Navigating Diagnostic Process--GI Doc Troubles

[SarahMK]

I was gluten free for two years without official diagnosis--I just ended up gluten free after lots of research and an elimination diet prescribed by one of my many many many docs. Going gluten free relieved me of numerous health issues. I went off allergy medications for the first time since I was five years old. I lost weight. I got pregnant after 10 years of infertility. A whole host of digestive disorders and  chronic body aches went away. Then due to life circumstances (my son was born while we were out of town and we had to live out of a hotel while he was in the NICU) I let gluten creep into my diet again. Any initial symptoms were masked by the fact that I had had major surgery and was on all kinds of pain medication. But after a time it became obvious that I was relapsing. I had sever digestive distress and a whole host of symptoms. I naturally cut gluten out again. A few months later I went to my doc who decided on a whim to run the celiac bloodwork anyway--despite me not having had gluten for two months.

It came back with a positive/high TTG Igg. She referred me to a GI specialist. 

From the moment I walked in the door, the GI specialist has been convinced I have no problem with gluten and that all my problems are because I gave up wheat. I decided to have her do the endoscopy, despite her skepticism, because she said we could do it without me reintroducing gluten and because my clarity on her comments is with 20/20 hindsight. (She told the anesthesiologist--just before sedating me--that I was gluten free because of the Wheat Belly book, a book I have never read even though I have read what might be hundreds of other resources in trying to figure out what has ailed me all my life.) In any case, she said that patients with celiac do not ever completely heal and that she would be able to tell even without me reintroducing gluten, and so I reluctantly went with her. So, yesterday I had the procedure. She greeted me ahead of time telling me she was sure I didn't have an issue with gluten. Then she did the scope. I had a hiatal hernia, esophageal ulceration and symptoms of gastritis--which seem to be consistent with other people who've had gluten sensitivity and celiac. Mine was not severe--but I have been very religiously gluten free again for about 6 months. And yet in recovery yesterday the GI was absolutely positive that my not eating wheat was causing me problems. I eat a varied diet--lots of vegetables, high quality meats and proteins, nuts, fruits, etc. But for some reason the GI is convinced I'm not eating a varied diet. (I am overweight again, which I think possibly prejudices her in this regard.) She recommended prilosec in the interim. I have some issues with nutrient absorption, so I immediately contacted my primary care doc who said I should try a different drug that didn't have the side effects that prevent nutrient absorption and also said she disagreed with the GI and thought that no matter what my results I should never go back to eating gluten--because of my previous symptoms and experience.

Now I'm concerned that the whole endoscopy with her was a mistake and that she is not going to look at it with an open mind--because she is absolutely convinced I don't have a problem with gluten, no matter what my experience and results look like. Has anyone else experienced this?

[squirmingitch]

Sarah, I have not had this experience but I am SO sorry you did. Even though I haven't had this experience, I have read hundreds of stories like yours. It happens more often than not and that is a very, very sad thing. Appalling really.

I wonder if the GI even took biopsies much less the 6 she should have taken to check for celiac disease. Her mindset is against celiac & she's not listening to anyone or anything & that makes her a BAD doctor!

I agree with your primary care doc. Go strict gluten free & never look back.

{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}}}}}

[SarahMK]

Thanks!

Should I call her office and inquire how many biopsies they did of the small intestine? If it comes back negative, is it worth it to go to another doctor and do it all over again? With the knowledge that I never ever intend to eat gluten again (my blood test combined with the abatement of symptoms was enough to confirm for me that I'm doing the right thing for life), is there any benefit to having the positive biopsy? I think it's pretty telling that my bloodwork was positive after months of being gluten free. It's enough to keep me from that one taste of whatever gluten thing everyone is eating for ever.

My primary care doctor is completely on my side, so I feel good about that. She is the one who recommended the GI specialist I saw, which is a big part of why I went with her even after meeting her and knowing she seemed biased. My primary care doc actually talked to me last night, after the procedure, and said that the GI doc wasn't like that in the past--which makes me think the GI doc picks some patients (maybe ones who are overweight, like me) and decides ahead that they don't have it and is more open minded with others who fit whatever profile she's used to seeing or wants to see. For instance, very thin people who still have all the classic symptoms because they haven't been gluten free and mostly gluten free for years.

I don't want to be nuts or just missing something... but I think you are right. She's a BAD doc. I don't have to have a positive diagnosis to think someone is a good doc, but really--how do you push wheat on someone who has symptoms like I've had? (Oh... and I also developed another autoimmune condition--morphea scleroderma--during the period I reintroduced gluten--something the GI doctor knew as well. Now that I have given up gluten again and because of the blood tests have been even more careful about things like cross contamination when eating out, the morphea is almost gone.)

 

[squirmingitch]

I don't know what her problem is but she is so wrong on so many fronts. Patients with celiac DO completely heal. AND her statement of "that she would be able to tell even without me reintroducing gluten" is incorrect. This leads me to believe she didn't even do ANY biopsies. They can't see the damage with the naked eye -- there have to be biopsies examined under a microscope to see the damage & rate it.

Personally, I would not pursue it any further but you're talking to a 58 yr. old who has no children. You do have a child & perhaps will have more children. The only thing about you having a dyed in the wool dx is that it will be soooo much easier to get your child/children tested as they should be every 2 years or sooner if symptoms present. 

I wouldn't bother calling the GI's office to ask about the biopsies. I would get a copy of all your medical records form her including all the info. on the endoscopy. You will be able to tell from that if she did biopsies or not.

I would say to do that & then go to your PC doc & if there were no biopsies done, show that to her. Then have a talk with her about the possibility of her dx'ing you celiac based on the blood and response to the gluten-free diet. 

I do think the GI could very well be biased because of your weight which is one more thing showing that she doesn't have a clue what she's talking about.

[cyclinglady]

Ditto to what Sqirmingitch said!  I am sorry that you had to go through so much!  

 

[SarahMK]

Thanks for your advice! I feel ridiculous for having believed her and not questioned it more. I guess you learn something new from every step on the way.

I do have kids: two of them. My daughter is almost 7 and my son is almost 3. Both have at some time shown signs of having trouble with gluten, but it's difficult to tell. We have been mostly gluten free as a family for a few years now--the exception being the period mentioned above when we started eating it again AND the occasional time my daughter eats something from someone else's lunch. My daughter is scheduled to have bloodwork in a few weeks and will have a celiac panel done. My pediatrician says we need to wait until my son turns three. I haven't really even begun to process what it might be like if their bloodwork comes back positive. I guess I should start reading forums and seeing how it has worked with other people and their kids, so I'm more prepared.

[SarahMK]

Well, the results are back.

The GI did only 3 biopsies/samples. Only one was in the intestine (the other two were esophagus and stomach). She now says I'm cleared of having celiac and should reintroduce wheat. What she did find was evidence of reflux, though thankfully no signs of cancer.

My primary care doctor does not agree with her. And I can't figure out how documented infertility turning to fertility, and all the other stuff could possibly be placebo effect as the GI so clearly believes.

So here's where I am. I had all the symptoms of celiac. I had a positive blood sample even after reintroducing gluten in a very limited way. I gave up gluten and had the biopsy (because the GI specialist mislead me on what she would be able to detect) and it came back negative. I still can't even so much as get a tiny bit of cross contamination in my food without major symptoms. The GI Doc did not even bother sending me the actual test results, she sent me a terse letter telling me to reintroduce wheat and to get on acid reflux drugs. My regular doc is the one who sent me the actual results.

As it turns out, the reflux is because I have low acid, not high acid and the acid reducing drugs the GI prescribed actually made me worse. A few days of increasing stomach acid has helped a lot and removed symptoms I didn't even realize I was having.

I'll take your advice and get ahold of a copy of the records from the GI's office. Obviously I'm going to walk away from it her practice and never look back in any other respect. 

Because I have no intention of reintroducing gluten, I suppose another biopsy isn't necessary or at least wouldn't tell me anything? I'm going to ask my doc if she can diagnose me based on symptoms, recovery after removing gluten from my diet, and my positive bloodwork. If she can't do that, I guess it will just be a fight anytime I am hospitalized or have to seek treatment where they need to know about my issues with gluten and have access to my medical record. I'm not sure where all this leaves me, though I'm absolutely sure it's not to a submarine sandwich on whole wheat bread.

[squirmingitch]

I think you're doing the right thing Sarah. I think your PC doc will be reasonable especially knowing the history of all that happened. Print out copies of recommendations from the U of Chicago Celiac Disease Center Open Original Shared Link pertaining to the # of biopsies and needing to be eating gluten for the endoscopy (gluten challenge) etc... and take them along to your PC doc.