What The Doctor Said

[Galixie]

After 20 days of intermittent GI issues, I decided to go to the doctor. It was the same doctor who originally tested me for celiac. I told her that I went gluten free for six weeks but stopped because I’d suddenly developed gut problems in the fifth week that hadn’t gone away.

 

None of the foods I’d been eating seemed singularly responsible for my gut issues and my issues weren’t entirely new – just worse and far more frequent than they’ve ever previously been.

 

I sort of cringe to recount this because I know she means well but I’m not sure everything she said is accurate.

 

She told me I have IBS.

 

She tried to put a positive spin on it by telling me that, while inconvenient, at least IBS doesn’t progress to any worse digestive problems. She thinks drastically changing my diet to eliminate gluten may be what set it off.

 

I explained that I had tried gluten free because of the positive gliadin IgA result and she said she could understand my motivation. She didn’t say whether or not she thinks I have non celiac gluten sensitivity though.

 

She told me that I need to keep a ‘stable’ diet to avoid problems. Basically I should find what foods keep me relatively well and stick to them while also keeping variety in my diet. (How do I eat the same things all the time but still get variety? This seems like a zen koan.)

 

She went on to say that going gluten free cuts out a lot of variety and fiber. (I told her that I started taking extra fiber supplements and eating more beans when I went gluten free to try to maintain my level of daily fiber. My comment didn’t make any difference.)

 

She advised against my going gluten free again. She pointed out that it is an incredibly hard diet to maintain and that gluten sensitive people don’t suffer the intestinal damage that celiacs experience. Since I wasn’t experiencing horrible symptoms before going gluten free, the diet would not benefit me.

 

Instead she recommended that I take a probiotic, more fiber, and “Go have a nice bagel.”

 

At this point I'm pretty turned around. I know IBS is kind of a throwaway diagnosis that is given when doctors can't or won't figure out what is actually wrong. On the other hand, my symptoms got worse while I was gluten free so maybe she's right and I shouldn't worry about eating wheat? I'm so confused.

[Fenrir]

Did you have the deaminated gliadin test or just the regular AGA?

 

If you were positive on the daminated test you are almost certainly have Celiac, the AGA (non-deaminated) is only about 80% accurate so it's not as definite.

 

If you didn't have the DGP antibody tests, you should.

And just because while you had GI problems arise during a gluten free diet doesn't mean it was gluten that was the problem. It could be that you have celiac disease but got glutened without realizing it or you are also sensative to something else (like corn or lactose or soy...ect).

[Galixie]

 

Did you have the deaminated gliadin test or just the regular AGA?

It was just the regular AGA gliadin IgA that came back positive. DGP tests weren't available at the time. All the rest of the tests, including biopsies, came back negative. I don't get the feeling that my doctor is willing to retest. She would just point out that I already tested negative. That might be why she's labeled it as IBS.

 

I really don't know what it is that caused me to get sick. I know that taking gluten out of my diet really shouldn't have made that type of impact. I also don't think it was gluten withdrawal because it didn't start until I'd been gluten free for 5 weeks. It seems like there has got to be some other component that I'm not aware of. I'm not aware of having introduced any 'new' foods into my diet. I suppose it is possible that making the change somehow disrupted the balance in my gut. I just don't know.

 

But I also don't know what path to take from here. Do I continue to eat gluten? Is she right that, with just a gluten sensitivity, there is no damage and therefore no real benefit to me from stopping? Or should I pursue gluten free because of the test result?

[nvsmom]

Many celiacs experience what appears to be setbacks when they are gluten-free. I personally felt much worse after being gluten-free two months - my joint pain, fatigue, hair loss all came roaring back for a coup,e of months. But that was my last major blip.

We usually tell people to stay gluten-free for six months before judging the diet's effectiveness, three months at the minimum. You may just need more time for your system to settle down.

A positive AGA test does usually indicate celiac disease although some doctors think it can be positive in some people with NCGI. Either way, you probably should stay gluten-free.

Best wishes.

[Questore]

After 20 days of intermittent GI issues, I decided to go to the doctor. It was the same doctor who originally tested me for celiac. I told her that I went gluten free for six weeks but stopped because I’d suddenly developed gut problems in the fifth week that hadn’t gone away.

 

None of the foods I’d been eating seemed singularly responsible for my gut issues and my issues weren’t entirely new – just worse and far more frequent than they’ve ever previously been.

 

I sort of cringe to recount this because I know she means well but I’m not sure everything she said is accurate.

 

She told me I have IBS.

 

She tried to put a positive spin on it by telling me that, while inconvenient, at least IBS doesn’t progress to any worse digestive problems. She thinks drastically changing my diet to eliminate gluten may be what set it off.

 

I explained that I had tried gluten free because of the positive gliadin IgA result and she said she could understand my motivation. She didn’t say whether or not she thinks I have non celiac gluten sensitivity though.

 

She told me that I need to keep a ‘stable’ diet to avoid problems. Basically I should find what foods keep me relatively well and stick to them while also keeping variety in my diet. (How do I eat the same things all the time but still get variety? This seems like a zen koan.)

 

She went on to say that going gluten free cuts out a lot of variety and fiber. (I told her that I started taking extra fiber supplements and eating more beans when I went gluten free to try to maintain my level of daily fiber. My comment didn’t make any difference.)

 

She advised against my going gluten free again. She pointed out that it is an incredibly hard diet to maintain and that gluten sensitive people don’t suffer the intestinal damage that celiacs experience. Since I wasn’t experiencing horrible symptoms before going gluten free, the diet would not benefit me.

 

Instead she recommended that I take a probiotic, more fiber, and “Go have a nice bagel.”

 

At this point I'm pretty turned around. I know IBS is kind of a throwaway diagnosis that is given when doctors can't or won't figure out what is actually wrong. On the other hand, my symptoms got worse while I was gluten free so maybe she's right and I shouldn't worry about eating wheat? I'm so confused.

 

Drop the fiber and the beans...they aggravate stomach symptoms for IBS sufferer's, and no doubt for anyone with disrupted digestion.  Then, after you stabilize, add the beans back slowly, or switch to small amounts of raw salad veggies, blended in a blender for an easy fiber drink. (Lettuces, celery, green peppers, carrots, avocado etc....but skip the tomatoes for a while!)   But stay away from Cabbage...very aggravating to a touchy tummy unless cooked really soft. Avoid citrus fruit and drinks! And please don't add fiber that is not a food you are eating. Most of what they sell is not meant to be digested at all!

[psawyer]

And please don't add fiber that is not a food you are eating. Most of what they sell is not meant to be digested at all!

Of course it isn't meant to be digested--it's fiber. Fiber is not digested, but passes intact through the digestive tract.