I Think My GI Is An Idiot

[DonnaMM]

I posted awhile ago about what the visual findings were on EGD that I had done. Now this doctor had a lot of stuff in front of him, my TIBC was elevated which means I have a little bit of anemia, and my serum osmolality was elevated, I assume I was dehydrated due to my chronic diarrhea. After the procedure he said looks like celiac, but then the biopsy came back normal and he said its not celiac, even with bunted villi as well as mucosal atrophy and within 24 hours of eating gluten I am running to the bathroom. He tried to tell that the blunting 'is just there' and the atrophy is nothing so just eat what I want. My primary seemed to think I had celiac before I had the EGD because I was constantly going to see him for diarrhea/constipation/rectal bleeding, he told me to go on the diet and I did and it was like a miracle. Did anyone else have problems getting doctors to listen to their symptoms or did they just simply go by the clinical findings. I just don't know what to think? I have a history of other autoimmune conditions and I am danish so it's very common in my part of the world. He seems to think I just have an intolerance and thats why I have the blunting but everything I have read says gluten intolerance does not cause damage and celiac is what causes to blunting. Oh and I am not lactose or soy intolerant since I have had the testing done and the dairy or soy causes no GI upset.

[Lisa]

Recovery while on the diet is considered diagnostic as well. I think you have your answers. Welcome to the club!

[ravenwoodglass]

I think your primary is a lot smarter than your GI. It is not unusual for GI doctors to be clueless. Mine wouldn't even consider celiac since I am negative on blood tests until the challenge he demanded almost killed me with a severe GI bleed. Glad you got the answer to what was causing your problems and are healing.

[Celtic Queen]

It's not just you who has had that experience. My GI dropped me the minute my biopsies came back negative. He wouldn't even return my phone calls. Even though I told his nurse I was gluten free for 6 weeks before the procedure, not knowing it would mess up my test. I was so incredibly angry.

My Primary Care Doctor, on the other had is absolutely wonderful. She'll order any test I ask her to. She completely agrees with me that I have issues with gluten and encourages me to stay on the diet. She was furious when I told her about how the GI doctor treated me.

If the diet works for you, stay on it. Especially since you have other autoimmune disorders that could be aggravated by the gluten. I feel that we're the best advocates for our own health and a lot of times we know what's wrong with us better than the doctors do.

[Reba32]

I'd suggest that if there was actually visible blunting of the villi, but negative biopsy, that the GI took the biopsy from the wrong spot, and likely not enough biopsies. Which unfortunately seems to be common.

I'll go along with the others and say if there's visible blunting, and you feel better on a gluten-free diet, welcome to the club! Though it's not really a club any of us particularly like being a member of!

[mommida]

I think your old GI is an idiot too!

I've got a building up rant in my system about my daughter's ped gi from today's events. I'm on the verge of ripping a new orafice for the guy. I am scared that he has LOST his f-ing mind. Now I am totally freaked out that I have been trusting this Bozo for the care of my daughter since 2003.

[AVR1962]

I hope you are going to a gluten free diet, sounds like your body is need of repair! I do not know how some docs get their degree!

[Skylark]

GIs seem to want you with tons of antibodies and villi pretty much gone (Marsh 3 or 4) before they'll diagnose celiac. It's not helpful at all!

[mommida]

Apparently my daughter's GI is such a f-ing idiot he....get ready for this one.... declared my daughter not Celiac anymore.

Seriously!!!? Follow this, he scoped her after she has been on a gluten free diet since she was 17 months old (for EE) when she was about 7 years old and didn;t see any villi damage. So even though he is the one who diagnosed "probable" Celiac in the first place, he said she doesn't have Celiac now.

I'm pretty busy right now, trying to find another pediatric

Gastroenterologist.

[Skylark]

Welcome to medical school. Please check your brain at the door.

[mommida]

This was supposed to be the "best" doctor in the area.

He also "undiagnosed" her Eosinophilic Esophagitus at the same scope. (She wasn't eating gluten, gluten free oats, fish, shellfish, soy, casein, peanuts, peas, (beans in general), tree nuts, food dyes, and eggs. It was supposed to be a re-check to etermine if food "trigger" could be identified and avoided to control the EE.

So now with the scope last week, she is "diagnosed with EE". Like it the first time. A modified Flovent inhaler and a refferal to an allergist. She was tested when she first diagnosed with EE 3 years ago ~ she's not "allergic" to anything.

I feel like I've been punched in the gut. I trusted this psycho with the care of my daughter since she was 13 months old.

He told me to feed her gluten!!? Well I know I totally went off on him. I don't think I was cussing, but I might have been. I didn't choke him, but I seriously thought about it.

[mushroom]

I would not have been able to contain myself with that idiot. He's a fix-it man. If your daughter has appendicitis and he takes it out, she doesn't have appendicitis - fixed!. If she has an infection, he gives her antibiotics and it goes away, she is not infected - fixed! Obviously your daughter does not have EE or celiac because the symptoms have gone away and, presto!!! they have been 'fixed' The fallacy of relying solely on test results..... without engaging brain

[DonnaMM]

I also don't know how you were able to handle that guy. It is no secret that celiac is autoimmune and you do not outgrow it is plastered all over the internet. Any 10 year old could figure it out. I am not too familiar with EE but what I have read it does seem like something to not take seriously or misdiagnosis. And your poor child, it sounds like see was nearly starving at a time where feeling involved is so important.

[mommida]

Ok The reason I really didn't kill him and get hauled off to jail.. My daughter was sitting right there.

I think she needs to e tested for some kind of metabolic disorder or blood disease. It is just another step to the proper diagnoses. Maybe I needed someone to take Celiac and Eosinophilic Esophagitus off the table to start looking for something else. But seriously, NO one should ever believe Celiac can be "fixed". (Especially you can't test someone for Celiac when they haven't been eating gluten.) Most Celiacs are not ending up in the hospital for dehydration on average of once a year. There is not an emerging pattern of a connection between Celiac and EE (at least not yet). Seriously what are the odds that this kid can get stuc with 2 wretched diseases?

It is time to get a new doctor on this. (and I don't believe a gastro. is the right specialist to be working with.)

[DonnaMM]

Ok The reason I really didn't kill him and get hauled off to jail.. My daughter was sitting right there.

I think she needs to e tested for some kind of metabolic disorder or blood disease. It is just another step to the proper diagnoses. Maybe I needed someone to take Celiac and Eosinophilic Esophagitus off the table to start looking for something else. But seriously, NO one should ever believe Celiac can be "fixed". (Especially you can't test someone for Celiac when they haven't been eating gluten.) Most Celiacs are not ending up in the hospital for dehydration on average of once a year. There is not an emerging pattern of a connection between Celiac and EE (at least not yet). Seriously what are the odds that this kid can get stuc with 2 wretched diseases?

It is time to get a new doctor on this. (and I don't believe a gastro. is the right specialist to be working with.)

Although I am a big believer in specialists in for certain things. I am starting to learn GI doctors dont seem to be the best guys to deal with celiac disease. I am not sure where you live but I would recommend possibly a university hospital. They are very big into research and are constantly re-evaulating causes and presentations of certain diseases. Maybe they could take a good look at your daughter and help figure it out. She is young and its important she get healthy now when her body is growing the most, but I am sure you know that

[Robert M.]

I posted awhile ago about what the visual findings were on EGD that I had done. Now this doctor had a lot of stuff in front of him, my TIBC was elevated which means I have a little bit of anemia, and my serum osmolality was elevated, I assume I was dehydrated due to my chronic diarrhea. After the procedure he said looks like celiac, but then the biopsy came back normal and he said its not celiac, even with bunted villi as well as mucosal atrophy and within 24 hours of eating gluten I am running to the bathroom. He tried to tell that the blunting 'is just there' and the atrophy is nothing so just eat what I want. My primary seemed to think I had celiac before I had the EGD because I was constantly going to see him for diarrhea/constipation/rectal bleeding, he told me to go on the diet and I did and it was like a miracle. Did anyone else have problems getting doctors to listen to their symptoms or did they just simply go by the clinical findings. I just don't know what to think? I have a history of other autoimmune conditions and I am danish so it's very common in my part of the world. He seems to think I just have an intolerance and thats why I have the blunting but everything I have read says gluten intolerance does not cause damage and celiac is what causes to blunting. Oh and I am not lactose or soy intolerant since I have had the testing done and the dairy or soy causes no GI upset.

My number one rule is...listen to your body. What works for one may not for another. I dropped gluten and haven't felt this good in a long time. Any good physician must consider clinical results as much as lab results. Who cares if someone calls it this or that, the bottom line is, gluten, especially today's version is a toxic foreign substance that your body feels is harmful enough to try to kill. I interpret my body's reaction to this nasty invader as a positive, it tells me my immune system is being highly protective and performing as nature intended it.

[adab8ca]

I had TOTAL VILLOUS ATROPHY and screaming antibodies but very few GI symptoms (although a whole lot that made me think cancer, ALS, MS etc...). GI Dr. basically said "yeaaaaaaaaaaaaaahhhhh, it's celiac. Nothing I can do. Stop eating gluten. See ya"...No further testing, no followup. My GP was MUCH better!