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Good News - Bad News

Claire

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Claire Collaborator
Claire
Posted

This post could have gone under Doctos as well but hope you all find it here. It is relative to doctors as well as to tests common for celiacs.

I had a colonoscopy and endoscopy yesterday. The colonoscopy was negative - the good news.

The endoscopy results will be back in 10 days. These tests were done by my new GI, He passed the initial interview test with flying colors. Read on to find out how he did after that.

The bad news: the endoscopy revealed gastritis. The WORST NEWS - the doctor failed to take a biopsy of the stomach lining so the type of gastritis could be identified. There are several types - different treatments.

I am MAD and frustrated. I was given a prescription for a med. - but that is ridiculoius. He has no idea what type of gastritis I have. How can he know what to prescribe? Absolute lunacy. He was right there taking a biopsy of the small intestine - a breeze to take a stomach lining biopsy at the same time.

The med he gave me is the same one given to my daughter who has acid reflux. They didn't take a biopsy for her either. Turned out as she keep getting worse, I told her that the symptoms for too much acid and too little acid were almost identical. The med was given to reduce stomach acidly. She stopped the med and improved immediately. No way am I taking that med if they don't know what type of gastritis I have. There is an autoimmune type, common in people with autoimmune diseases. Given my history, that seems the most likely but I will never know unless I have another endoscopy. Insurance wouldn't cover another one for at least a couple of years!

Lesson learned - you tell the doctor if he finds anything at all amiss - take a biopsy! You should not have to tell them to do the obvious - but it seems you must.

As gastritis is a likely problem for those with celiac, I will post some info on the subject under another topic.

Claire

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jerseyangel Proficient
jerseyangel
Posted

Gosh Claire, thanks for the heads up. Sorry the doctor didn't go the extra step to find out what you are dealing with. I was found to have gastritis, too during my endo. No other info, and I have terrible reflux. I seem to do better with digestive enzymes--as usual I found that out through trial and error. I'll look forward to your info on this.

let-the -sun-in Newbie
let-the -sun-in
Posted

Hi Claire

when i had my endoscopie i too had gastritus and they took loads of biopsys to make sure it wasnt stomache cancer . I was given acifex for the stomach and it did help but i do still get this frequantly. what was the med he gave you? .

I dont understand why he wouldnt take biopsys thats crazy. my gi told me everything was fine but i got a copy of the results and in black and white she had written that she surspected celiac diease but didnt do anything more. I wouldnt have known if i hadnt got the report. good luck

corinne Apprentice
corinne
Posted

My doc. found gastritis too when he did the endoscopy and he said there was no need to look at it further since I was young and work in a stressful job and it would go away when things calm down. :angry:

Claire Collaborator
Claire
Posted
  • Author
My doc. found gastritis too when he did the endoscopy and he said there was no need to look at it further since I was young and work in a stressful job and it would go away when things calm down. :angry:

Hopefully he is right - that it will go away. I will be posting some material on the subject. Claire

tiredofdoctors Enthusiast
tiredofdoctors
Posted

Claire -- I am so sorry. What a jerk. When I had my endoscopy, the GI doc said that I had mild inflammation, but it wasn't anything to worry about, and didn't need further follow-up. He also told me that, given the meds I had been taking, it was an appropriate amount.

I think that guy should have at least taken 1-2 samples -- he was RIGHT THERE. Those kinds of "blow-off" indicents give doctors the reputation that they don't care. Did he mention his initial impression of the intestinal villi? I'm sure he would have been able to at least see if they were flattened, plump, etc. ..

I'm hoping you'll get a definitive result -- in the meantime, take care of yourself. You deserve better than how you were treated. (((HUGS))), Lynne

Claire Collaborator
Claire
Posted
  • Author
Claire -- I am so sorry. What a jerk. When I had my endoscopy, the GI doc said that I had mild inflammation, but it wasn't anything to worry about, and didn't need further follow-up. He also told me that, given the meds I had been taking, it was an appropriate amount.

I think that guy should have at least taken 1-2 samples -- he was RIGHT THERE. Those kinds of "blow-off" indicents give doctors the reputation that they don't care. Did he mention his initial impression of the intestinal villi? I'm sure he would have been able to at least see if they were flattened, plump, etc. ..

I'm hoping you'll get a definitive result -- in the meantime, take care of yourself. You deserve better than how you were treated. (((HUGS))), Lynne

Thanks, Lynne. I was waiting for you to drop in. I really believe when the doctors do a half dozen or more of these procedures in a morning that they don't know one patient from another - you are just another bare arse on the table! If he had really remembered our office conversation then he would have registered 'autoimmune history' and would have taken a biopsy to check if it was an autoimmune gastritis. Too late now. It will be at least two years before insurance will cover the procedure again. Of the possible causes (types) stress related or autoimmune are the most likely. I certainly have been stressed out since 1996 when a negligent eye surgeon permanently damaged my vision. Then this past two years the ataxia has been an additional issue.

The endoscopy report will be back in 10 days. I expect it will be negative but I really almost hope I am wrong about that. I really need to get something nailed down. Thanks - hugs I need. Claire

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tiredofdoctors Enthusiast
tiredofdoctors
Posted

Hi Claire

I almost hope that your celiac biopsy is positive, too. I hate to say that, though. At least you would get some definitive answer. Did you read about the MR Spectroscopy in gluten ataxia patients? It was really interesting. It said that, even though they did not show significant cerebellar degredation on a traditional MRI, this test showed marked decreased signal and decreased activity almost throughout the cerebellum -- all due to the gliosis and the destruction of perkinje cells. It was on one of the Neuro forums . . . I'll try to pull up the site.

I think the only question would be, where in the US do they have a MR spectroscopy machine??? :huh:

Sending you many more ((((((HUGS)))))) and I hope you start recovering from what sounds like a disappointing and borderline traumatic experience. Take care of you, Lynne

Claire Collaborator
Claire
Posted
  • Author
Hi Claire

Sending you many more ((((((HUGS)))))) and I hope you start recovering from what sounds like a disappointing and borderline traumatic experience. Take care of you, Lynne

Thanks again. If you can find the article I would like to see it. Claire

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      Very good pizzeria with small dining room in back of the restaurant. The owner's daughter has celiac & they have gluten free pizza & a gluten free menu. Some items from the regular menu can be made gluten free also. They have a lunch menu which we ordered from & my chicken with spinach & mozzarella over gluten-free penne was delicious. They also have Tuesday night pasta specials & Thursday night chicken pasta specials. We plan on going back for dinner soon.
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