Defensive Doctor

[Wonka]

Yesterday I went back to see the gastroenterologist. I had seen him previously for a colonoscopy (my grandmother died of colon cancer at 53) and an endoscopy (to check for damage due to GERD). The first thing he said to me was that he didn't think I had Celiac Disease (apparently he did a biopsy when he did my endoscopy {first time I was told that a biopsy was performed and this test happened over a year ago} and it was normal - 3 years after I've been gluten free). He was extemely defensive saying things like "I don't know anything I'm just a doctor", "There is alot of flaky information out there" and my favourite "you don't present with classic symptoms of celiac".

My symptoms (presented to him) are as follows (when I am glutened): gas, bloating, constipation with occasional explosive diarrhea, faecal leaking, debilitating fatigue, muscle pain, brain fog, nausea, reflux and migraines. What part of this doesn't fit Celiac? I also have IgA Deficiency, fibromyalgia and hypoglycemia and had gestational diabetes while pregnant (triplets) and a sensitivity to carregeenan and many legumes.

I know that I have muddied the waters by going gluten free before testing. I had no idea about Celiac when I went gluten free. I just felt awful, did an elimination diet and removed the things that made me feel awful from my diet. I went to him mainly to information gather. I have children and I would like them tested. He's not interested in doing biopsies on them but I am planning on getting their blood tested (they don't have the IgA Deficiency so the test should presumably work if they have celiac).

It is a good thing that I have a medical background (I'm a microbiology lab technologist) and that I have good people skills. I worked them on him and he was behaving better by the end of the appointment. He did send me for blood tests for IgA (my numbers have reached normal levels recently but he wanted to see for himself), repeat TTG, endomesial (sp?) anti-gliadin (I think that it), B12 levels, Folate and Iron studies (my family doctor has never thought to check those).

He did concede, at the end of the appointment, that yes I do have a sensitivity to gluten but was really resistant to the idea that it was Celiac.

Is this a typical experience with Gastroenterologists? My family doctor really trusts my powers of observation when it comes to my body so I guess I'm used to receiving alot more respect than I received at this appointment.

[Worriedtodeath]

At least that's the way ours was. Even to the point of telling us that the only thing wrong with our daughter was a lactase deficiency anc and allergist too incompentent to dx allergies. ???? And a ped who didn't recognize the signs of intolerances and food issues. Now given that my allergist and ped are teaching drs at the med school, participate fully in teaching interns and residents and come highly acclaimed, I doubt they are the problem. Especially since both said that she had Celiac and didn't have food intolerances or allergies given the amount of time it took to upset her tummy (weeks!!). He also wouldn't even do a followup visit or talk to us about the biopsy results. So mine at least has a God Complex.

Stacie

[Wonka]

It's nice to know that I'm not the only one to experience this kind of insensitivity by doctors.

[Ridgewalker]

I recently read an awesome saying that I've been just dying to work into a conversation. It seems to fit your situation perfectly. Next time, tell him--

"Don't pee on my head and tell me it's raining!"

If you really say this, you must come back and tell us his reaction!

[2kids4me]

Fortunately not all doctors are like this. We have a wonderful GI doc for both kids, he is on the board for a Canadian celiac group. The first appt with him for my daughter, I reviewed symptoms with him, and many were neurologic (migraines, neck aches, backache), also stomach aches, bloated abdomen, considered overweight for her height, no diarrhea. Prior to the appt the clinic sent a 3 day food diary and symptom chart to be filled in prior to the appt so he could correlate symptoms to foods if possible. First thing on his list of investigations was bloodwork for celiac, when it came back borderline he wanted to biopsy because all her worst symtoms were associated with pasta or breads. Biopsy showed villous atrophy consistent with ceiaic...next thing he insisted on was testing her brother and suggested that myself and husband be tested. My son had mild GI upset from time to time, leg pains and bedwetting. Was very glad to have had this doctor as my son had more intestinal damage than his sister! (Bedwetting ceased within a couple of months gluten free). My blood test was negative but I feel better in general going gluten free.

There are some good docs out there!

[Wonka]

It sounds like you have a wonderful doctor. I'm going to ask my GP to order a the blood test on my kids and if any of them indicate the need for a biopsy I think I'll contact the Vancouver Chapter for a recommendation for a specialist. I don't want them to have deal with this man's insensitivity.

I had a similar experience with the Rheumatologist who I was sent to when my doctor suspected fibromyalgia. It took me months to get into her so I had plenty of time to do research. She did the lamest tenderpoint test (she did not use the amount of pressure required according to anything that I had researched), seemed bored the entire time and then wanted to call is soft tissue pain syndrome instead of fibromyalgia because I had only 8 out of 18 tenderpoint. The fact that I was riddled with a plethora of other symptoms didn't factor in for her. I called her on it. Told what I had researched and she changed her diagnosis to fibromyalgia (many Rheumatologists don't want to call it fibromyalgia which is unfortunate as it is hard enough to get disability insurance with the diagnosis and near impossible without it). I did change doctors after that visit and now go to a wonderful doctor who gives me great ideas and advice for managing this condition.

[2kids4me]

It sounds like you have a wonderful doctor. I'm going to ask my GP to order a the blood test on my kids and if any of them indicate the need for a biopsy I think I'll contact the Vancouver Chapter for a recommendation for a specialist. I don't want them to have deal with this man's insensitivity.

and ask for a pediatric GI...the doctor who saw our kids said that symptoms are so varied and children often present with "Non- classic" symptoms. I cant quote the dr exactly but he said something like: Celiac disease is one of the great " imitators" (meaning the symptoms could match a number of conditions) and any child presenting with seemingly unrelated symptoms - GI, neurologic, muscle pains, fatigue etc ...should always be checked for celiac and then he had list of other less common conditions to check for, if celiac was negative. He checked babies and toddlers for inborn arrors of metabolism, and genetic condition as as well as celiac ....he said that to miss an inborn error is unacceptable, and a dr should never focus in on one condition in children, but have list of "rule outs" before dismissing a problem....again been a few years so I am summarizing the message I left the appt with....

Sandy

[Wonka]

and ask for a pediatric GI...the doctor who saw our kids said that symptoms are so varied and children often present with "Non- classic" symptoms. I cant quote the dr exactly but he said something like: Celiac disease is one of the great " imitators" (meaning the symptoms could match a number of conditions) and any child presenting with seemingly unrelated symptoms - GI, neurologic, muscle pains, fatigue etc ...should always be checked for celiac and then he had list of other less common conditions to check for, if celiac was negative. He checked babies and toddlers for inborn arrors of metabolism, and genetic condition as as well as celiac ....he said that to miss an inborn error is unacceptable, and a dr should never focus in on one condition in children, but have list of "rule outs" before dismissing a problem....again been a few years so I am summarizing the message I left the appt with....

Sandy

Thanks for the info. Hopefully they don't have this or any of my other ailments but I do want a doctor to be thorough.

[Nancym]

Please remember that if your villi are not totally destroyed you have a rather large chance of the blood work being negative.

[Wonka]

Please remember that if your villi are not totally destroyed you have a rather large chance of the blood work being negative.

I've not heard that before. Do you have a link for any further reading about this?

[Worriedtodeath]

I'm not the one who posted that and I don't have a link for it but I do in my experience know that the TTG numbers correlate to the degree of intestional damage usually. THe lower the TTG the lower the damage. My kids all had ttg of .5 and the one who had the biopsy had no damage which the ped said would probably be the case since the ttg was so low. Might be different with adults.

Stacie

[jennacdn]

Hi Wonka,

The Canadian Celiac Association will not be able to recommend specific GI's as a policy. However there is an opportunity to meet one of our local Pediatric GI's at an upcoming event that the Vancouver Chapter is hosting on April 5th. It's posted on the calendar on this site for that day and you can also read more about it at www.vancouverceliac.ca

The event is also an opportunity for you to meet other families with celiac disease or that are gluten-free and perhaps there you can get a personal recommendation from someone.

Jenn

[Wonka]

Hi Wonka,

The Canadian Celiac Association will not be able to recommend specific GI's as a policy. However there is an opportunity to meet one of our local Pediatric GI's at an upcoming event that the Vancouver Chapter is hosting on April 5th. It's posted on the calendar on this site for that day and you can also read more about it at www.vancouverceliac.ca

The event is also an opportunity for you to meet other families with celiac disease or that are gluten-free and perhaps there you can get a personal recommendation from someone.

Jenn

Thanks Jenn. Are you the Jenn that I met at Panno Rizo recently (my name is Veronica)?

[MDRB]

Yesterday I went back to see the gastroenterologist. I had seen him previously for a colonoscopy (my grandmother died of colon cancer at 53) and an endoscopy (to check for damage due to GERD). The first thing he said to me was that he didn't think I had Celiac Disease (apparently he did a biopsy when he did my endoscopy {first time I was told that a biopsy was performed and this test happened over a year ago} and it was normal - 3 years after I've been gluten free). He was extemely defensive saying things like "I don't know anything I'm just a doctor", "There is alot of flaky information out there" and my favourite "you don't present with classic symptoms of celiac".

FIND A NEW GASTROENTEROLOGIST NOW!

I think we've all had doctors like this. There is not enough awareness about celiacs amongst the medical community. I basically diagnosed myself before going to my GP and demanding tests and the name of a good gastroenterologist. This followed years of being passed around by doctors telling me one of three things:

1. I have an unknown virus

2. I am suffering from depression

3. There is nothing wrong with me

My endoscopy results were positive for celiacs and it has left me extremely annoyed with every doctor I have seen for the last eight years, anyone of them could have picked it up with a little effort. Years of medical training versus a couple of hours on the internet and five minutes of asking family history questions of my mum. lol

I acknowledge that it is a tough job, but there are some doctors out there who simply cannot be bothered.

[jennacdn]

Thanks Jenn. Are you the Jenn that I met at Panno Rizo recently (my name is Veronica)?

Yep, that's me! Will you be there again next week? April 3rd?

Jenn

[Tim-n-VA]

Please remember that if your villi are not totally destroyed you have a rather large chance of the blood work being negative.

That one is not clear to me from reading this board for a while. I've seen conflicting posts as to whether the TTG causes villi damage or if villi damage causes high TTG.

In either case the correlation between the two would hold but I was under the impression (can't cite anything) that villi damage is the effect not the cause.

[Wonka]

Yep, that's me! Will you be there again next week? April 3rd?

Jenn

I better write that date down. My brain has been so foggy lately( between celiac, fibromyalgia and being perimenapausal I've had quite the ride lately. lol). I'm going to try really hard to remember to come.

[gfp]

FIND A NEW GASTROENTEROLOGIST NOW!

I think we've all had doctors like this. There is not enough awareness about celiacs amongst the medical community. I basically diagnosed myself before going to my GP and demanding tests and the name of a good gastroenterologist. This followed years of being passed around by doctors telling me one of three things:

Unfortunately true !!!

You can usually tell if they are interested or .... its just another patient on another day. If the MD/GI doesn't respond and LISTEN its going to be an uphill battle. Even when they acknowledge one aspect you will need to fight for the next.

Easier to get a GI that is aware or willing to listen...

One day it might be "something else" and you don't need your GI having put you in a mental cupbaord of "obsessed with XXX"