Need a new GI doc, need feedback

Kemah · Post by **Kemah** » Sat Jul 23, 2011 1:20 pm

Hello,

I posted a couple of months ago after having a major breakout of rash and lumps on my legs. No resolution yet on that after 3 doctors. Turns out my 1/2 sister was just diagnosed with celiac and autoimmune thyroid... so I noticed a link on her FB page and clicked on it. There is a common symptom of a rash with celiacs. I have had an identical rash for nearly a year. Yet, I was tested negative for celiac. I have told and shown 3 doctors this rash, including my GI, and told them that I felt strongly that my skin condition was something systemic and most likely related to my digestive problems. They COMPLETELY IGNORED ME!! Are these people not even aware that of the symptoms of the diseases that they are HEAVILY PAID to diagnose? I am so tired of giving my hard earned money to completely disinterested and incompetent people who hold themselves out to be more important and more intelligent than the rest of our society. It is infuriating!

I had a colonoscopy a year ago that was disasterous. Friable, oozing, bleeding on contact with the scope. Then halfway through the procedure, there was a spasm or something, that even a pediatric scope could not pass. I have never had another procedure. Entocort helped me a bit for several months, but I went back on it as symptoms worsened again.

Based on the response to my prior post, I am trying a GF diet. I'm a few weeks in and there has not been an immediate, huge difference, but unfortunately, there are several circumstances that lead to this. Primarily, I got sick after a vacation to Mexico that resulted in a terrible few days of severe pain, cramping and bleeding. My doctor had previously prescribed flaggyl which I didn't want to take because my normal GI symptoms don't fit the need... anyway I went on them after getting this traveler's bug and I am recovered from that. (my husband got it too, without the severe cramping and bleeding, of course)

Also, I am still on Entocort, so I am not sure how to gauge the improvement from the GF diet. Can anyone say how long it would take my body to recover if I am in fact gluten sensitive?

I wanted to address the feedback that Tex had given me regarding my pathology report. Here it is:

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Microscopic Description:
A. The sections from the duodenal biopsy show portions of duodenal mucosa with long fingerlike villi. There is not villous atrophy, crypt hyperplasia or intraepithelial lymphocytosis making a diagnosis of celiac disease unlikely. There is no evidence of peptic duodentitis, microorganisms, abnormal infilltrates or neoplasia.
B. The sections (antrum) through the gastric biopsies show fragments of antral and oxyntic mucosa that are histologically unremarkable except for the presence of microcystic glandular change and snouting of the parietal cells. These features are most commonly seen in patients on PPIs. There is no significant inflammation. There is no evidence of H. pylori, intestinal metaplasia, abnormal infiltrates or neoplasia. These features are confirmed by the immunostain and the Alcian glue/PAS stain. There are no inflammatory, hyperplastic, fundic gland or adenomatatous polyps present.
C. The sections from the specimen (descending, sigmoid, left colon) show the presence of a lymphocytic colitis. It is characterized by the presence of intraepithelial lymphocytosis of the surface epithelium. In addition, increased numbers of mononuclear cells are present in the lamina propria. These consists of lymphocytes as well as plasma cells.
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Regarding PPIs, I have hardly EVER used them. I took them for a month nearly 15 years ago when I was developing an ulcer from a very stressful life situation. And I took them for a week or two about 6 months before this colonoscopy. Would that minimal amount of usage still show? And, BTW, my doctor didn't ask me a single question about my usage based on these results. So freakin' irresponsible!

Does anyone else have any other feedback on this report?

One other thing, I asked my doctor if he had other patients with LC that had benefited greatly from a GF diet... Are you ready for this??? He said... and I quote, "yes, but that is only because they are generally eating healthier when they do this."

How do you GF peeps feel about that little comment?

Any recommendations for GI docs in the Phoenix area?

Post by **tex** » Sat Jul 23, 2011 1:56 pm

Hi Kemah,

That rash certainly sounds like dermatitis herpetiformis, but as tough a time as most doctors have in diagnosing something as simple as celiac disease, most of them wouldn't recognize dermatitis herpetiformis if they had it on the end of their nose. Apparently, if they don't see a disease virtually every day, it isn't even on their radar.

Kemah wrote:Can anyone say how long it would take my body to recover if I am in fact gluten sensitive?

Recovery times vary by the individual, but typically, in conjunction with Entocort, significant improvement should be noticed within 6 to 8 weeks, (some people see faster improvement, and some take longer, of course).

Kemah wrote:Regarding PPIs, I have hardly EVER used them. I took them for a month nearly 15 years ago when I was developing an ulcer from a very stressful life situation. And I took them for a week or two about 6 months before this colonoscopy. Would that minimal amount of usage still show?

The stomach lining changes that were described, especially involving the parietal cells, are quite common with the use of a PPI. Yes, even just a couple of weeks worth of use can cause such changes, and the changes tend to linger for a while. Doctors don't like to discuss such things, because they prefer to pretend that the drugs that they recommend don't cause such undesirable histological changes. Those markers should fade away after a few more months.

Your biopsy results clearly show that you have LC in all segments of your colon, but LC is the only issue that I can see in the report.

Kemah wrote:One other thing, I asked my doctor if he had other patients with LC that had benefited greatly from a GF diet... Are you ready for this??? He said... and I quote, "yes, but that is only because they are generally eating healthier when they do this."

How do you GF peeps feel about that little comment?

Hahahaha. Well, at least he didn't deny that they were benefiting from the diet.

It's tough for doctors to change old habits, so I suppose they prefer to do it in little steps.

Thanks for the laugh.

Hopefully, someone familiar with the Phoenix area will be able to offer some suggestions on a GI specialist.

Tex

Kemah · Post by **Kemah** » Sat Jul 23, 2011 2:20 pm

Don't doctors have to complete continuing education? I was a CPA and had to do 80 hours every 2 years. Don't they read new reports and studies?

sarkin · Post by **sarkin** » Sat Jul 23, 2011 2:51 pm

Kemah,

I love that you're mad. For one thing, if you weren't mad, I would be howling on your behalf, and I'm busy being p.o.'d about a friend's irresponsible doctor just now

Tex is right, they just don't know. Celiac disease doesn't get the press that a condition might get if, say, a very profitable drug treatment were available. Then, they'd be inundated with info. I think that's partly why there's a frenzy of warning people not to stop eating gluten, because... they will... you know, some unnamed nutrient will be missing. (Not sure how I can blame Big Pharma for getting that disinformation out, but I would like to.)

The research doctors do read isn't much better... and of course, they get a lot of their information from the media, which gets it from (in my opinion) the pharmaceutical companies.

I also love that you're mad because I think it predicts success for you - meaning, it will galvanize you to do what it takes. It is my opinion that a new GI might not be what you need (at least not immediately). I am hoping to bring my PCP up to speed instead - since she might actually be able to ponder a symptom that isn't in my gut (and I have had some of those, too). It's possible that, while you're recovering, you may be sensitive to foods in addition to gluten. Some of those sensitivities may stay with you (I believe at least dairy is forever for me, and that Chief Suspect #2); Tex has been able to add many foods back into his diet, in my opinion greatly because he was so methodical and disciplined about removing anything that could possibly be problematic, to optimize healing. For a long time. (Tex is kind of my hero, can you tell?)

It's infuriating that you are right, and your doctor ignorant. It's also good news that you have not yet sustained severe enough damage from gluten that your small intestine showed villous atrophy. And now that you know the real deal, you may never suffer that, which can further impede nutrient absorption and cause other problems. Of course, it would get you an official celiac Dx, but how much sicker would you have to be to 'earn' that?

Congratulations on seizing the reins of your health, and I am sorry you've been through so much to get to this point.

And welcome, by the way. You are not alone - not alone in being medically mishandled, unfortunately, but also there is a lot of help here for figuring this out and feeling better.

Sara

Kemah · Post by **Kemah** » Sat Jul 23, 2011 3:41 pm

Well if you want a little more fodder, every time I see my GI, I remind him that he was unable to complete my colonoscopy and he ignores me. When I went in with my skin problems and reminded him again of the incomplete scope, he looks surprised and read his report for the first time. One year later.

What am I supposed to do? Fight with him? I think I'd trust him even less if he was angry with me.

dgshelton · Post by **dgshelton** » Sat Jul 23, 2011 3:43 pm

Kemah - I agree with Sara. A GI doctor may not be who you need to see. I took my Enterolab results to my GI and he rolled his eyes and said, well if you feel better not eating gluten, then continue to do so, but I cannot condone it. He didn't even look at my results. I took the same results to my internal medicine doc, who is my PCP, and he looked at them and said that it looks like I have celiac disease and to get off the gluten. He had done a celiac blood test, I think he said 2 years ago, which came back negative. I asked if he thought I needed to do another one, his reply was no, we have the answer right here. I don't know if you will be able to find an internal med doc that will take celiac seriously, but it might be a lot easier than trying to find a GI that will.

Your rash definitely sounds like dermatitis herpetiformis. If you go to the celiac website, I'm sure you can find someone else who has the same symptoms, with a diagnosis. If I'm not mistaken, several biopsies have to be taken from different spots on the lesions while they are active to get a good specimen. I know there are plenty of people who have had repeat negative biopsies that finally get a positive one. Have you had yours biopsied? A dermatologist can do that. This disease is very frustrating!

I hope you find some help soon! Have you thought about doing the Enterolab testing?

Hugs,

Kemah · Post by **Kemah** » Sat Jul 23, 2011 3:54 pm

I went to a dermatologist yesterday and told her about the rash. Some of my rash is currently now skin that has lost pigment, but I have a new small patch of rash higher up on my leg. A cluster of tiny red blister like bumps filled with fluid that itch HORRIBLY. She did not even look at it. She did however tell me about the various other non-related products that she apparently gets some type of kickback on. A moisturizer and an SPF wash. I was not in her office for dry skin or sun damage.

Are there ANY good doctors out there?

Kemah · Post by **Kemah** » Sat Jul 23, 2011 3:56 pm

I had written down a note on enterolabs and then forgot about it. I will look into it.

Gloria · Post by **Gloria** » Sat Jul 23, 2011 4:00 pm

Hi Kemah! Welcome!

One of our members, Wonderwoman, lives in Phoenix. Maybe she can make some recommendations for you.

You can find a link to PM her beneath her post here:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=13707

Gloria

sarkin · Post by **sarkin** » Sat Jul 23, 2011 4:00 pm

I think you could request your records (maybe from his receptionist)... I agree, no need to add his antagonism to his lack of helpfulness

I have trained my GP not to say things about my health without checking my chart. She's a quick study, that one. Or I would have broken up with her... and I don't think I should be advising you to do that, even if I might make that call myself.

I wish my getting mad were of more use to you, truly.

--Sara

Kemah · Post by **Kemah** » Sat Jul 23, 2011 4:12 pm

Sara,
I have considered breaking up with him from the start but I am not optimistic that anyone else would be better. The first GI that I went to 6 months before this guy said that based on my symptoms of severe chronic diarrhea 6-8 times per day for months on end with severe cramping, bloating, and flushing in the face was just ibs and I didn't need a colonoscopy and... I "seemed like the kind of person who could live with this". True frickin story.
At least this GI stopped the colonscopy when he realized he could perforate my bowel. That is the only thing I am grateful for...

Kemah · Post by **Kemah** » Sat Jul 23, 2011 4:18 pm

Gloria, thank you. I have PM'd her.

sarkin · Post by **sarkin** » Sat Jul 23, 2011 7:18 pm

Kemah,

I know what you mean (truly, if I could do my own colonoscopies and blood draws, you know I'd be trying to explain how). I truly believe that doctors like this can set you back, and cannot help you. They don't seem to want to (you'd think looking at the rash might at least make your more inclined to listen to her sales pitch. I once saw a dermatologist who spent time selling cosmetic services... he 'noticed' some body hair he could help me with. I told him I was a mammal, and we're kind of like that, also warm-blooded, and I never went back.

"Just IBS" is what you have, eh? I'm kind of wishing your doctors some kind of "it's just blahblahblah diagnosis, at least a temporary one...

I canceled my appointment with a celebrity GI in NYC, because I realized that by the time my appointment rolled around (4.5 months after I called) I was doing so much better, and realized that I know so much more about *my* version of MC, that I'd be basically paying a fortune to bring someone up to speed... and I already need my regular doc up to speed, so I'm going to start there.

One piece of good news is that your dermatitis is very likely to respond to the diet that helps you conquer your LC. If it's related to gluten sensitivity, and it sure sounds like a dead ringer for DH, you'll be killing two birds with one stone. If I were you I'd also try cutting all dairy, and at least temporarily, soy.

The blood tests give so many false negatives, it's a joke. I've read stories of people being tested *every year* for over 10 years... and eventually, their system is so damaged, they "pass" and get the diagnosis. You don't have to wait. You don't need your doctor's help (which you're not getting anyway). You don't even have to wait to eliminate gluten, because the Enterolab tests are highly sensitive for antibodies even after a pretty long time on GF diet.

Denise, your PCP sounds like a sane and reasonable person. I hope mine will be, too.

Feel better, Kemah. I do hope you get some help from those in the medical profession along the way, but I think you have gotten all you're going to from this particular dermatologist and GI guy. If they won't look at your chart, or your rash, they're not practicing the kind of medicine that gets you where you need to go.

All my best,

Sara

Gloria · Post by **Gloria** » Sat Jul 23, 2011 8:24 pm

Kemah wrote:was just ibs and I didn't need a colonoscopy and... I "seemed like the kind of person who could live with this".

I would say this is unbelievable, but unfortunately, it's all to common on this board to read about GIs who are that incompetent. My sympathies to you. I hope Charlotte can recommend someone more helpful.

Gloria

wonderwoman · Post by **wonderwoman** » Sat Jul 23, 2011 11:06 pm

Hi everyone,

Because Kemah asked for a good GI doctor in the Phoenix area, Gloria suggested she ask me in a PM. I answered her but also thought I should update everyone here on how I am doing.

I have been GF since March 2000 and was off Entocort for three months. I was so happy, Normans everyday like clockwork for months so I thought I had this CC licked. Well, in late April 2011 we decided to put our condo up for sale as we wanted to be in a house again. We sold the condo in two days and began to look for a house that would fit our needs and budget. Then there was packing, hiring workman, selecting paint, tile, carpet, fixtures etc etc, then renovating the new house, moving, unpacking and because of all the big time stress the D returned. After three weeks of D I tried my first RX (Balsalazide) and it didn't work so I went back on Entocort June 25th. (I had a supply on hand that I had gotten from Canada last year). I was almost afraid to try it because I heard reports that it often doesn't work the second time. However, it did the trick for me. I will be going down to 1 Entocort every other day this next week. Hopefully I can continue to decrease the dosage until I am off completely again. I have not been posting because I have been extremely busy. Not good! But things are slowing down and we are more settled in our new house. Only problem is, in the condo I knew where everything was and here I don't know where to look for so many things.

There are so many newbies here that I will never be able to catch up on everyones stories. There are several familiar names and faces that I will need to check out.