Help Finding New Docs

[mmaccartney]

I'm from Cleveland OH area, but cannot locate any Gastroenterologist and Rheumotolgists that can treat me as a team, and have knowledge / expierence with Celiac.

The main problems are that

1) My GI doc doesn't know a lot about Celiac. As such, it is up to me to tell him that I'd like to have my nutrient levels checked to ensure that I am eating properly with the diet. Or to have my IgA levels rechecked now that I've been gluten-free for ~ 1 year. Also, he refuses to give me painkillers strong enough to alleviate my pain when I do get glutened. I managed to pry (and I mean pry...I had to breakdown in tears in his office to get them..which wasn't hard at that point in time) 10 percocet pills from him. Even that wasn't quite strong enough, and when I asked for something stronger, I got the "Addiction Speech". Trust me, I understand addiction and know the signs for it. Now that I am recovering I get nothing, even though the pain when I do get glutened is just as severe as it as 12 months ago.

2) I have associated arthritis. I don't know what kind, is it RA, is it AS, is it "Reactive" atrhritis? I asked my Rheumotolgist last time I was in and got "Well, you have Celiac related arthritis". I mean, no sh*t! I figured that out a long time ago!!! What I want to know is what specific type it is so that I know my prognosis. RA and AS are commonly associated with Celiac disease. My Rhuemotologist also refuses to give me the medicine that I need. I have Vicoden and Celebrex for my attacks, but sometimes they get really bad as I explained last time I was in the office. My back flared up really bad several weeks ago at work and I almost had to be carried out to my car to drive home. I spent 3 days bed ridden in extreme pain, and the next 1.5 weeks walking with a cane. She refuses to give me anything stronger to deal with the pain. Her response was "Well I think the steroids are what you need when that happens". I had planned on asking for a handicapped tag for my car so that I can have good parking when I am having major problems....but after the painkiller response I was afraid to even ask.

What is it with Doctors?? Why don't they want to give ou the medicines that their patients need? It's not like I'm some drug addict. I am a 33 year old husband and father. I support my family 100%, I work every day, and hold down a darn good job. I am a very responsbile person. It's just that I don't like to be in so much pain, and I have a legitimate, serious disease!!!

I'd pay lots of $$ to see both of them walk in my shoes for just one gluten attack!!! then they would be surely willing to give me what I need....

Does anyone have any knowledge of Gastro/Rhemuy docs in the Cleveland OH Area that might be willing to treat me, and understand Celiac and the associated disorders better???

[ravenwoodglass]

I'm from Cleveland OH area, but cannot locate any Gastroenterologist and Rheumotolgists that can treat me as a team, and have knowledge / expierence with Celiac.

The main problems are that

1) My GI doc doesn't know a lot about Celiac. As such, it is up to me to tell him that I'd like to have my nutrient levels checked to ensure that I am eating properly with the diet. Or to have my IgA levels rechecked now that I've been gluten-free for ~ 1 year. Also, he refuses to give me painkillers strong enough to alleviate my pain when I do get glutened. I managed to pry (and I mean pry...I had to breakdown in tears in his office to get them..which wasn't hard at that point in time) 10 percocet pills from him. Even that wasn't quite strong enough, and when I asked for something stronger, I got the "Addiction Speech". Trust me, I understand addiction and know the signs for it. Now that I am recovering I get nothing, even though the pain when I do get glutened is just as severe as it as 12 months ago.

2) I have associated arthritis. I don't know what kind, is it RA, is it AS, is it "Reactive" atrhritis? I asked my Rheumotolgist last time I was in and got "Well, you have Celiac related arthritis". I mean, no sh*t! I figured that out a long time ago!!! What I want to know is what specific type it is so that I know my prognosis. RA and AS are commonly associated with Celiac disease. My Rhuemotologist also refuses to give me the medicine that I need. I have Vicoden and Celebrex for my attacks, but sometimes they get really bad as I explained last time I was in the office. My back flared up really bad several weeks ago at work and I almost had to be carried out to my car to drive home. I spent 3 days bed ridden in extreme pain, and the next 1.5 weeks walking with a cane. She refuses to give me anything stronger to deal with the pain. Her response was "Well I think the steroids are what you need when that happens". I had planned on asking for a handicapped tag for my car so that I can have good parking when I am having major problems....but after the painkiller response I was afraid to even ask.

What is it with Doctors?? Why don't they want to give ou the medicines that their patients need? It's not like I'm some drug addict. I am a 33 year old husband and father. I support my family 100%, I work every day, and hold down a darn good job. I am a very responsbile person. It's just that I don't like to be in so much pain, and I have a legitimate, serious disease!!!

I'd pay lots of $$ to see both of them walk in my shoes for just one gluten attack!!! then they would be surely willing to give me what I need....

Does anyone have any knowledge of Gastro/Rhemuy docs in the Cleveland OH Area that might be willing to treat me, and understand Celiac and the associated disorders better???

I can't help you with the doctor issue but I would suggest that you give the steroids a try. I have DH which was always thought to be poison ivy. Every couple months they would give me a course of steroids to clear it and it would greatly help my muscle and joint pain. The good thing to keep in mind is that as you spend longer gluten-free and get less CC the pain you are experiencing may be greatly relieved. 4 years ago, before my diagnosis I was on canadian canes and anticipating a wheelchair. And my hands were so crippled I could barely hold a glass or pen. It took a long time, much longer than the GI stuff but eventulally the pain was gone. Hang in there, look for another doctor and maybe call the one you have and give the steroids a try.

[mmaccartney]

I can't help you with the doctor issue but I would suggest that you give the steroids a try. I have DH which was always thought to be poison ivy. Every couple months they would give me a course of steroids to clear it and it would greatly help my muscle and joint pain. The good thing to keep in mind is that as you spend longer gluten-free and get less CC the pain you are experiencing may be greatly relieved. 4 years ago, before my diagnosis I was on canadian canes and anticipating a wheelchair. And my hands were so crippled I could barely hold a glass or pen. It took a long time, much longer than the GI stuff but eventulally the pain was gone. Hang in there, look for another doctor and maybe call the one you have and give the steroids a try.

Thanks for the feedback! I do take the steroids during my flareups, and they do indeed abate the arthritis symptoms, the main problem for me is that the steroids take about 2-3 days to truly roll back the pain to a managable level. For those first 2-3 days, the pain is excruciating and unbearable. That's where I'm looking for relief, just for those 2-3 days when the pain is very intense. Perhaps I didn't argue my case well enough to them, or didn't describe the pain well enough.

Thanks though!

[ravenwoodglass]

Thanks for the feedback! I do take the steroids during my flareups, and they do indeed abate the arthritis symptoms, the main problem for me is that the steroids take about 2-3 days to truly roll back the pain to a managable level. For those first 2-3 days, the pain is excruciating and unbearable. That's where I'm looking for relief, just for those 2-3 days when the pain is very intense. Perhaps I didn't argue my case well enough to them, or didn't describe the pain well enough.

Thanks though!

I know how you feel. The pain is horrible. I would have kissed my doctors feet if he gave me percocet. Becaue I was at the doctors so much they labeled me a drug seeker. I got to take baby asprin last time I tore a ligament. I have a real problem with the majority of the doctor in the US. There are good ones but they are hard to find. How long have you been gluten free? Have you searched out every possible source of contamination? One other thing I want to mention even though I don't know if it will help you is that my arthritis still continued to flare until I greatly reduced my consumption of the nightshade family. These include tomatoes, peppers, potatoes and eggplant. The only one of these I ate a lot of was potatoes. I removed these from my diet for a month or so and now make sure I only eat them in small amounts. I rarely have joint pain now. My hands look awful but at least they move pain free.

[mmaccartney]

How long have you been gluten free? One other thing I want to mention even though I don't know if it will help you is that my arthritis still continued to flare until I greatly reduced my consumption of the nightshade family. These include tomatoes, peppers, potatoes and eggplant. The only one of these I ate a lot of was potatoes. I removed these from my diet for a month or so and now make sure I only eat them in small amounts. I rarely have joint pain now. My hands look awful but at least they move pain free.

I'll be gluten-free one year one week from today!

And, for the most part I feel one thousand % better now. No real symptoms unless I get contaminated; save for my arthritis.

Have you searched out every possible source of contamination?

Yes, extensively. I've replaced all my kitchen equipment, there is no gluten or dairy processed in my kitchen. I've screened all my soaps and the like. I eat very little processed food, when I do I always talk to the manufacturor and avoid CC as often as possible. I do not eat at or from restaurants; well I did twice this year, got glutened one of those times.

One other thing I want to mention even though I don't know if it will help you is that my arthritis still continued to flare until I greatly reduced my consumption of the nightshade family. These include tomatoes, peppers, potatoes and eggplant. The only one of these I ate a lot of was potatoes. I removed these from my diet for a month or so and now make sure I only eat them in small amounts. I rarely have joint pain now.

I don't think that is the first time you've told me that. I agree this is definitly worth a shot. I just need to get up the gumption to try it. Nightshades are a LARGE part of my diet; except eggplants. I don't see a correlation between when I eat them and when my arthritis flares up; but if i'm eating them all the time then I probably wouldn't see a correlation. I'd have to eliminate them and then try a food challenge after several weeks "off" of nightshades to see.

I've been thinking about my Rheumys response. I believe she thought that I was asking for pain killers instead of the steroids. That makes her response of "Well I think the steroids are what you need when that happens" make sense. I agree that the steroids are a good treatment for a flare up, just need more to take the edge off. I'll talk to her more when I see her in 5 more weeks.

Thanks again!

[ravenwoodglass]

"I don't think that is the first time you've told me that. I agree this is definitly worth a shot. I just need to get up the gumption to try it. Nightshades are a LARGE part of my diet; except eggplants. I don't see a correlation between when I eat them and when my arthritis flares up; but if i'm eating them all the time then I probably wouldn't see a correlation. I'd have to eliminate them and then try a food challenge after several weeks "off" of nightshades to see."

I apologize if I tend to repeat myself. I post on quite a few boards, very well known as a celiac nag Sometimes it is hard to remember who I said what to.

"I've been thinking about my Rheumys response. I believe she thought that I was asking for pain killers instead of the steroids. That makes her response of "Well I think the steroids are what you need when that happens" make sense. I agree that the steroids are a good treatment for a flare up, just need more to take the edge off. I'll talk to her more when I see her in 5 more weeks."

If you are currently having problems you may want to give the office a call and see if she will just call in a script for you. 5 weeks can seem like forever if your in pain.

[andersonfam06]

I am not sure what doctors you are currently seeing, or from what hospital, but my mom is a manager at the Cleveland Clinic. I went through some neurological stuff through there and they were alright.

[LKelly8]

I'm from Cleveland OH area, but cannot locate any Gastroenterologist and Rheumotolgists that can treat me as a team, and have knowledge / expierence with Celiac. . .

2) I have associated arthritis. I don't know what kind, is it RA, is it AS, is it "Reactive" atrhritis? I asked my Rheumotolgist last time I was in and got "Well, you have Celiac related arthritis". . .

I had planned on asking for a handicapped tag for my car so that I can have good parking when I am having major problems....but after the painkiller response I was afraid to even ask.

The Cleveland Clinic definately. Any teaching hospital should be up to date on pain managment. I bounced through several rheumatologists before finding a doctor who specializes in research, he's on the cutting edge and I'm quite happy with his care. (Do be careful with steroids if you have any family history of depression or bipolar disorder.) As for the "celiac related" arthritis, that can happen with any autoimmune disorder. My sister has ulcerative colitis, she also has "uclerative colitis related arthritis". I have rheumatoid arthritis (first) and celiac disease (second). RA, AS and reactive arthritis all have specific diagnostic criteria, I'm guessing you (your symptoms) aren't a match, so. . . "celiac related arthritis".

Get the tag! I suffered for so long, thinking it was only for wheelchair users. Be prepared for some nasty looks though. Anyone with an "invisable" disablity can become an easy target for angry/bitter people.

[CDFAMILY]

I would not say Cleveland Clinic without caution. I too am from that area and they are on our insurance but I went thru the list just yesterday and did not find one doctor who specializes in Celiac Disease. Although they are rated #2 for Digestive Problems, I do think they are way behind with Celiac....not a big money maker yet so it is on the back burner in my humble opinion. I asked to be notified of any new Celiac information last June. So far I get a message every month saying there is no new information

Can you believe that...there is so much going on and they have nothing new to send me?

I am sure in a year or two when more and more people like you and me start insisting on a Celiac expert they will get one and I will be glad to go if they do.

Also, I went to a neuromuscular neurologist there when I was very sick in 2004 with many neurological complications from my undiagnosed Celiac Disease. I could barely walk to the doctors...they did a through exam...I couldn't remember 3 of the 3 words I was supposed to for the memory test...After 5-10 minutes I did remember one word... I was in such a bad brain fog.....my blood pressure was around 180/100. I told them I had a B12 deficiency and that it totally cured a severe gas problem I had. I kept asking if all my troubles could be from a B12 deficiency but they said no. I also mentioned I had 2 type one diabetic brothers. and on and on In the end they said no neuromuscular problems even though one doctor who did my SFEMG said I tested almost positive for MG so I was on my own again with my regular doctor and neuro. Sadly to say this caused more problems from all the testing and then neither my regular doctor or my regular neurologist talked so I went on to have a couple of small strokes because no one would treat the high and low BP that I would get all day long.

So, right now in my area there is only one Celiac Doctor trained under Dr. Green and he is in Alliance, Ohio. His name is Doctor Wu. Sadly he is not on my insurance.

Celaic Mom

[beaglemania]

I went to the Children's Hospital in Columbus Ohio last year to because they haqd an excellant osteoporosis clinic. It was there that I was tested for celiac and found positive. I came back to Florida and had my biopsy and found to have Celiac. I see your an adult though so I don't really have any suggestions for you, but I wish I lived in Ohio b/c the people at that hospital are so friendly and can fill you in on Celiac, not like down here where everybody doesn't believe you have severe osteoporosis for Celiac Disease.