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    Do you have questions about celiac disease or the gluten-free diet?

Dana

Doctor In Raleigh/cary, Nc

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I'm needing a recommendation for a knowledgable doc in Raleigh, NC area. This is for my mother-in-law whose GI diagnosed her with possible celiac in Nov. 2004. We learned over the telephone, but knew something about the disease because of a friend who has it. We immediately made the changes, emptied her pantry and eleminated gluten from her diet. Within three weeks she went from death's door to feeling "human again". Unfortunately the GI gave her ignorant advice at a follow-up and since then we have had a hard time convincing her how important the diet is. Now she is anemic and failing again and we need help!!!! Her primary doc know nothing. Any advice is much appreciated.

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I'm needing a recommendation for a knowledgable doc in Raleigh, NC area. This is for my mother-in-law whose GI diagnosed her with possible celiac in Nov. 2004. We learned over the telephone, but knew something about the disease because of a friend who has it. We immediately made the changes, emptied her pantry and eleminated gluten from her diet. Within three weeks she went from death's door to feeling "human again". Unfortunately the GI gave her ignorant advice at a follow-up and since then we have had a hard time convincing her how important the diet is. Now she is anemic and failing again and we need help!!!! Her primary doc know nothing. Any advice is much appreciated.

What exactly did the doctor tell her in the way of advice?

Tom

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Dana: I am in North Carolina as well, but not near you. Contact Duke, or is there a hospital at Carolina that can help you. You need a gastro doctor. I have no names to give you, but they certainly could recommend a go gastro doctor what you could pull in. Pull up the University system of medical personel and perhaps you can find someone.

It sound urgent, I would recommend that you call the Duke Human Resources department and ask away to find someone who can be helpful.

Good luck, Lisa

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What exactly did the doctor tell her in the way of advice?

Tom

The GI told her that she couldn't stay on the gluten free diet for a prolonged period of time because she would waste away. He then rattled on about how some people could tolerate more gluten than others, some, he said, were highly sensitive and couldn't be in the same room with flour while others are not so sensitive. I know there are different levels of sensitivity, but instead of encouraging the diet, he criticized it and didn't stress the importance.

I was in the room and knew he didn't know what he was talking about since I had researched so much on the internet. I told him there is plenty to eat and I tried to talk to him a bit about what I had learned. He balked at my having found legitimate information online.

My mother-in-law went in his office believing the diet changes had worked, but left a bit uncommitted to a strict diet. For the last year and a half, she has been pretty much gluten-free but slides off when tempted and no one is looking. Her health has been deteriorating for the last six months or so. . . chronic fatigue, memory loss, anemia .. . and no doctor paying attention.

Obviously, I'm a frustrated daughter-in-law.

Dana

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The GI told her that she couldn't stay on the gluten free diet for a prolonged period of time because she would waste away. He then rattled on about how some people could tolerate more gluten than others, some, he said, were highly sensitive and couldn't be in the same room with flour while others are not so sensitive. I know there are different levels of sensitivity, but instead of encouraging the diet, he criticized it and didn't stress the importance.

I was in the room and knew he didn't know what he was talking about since I had researched so much on the internet. I told him there is plenty to eat and I tried to talk to him a bit about what I had learned. He balked at my having found legitimate information online.

My mother-in-law went in his office believing the diet changes had worked, but left a bit uncommitted to a strict diet. For the last year and a half, she has been pretty much gluten-free but slides off when tempted and no one is looking. Her health has been deteriorating for the last six months or so. . . chronic fatigue, memory loss, anemia .. . and no doctor paying attention.

Obviously, I'm a frustrated daughter-in-law.

Dana

Hi Dana,

I live in Virginia but have in-laws in of all places Cary,NC. I can sense your frustration. I joined a large support group in Richmond, Va. and one of the most common things I have found talking to other Celiacs is their almost total commitment to a gluten-free diet. I almost never hear of another person talking about "cheating" on the diet. If they were like me and very sick the last thing they want to do is tempt fate and eat gluten. I think your mother-in-law needs to find someone on the diet and get their thoughts. Does she live with other family members? If so do they support what she may be trying to do? I think this is very important in keeping one on the straight and narrow. Whenever I meet someone new in the support group ( and there have been many in the last year) I just remind them how well I feel and what it takes to be this way. If you think she needs to hear it from a doctor then I hope you can locate a good one. Best of luck.

Tom

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Hi Dana,

I live in Virginia but have in-laws in of all places Cary,NC. I can sense your frustration. I joined a large support group in Richmond, Va. and one of the most common things I have found talking to other Celiacs is their almost total commitment to a gluten-free diet. I almost never hear of another person talking about "cheating" on the diet. If they were like me and very sick the last thing they want to do is tempt fate and eat gluten. I think your mother-in-law needs to find someone on the diet and get their thoughts. Does she live with other family members? If so do they support what she may be trying to do? I think this is very important in keeping one on the straight and narrow. Whenever I meet someone new in the support group ( and there have been many in the last year) I just remind them how well I feel and what it takes to be this way. If you think she needs to hear it from a doctor then I hope you can locate a good one. Best of luck.

Tom

I agree. I was diagnosed as a baby and they told my mother to keep me on the diet for two years. That was in 1951. I lost my son last summer and got very sick. Could not get out of bed. I finally after 2 months realized the celiac was back. After that I would go to work and come home and get in bed. I am still tired and learning alot here, I went to a meeting in Norfolk but there was no speaker. I saw Richmond is having a meeting. Do you think it would be worth the drive? I live in Va. Beach. LindaLee

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I'm needing a recommendation for a knowledgable doc in Raleigh, NC area. This is for my mother-in-law whose GI diagnosed her with possible celiac in Nov. 2004. We learned over the telephone, but knew something about the disease because of a friend who has it. We immediately made the changes, emptied her pantry and eleminated gluten from her diet. Within three weeks she went from death's door to feeling "human again". Unfortunately the GI gave her ignorant advice at a follow-up and since then we have had a hard time convincing her how important the diet is. Now she is anemic and failing again and we need help!!!! Her primary doc know nothing. Any advice is much appreciated.

Hi Dana, I'm in Raleigh and working with a rheumatologist at NC Allergy and Arthritis Clinic. (I led him to Celiac, though, so it's yet to be seen how thorough he is with me ... I'm taking the initiative to change my diet.)

I have an idea: You could call Whole Foods and ask if they have any resources for Celiac you could talk with (on staff or speakers). I think they sometimes hold gluten-free info sessions and maybe the person who leads this group could help.

OR just hang out in the Gluten-Free freezer or snack section and ask the people buying gluten-free food. (I know sounds a bit stalkerish, LOL but those with Celiac understand the desperation to make connections.)

Good luck!

>|< SuperBeck

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Hi Dana,

I live in Virginia but have in-laws in of all places Cary,NC. I can sense your frustration. I joined a large support group in Richmond, Va. and one of the most common things I have found talking to other Celiacs is their almost total commitment to a gluten-free diet. I almost never hear of another person talking about "cheating" on the diet. If they were like me and very sick the last thing they want to do is tempt fate and eat gluten. I think your mother-in-law needs to find someone on the diet and get their thoughts. Does she live with other family members? If so do they support what she may be trying to do? I think this is very important in keeping one on the straight and narrow. Whenever I meet someone new in the support group ( and there have been many in the last year) I just remind them how well I feel and what it takes to be this way. If you think she needs to hear it from a doctor then I hope you can locate a good one. Best of luck.

Tom

Yes, Tom, she definitely has support from my family. My mother-in-law lives next door to us! We live in a rural area about an hour from Raleigh. She is a widow and I cook gluten free for her and my family every night and send leftovers home with her to eat for lunch the next day. Unfortunately, everything truthful that she has learned about celiac disease has come from us, not a physician. Her belief is the issue. Sometimes I think it would be easier if I were the celiac! This is the first time I've ever posted anything anywhere. As well as looking for a doctor, I do need to vent with people who actually understand! Thanks for the advice and best wishes to you.

Dana

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My experience w/ Raleigh drs has been horrible. I saw 2 different drs in Raleigh, both of whom I fired.

I then started seeing a dr in Wilson (just outside of Raleigh). He seems pretty knowledgeable about the disease. E-mail me at turtledupree@hotmail.com if you want his contact info. Also, check w/ UNC-Chapel Hill Hospital. Someone told me there is a dr there but i'm not sure if he's strictly for kids or adults or both or what. I have recently moved from the Raleigh area which is why I didn't bother following up w/ UNC myself. Sorry I don't have better info for you...hang in there...

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Hi Dana, I'm in Raleigh and working with a rheumatologist at NC Allergy and Arthritis Clinic. (I led him to Celiac, though, so it's yet to be seen how thorough he is with me ... I'm taking the initiative to change my diet.)

I have an idea: You could call Whole Foods and ask if they have any resources for Celiac you could talk with (on staff or speakers). I think they sometimes hold gluten-free info sessions and maybe the person who leads this group could help.

OR just hang out in the Gluten-Free freezer or snack section and ask the people buying gluten-free food. (I know sounds a bit stalkerish, LOL but those with Celiac understand the desperation to make connections.)

Good luck!

>|< SuperBeck

Interesting idea and I understand the desperation! We actually live about an hour from Raleigh, so hanging out at Whole Foods isn't really an option. I wish we had one closer. I do visit the store every couple of months to stock up and sometimes hope to run into someone stocking up on gluten-free items. Just to talk to someone who understands this disease is nice. Tell me about the rheumatologist and this allery and Arthritis Clinic. My mother-in-law also suffers from arthritis and has a chronic cough too. She has weird flare-ups. One day her hand will bother her, the next day it's her foot. Her mother had rheumatoid arthritis and was bed-ridden from years.

Just wondering if there is a connection.

Thanks.

Dana

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Hi Dana,

Well, I'm not sure about NC Allergy/Arthritis Clinic yet. My doc is working with me and spends a lot of time, which is VERY different than any other doc I've been with. I like him a lot, but I don't know how much he knows about Celiac. I meet with him in a couple weeks.

I also suffer from muscle spasms and am intrigued to know if they will stop once I've been gluten-free for a while. Time will tell. I've read that some people with Fibromyalgia may have underlying celiac disease, so perhaps this could by you MIL's problem.

Good luck ... and hang in there and maintain silent strength in knowing you are helping her the best way you can! I am about to tackle my family over converting my children to gluten-free and I can imagine the resistence I am going to get. Try printing some stuff off the Web to share with your MIL, perhaps then she will understand. Also, if you can convince your hubby of the diet's significance, maybe he can convince his mom. I was in denial for a while, but now, less than one week in, my stomach is less swollen and I've dropped 3 lbs. (I didn't expect weight loss.)

>|< SuperBeck

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I agree. I was diagnosed as a baby and they told my mother to keep me on the diet for two years. That was in 1951. I lost my son last summer and got very sick. Could not get out of bed. I finally after 2 months realized the celiac was back. After that I would go to work and come home and get in bed. I am still tired and learning alot here, I went to a meeting in Norfolk but there was no speaker. I saw Richmond is having a meeting. Do you think it would be worth the drive? I live in Va. Beach. LindaLee

Yes I think it would be. Are you familiar with Richmond? Meeting is this Thursday at 7pm.

Tom

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Yes I think it would be. Are you familiar with Richmond? Meeting is this Thursday at 7pm.

Tom

The last time I was there I got a little lost trying to get back. This Thursday I have this board meeting but I will see about the next one. LindaLee

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Yes I think it would be. Are you familiar with Richmond? Meeting is this Thursday at 7pm.

Tom

Tom:

Please be my ears and mouth and listen for me. Wish we had what you have in the Richmond area. Please pass on anything that would be helpful for us who live in the boonies.

Best to you and Meg. I enjoyed meeting you both, but you must be a luck man to have Meg in your life.. :)

Lisa

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Hi Dana,

I was just diagnosed as Celiac by Dr. Kenneth Kohagen at Digestive Healthcare. (Near Rex Hospital.)

I had been having "IBS" & anemia symptoms (among others) for over 10 years & getting no help from previous doctors, but Dr. K. finally put all the pieces together. I found him to be friendly, sympathetic, & very efficient. Hope this helps.

Leah in Raleigh

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:)

Hi Dana,

I was just diagnosed as Celiac by Dr. Kenneth Kohagen at Digestive Healthcare. (Near Rex Hospital.)

I had been having "IBS" & anemia symptoms (among others) for over 10 years & getting no help from previous doctors, but Dr. K. finally put all the pieces together. I found him to be friendly, sympathetic, & very efficient. Hope this helps.

Leah in Raleigh

Hi Leah in Raleigh,

I haven't heard anything from my post in a number of days. Maybe your post is the answer to my prayer today! Thank you for taking the time to reply. I have a couple of questions if you don't mind. How did Dr. Kohagen diagnose you (i.e. blood test, biopsy etc.)? Also did he talk in depth about the diet changes you need to make? Was he upbeat and encouraging about how these changes would improve your health? As a newly diagnosed celiac, did you leave his office feeling like you could improve your health with diet changes. If you read my previous post, I need a doctor to help my mother-in-law see that she needs to be vigilent with her diet if she wants to improve her health and that "cheating" every so often is only going to sabotoge previous effort (mine and hers). She really needs this to come from a medical professional and not her son and daughter-in-law and printed pages from the internet. I think it is hard for her to realize that the diet does make a big difference because she is 76 years old and aging. I think she just thinks she is getting old and falling apart anyway so why deprive herself so much at this point. Thanks in advance for answering my questions and best wishes with improving your health with diet. There is so much good information online and so much support from other celiacs, if you are on this message board you are off to a good start!

Thanks again,

Dana

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Hi Dana,

I was diagnosed with a biopsy. After more or less dismissing my chronic-but-not-severe diarrhea, fatigue & anemia for years as "really nothing to worry about", my regular doctor finally referred me to Dr. Kohagen when blood tests, cat scan, &c. couldn't find a cause for elevated liver enzymes. Dr. K. took one look at my list of symptoms, asked a few questions, & even before running any tests said I definitely fit the Celiac profile. Endoscopy/biopsy confirmed it.

He was very encouraging about my hopes for a full recovery if I stayed gluten free. He specified the types of foods I should avoid, but didn't discuss all the detailed changes in depth. He asked if I felt I could handle the necessary research myself, & did offer to refer me to a nutritionist if I needed more info. Before the biopsy I had already found this website & educated myself quite a bit, so after asking him a few questions that had occurred to me, I said I didn't think I needed a nutritionist just yet. (I might have said yes anyway, but my insurance is iffy & my cash flow is already problematic with all the testing I've been through!)

He was quite sympathetic about the complexity of the diet, but stressed that it was important to be thorough. He was most definitely EXTREMELY encouraging about the potential results of staying gluten-free. I do have to say that despite my love for baking, I was by no means a resistant patient. I was mostly relieved finally to have an answer to this nagging puzzle. I'm only just beginning the diet, but I'm so hopeful now that I will soon feel truly well again after many years of dragging myself around by force of will.

I hope your mother in law sees the light! Sounds like she might need a nutritionist too, but if she sees Dr. K. he will certainly refer her.

Best of luck,

Leah

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Hi Dana,

I was diagnosed with a biopsy. After more or less dismissing my chronic-but-not-severe diarrhea, fatigue & anemia for years as "really nothing to worry about", my regular doctor finally referred me to Dr. Kohagen when blood tests, cat scan, &c. couldn't find a cause for elevated liver enzymes. Dr. K. took one look at my list of symptoms, asked a few questions, & even before running any tests said I definitely fit the Celiac profile. Endoscopy/biopsy confirmed it.

He was very encouraging about my hopes for a full recovery if I stayed gluten free. He specified the types of foods I should avoid, but didn't discuss all the detailed changes in depth. He asked if I felt I could handle the necessary research myself, & did offer to refer me to a nutritionist if I needed more info. Before the biopsy I had already found this website & educated myself quite a bit, so after asking him a few questions that had occurred to me, I said I didn't think I needed a nutritionist just yet. (I might have said yes anyway, but my insurance is iffy & my cash flow is already problematic with all the testing I've been through!)

He was quite sympathetic about the complexity of the diet, but stressed that it was important to be thorough. He was most definitely EXTREMELY encouraging about the potential results of staying gluten-free. I do have to say that despite my love for baking, I was by no means a resistant patient. I was mostly relieved finally to have an answer to this nagging puzzle. I'm only just beginning the diet, but I'm so hopeful now that I will soon feel truly well again after many years of dragging myself around by force of will.

I hope your mother in law sees the light! Sounds like she might need a nutritionist too, but if she sees Dr. K. he will certainly refer her.

Best of luck,

Leah

Thank you, Leah, for sharing more details about your diagnosis and Dr. K. I have written my mother-in-law's primary physician, begging him to learn enough about celiac disease so that he will at least question her about how well she is sticking to the diet. If he doesn't come through, I will be collecting all of her medical records and we'll give Dr. K a try. She was only told that it looked like she might possibly have celiac disease because of a blood test, but she seemed at death's door at the time and had been there for months. When we changed her diet, within three weeks she was much improved. She really believed the diet worked at the time, but her GI was not supportive at all (I need to write him a letter too!). She needs a doctor to keep her in check and perhaps a nutritionist, as you said, to educate her.

I would think that after being unwell for so long, having a diagnosis that you can actually do something about is a gift. At least that's how I would try to look at it. Baking may never be quite the same for you, but there are some great products out there. You may have already heard about The Gluten-Free Pantry's Chocolate Truffle Brownies. They are the best brownies I have ever had. I've also had some pretty good luck experimenting with the various flour mixture recipes that I have found online. I'm sure you will do fine-because you are ready to feel better and I'm sure you will!

Best wishes and thanks again,

Dana

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You're right-- I do feel lucky that this is something I can deal with, without drugs or surgery, just by controlling my diet. It's amazing that so many different symptoms can be traced to this one simple cause.

I'm going to track down those brownies!

Best of luck with your MIL & thanks for your good wishes.

Leah

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So - I'm new to the message -board thing, so I'm hoping I'm doing this right....

I'm within days of turning 28 and have just been told to go on a gluten free diet. The blood work for Celiac came back slightly positive (whatever that means) and I've been having tons of gastro problems for at least the last 10 years.

I appreciate the information on doctors...that has been my biggest fear. I'm seeing a gastroenterologist in Cary and when we asked him about a gluten free diet or information on celiac, he told us to "go to that Google thing on the internet and type in Celiac and Gluten Free and see if we found anything." NOT COOL!

Thank goodness we live where we do -- Trader Joe's and Whole Foods have been AWESOME to find things -- it's a huge life-changing experience (as you all know even better than I do).

I'm not sure where we go from here. I've been gluten-free for a whole week now and am finding it possible to eat a meal and not be sick within 30 minutes.

Thanks for any insight you can offer and for listening to my ramblings....

:)

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HI Dana:

I used to live in Apex, NC and saw Dr Steven Furs is a Gastroenterologist in Cary. I really liked him. He is thorough and very personable.

Furs Stephen Md

1000 Crescent Green Drive, Cary, NC 27518

919) 816-4948

Good luck.....I know they have specialist at Duke too because my daughter saw one at the Children's Hospital.

I now live in PA and am able to travel to Baltimore to University of Maryland to see Dr Alessio Fasano. He has a terrific website about Celiac Disease you might want to show you mother- in -law

http://www.celiaccenter.org/faq.asp

I'm needing a recommendation for a knowledgable doc in Raleigh, NC area. This is for my mother-in-law whose GI diagnosed her with possible celiac in Nov. 2004. We learned over the telephone, but knew something about the disease because of a friend who has it. We immediately made the changes, emptied her pantry and eleminated gluten from her diet. Within three weeks she went from death's door to feeling "human again". Unfortunately the GI gave her ignorant advice at a follow-up and since then we have had a hard time convincing her how important the diet is. Now she is anemic and failing again and we need help!!!! Her primary doc know nothing. Any advice is much appreciated.

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Sorry...I'm just seeing this. I go to Dr Barrish at Wake Internal Medicine on Blue Ridge. He was the only one who diagnosed me when another doc missed it 5 yrs ago. Call 781-7500 and follow the prompts for making an appt.

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I'm needing a recommendation for a knowledgable doc in Raleigh, NC area. This is for my mother-in-law whose GI diagnosed her with possible celiac in Nov. 2004. We learned over the telephone, but knew something about the disease because of a friend who has it. We immediately made the changes, emptied her pantry and eleminated gluten from her diet. Within three weeks she went from death's door to feeling "human again". Unfortunately the GI gave her ignorant advice at a follow-up and since then we have had a hard time convincing her how important the diet is. Now she is anemic and failing again and we need help!!!! Her primary doc know nothing. Any advice is much appreciated.

Dana,

just to let you know, I must have seen the same doc and am feeling very confused,and hoping someone can answer your ?. Did the doc give your mother-in-law a 100% diagnosis of celiac disease? Mine only told me he "thinks" I have celiac disease after having an endoscopy and celiac panel, I am wondering if either he doesnt know much about celiac or there is not a 100% accurate diagnosis of celiac disease? Good Luck

jj1

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:)

Hi Leah in Raleigh,

I haven't heard anything from my post in a number of days. Maybe your post is the answer to my prayer today! Thank you for taking the time to reply. I have a couple of questions if you don't mind. How did Dr. Kohagen diagnose you (i.e. blood test, biopsy etc.)? Also did he talk in depth about the diet changes you need to make? Was he upbeat and encouraging about how these changes would improve your health? As a newly diagnosed celiac, did you leave his office feeling like you could improve your health with diet changes. If you read my previous post, I need a doctor to help my mother-in-law see that she needs to be vigilent with her diet if she wants to improve her health and that "cheating" every so often is only going to sabotoge previous effort (mine and hers). She really needs this to come from a medical professional and not her son and daughter-in-law and printed pages from the internet. I think it is hard for her to realize that the diet does make a big difference because she is 76 years old and aging. I think she just thinks she is getting old and falling apart anyway so why deprive herself so much at this point. Thanks in advance for answering my questions and best wishes with improving your health with diet. There is so much good information online and so much support from other celiacs, if you are on this message board you are off to a good start!

Thanks again,

Dana

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