I Want To Slap My Doctor In The Face

[Lena]

Went to the docs today. My results from the stool test were back...no parasites or salmonella, etc.

Then my doc is talking to me. He says "I think you have IBS." I told him last visit he thought I had celiac becuase my symptoms happen at night. I also told him about being gluten-free for two weeks, but then having an attack Sat. after eating in a resturant. he said "you wouldn't didn't eat bread so how could you have celiac?" This was the man who told me about the disease three weeks ago! I had never heard of it until he mentioned it! So...he says "you've been under a lot of stress." Bull...I've started my own business but throughout my life have been under way more stress than that! So finally he orders bloodwork for celiac, and a CAT scan.

he says "if you have IBS...there's nothing you can do anyway...just take the bentyl and immodium." Oh gee why didn't I think of that????

So, those of you who take bentyl and imodium for celiac...do you find it helps? he says since it helps me I MUST have IBS instead of celiac. It's not like I want to have celiac, but at least I know how to treat it if I do. There is nothing I can do to stop IBS...it is a nightmare diagnosis if that's what this is.

[KaitiUSA]

Your doctor is dumb about celiac. DO NOT believe that doctor-they are part of the reason that celiac is highly misdiagnosed.

Celiac is commonly misdiagnosed for things like IBS.

You need to be tested for celiac and the panel needed consists of the following:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

You should request these tests and if he doesn't give them to you then find another doctor who will but definitely get tested. If you do end up having celiac you should probably find one knowledgable with celiac.

Doctors will always press for medications to take care of problems but the thing is they treat the symptoms not the problem.

My doctor told me that he could give me meds to take care of all the symptoms I had but it would catch up with me if I was not following the diet because I would still be doing damage, just covering up the symptoms.

[ravenwoodglass]

So, those of you who take bentyl and imodium for celiac...do you find it helps? he says since it helps me I MUST have IBS instead of celiac.

I didn't take bentyl, they gave me Librax, but I lived off imodium daily for 15 years. Yea sure it helps, it holds the 'poison' right in there so it can have the most effect. It made sure I could get through most of my day, too bad I dealt with 3 hours of misery every night. I'm sorry sometimes these doctors make me so mad. Anyway it did help the diarrhea at least temporarily but I believe it made the other problems worse because it increased the amount of time gluten was in contact with my intestines. It sounds like your doctor really is not very knowledgeable about celiac, not surprising most aren't in the US.

[elonwy]

I'm a PeptoBismol Girl. Gets me through the day. And the night. what kind of statement is "if it helps you it can't be Celiac???" These idjits make so much money to speculate about crap they don't really know about.

My doctor told me my intestinal damage wasn't "that bad" so I didn't HAVE to go on the diet YET.

And that's after my blood test came back positive, and he's being a twit because he originally said IBS and I brought up Celiac and I was right and he was wrong.

God these guys piss me off.

Just cause they paid a bazillion dollars to go to med school and charge such exorbitant rates that half the people in this country can't even afford bleedin health care does not mean they know any more than you do!

ARRRRGGGG!

Stepping down now.

Elonwy

[Lena]

Thank you guys for responding.

At least he did do a blood test for celiac...I'm not sure what exactly he was looking for. I told him I hadn't had any wheat but he said it would still show up in the blood test if I do have it.

Of course now I will have to hound them for the results. I broke one of my toes a while back and it took a month for them to call and tell me the xrays showed it was broken. Got a call " come in and get your crutches" Oh well...the toe is almost healed now thank you very much.

[hollybeth]

Went to the docs today. My results from the stool test were back...no parasites or salmonella, etc.

Then my doc is talking to me. He says "I think you have IBS." I told him last visit he thought I had celiac becuase my symptoms happen at night. I also told him about being gluten-free for two weeks, but then having an attack Sat. after eating in a resturant. he said "you wouldn't didn't eat bread so how could you have celiac?" This was the man who told me about the disease three weeks ago! I had never heard of it until he mentioned it! So...he says "you've been under a lot of stress." Bull...I've started my own business but throughout my life have been under way more stress than that! So finally he orders bloodwork for celiac, and a CAT scan.

he says "if you have IBS...there's nothing you can do anyway...just take the bentyl and immodium." Oh gee why didn't I think of that????  

So, those of you who take bentyl and imodium for celiac...do you find it helps? he says since it helps me I MUST have IBS instead of celiac. It's not like I want to have celiac, but at least I know how to treat it if I do. There is nothing I can do to stop IBS...it is a nightmare diagnosis if that's what this is.

<{POST_SNAPBACK}>

Did you feel a lot better gluten-free? I can't believe that the doctor said that about 'not eating bread' since gluten is in so many things...It does seem that doctors are pretty dumb when it comes to celiac disease. I was told that I didn't have celiac from the blood test but I am remaining on the gluten-free diet because I feel like a totally different person on it. I used to have so much gas, bloating, burping. That all disappeared when I eliminated the gluten. I think the gluten sensitivity (for which there is no test) can be debilitating, even though one might not be suffering as severe effects as the celiacs do.

My husband was told that he had IBS quite a few years ago, after several years of suffering bouts of painful cramps, diarrhea, etc. All the doctor did was give him pills to take when he gets bouts of it. The pills work by relaxing the muscles involved. They do help some when he is going through a bout of it. The GI doctor told my husband that people in South America don't have IBS. They don't know if it is the diet, or what. My husband finds that he has to make sure he keeps hydrated well most of the time and avoid certain fast foods. He is also lactose-intolerant (his whole family). He really can't eat ice cream without it going right through him. His sister is going through a tough time lately and is going to see a GI doctor. I told her about the gluten-free diet. It will be interesting to see if that helps her.

[elonwy]

Someone else ( It might have been celiac3270) posted a link to a Celiac Specialist who had a bunch of papers online. I've lost track of it unfortunately.

One of the things he said on it that amazed me was that Lactose intolerance is really rare in Caucasians and that anyone of European descent who shows lactose intolerance symptoms should get tested for Celiac.

Just a thought.

Elonwy

[ravenwoodglass]

Thank you guys for responding. 

At least he did do a blood test for celiac...I'm not sure what exactly he was looking for. I told him I hadn't had any wheat but he said it would still show up in the blood test if I do have it.

<{POST_SNAPBACK}>

Lena, be aware that if you have been gluten free the test results may very well give a false negative. Heck, they often give false negatives even when your stuffing yourself with it, all the blood they took never caught it with me. I agree with other posters if you feel better gluten free thats the true 'test'. Good luck with your doctor, hope you feel better soon.

[jenvan]

I took bentyl for a long time before I was diagnosed with Celiac. I also wore the IBS label for years. It did very little for me--mostly just made me feel loopy! Someone here once said IBS stands for "I be stumped." Which I think is appropriate in many cases! So you are waiting to get back your Celiac blood tests? It is definitely a possibility. Many of us here were wrongly diagnosed with IBS...

[Lena]

Well...I had to push the envelop and find answers. Yesterday and I did something either very smart or very stupid. Turned out to be smart (I think). After thinking on it I decided to see what would happen if I went back to my "old ways" and really tanked up on gluten. Ate 2 muffins and a flour quesadilla. Figured if I had celiac that would push me into an attack for sure. Other than some huge bloating, I had no "attack" like I did before. I started the gluten fest yesterday at 2 p.m....bloated within an hour, felt sleepy and yucky but no GI attack so I guess that means I don't have celiac. I'm definatley going to continue to keep obvious wheat products out of my life....and things like pizza and garlic bread, processed foods are a no no for sure. I do have some gut pain here and there today but nothing like the awful cramping that makes me scream. So maybe I'm just midly sensitive.

Still don't know what brings on the huge attacks...I'm too scared to try pizza which gave me the worse "thought I was going to die" episode...that and the garlic bread. They're calling to sceduale a CT scan...pain on the right just won't go away. Maybe it's an ovary...not sure that would cause GI stuff.

[Rachel--24]

I could be wrong here but I don't think that you can rule out celiac disease or gluten intolerance based on not having a certain symptom after eating gluten for a day. At least in my experience reactions are not reliable or predictable...they seem to vary. I've eaten pizza before and felt perfectly fine and other times I've had severe symptoms from eating pizza.

[jenvan]

Lena-

You can't rule out Celiac based on not experiencing gastro symptoms. First off, some experience no symptoms, some individuals may only have a symptom like anemia...it varies from person to person. As for myself, I often experienced no gastro type side-effects when eating pasta, bread, cereal etc. Foods I had marked reactions too were foods that had no gluten in them, like chocolate and corn! So, don't let this one experiement make you rule out Celiac... I would get tested...but remember, to get an accurate test you need to be consuming gluten for a while...

[KaitiUSA]

Some people get no symptoms at all with celiac. Symptoms determine nothing when it comes to celiac. It varies from person to person but symptoms or not if you have celiac you are causing damage.

[mytummyhurts]

I've been gluten-free for 7 months and when I am accidentally glutened almost nothing happens to me. I may get some diarrhea and feel a little icky, but one time I knew for a fact that I ate wheat and absolutely nothing happened. So that's not a good gauge.

I used to take Pepto sometimes when I felt nauseous and all it did was turn my throw up pink!

But sometimes now it does help for diarrhea.

[Guest nini]

I'm so irritated at Dr.s right now and just how little THEY know about Celiac. It's unfortunate that THOSE OF US WHO LIVE WITH IT are more educated about it than the Dr.s are.

[happygirl]

I was given Bentyl also, and it 'helped' my symptoms some, i.e. calmed my stomach down. Once I've gone gluten free though, I have no symptoms unless I am glutened.

[ravenwoodglass]

It usually takes about three days for the GI symptoms to show as far as diarrhea goes. Gluten is an intolerance and the symptoms are much more insideous than the I eat it I get sick reaction that you see with an allergy. Don't think for a minute you are in the clear case the 'trots' haven't hit...yet. I hope they don't but. And by the way if you were bloated and lethargic within an hour you were having symptoms.

[nogluten-]

[q

He is also lactose-intolerant (his whole family). He really can't eat ice cream without it going right through him. His sister is going through a tough time lately and is going to see a GI doctor. I told her about the gluten-free diet. It will be interesting to see if that helps her.

<{POST_SNAPBACK}>

[debmidge]

Lena,

My husband has been ill for over 25 years and for most of those years he had 5 gastros tell him that he had IBS, colitis or ileitus - no one ever said celiac disease. Was unheard of. Many GP's missed his diagnosis too.

Finally, 2 years ago, he changed gastros again - and new gastro upon hearing his health history after 3 minutes exclaimed "You have celiac disease." He was so far gone with all the symptoms for many, many years that I'd have to line each doctor up from 1977 to 2003 and smack them all but well!

From his experience this is what I have observed:and it my theory: when the person hasn't had celiac disease very long perhaps the person can eat gluteny foods without an immediate reaction, but eventually there will be a reaction. After 25 years of misdiagnosed celiac disease my husband got to the point where he was unknowingly living with the reactions as his doctors were calling the "reactions" normal with IBS. Again, I'd like to line all his doctors from 1977 to 2003 up and smack them all! Especially the one from 1994 when I mentioned to this gastro "It appears that he isn't absorbing his fats, calories or nutrients?" This doc told my husband that he had psychological problems with food! This gastro was from a prestigious medical group here in NJ that everyone puts on the same level as God. This doctor gets a double smack.

To sum it up: run from this doctor you are seeing unless he/she comes to your way of thinking by running the tests and using observation of how you get gastro relief from avoiding gluten. Medicine is not only testing but as a science should rely on observation of theory. There are many bad doctors out there who always want to be right (correct) and will denounce your gut feelings because THEY didn't come up with the diagnosis, you did, and that bothers them. Run from this type of doctor: run hard, run fast.

And just because you don't get a reaction immediately from gluten, doesn't mean that you do not have celiac disease or a wheat sensisitivity. With celiac disease it appears that it can go into hiding just long enough to fool you.

[Lena]

The thing that makes me mad about the doc is he was the one that mentioned celiac to begin with. I guess I'll know soon enough if I have it...bloodwork should be back soon. I really don't want a CT scan...all that kind of stuff scares me. I do know something is wrong...I never get sick so am concerned about the pain that won't go away...and the attacks.

As I think back it started 2 years ago and has gradually started getting worse.

As far as family history, both Mom and Grandma have chronic anemia, Mom has IbS and Grandma has divirticulitis...so maybe they have it too but don't know it. Me and my sis both have unexplained infertility.

I just want to know what it is so I can get on with me life.

I'm so sick of bloating...than bugs me the most (other than the pain attacks).

Thanks for listening...I don't talk to anyone about this other than my hubby. I did mention it once and a friend said "oh I get that sometimes" "it's just an upset stomach." Whatever. So now I just shut up.

[debmidge]

Lena; Don't fear a CT scan if you really need one. I had one last year and it wasn't bad...I've had worst tests. After the CT scan was over I went to mall and shopped and made sure to drink a lot of water. Dr. did CT as they wanted to rule out/in diverticulousis or ovarian cysts. Turned out to be ovarian stuff.

All in all the CT scan was better than I thought it would be.

[Lena]

Doc's office called today. Test came back negative. They want me to do a Ct scan but I won't because of the dye. So...I guess I'm stuck with an IBS diagnosis.. Lost 5 more pounds. I'm just fed up and sort of don't care any more.

[Jen H]

Hey Lena,

I'm so sorry you're dealing with all this and I understand your frustration. It took my doctors about a year to discover that my illness was because of celiac disease. I had every test in the book performed, sometimes twice! Is the CT scan when you have dye injected into you and x-rays are taken? I think I had that one done, twice. It wasn't bad. When the dye is injected, you get a momentary "hot flash" and then the sensation goes away. I hope you're feeling better soon and that your doctors discover the root of your pain.

Jen

[Rachel--24]

Doc's office called today. Test came back negative. They want me to do a Ct scan but I won't because of the dye. So...I guess I'm stuck with an IBS diagnosis.. Lost 5 more pounds. I'm just fed up and sort of don't care any more.

<{POST_SNAPBACK}>

Are you allergic to the dye? I had a Ct scan and the dye wasn't too bad...the guy was really sweet and he held my hand the whole time. Well until the scan started...he quickly abandoned me at that point. He explained everything beforehand...he said it might feel like I had wet my pants but not to worry because its only a "feeling"...it doesnt really happen. So you get a warm feeling especially in your neck..it spreads and sure enuff I thought I'd wet my pants. After it was done the guy offered me some licorice and I was on my way . Obviously that was before my dx. IMO...MRI's are way more intimidating. I didn't like that one at all.

[Lena]

They want me to drink the dyd for two hours prior to the test. The last thing I want is to put my gut through that. I had done dye years ago when I had "attacks" and it made me so sick. The good news is I'm feeling better since staying gluten-free so will stick to that. Maybe I'm losing weight becuase I'm not so bloated. I'm going to the gyn and make sure the pain on the right isn't my ovary. I had a lapro 5 years ago and they removed adhesions on my bowel connected to the ovary...maybe they came back.