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lizzy

Saw New Doctor Yesterday

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hi everyone

after waiting 2 months to see a gastro doc about the ct scan i had done where the doctor who had it done said she thought it was celiac diease. i found out from my new gi that in his oppinion that its not celiac its defiantly crohns diease, and as put me on medication for it. i was upset for 3 months now i thought i had fianaly found what was wrong with me i went gluten free and alot of my neuroligical problems settled now not all have gone i have a benign fasiticculations and neuopathy. but my seizures went to only having 3 in the 3 months from having them 3 times a week. alot of my bone pain diminished and i was able to walk as i was in a wheel chair as it was too painful to walk. i asked him how can all this get better if it wasnt the gluten that was causing it , he said stay gluten free if it helps but in his oppion that my nueoligical problems arnt linked to crohns there too different dieases. i now have to try this new medication and go back in 2 months where he will do some biopsys. i left in tears this wasnt what i wanted to hear. Plus when i got home i checked the medication for side affects something i have done because they never sure what they all are and on this medication he as given my in black bold letters it says use in caution with people who have seizures as this will increase them. i called the doctors office up and told them she said she was sure the doctor knows what he is doing. i wonder...

as anyone else had this problem or is it just me. any help would be appricated right now cos am down in the dumps, not knowing what to do next liz

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I can't help in regards to having had seizures before but I would NOT take the drug before talking to the Dr. even if you have to go back. If you can't do that, call the pharmacist and see if they know of another drug that would be safer (I have found pharmacists more helpful and available than doctors) for you. Then call your doctor back and ask them to switch your rx to what the pharmacist recommends if anything. I can tell you from personal experience that many docs don't give a moments thought to what side effects drugs have as they don't have time in most cases. That's why we have to read the labels/instructions to take care of our bodies safely. I'm sure more helpful info is forthcoming on this post but in the mean time, please don't take the med as I don't think it's safe for you. Good luck finding something else to help you get better.

Edited by floridanative

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I agree. No matter what Drs. think, they aren't God and don't know everything. :) (The problem is convincing them of that.)

I've know doctors to prescribe a medicine a person was allergic too, and the fact that the person was allergic was clearly noted in the person's file! So definately talk to the pharmasist and to the doctor. Also, while this doctor thinks it's Crohn's, that also is his opinion. The other dr. thought it was celiac - you treated it as celiac, with diet, and showed improvement. Well, give this doctor's opinion the same chance - treat it as Crohn's and see if there is improvement. If not, then this doctor is probably wrong and the first dr. was probably correct. If this doctor is not willing to change his opinion, with proof, then it's time to find another doctor.

Debbie

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Debbie makes a good point that the diet is working for you. Also, I totally forgot I had more than one doc prescribe meds for me with codiene (or derivitive thereof) in it. I'm highly allergic to codiene. Most times my pharmacy catches the mistkae but once they didn't. I took a narcotic cough syrup that had it and I got to experience what it must be like to be on acid. After that I paid attn. and caught the next docs mistake before I left with the rx.

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I agree, if you have positive responses to the diet, continue going gluten-free. But it would probably be benefitial to toy with the new doctor's diagnosis. BUT I would not take that medicine if it could increase the frequency of your seizures...that's so scary!

How is your doctor so sure it's Crohn's?

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well new findings i phoned the hospital medical records and got them to fax me the report over of the ct scan and in black and white the doctors report says that its celiac diease and i need to get evaluted for it. i dont know how this other gastro doctor who also has a copy of this report thinks its crohns , so i am confused, plus i wont be taking this medication untill i have spoken to my phymisty,

and what i aslo found out to my horow on this report the doctor also says that the clips i had put on fo a tubal have all come off and can be seen laying in my pelvis instead of whee there should be and i need to have an ultra sound for closers inspection and be elevated for this too. BUT i was neve told by the doctor in the hospital of this finding if i hadnt asked fo this report myself i woulnt even know, isnt they a law in this country which says that any findings should be reported to the patient even if it isnt in they field of practise so the patient can seek attention fom the right doctor, so iam now going to call my gyni and have her take a look at this report.

i still believe its celiac fom my findings and how i feel. this doctor yesterday who not only sat through my evauation supressing himself from yawning which my daughter who was with me thought him rude and also when i went to do some moe labs that he had put someone elses name on the lab sheet and alsdo on my prescriptions, i had to go back to the clinic who just stuck on my name , when i went back to the lab the lady was croos they had done it with out doing a new one i said i hope that this is the right lab i need to have drawn it could have been the other persons. this is rediculas .

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What is terrible is that that Dr. is still practicing medicine. Is there some reason, lizzy, why you can't go back to your original Dr.--the one who is on the report? If it were me, I would stay the gluten-free course, you say its helping, and check with another gastro (perhaps the original one) and also with your gyno about the clips. How irresponsible to not tell you they were there! Not only that, but rude on top of it. Listen to your body--you got out of the wheelchair!!!! Thats huge, and the rest of the positive results. I'm no expert on Chron's, but I had to have a colonoscopy to rule that out. How could he tell from a CT scan? Let us know how you do :)

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A gluten-free - better yet a GRAIN-FREE diet - is commonly very effective in treating Crohn's. Check out www.scdiet.org for plenty of testimonies to this fact. So, you're likely to feel better on a gluten-free diet, regardless of whether you have Crohn's or celiac disease - or both.

With that said, I'm confused. I've never heard of Crohn's or celiac disease being diagnosed with a CT scan. Have you had an endoscopy or colonoscopy?

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well i have put a call into my gyni and am sheculad to have an ultra sound monday to find the run away clips and also its a good job my hubby had an versectomy other wise i could have end pregnant as this ct was done in june this year.

also the doctor who did the report for the celiac has left her clinic to go to another hospital in another state thats why i went to a new one but i am thinking i may need to get a second oppion on these findings.

also i canceled my xmas dinner party with the celiac group here in rockford as i felt that because he had changed my diagnoses to crohns that it was a bit hipercriticule to go when i am not sure its celiac.

A gluten-free - better yet a GRAIN-FREE diet - is commonly very effective in treating Crohn's. Check out www.scdiet.org for plenty of testimonies to this fact. So, you're likely to feel better on a gluten-free diet, regardless of whether you have Crohn's or celiac disease - or both.

With that said, I'm confused. I've never heard of Crohn's or celiac disease being diagnosed with a CT scan. Have you had an endoscopy or colonoscopy?

yes i had both done this febuary and no biopsys was taken which the doctor said yesterday that biopseys needed to be done and he wants to do some in feb next year. but when i had them done the other gastro said that i was fine but on too ct scans i have done in an area where no camera can get it show the same jejunum thicking which in the doctor who reads the ct scan on both reports says that this is found in people with celiac diease

from that i beleived that is what i had fell better for the gluten free diet but like you say that crohns patients are too adviced to stay away from grains, am so confused i dont know what to belive anymore

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A second opinion is a really good idea. Like I said, I don't understand how he can be sure you have Chron's anyway if all he is going by is a CT scan. A colonoscopy can do that--did they do one? Its a shame you cancelled your reservation at the party. I'm sure that everyone would enjoy seeing you there whether you have celiac disease or not or something else. Good luck at the Dr. :)

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i canceled my xmas dinner party with the celiac group here in rockford as i felt that because he had changed my diagnoses to crohns that it was a bit hipercriticule to go when i am not sure its celiac.

Crohn's and and celiac are not so different. The intestinal villi are damaged in Crohn's in much the same manner as celiac disease. A gluten-free diet is going to help you, regardless of your diagnosis. There are a lot of folks here - myself included - that don't have official celiac diagnoses, but we feel better on a gluten-free diet. I've found everyone here to be very supportive and I'm sure the group in Rockford is the same.

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A second opinion is a really good idea. Like I said, I don't understand how he can be sure you have Chron's anyway if all he is going by is a CT scan. A colonoscopy can do that--did they do one? Its a shame you cancelled your reservation at the party. I'm sure that everyone would enjoy seeing you there whether you have celiac disease or not or something else. Good luck at the Dr. :)

Hi, Just a quick note, it is an endoscopy that they use to diagnose celiac not the colonoscopy.

:)

hi everyone

after waiting 2 months to see a gastro doc about the ct scan i had done where the doctor who had it done said she thought it was celiac diease. i found out from my new gi that in his oppinion that its not celiac its defiantly crohns diease, and as put me on medication for it. i was upset for 3 months now i thought i had fianaly found what was wrong with me i went gluten free and alot of my neuroligical problems settled now not all have gone i have a benign fasiticculations and neuopathy. but my seizures went to only having 3 in the 3 months from having them 3 times a week. alot of my bone pain diminished and i was able to walk as i was in a wheel chair as it was too painful to walk. i asked him how can all this get better if it wasnt the gluten that was causing it , he said stay gluten free if it helps but in his oppion that my nueoligical problems arnt linked to crohns there too different dieases. i now have to try this new medication and go back in 2 months where he will do some biopsys. i left in tears this wasnt what i wanted to hear. Plus when i got home i checked the medication for side affects something i have done because they never sure what they all are and on this medication he as given my in black bold letters it says use in caution with people who have seizures as this will increase them. i called the doctors office up and told them she said she was sure the doctor knows what he is doing. i wonder...

as anyone else had this problem or is it just me. any help would be appricated right now cos am down in the dumps, not knowing what to do next liz

Hi, You sound just like me...on gluten. I would not take that medication without throughly discussing it with a pharmacist. Actually myself, having suffered gluten induced sub illeal seizures for a few years I wouldn't touch it, but that is me. (Gone now) I would also change doctors. And I would accept the previous diagnosis of celiac, go back gluten free and it your still having tummy problems perhaps see if other foods are bothering your not yet healed tummy. If you are still consuming dairy stop until you have been symptom free for a couple months, at least. Please do not let some doctor talk you into consuming gluten so they can do biopsies. If an actual on paper diagnosis is something you really need why not go the gene route with enterolab and have them check for both celiac and gluten intolerance genes. I hope you have some relief soon, you already have your dietarily proven diagnosis. Best Wishes

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I meant that the colonoscopy could DX the Crohn's. I had both, actually, the colo. to rule out other things like Crohn's and the endo. to test for the Celiac. I was clearer about that on my earlier post on the same subject.

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after recieving a copy of my diagnoses from the first doctor who said celiac diease thats what am going with, as this doctor who i saw wensday when i told him i was staying away from diary he told me that was a wasit of time . that it wouldnt make any differance . i was shocked as it was my primey doc who told me to keep away from the diary and fattey foods cos i get gastitus alot. and i know if i have milk i end up on the toliet more than i need to be.

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