Round And Round We Go

[moonunit]

Just posting in case this information helps someone... got my Enterolab results back and they say positive for gluten intolerance (and lactose intolerance) with no sign of Crohn's. Now I have nine opinions, and we're 3, 3, and 3.

BUT, something else has changed! As I started Week 9 of being gluten-free, something amazing happened. The D stopped! I have been walking, not running, to the restroom since last Saturday, and I've been doing so only 1-3 times per day instead of 5-7 times. All this time I've had ups and downs but never this many days in a row this healthy! It's so weird not to be chained to the restroom I feel like I'm walking out the door without my purse or something. Amazing.

But here's the kicker. I changed a couple other things at the same time as I got better. I stopped going to restaurants, thinking my cc risks were too high, AND I stopped drinking carbonated beverages. So maybe the gluten-free diet finally kicked in, or maybe with my resection I simply can't tolerate carbonation and have been unknowingly causing this all myself. Maybe I have an allergy to artificial sweeteners.

Then right in the middle of this experiment, the Enterolab results come back positive for gluten intolerance. Officially, we have three doctors who say Crohn's but not celiac, three doctors who say neither Crohn's nor celiac, and three test results (but zero humans) who say celiac/gluten intolerance but not Crohn's.

When I wasn't feeling any better on the diet, I was a huge skeptic. Now I'm a lay-scientist with a renewed interest in what might be fixing the problem. Whoa, maybe it CAN be fixed after all. One thing I do know: it's not a prescription drug curing me like all the docs said I'd need. I am not on ANY prescription meds. So something in my diet can fix the problems, at least temporarily. Is it going gluten-free? Is it carbonation? Artificial sweeteners in diet sodas? Was it my lipstick, the restaurant food, just coincidence?

Who knows. But if I can stay well, I'll do what it takes to keep this going. Whether the good times keep going remains to be seen. I just wanted to tell people who are on the diet for 6, 7 weeks that maybe keep trying, maybe in the end healthy will happen. I certainly never expected to wake up one morning and boom, have this many good days in a row, more than I've had in years.

P.S. -- Living off the amazing awesome goodies handed out at the celiac walk probably doesn't hurt, regardless of my gluten status! That stuff is fantastic and the walk was just wonderful! Attend one if you can!

[Ursa Major]

Wow, I am glad for you! Maybe you have gluten intolerance AND can't tolerate carbonated drinks/artificial sweeteners? I have many intolerances, many of which would cause diarrhea. Gluten is only one of them.

Whatever you're doing now, keep it up, it's working!

[nannyb]

Moonunit

Glad to hear that you are feeling better. I too had diagnosis of Crohn's but in my case they went from Crohn's to Ulcerative Colitis to Ulcerative Proctitis (sp?) What I don't have is a diagnosis of gluten intolerance but since I feel 100% better when I stay off the gluten even the lack of biopsy results won't convince me otherwise.

Personally I think that they will eventually find that Crohn's is a manifestation of gluten intolerance. If it can cause villi to die and rashs on the skin why not lesions in the colon and other areas in the digestive tract.

An large number of people seem to have been diagnosed with Crohn's and then celiac later.

NannyB

[Guest greengirl]

... got my Enterolab results back and they say positive for gluten intolerance (and lactose intolerance) with no sign of Crohn's.

Just wondering...how do you know that the Enterolab results showed no sign of Crohn's?

I'm in a similar situation - my Enterolab results show that I have 2 copies of the Celiac gene (DQ2) and elevated IgA. But I also have small intestinal ulcerations which could indicate Crohn's. I don't really have the symptoms of Crohn's, though, and since going gluten free I am much, much better with NO diarrhea at this point. My doctor doesn't know which it is and admits that the gluten could be responsible for the lesions - he just doesn't know.

NannyB - I was so glad to hear your theory on gluten intolerance manifesting as lesions, instead of villi atrophy, because this has been a suspicion of mine, as well. There is so much that is unknown - a lot more research needs to be done!!

Christine

[ravenwoodglass]

Just posting in case this information helps someone... got my Enterolab results back and they say positive for gluten intolerance (and lactose intolerance) with no sign of Crohn's. Now I have nine opinions, and we're 3, 3, and 3.

BUT, something else has changed! As I started Week 9 of being gluten-free, something amazing happened. The D stopped! I have been walking, not running, to the restroom since last Saturday, and I've been doing so only 1-3 times per day instead of 5-7 times. All this time I've had ups and downs but never this many days in a row this healthy! It's so weird not to be chained to the restroom I feel like I'm walking out the door without my purse or something. Amazing.

But here's the kicker. I changed a couple other things at the same time as I got better. I stopped going to restaurants, thinking my cc risks were too high, AND I stopped drinking carbonated beverages. So maybe the gluten-free diet finally kicked in, or maybe with my resection I simply can't tolerate carbonation and have been unknowingly causing this all myself. Maybe I have an allergy to artificial sweeteners.

Then right in the middle of this experiment, the Enterolab results come back positive for gluten intolerance. Officially, we have three doctors who say Crohn's but not celiac, three doctors who say neither Crohn's nor celiac, and three test results (but zero humans) who say celiac/gluten intolerance but not Crohn's.

When I wasn't feeling any better on the diet, I was a huge skeptic. Now I'm a lay-scientist with a renewed interest in what might be fixing the problem. Whoa, maybe it CAN be fixed after all. One thing I do know: it's not a prescription drug curing me like all the docs said I'd need. I am not on ANY prescription meds. So something in my diet can fix the problems, at least temporarily. Is it going gluten-free? Is it carbonation? Artificial sweeteners in diet sodas? Was it my lipstick, the restaurant food, just coincidence?

Who knows. But if I can stay well, I'll do what it takes to keep this going. Whether the good times keep going remains to be seen. I just wanted to tell people who are on the diet for 6, 7 weeks that maybe keep trying, maybe in the end healthy will happen. I certainly never expected to wake up one morning and boom, have this many good days in a row, more than I've had in years.

P.S. -- Living off the amazing awesome goodies handed out at the celiac walk probably doesn't hurt, regardless of my gluten status! That stuff is fantastic and the walk was just wonderful! Attend one if you can!

I am so glad you are feeling better and not giving up on the gluten free diet. It takes time for a lot of us to get relief I am so glad you have stuck with it and it payed off. I was so happy when my D stopped I never expected my arthritis, fibro and neuro problems to be relieved, but they were also - it just took about 6 months to heal. My GI, after my diagnosis apologized and said my symptoms were not IBS symptoms but Chrons, (wake up with violent cramps and mucousy D every damn night at 2 am for 3 hours for 5 years after 10 years of severe daily IBS). I asked him why he didn't listen when I told him what was going on and he had no answer. Perhaps all the doctors in my small town had already clued him in that I was a hypochondriac. Anyway, I am glad you are listening to your body and so happy for you I could dance......................, well cat thinks I'm crazy cause I just pranced around the computer room for you. ((((((hugs)))))

[moonunit]

Just wondering...how do you know that the Enterolab results showed no sign of Crohn's?

I got the Crohn's test from them at the same time. You're right, the celiac test would not indicate this... but since several doctors insisted that I had Crohn's despite all tests up to that point being negative, I figured the extra $50 for that test would be worth it in the grand scheme of things.

I still might have Crohn's (too? instead?) but perhaps it is in remission? Who knows. The whole thing is just a big guessing game anyway!

Thanks to everyone for the replies and good wishes! I'm really enjoying this feeling of renewed health, even if it does not keep going!