups, but said that honestly, when they're having a flare-up, it doesn't matter what they eat, it doesn't get better. And when they're NOT having a flare-up, it ALSO doesn't matter what they eat. Seems frustrating. One of them used to take the medication, the other one currently does. The meds can be dangerous though as I'm sure you know.

Have you tried taking glutamine and probiotics regularly? They could help you heal and stay healthy. My doc has me doing both right now since I've just finally gone fully gluten free. I would think it would help with healing from Crohn's as well.

If you're being gluten free, I would think you may have another sensitivity/intolerance. Consider: soy, other grains/corn, dairy, eggs. Do your symptoms correlate to ingesting any of these or other foods?

I hope you feel better soon!

[GFinDC]

Hi Chiron,

Bowel obstruction sounds like Crohn's to me, but I am no doctor. If you check the signature lines of people here, there are many other foods besides gluten that can cause us problems. Soy, corn, nightshades, eggs, dairy, all are possible issues plus any other food for that matter. The usual thing is to do an elimination diet and see if you can find the culprits. There is often more than one a bad food to identify. So the way to do it is start with a small number of foods (5) and add slowly one a week. Starting with a couple weeks of just the 5 foods to get things settled. Sweet potatoes, lamb, oranges, green beans and peas might work. Try to pick things you don't usually eat though. Not foods that you know make you sick, but foods that are unusual for you.

My brother had Crohn's and celiac. One of his favorite treats was peanut butter fudge.

[Chiron]

Thanks for the advice so far. I think I will try a modified elimination diet and see if there is anything else food related. I have heard that many people with Celiac have other intolerances. To be honest I am not looking forward to it- my diet is very carb/grain heavy. I eat a lot of gluten-free breads, rice, gluten-free pasta, and potatoes. I am one of those folks who was raised on processed foods and not eating many veggies and have never acquired the taste or learned how to cook them well. I am not confident I can cut back to 3-5 foods- but I will at least try to cut the major allergens and grains.

I am worried that I won't get enough nutrients though. I am very active and need calories. I also battled an eating disorder when I was younger- so restriction is touchy for me.

[Newbee]

I don't do soy or any grains (these are restricted on the specific carbohydrate diet). I do very little dairy (only hard cheeses currently). The diet seems to be helping me. It is just hard to stay on due to the little variety that I am getting currently. I have tried probiotics and glutamine and neither seemed to help me unfortunately.