My Clueless Doctor

[Wandering Hermit]

So I met w/ my doctor, 4 months after going gluten-free. My most recent blood work came back normal. I told him that I still had some loose stools, but that the D was gone as are most of the cramps I used to have.

I also told him that on day one of gluten-free, when I drank a tall glass of milk, it went right through me. "Oh, wow, you have lactose intolerance too" he said. It was quite obvious that he had no idea that celiac may be causing this. He also seems to have no clue that after 4 months it is not unheard of that I still may have some bowel issues. I told him that I also seem to have some mucous in the stool.

So his reaction to all this? "Get a colonoscopy."

??

I really don't think he understands the disease, and I am surprised that he said this. So now I am thinking of my options:

a. Do what he says.

b. Find another doctor who knows something about celiac.

I'm not crazy about the colonoscopy - I had a barium enema 1 year ago and it was normal. I'm not quite mentally ready for another "prep" and invasion procedure. Also I wonder if he even understands that my disease is one of the small intestine.

I'm not sure what to do. Any thoughts?

Thanks.

[Aprildncr]

I had problems with my doctors too. Sometimes they want to be right all the time so they force your symptoms to fit their initial diagnosis. I did end up changing doctors after the one kept instisting on it being ibs or crohns and all these tests that came back negative for both. After the fifth test I was like i dont have either it has to be something else and he finally said then go get a second opinion. I did and the second doctor diagnosised me with celiac disease. im glad i changed. As far as the colonoscopy I had an upper endoscopy. That is where they put you to sleep and put a camera down your throat. It got good pictures and biopsy of my small intesting and was probably a lot more comfortable and a better procedure for the condition. Hope this helps

Steph

[KaitiUSA]

I would find a doctor who knows something about celiac. The doctor obviously doesn't know anything about it.

I think your stools are celiac related still. You could have a problem with milk while you heal. Also, it has only been 4 months and remember everyones symptoms varies with times to go away.

Have you also changed products like soaps and that sort of thing? You want to cross out any possible avenue for gluten to get in.

Ok, so I got a bit off topic lol...I would go with a new doc.

[cgilsing]

It really is a shame that doctors aren't more aware of celiac disease! I have had problems as well with doctors. After years of suffering my mom was the one that suggested Celiac disease as a possible cause. I went in and told my doctor about my family history (great-grandmother, grandmother, aunt and two uncles) of celiac disease. She looked at me blank faced and told me that the way they diagnose celiac disease is by taking wheat out of the diet and see if it helps. I had to ask her for a referal to a gastroenterologist and to a nutritionist. When I asked her about the nutritionist and told her I was having trouble with the diet she said "Well, you could eat pasta!"

When I went to the gastroenterologist that she refered me to I went in the office and started rattling through my symptoms. The whole time he was looking down at his notes. After listing my symptoms I asked him if he had any suggestions. He sat in the chair and stared at me for an uncofortable length of time, until I repeated the question. Then he said "Um....I can't make a suggestion because I don't even know what your symptoms are..." I was so mad I almost got up and walked out of the office. I know I was beet red. That man hadn't been listening to a word I said!

Unfortunatly I live in a small town, and doctors are few and far between. I do a lot of research myself and make sure to speak up and ask for what I want. If you live in a metropolitan area I would search around and find a new doctor. Go with your instinct, if you don't think he knows what he's talking about that means he probably doesn't.

[psawyer]

I agree. You need to get a different doctor.

[Guest GITRDONE]

I'v had the same experince. I have seen doctors in Seattle, Wa., Portland, Or (4), Medford, Or(er & 1), Sonora, Ca.(1), Susanville, Ca. (2) and finally in Reno, Nv. the third one I went to (only because my insurance changed) asked if I had ever been tested for celiac disease, I looked at him with that deer in the headlight look and said no, but I had had every other test at least twice. All these doctors were GI specialist. The second one in Reno was part of specialized gastric group. My experice with him was unreal. I went to him with blood coming out from both ends, and the only thing he could come up with is hmm, anyone?? Yep a colonoscopy will clear this up. All said and done he told me "your body will do that once in awhile for no certain reason."

Anyway, get another doctor if you can, if not read all you can on this site and ask questions, the only stupid one is the one you don't ask. Then go back and try to educate your doctor. so that he can help you.

As you can see I'm new to this site as well, but my hat is off to all the members for the knowledge they share. It is truly a godsend.

Take care, Susan (gitrdone)

[dick'sgal]

I think you might feel that doctors can be clueless, but I think in this case he could be right. I think one of the ways that doctors confirm the diagnosis of Celiac disease is by looking at the villae (sp?) at the bottom of the colon and this can only be done with a colonoscopy. I used to hate colonoscopies, too. I had colon cancer before I was diagnosed with Celiac disease, so I had to have them on a regular basis. The worst part, was drinking that gallon of Go-lightly.

Fortunately, the last time I went for a colonoscopy they gave me several pills in place of the liquid. You still spend a lot of time in the bathroom, but you don't have to drink a gallon of that horrible stuff. And then, once they give me the drugs to relax me, I fall fast asleep. I would go for the colonoscopy. At least you will have some kind of diagnosis. Your doctor can also look for polyps or other things that might be causing our bowel problems. Hope this helps.

Dick's gal

[mommida]

Get another doctor. You aren't comfortable with this one, or you wouldn't be questioning the colonoscopy suggestion.

You've been gluten free for 4 months right? The damage should be healing and there would be nothing to find Celiac related, assuming nothing else was going on since your last test, you will just be diagnosed with IBS.

Unless you go back on gluten, all testing is useless except for genetic testing.

Laura

[Merika]

Wandering Hermit,

It's been my family's experience that stools can take a loooong time to sort themselves out. Depending on how long you've been sick and how sick you've been, it could be well over a year. It sounds like you are improving overall, and that's what counts.

Personally, going from what you say in your post, I would just wait. Keep doing what you're doing. Make sure everything is gluten-free. Consider an ELISA blood test for food allergies, as this may have developed with the celiac (and may go away once your body is back to "normal"), but I think you might heal faster if you don't bombard yourself with offending allergic items in the meantime.

If a patient goes to the doc, the doc's only clear assumption is that the patient wants something done, so they will run tests to "see" or "make sure" or "rule it out". If you don't want procedures, don't ask for them I don't mean that in a harsh way, but I have never been to a doctor that said "there there, dear, don't worry, you're progressing just fine, we'll keep an eye on you". OMG - can you imagine their malpractice rates if they told someone that and they were wrong!

Oh, and I just reread your post - Did you know that excess mucous (anywhere in the body) is a sign of allergies? So you really might want to look into food allergy testing.

Merika

[Wandering Hermit]

Thanks for the feedback all.

I called a Gastroenterology clinic that my insurance works with.

I told the person on the phone that I would like to determine which of their doctors if any specialized in Celiac.

"Oh they all do. They are all gastronenterologists."

Sigh.

So I will be seeing one in Sept, the one who happened to have the first available appt time.

I just love this. It is like buying a home and having the realtor say: Here is the first available house - this is the one you are going to buy.

--------------------------------------------

On the subject of stools (warning! details follow!) - on Saturday I actually had a totally normal one for the first time in I don't know how long.

But by a day later they were back to normal.

Today was terrible. During the actual BM itself it *seems* normal. Then in the bowl it practically disintegrates. The flushing action causes it to explode and turn the water brown, so that it looks like D after the fact. Geez, I just want to have normal BMs someday.

[skbird]

I know what you're talking about, WH, I get that kind of stool a lot, too. I actually have been having crazy inconsistencies lately, one day this kind, the next another. My doc thinks gluten isn't the whole problem - I have to agree at this point.

I don't see how a colonoscopy would help you - an endoscopy *might* be illuminative with regards to villi and all that but a colonoscopy doesn't view that part.

Do you take psylliam? I have heard that works for helping to form stool better. Most commonly used for constipation but I have also heard of it helping diarrhea as well. I currently am taking that as I have been so unpredictable lately and it is helping, some.

Stephanie

[Wandering Hermit]

Stephanie:

No psylium, I may try that.

As I read more, it seems to me that the most logical explanation is that the funny stools will persist over time due to lingering malabsorption issues because the villi take a long time to heal up completely. What happens from day to day is a function of what you ate and how well your guts could process it.

The other day I decided that after 4 months of gluten-free, I would give myself a lactose check - (on day one of gluten-free I drank a big glass of milk and it went out the other end 30 min later.)

So last week I drank a big glass and the results were different. No D, but it certainly did not get digested properly. In 1 hour I had gurgling guts and lots of gas. I mean a lot.

So I'm certainly not all better down there, but I think it is a little improved. With the exception of what that first glass of milk did to me, I have not had "classic" D since going gluten-free. Nor have a had the crippling, stabbing abdominal pains that I was wont to have about 1/4 days.

I guess I just have to get used to the idea that even after almost 5 months of gluten-free I still have to expect abnormal stools for a while.

What really amazes me is that the doctor didn't just do a stool test to verifiy the malabsortion and make sure there is no blood, etc., before up and suggesting a colonoscopy.

[terri]

I have been gluten-free for a year and a half and still have bouts of horrible day long gas attacks with belching and curious stools. I keep reminding myself that the older we are when diagnosed, the longer it will take to heal. I'm probably looking at another year to heal I also read where the average person farts 23 times a day! So, maybe we should realize that SOME of it is probably normal

Anyhow, hang in there!

[DDShubert]

I have been gluten-free for a year and a half and still have bouts of horrible day long gas attacks with belching and curious stools. I keep reminding myself that the older we are when diagnosed, the longer it will take to heal. I'm probably looking at another year to heal   I also read where the average person farts 23 times a day! So, maybe we should realize that SOME of it is probably normal

Anyhow, hang in there!

<{POST_SNAPBACK}>

I have a question that hopefully someone can help me with. I have a great family doc who did the blood test and it came back positive. He sent me to a GI doc who was less than helpful. I had to ask him for both a colonoscopy and endoscopy. He was just going to do the colonoscopy. The procedure is a few weeks away and he told me NOT to change my diet. He also said that he would not be sure of the celiac diagnosis, "until I get a piece of it." I thought this was amusing until I realized he was talking about my intestines! Is this standard procedue? Thanks for your help.

Duane

[ravenwoodglass]

I have a question that hopefully someone can help me with. I have a great family doc who did the blood test and it came back positive. He sent me to a GI doc who was less than helpful. I had to ask him for both a colonoscopy and endoscopy. He was just going to do the colonoscopy. The procedure is a few weeks away and he told me NOT to change my diet. He also said that he would not be sure of the celiac diagnosis, "until I get a piece of it." I thought this was amusing until I realized he was talking about my intestines! Is this standard procedue? Thanks for your help.

Duane

<{POST_SNAPBACK}>

Yes this is standard. If you go gluten free it may give a false negative in the biopsies. Be sure he takes lots from lots of different locations. In this country doctors feel biopsy is the only 'true' way to diagnose celiac, not sure I agree with that but it is standard to demand this 'proof'. Many GI doctors still consider this rare and don't look for it at all, even when symptoms scream at them. Good luck.