Ggrrr New Dr

[ebrbetty]

Hi guys, went to another new gastro today, hes suppose to be one of the best..well..we were talking about my symptoms, I mentioned that when I was eating gluten I got severe stomach pain everyday, 2-3 hours after i eat i would be on the floor with severe stomach pain..he then told me celiac DOES NOT cause stomach pain like that, ever and he does not think I have celiac. maybe gluten intolerance

I am so upset, he wants me to mail him my blood test results from december, thinks the borderline positive is not good enough to prove anything. i did get a biopsy last month, it was negative but i've been gluten-free since dec

so frustrated

[Judyin Philly]

I'm so sorry for you!

your tests were like mine but didn't do biop or scops..dr's both internist for 25 years and gi dr said try diet if it works you have your answer..

I did and it worked and feel great..

Please listen to your body. i know you hate going to dr. to get beaten down..but alot of us out here have said --the gluten-free diet proves it helps us so what's to question.

know were used to 'having the dr give us dx' but times are changing i think.

my gi said. " Judy, if i lit a candle and told you to put your finger in the flame, would you have to put your finger in it to PROVE to you it would burn?" Love my GI very much into common sence. are you around Philly

hang in there and come to us for 'valadation'

judy in philly

[Guest nini]

Celiac most certainly can cause that severe stomach pain... what is he thinking? oh, that he's the "expert" and therefore knows everything? I'm sorry, he's wrong. Borderline positive is sufficient enough to dx Celiac/Gluten Intolerance... they are the same thing anyway... regardless of what the so called "expert" thinks... besides, Celiac is only one of the many manifestations of gluten intolerance and honestly it really doesn't matter if you call it Celiac, gluten intolerance or boogity boogity for all I care, the treatment is still the same, strict adherence to the gluten-free diet for life if you want to be healthy.

If you do not like the way you were treated at the Dr.s office (and I certainly wouldn't have liked this treatment) find another Dr.

[Judyin Philly]

Nisla--

HA this is what I'm going to call my disease....

tired of try to describe celiac disease...so now let them go figure this one out...

I have boogity boogity

Have a great day

judy

[Guest nini]

Nisla--

HA this is what I'm going to call my disease....

tired of try to describe celiac disease...so now let them go figure this one out...

I have boogity boogity

Have a great day

judy

yeah, I'm in a mood this morning! did a massage at 8:30 this morning and came back home to have a smoothie and check in with you all before going to the health food store to do mini massages for the rest of the day! boogity boogity! I don't know where that came from!

[Ursa Major]

Betty, that's inexcusable, you ought to fire that doctor. He is wrong, and doesn't deserve to make any more money off you.

Just be on the gluten-free diet and forget about doctors, what do they know! Unless a doctor has celiac disease himself, he can't possibly know what it's like, it's all theory. You know how you feel on and off gluten. Stay off gluten, and out of doctor's offices, and you'll be fine.

[ebrbetty]

thanks guys

he has me so confussed..he said other ppl who say they have severe stomach pains with celiac just think its the gluten, but its not, that eating gluten would not in anyway give me pain within a few hours of eating it!

hes going to get intouch with me next week, may want me to go on a very high gluten diet for 4 weeks then do another biopsy..i could not live through that pain again!!

I went to him because I still have stomach pain everyday not as bad as before going gluten-free, its more my ulcer and the slow gastric empting problem

these are the blood test results from dec..i was already 4 weeks gluten-free although I was getting a little gluten from a mix I was coating chicken with once a week

TTG AB [iga] 14...test range 0-19

Antigladin AB [iGA] 19...test range 0-19

Antigladin AB [iGG] 26...test range 0-19

test results...borderline possitive celiac sprue

he said this is not a borderline possitive at all even though I was 95% gluten-free at the time of the test..also told me the Antiglagin AB [iGG] has little to do with celiac

help!!

[Ursa Major]

thanks guys

he has me so confussed..he said other ppl who say they have severe stomach pains with celiac just think its the gluten, but its not, that eating gluten would not in anyway give me pain within a few hours of eating it!

hes going to get intouch with me next week, may want me to go on a very high gluten diet for 4 weeks then do another biopsy..i could not live through that pain again!!

I went to him because I still have stomach pain everyday not as bad as before going gluten-free, its more my ulcer and the slow gastric empting problem

these are the blood test results from dec..i was already 4 weeks gluten-free although I was getting a little gluten from a mix I was coating chicken with once a week

TTG AB [iga] 14...test range 0-19

Antigladin AB [iGA] 19...test range 0-19

Antigladin AB [iGG] 26...test range 0-19

test results...borderline possitive celiac sprue

he said this is not a borderline possitive at all even though I was 95% gluten-free at the time of the test..also told me the Antiglagin AB [iGG] has little to do with celiac

help!!

Betty, if these were your results AFTER being gluten-free for four whole weeks, they would have been HUGELY positive four weeks earlier! This doctor is an idiot, I'd be upset with you if you even consider seeing this incompetent man again!

I get severe stomach cramps within minutes of being glutened. I know it is common. He is an idiot. Don't go back on gluten for ANYBODY! Especially not somebody like him. Tell him that you're done with him. And you know, four weeks of eating gluten would NOT yield a positive result on a biopsy, it's way too short.

You may have other intolerances besides gluten. Have you eliminated dairy? That's the most likely culprit. If it isn't dairy, you'll need to do an elimination diet. You can figure it out, you probably don't need a doctor for that.

[ebrbetty]

Betty, if these were your results AFTER being gluten-free for four whole weeks, they would have been HUGELY positive four weeks earlier! This doctor is an idiot, I'd be upset with you if you even consider seeing this incompetent man again!

I get severe stomach cramps within minutes of being glutened. I know it is common. He is an idiot. Don't go back on gluten for ANYBODY! Especially not somebody like him. Tell him that you're done with him. And you know, four weeks of eating gluten would NOT yield a positive result on a biopsy, it's way too short.

You may have other intolerances besides gluten. Have you eliminated dairy? That's the most likely culprit. If it isn't dairy, you'll need to do an elimination diet. You can figure it out, you probably don't need a doctor for that.

thank you so much for the support, everything you just posted is just what I was thinking!!

I avoid dairy as much as possible, when I do it it I take a lactose pill

its so hard to find a good dr, most don't know enough about celiac disease

thank you again, I thought my blood test results were enough proof to go gluten-free..he just shook his head at me and said that is not a possitive result!!

hugs Betty

[jerseyangel]

Hi Betty

Don't blame you for being confused--considering you're still in so much pain!

My guess is that the pain is from your ulcer and the emptying problem *and* from the Celiac. Celiac can certainly cause the kind of pain you describe--at least mine can! Granted, it dosen't happen to me very often any more--and I don't have the other conditions that you do, but I have had terrible stomach pain when glutened.

I agree that if your bloods were borderline high after 4 weeks mostly gluten-free, they almost certainly would have been much, much higher before.

If it were me, I would not go back to this doctor. He's going to fight you on everything if he dosen't believe you have Celiac--which you obviously do.

I know how frustrated you must be by now--I truly hope that you find an answer to all of this.

[wolfie]

I am so sorry, Betty! That really stinks. I say do what makes you feel better!! What a moron that dr sounds like. My son is biopsy diagnosed and gets stomach pain with gluten. So do I, but I am not biopsy diagnosed. My bloodwork looked much like yours. I agree with everyone though, who cares what you call it, you know that the gluten-free diet helps you. As far as your stomach pain now, have you thought about casein or soy possibly causing the pain? Soy does it for me, too, without a doubt.

(((HUGS)))

Nini....love the "boogity boogity" LOL!!!

[ebrbetty]

thank you all again, this can be a very frustrating disease

I'm going to stick with the diet, he told me to stop taking the levsin, its the only pill that helped my pain but he said it slows down digestion even more..now i wonder if that's true

[Guest nini]

so are you taking lactaid? are those confirmed gluten-free? I don't know personally that's why I'm asking. I had to avoid dairy for the first six months after my dx of boogity boogity.

[CeliacStinksKLS]

Betty, you and I are living similar lives. I also went to a new gastro on Wednesday and she's like, "I don't think you have Celiac." And I told her how I feel after I eat something with gluten in it and she was still skeptical, so I just got aggravated and said, "Fine. Believe what you want to believe. I know the truth and I know my body." She wanted me to eat gluten for 3-4 weeks just so I could be tested the day of the endoscopy, but I didn't want to. And I told her that people with Multiple Sclerosis are supposed to be on a gluten free diet anyway, so that's what made her stop questioning me.

So I know how you feel. It's very frustrating. Especially since my blood test was positive.

KLS

[Judyin Philly]

Betty your experience is so like so many of us

pain with gluten

low #'s b/c you were on gluten when tests were done

after going gluten-free 5 months or so alot of us found we then had to cut out dairy and soy.

Please don't let anyone talk you into the gluten challange ...it is stupid....JUST LIKE THAT DR.

JUDY IN PHILLY

[daffadilly]

Well Judy not only looks like me but she sounds like me too!!!!!!

Geez, what is it with these idiot doctors??? & their egos, which is most of the problem they want to be all knowing & in charge & we are supposed to blindly obey - those kinds of doctors are not going to cut it with those of us who stay on the internet each day, talking about all aspects of this disease & sharing our experiences.

Betty, you can figure out what it is. Keep a food journal & do what you have to do to get well, small meals, no dairy... Go back to a core safe list of plain foods & then start adding back things one at a time.

Draw up your own list of what you think your basic safe core foods are.

Mine are: rice, chicken, carrots, sweet potatoes, apples, cabbage, tuna, celery, & cooked onions

I think you will find it is something simple. Only thing I might add is that some of us have gall bladder problems, so you might want to get a scan of your gall bladder to make sure that is not it - unless you can tell it is only your tummy, but you know when that pain sets in it is sometimes hard to pin point.

One other note about additional food allergies, those can crop up at any time. So that might be what it is. 50% of us have a problem with dairy, then it is soy, egg, & corn. I for one cannot do potatoes which is a real bummer.

re ulcer, I thought there was a round of three antibiotics or something that you could take & get rid of ulcers?

I got a big lol out of the boogity boogity

Oh & find a new doctor & that gluten challenge thing is the dumbest thing anyone ever thought up & I think that people that put their kids or themselves thru that to please a doctor is just plain stupid. Sorry, I just had to use the S word, as my grandchildren would say!

[Guest ~jules~]

Yep, docs are wonderful huh. Not my gi, but my family doctor treated me like I was an idiot for wanting a routine diabetes thyroid test, which both run in my family strong. He made a comment about how diabetes is only present usually in the obese. True sometimes, but not always...I just stared at him. Then my gi doc and I were discussing celiac after he called me with the diagnosis. He said oh its like an allergy its not genetic. Ugh, I really think dr.s should be required to continuously renew their education, in a perfect world that would be nice huh...

Also...To quote my father, I wish I could be paid that kind of money to sit around and be a dumb***!!! lol, just had to share that

[eKatherine]

I avoid dairy as much as possible, when I do it it I take a lactose pill

Lactaid only helps if your only problem with dairy is lactose intolerance. If you are sensitive to casein or some other component, the only thing that can be done is to eliminate dairy entirely.