Should I Be Gluten Free?

[candacelynn]

Hello everyone, I will try and make this quick but it's a long story. In January of '09 I was hospitalized for a gallbladder surgery which was supposed to fix the gastro distress I was having. I couldn't even get out of bed except to go to the bathroom. Anyway they did the surgery and things continued to get worse. I was putting out 7 liters of fluid a day. The local doctors thought it was celiac but I tested negative and they had me on a gluten free diet. They sent me to Froedtert Hospital in Milwaukee where they diagnosed me with total villi atrophy. They also told me I had celiac from the slides they viewed from the other hospital from my ugd. However they repeated the ugd to confirm 2 weeks later after being on the gluten free diet with no change. They said it was not celiac that it was Nongranulomatous Chronic Idiopathic Enterocolitis and that there was more damage than there had been before so they took me off the gluten free diet. To make a long story short I've been on prednisone, 6mp, and remicade for the last 1 1/2 years. It's caused more harm than good to the rest of my body but my small intestine has started to heal but I still couldn't get rid of the steroids. So the GI and I decided I should go gluten free again just to see what happens. So I did and I have been able to get down from 60mg of steroids to 7mg and I am still tapering. However I have been retested for celiac in Milwaukee and I only had one of the lower genetic markers. Though some of my family members have celiac. I guess my question is do I stay gluten free for the rest of my life, or is this just a mental thing. The evidence seems there to me. But it's not something I want to do if I don't have to. I don't wish this on anyone. Any advice on whether it sounds like I should be gluten free?

[Skylark]

Hello there.

Blood markers in celiac disease are notorious for being falsely negative. The single largest risk factor for celiac is a first-degree relative with it. It only takes one of the genetic markers to increase your risk for celiac, and you say you responded well to the gluten-free diet. I don't think the second EGD two weeks after going gluten-free indicates a problem with the diet. Two weeks is enough for some people to feel a little better, but not long enough to heal villous atrophy.

As you mention, tapering the steriods is solid evidence for the helpfulness of the diet and very important for your long-term health. It's not "in your head" that the diet is helping if you're able to taper off a strong med.

If I were you, I would go gluten-free for life.

[mushroom]

Hello everyone, I will try and make this quick but it's a long story. In January of '09 I was hospitalized for a gallbladder surgery which was supposed to fix the gastro distress I was having. I couldn't even get out of bed except to go to the bathroom. Anyway they did the surgery and things continued to get worse. I was putting out 7 liters of fluid a day. The local doctors thought it was celiac but I tested negative and they had me on a gluten free diet. They sent me to Froedtert Hospital in Milwaukee where they diagnosed me with total villi atrophy. They also told me I had celiac from the slides they viewed from the other hospital from my ugd. However they repeated the ugd to confirm 2 weeks later after being on the gluten free diet with no change. They said it was not celiac that it was Nongranulomatous Chronic Idiopathic Enterocolitis and that there was more damage than there had been before so they took me off the gluten free diet. To make a long story short I've been on prednisone, 6mp, and remicade for the last 1 1/2 years. It's caused more harm than good to the rest of my body but my small intestine has started to heal but I still couldn't get rid of the steroids. So the GI and I decided I should go gluten free again just to see what happens. So I did and I have been able to get down from 60mg of steroids to 7mg and I am still tapering. However I have been retested for celiac in Milwaukee and I only had one of the lower genetic markers. Though some of my family members have celiac. I guess my question is do I stay gluten free for the rest of my life, or is this just a mental thing. The evidence seems there to me. But it's not something I want to do if I don't have to. I don't wish this on anyone. Any advice on whether it sounds like I should be gluten free?

Hello, and welcome to the board.

Your post is a little confusing to me. You say that the second set of biopsy slides in Milwaukee showed no change from the first after two weeks on the gluten free diet. But then you say there was more damage than there had been before and they took you off the diet. It can't be both, it must be one or the other surely.

Also, since you have now been gluten free again (how long?) have they done another EGD to see how things look now?

It seems to me with a family history of celiac, and damage to your villi that is normally associated with celiac, that you are probably celiac even if the doctor gods in their ultimate wisdom decide that you have something else as well. I am glad that you have been healing on the steroids but it should not, as you and your GI realize, be a long-term solution. If they have not done a repeat EGD since you have been gluten free, do they plan to do another within a certain period of time? This would be an important test to determine staying on the diet. It is hard for me to see how a gluten free diet could make your villi worse.

Do you have any other food intolerances that cause you gastric upset? Or any other symptoms associated with celiac disease?

Are your other family members' symptoms similar to yours? Do they carry the same genes? All these would be interesting to know.

[candacelynn]

Hello, and welcome to the board.

Your post is a little confusing to me. You say that the second set of biopsy slides in Milwaukee showed no change from the first after two weeks on the gluten free diet. But then you say there was more damage than there had been before and they took you off the diet. It can't be both, it must be one or the other surely.

Also, since you have now been gluten free again (how long?) have they done another EGD to see how things look now?

It seems to me with a family history of celiac, and damage to your villi that is normally associated with celiac, that you are probably celiac even if the doctor gods in their ultimate wisdom decide that you have something else as well. I am glad that you have been healing on the steroids but it should not, as you and your GI realize, be a long-term solution. If they have not done a repeat EGD since you have been gluten free, do they plan to do another within a certain period of time? This would be an important test to determine staying on the diet. It is hard for me to see how a gluten free diet could make your villi worse.

Do you have any other food intolerances that cause you gastric upset? Or any other symptoms associated with celiac disease?

Are your other family members' symptoms similar to yours? Do they carry the same genes? All these would be interesting to know.

Sorry didn't mean to be confusing, this is my first post and I felt like it was to long..lol So let me clear up what I messed up. The second ugd showed the atrophy had gotten worse, after I had started the gluten free diet. I have started being gluten free the second time since April of 2010. My 2 other family members that have celiac that I know anything about, once has markers, the other does not. However I do not know which tests they have ran and how they came upon the diagnosis from the one that doesn't have any markers. We plan to do another Ugd after I am finished tapering on the steroids which should be about 7 weeks with any luck. The last ugd they did was when i was not gluten free in march. As far as the symptoms of my family being similar to mine, from what I know mine were the worst. One of my uncles lived on beer and pretzels so he was constantly in pain and weighed like 100 pounds. I had lost over 70 pounds and I am not light to begin with. I spent most of my days in the bathroom curled up in a ball whether I ate or not. The only food I could keep down was kfc mashed potatoes. As far as food intolerances go, I have been lactose intolerant since I was born. I have had digestive problems since day one. I had my first ugd at age 15. They found swelling of my stomach lining and treated me for gerd. As far as any other alergies I don't believe so, but I could be wrong. I am learning so many new things with the gluten free lifestyle and the disease, that nothing would surprise me. Thanks for your time hope this clears things up.

[candacelynn]

Hello, and welcome to the board.

Your post is a little confusing to me. You say that the second set of biopsy slides in Milwaukee showed no change from the first after two weeks on the gluten free diet. But then you say there was more damage than there had been before and they took you off the diet. It can't be both, it must be one or the other surely.

Also, since you have now been gluten free again (how long?) have they done another EGD to see how things look now?

It seems to me with a family history of celiac, and damage to your villi that is normally associated with celiac, that you are probably celiac even if the doctor gods in their ultimate wisdom decide that you have something else as well. I am glad that you have been healing on the steroids but it should not, as you and your GI realize, be a long-term solution. If they have not done a repeat EGD since you have been gluten free, do they plan to do another within a certain period of time? This would be an important test to determine staying on the diet. It is hard for me to see how a gluten free diet could make your villi worse.

Do you have any other food intolerances that cause you gastric upset? Or any other symptoms associated with celiac disease?

Are your other family members' symptoms similar to yours? Do they carry the same genes? All these would be interesting to know.

Sorry to be back again. When I said there was no change I meant there was no change in my symptoms, but the biopsy had gotten worse. Sorry for the confusion.