So Disappointed With Medical Profession Right Now...

[Marz]

I waited a few days before posting my results, because I'm so frustrated and disappointed I thought I'd start swearing...

I had my scope last week Wednesday, and afterward the gastro specialist spoke to me and said "Everything looks fine, some inflammation on the stomach". He thinks the diarrhea is caused by an irritable colon (IBS), and the stomach problems/nausea is dyspepsia (Stomach holding in contents for too long, resulting in nausea, gastric dumping etc).

He didn't even wait for the biopsy results to hand out medication. I don't even know if he took a small intestine biopsy, only colon biopsies. He did a Full Blood Count blood test, no other tests.

I spoke to my GP the week before, asking if it's possible I might have Celiac disease. He stated he doesn't think so, he thinks I've got IBS, and in his own words "if you recall it, you probably had stomach problems your whole life." Sure... I went through school and Varsity, and a wedding, without hardly a stomach cramp. And 5 months ago all these problems suddenly start happening, for no reason at all. I go from being happy-go-lucky, eat anything I want, go anywhere I want, to picking at my food, worrying about toilet locations at Malls, and going through therapy for nightly panic attacks. At 28... I don't even have age to blame. My stress levels are the lowest it's been in 5 years, I've got a great job and happily married. But no, it's stress and irritable colon.

So I'm not going back to either doctor, I'm supposed to have a followup with the Gastro next week, but I can use the R650 to buy a bread maker, to be honest. I'm going to try get the biopsy results, and if I see small intestine damage I *might* see him to confront him on his "IBS" diagnosis. I actually can't stand the thought of looking at his smug face doleing out his IBS diagnosis.

Somebody needs to tell him IBS is a non-diagnosis, it's what you label when you've eliminated every other possibility.

At least I've eliminated other nasty disorders like Crohn's disease and ulcerative colitis. That's the only benefit I see from the R3000+ I've spent so far on this.

I'm not willing to wait the 10+ years it takes for a proper celiac diagnosis, with classic celiac damage, thanks very much.

Needless to say I've gone gluten-free cold-turkey, no excuses.

/Rant

[lilbit]

Ranting is OK! Make sure you look at your biopsy results yourself. Then ask questions like- how did they determine the level of villi blunting (if there is any) Or did the pathologist eye-ball this sample or actually count???

My GI refused to diagnose me even after the biopsy showed villious blunting. I ended up back with my internal med doc who was like... Hey you have celiac.

I've been 100% Gluten free since last Thurs... I almost did a happy dance yesterday when I only had 2 bowel movements (down from 9-12).

You know your body better than anyone else and unless you have an official need for a diagnosis on paper... then do what's right for you!

[GlutenFreeManna]

I've so been there--even worse because my symptoms were mainly neurological. So I had to have brain scans, heart scans, tests for epilepsy, etc, etc. The only immune-disease they tested me for was lupus. The doctor wanted to diagnose me with fibromyalsia, but had to rule everything else out first...Celiac or gluten intolerance NEVER ONCE came up in conversation. Looking back now, I was having some digestive problems, but the neuro symptoms were so much more debilitating that that was what I was focusing on when talking to doctors. By the time I suspected some kind of food intolerance I was desperate and decided to just try an elimination diet. I wish just one doctor had asked about nutrition or suggested food intolerances/allergies. It would have saved me three years of suffering and thousands of dollars in medical bills. This also started in my late 20's (I'm 30 now) and I was healthy and happy up until the symptoms started.

[Mari]

It is important to have a bowel movement within 1 hour of eating especially people with intestinal problems. If I don't feel like going I may eat a grapefruit or start taking betaine HCl to acidify my stomach - strong acids trigger the iliac valve to release food from the small intestine into the bowel. It may be a relief to going back to one bm a day but food may still be going thu your intestine too slowly and you may have an impaction again.

[Marz]

It is important to have a bowel movement within 1 hour of eating especially people with intestinal problems. If I don't feel like going I may eat a grapefruit or start taking betaine HCl to acidify my stomach - strong acids trigger the iliac valve to release food from the small intestine into the bowel. It may be a relief to going back to one bm a day but food may still be going thu your intestine too slowly and you may have an impaction again.

Perhaps replying to wrong post? I didn't mention 1 bm above? I disagree with this though - I think different people will have different requirements for what is comfortable and "normal".

[dilettantesteph]

I thought food was supposed to stay about 24 hours in the intestine before being eliminated.

I hour seems like what I was suffering before when I had my uncontrollable diarrhea. My GP knew I had it and told me it was consistent with IBS. I could barely leave the house and it is a typical symptom of advanced celiac disease. I could have gotten a diagnosis much sooner if my GP hadn't been so uninformed. I was angry too. I'm much happier no longer crapping in my pants, let me tell you.

[Skylark]

If you've ruled out the inflammatory bowel diseases and plan to eat gluten-free for life, there isn't a lot of point to celiac testing unless your symptoms return. If you're acting as if you're celiac, watching for thyroid disease and the rare lymphocytic cancers, there is no functional difference in having a diagnosis.

Neither of the two good docs I've seen over the last few years has been interested in seeing me make myself sick with a gluten challenge to possibly get a piece of paper telling me to eat the way I'm already eating. I wish I had run across such good, sane doctors earlier in my life.

[ravenwoodglass]

It is important to have a bowel movement within 1 hour of eating especially people with intestinal problems. If I don't feel like going I may eat a grapefruit or start taking betaine HCl to acidify my stomach - strong acids trigger the iliac valve to release food from the small intestine into the bowel. It may be a relief to going back to one bm a day but food may still be going thu your intestine too slowly and you may have an impaction again.

I'm sorry but I do disagree with this. The important thing is regularity. Different people have different systems. People can be fine with one BM a day some have different patterns. You are not releasing the food you just ate. If you are you are not absorbing much of anything from that food. That is called dumping and is a fairly serious medical issue. You have 22 ft of small intestine for a reason. That reason is because all that 22 ft is absorbing nutrients as the food is passing through. The BM you have in the morning is food you ate the day before or even the day before that and that is normal. Want to know how long your system takes to pass a meal, eat some corn on the cob. The outside of the kernal is not digested so you can 'track' your transit time that way.

[ravenwoodglass]

Perhaps replying to wrong post? I didn't mention 1 bm above? I disagree with this though - I think different people will have different requirements for what is comfortable and "normal".

I agree with you about that.

As to your original post, I think you have a lot of company as far as being fed up with Drs in general. I am really glad you are taking you health into your own hands as far as the gluten free diet goes. I wish I had known to do so, it would have made such a difference. I show false negative on testing but not one single doctor suggested trying the diet despite the negative results. They just shrugged their shoulders, ordered another test and asked if I wanted a prozac. This despite the fact my symptoms screamed celiac so they kept doing the celiac blood work over and over and over with the same negative results every time. After I was finally diagnosed with the aid of a very elderly, very savvy allergist he remarked that I was 'one of those celiacs that would have been diagnosed by autopsy'.