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mrsry

This Doctor Is Not Worth My Time

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I saw the doctor earlier this week and was very disappointed with my experience. I laid out the facts for him--that I tried eating gluten-free and it improved my symptoms dramatically, but they came back when I tried regular food again. He was not convinced. He tried to tell me that I'm "not classic" for celiac, and doesn't think I have it. Hello? I have cramping and diarrhea when I eat anything with even traces of wheat. My severe migraine problem disappeared when I went gluten-free. He didn't even talk about gluten or celiac with me, just said he didn't think I have it. He also told me that after I gave 7 vials of blood, the lab canceled my bloodwork for celiac and did something else for my Topiramate levels.

He told me he wanted me to do a breath test for SIBO, but explained nothing about the condition, why he thought I might have it, or anything. He also wants me to come in and do a barium x-ray. Again, absolutely no explanation of why he'd want to do that.

I don't have the luxury of taking two days off from work for tests that I don't think I need, especially when he won't justify doing the tests. How is this guy the chief of gastroenterology at Penn? I have the breath test scheduled, but I think I'm going to cancel it, because I don't want to go back to him. I spent some time going through a lot of tests with him last year and in the end he didn't even follow up with me--he left me stranded after my endoscopy wondering what to do. At this appointment I noticed that he tried to avoid discussing the fact that he couldn't come up with a diagnosis or treatment back then. Amazingly, he lists celiac as one of his specialties on the Penn Health website.

Do you think it is reasonable not to go through with the tests he wants? I just don't want to waste any more of my time with him, and there are consequences at the school where I teach for taking days off. He's not worth it.

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Celiac.com Sponsor (A8):

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I do agree wiht you on looking for another doctor.

Wow, does he diagnose by looks? New test for celiac, a mirror? (read that on the irish celiac forum--a paitnent was told she did not look celiac....and that was her comment)


gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.

daughter officially diagnosed celiac and casein intolerant.

non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5

Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet

Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

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SIBO is a very real possibility, whether or not you also have celiac disease or gluten sensitivity. In fact, if you do, it makes it even more likely. Anyway, it might be worthwhile to have the SIBO test done, it shouldn't take long.

They were telling me to block off at least 4 hours for the test, and I know there are always delays at that hospital. So I'd have to take an entire day off.

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I saw the doctor earlier this week and was very disappointed with my experience.

Ugh time to find a new doc.

I had a similar experience w/ the head of gastro at Stanford. Bloodboilingly infuriating.

I can't comment on what tests may or may not be worthwhile, but if he won't explain them, I'd get them elsewhere if needed.

Hopefully you find a Dr who understands that your diet changes and effects ARE a test.


>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03

Dairy-free since 10-04

Soy-free since 5-07

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"I laid out the facts for him--that I tried eating gluten-free and it improved my symptoms dramatically, but they came back when I tried regular food again."

You have diagnosed yourself through the most accurate fool proof way you can, IMHO. I am going to be short and sweet here- You do not need a doctors permission to go gluten free. If going gluten free helps you to feel better then that is all you need to know at this point. I had many doctors who failed to diagnose me because I don't show up on blood work, what changed their attitudes with me after an allergist (MD) finally diagnosed me was the fact that they didn't see me for a year or more after I was diagnosed. I no longer needed the multiple monthly appointments with specialists to try and figure out why I was close to death and in constant unbearable pain. My regular MD when I went in for a yearly wellness checkup didn't recognize me.

The main concern in my mind when it comes to diagnosis is the others in your family, having it recognized in you makes it easier to get the rest of the family to test. My family needed no urging after my recovery and the doctors had no problem testing them when they realized the differnce gluten avoidance made in me. Oh and all of my family members were also positive when tested but the difference is that for 2 family members the diagnosis came BEFORE they got as ill as I was, they didn't even think they had symptoms till after the symptms were gone.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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My understanding is that the "classic" symptoms for celiac are only showed by a minority of celiacs. It is amazing that someone who should know better thinks he can look at you and tell. What's worse, he drew the blood but then didn't do the testing, which would have been the easiest thing to do. (The only justification I could see for NOT doing the tests was if you had not been regularly eating gluten. Being gluten-free for any period of time would have rendered the tests inaccurate. But this isn't the reason he gave <_< )

Ravenwoodglass put it well. You don't need a doctor's permission to stop doing things that make you feel ill.

Even if you want more testing, don't do it with this doctor. He doesn't explain things or followup with you, canceled tests that were clearly warranted (yeah, right, the LAB on its own decided to cancel tests ordered by a doctor), and still thinks that celiac has "classic" signs.

I would recommend staying gluten-free. If you want some sort of test, go to Enterolab. You can do this on your own without a doctor and the testing will work up to a year after going gluten-free. Also they can test you for intolerances to other foods that commonly accompany intolerance to gluten. OK, you end up knowing it is "gluten sensitivity" and don't know for sure if it is celiac, but that doesn't really matter. Feeling better is what is important.


McDougall diet (low fat vegan) since 6/00

Gluten free since 1/6/07

Soy free and completely casein and egg free since 2/15/07

Yeast free, on and off, since 3/1/07 -- I can't notice any difference one way or the other

Enterolab results -- 2/15/07

Fecal Antigliladin IgA 140 (Normal Range <10 units)

Fecal Antitissue Transglutaminase IgA 50 (Normal Range <10 units)

Quantitative Microscopic Fecal Fat Score 517 (Normal Range <300 units)

Fecal anti-casein (cow's milk) IgA antibody 127 (Normal Range <10 units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (subtype 5,6)

Fecal anti-ovalbumin (chicken egg) IgA antibody 11 (Normal range <10 units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 11 (Normal range <10 units)

Fecal Anti-Soy IgA 119 (Normal Range < 10 units)

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2 of my sons have had 2 different doctors look at them and state, "You don't look celiac!" One even told one son he doesn't look diabetic! He was asking to be tested for both, my ex is a type 2 diabetic who is now insulin dependent and has a heart condition because of it. That son is now pre diabetic at 30 years old, is on GERD meds, has arthritis in his knees and other complaints. The other son is 26 with high blood pressure, hypothyroid, GERD, and anxiety meds, but the doctors will not test them for celiacs--I told the boys to get new doctors. I am celiac, my sister is celiac and our father is celiac---which greatly increases the odds for the boys. I told them they can try gluten free without knowing, but they aren't ready to be committed to it now. My daughter came here to New York to spend a month with me and felt so much better eating with me, went back to her dad's and was eating mac and cheese again. She called and asked me how she can eat cheaply without mac and cheese, so now she is trying the veggie route. :rolleyes: I have been trying to convince her for so long.

So many doctors just do not get it, they really have no idea. I had an echo cardiogram done yesterday and the person doing it says to me, "I think it is so cool when a body does not tolerate a food, your body is simply telling you that food is not acceptable!" She says to me, maybe you can eat organically grown potatoes, you just can't have those that have chemical sprays on them.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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