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Kansas Doctor Needed
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I was self-diagnosed with Celiac two years ago after my general doctor wasn't able to figure out what was wrong with me. After investigating my symptoms I eventually came to the conclusion that I had celiac disease and asked my doctor to refer me to a gastro doc. The biopsy confirmed my diagnosis. Since my gastro doc almost killed me by over-prescribing Dapsone to treat my HD, I haven't been back to him. I am now having some symptoms that lead me to believe that I am having some gall bladder issues. Anyway, I'd like to go to a doctor that knows more about celiac disease than me. If I have to, I'll go out of state. If anyone can recommend a doctor within one state of Kansas I would really appreciate it.

Thanks,

Troy Short

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Troy-

What part of Kansas are you in?

-Jessica :rolleyes:

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I live in KS as well. In Lawrence there is not one doctor that knows anything about Celiac. Heck, b/c my biopsy was negative, my gastro dr refuses to believe that gluten can even be an issue. Amazingly, once I gave it up, my problems have disappeared. But I had to lose my Gall bladder first and have a hernia operation. Both might have been prevented if I had been diagnosed earlier!

Monica

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I live in KS as well. In Lawrence there is not one doctor that knows anything about Celiac. Heck, b/c my biopsy was negative, my gastro dr refuses to believe that gluten can even be an issue. Amazingly, once I gave it up, my problems have disappeared. But I had to lose my Gall bladder first and have a hernia operation. Both might have been prevented if I had been diagnosed earlier!

Monica

My brother was dianosed about 15 years ago, his doctor is in Leavenworth, KS. His name is Dr. Diallo; I think I have celiac. I had negative blood tests, I don't need the piece of paper that actually says I have it. Have been on gluten free diet for a couple of months and Headaches have all but disappeared, brain fog is gone. I think my daughter has celiac, she also had negative blood tests but she doesn't want to do the scope yet. When she does I will take her to Dr. Diallo, his wife also is a gastronolotist in with him. (Our pediatrician suggested her but she goes by her maiden name and I can't remember it). Good luck.

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I was self-diagnosed with Celiac two years ago after my general doctor wasn't able to figure out what was wrong with me. After investigating my symptoms I eventually came to the conclusion that I had celiac disease and asked my doctor to refer me to a gastro doc. The biopsy confirmed my diagnosis. Since my gastro doc almost killed me by over-prescribing Dapsone to treat my HD, I haven't been back to him. I am now having some symptoms that lead me to believe that I am having some gall bladder issues. Anyway, I'd like to go to a doctor that knows more about celiac disease than me. If I have to, I'll go out of state. If anyone can recommend a doctor within one state of Kansas I would really appreciate it.

Thanks,

Troy Short

I am interested to see if you can find a good doctor!! I live in Kansas City, and over the course of 6 years I have seen four GI's and numerous general practice docs trying to find some answers as to why I had such horrible digestive troubles- not a single one of them ever suggested Celiac. I learned about it on the internet and decided to give the gluten free thing a try. I felt better immediately. And now that I feel better, I have asked the doctors about Celiac and they don't seem to have a clue about it. It is really frustrating that a disease that affects so many people seems to be so unknown in the medical community. Now my brother and some of my relatives who live in other parts of the state and have had similar problems as I have want to be tested and they can't seem to find a doctor that knows anything about it either. I wish there was a list somewhere of competent doctors in each state that have patients with celiac and know something about it!

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We are from around Salina and we have a good ped. for my children and it helps because her best friend had celiac disease. So she is very knowledgeable. We had to go to Kansas City and see Dr SanPloblo at Children Mercy. My son was 20 mo old when we went gluten-free and our ped never suspected celiac disease but was supportive when I told her we were going gluten-free. But if you suspect gallbladder problems just call a general surgion and he should be able to help you. But if you are interested a Dr Johnson is very good in Salina as an adult gi dr. Good Luck

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Has anybody been to, or have any information about, the alternative health center (I don't recall the name of the facility...) in Wichita???

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I went to Joplin, Missouri. Dr. Makdisi did my endoscopy, Dr. Kamfe removed my gall bladder. I can't say how much either of them knows about celiac, though, because I already knew and was on the diet when I went to them about my gall bladder. They just said that since I knew what to do, just do it.

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My biopsy was done by a GI named Dr. Ellis at the Mowry Clinic in Salina, KS. She is excllent. She was both knowledgeable and warm/personable. She travels to some smaller communities (Smith Center, KS and Hays, KS, probably others as well). She also gave me info from a dietician she works with and it was very helpful. Dr. Ellis has worked with two of my friends who have other GI health problems (not Celiac) and both were quite happy with her care. There is also an internist at the Mowry Clinic who saved my husband's life. His name is Dr. Paul Johnson.

The phone number for the Mowry Clinic in Salina, KS is: 785-827-7261

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Anyone know about a good GI doctor in Wichita, KS? And a family physician?

I need to be monitored closely for now because I had extensive damage, including a bleeding ulcer in the intestine at the time of my diagnosis. My malabsorption rate is still at 964 according to my last fecal fat cell test (originally 2, 863), and is supposed to be down below 200, so I still have a long way to go.

I just moved here from Minneapolis, MN.

I have been discouraged so far about the lack of knowledge in the area about the need to be gluten-free! Everyone I have encountered so far, including my husband's family physician, look at me like I am an alien. Of course I suppose that this is what I should expect moving into the "bread basket" of our country, from a progressive state like Minnesota.

I also need a good allergist. For the past 3 years I have had chronic hives everyday, and was told by my last doctor "good luck, I hope they go away eventually". Fortunately I am on a cocktail of medicines that keep them under control, but I avoid alcohol, spicy food and coffee, as they aggravate my symptoms.

thanks

Katrina

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We are from around Salina and we have a good ped. for my children and it helps because her best friend had celiac disease. So she is very knowledgeable. We had to go to Kansas City and see Dr SanPloblo at Children Mercy. My son was 20 mo old when we went gluten-free and our ped never suspected celiac disease but was supportive when I told her we were going gluten-free. But if you suspect gallbladder problems just call a general surgion and he should be able to help you. But if you are interested a Dr Johnson is very good in Salina as an adult gi dr. Good Luck

I am moving to Salina over Labor Day weekend and would love to know the name of the pediatrician you recommend! My daughter and I have Celiac. I don't know about my son because he always eats gluten-free with the rest of the family. Also, I know there is a store in Abilene that sells gluten-free and that they apparently have a branch in Salina too, but do the local Walmart or Dillon's have any gluten-free items. Here in Indy all the major chains have started carrying gluten-free sections within the last 2 years. Also, do you know of any buying co-ops for gluten-free foods to try to lower shipping costs? Do there seem to be a lot of people in Salina with Celiac or gluten sensitivities. I found it very hard to eat out there in May and last weekend when I visited. Thanks for any info you can provide.

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I am interested to see if you can find a good doctor!! I live in Kansas City, and over the course of 6 years I have seen four GI's and numerous general practice docs trying to find some answers as to why I had such horrible digestive troubles- not a single one of them ever suggested Celiac. I learned about it on the internet and decided to give the gluten free thing a try. I felt better immediately. And now that I feel better, I have asked the doctors about Celiac and they don't seem to have a clue about it. It is really frustrating that a disease that affects so many people seems to be so unknown in the medical community. Now my brother and some of my relatives who live in other parts of the state and have had similar problems as I have want to be tested and they can't seem to find a doctor that knows anything about it either. I wish there was a list somewhere of competent doctors in each state that have patients with celiac and know something about it!

I know it is quite a distance, but UIC in Chicago does FREE testing once a year as part of their ongoing studies. http://www.celiacdisease.net/free-blood-screening is the site to visit.

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I am moving to Salina over Labor Day weekend and would love to know the name of the pediatrician you recommend! My daughter and I have Celiac. I don't know about my son because he always eats gluten-free with the rest of the family. Also, I know there is a store in Abilene that sells gluten-free and that they apparently have a branch in Salina too, but do the local Walmart or Dillon's have any gluten-free items. Here in Indy all the major chains have started carrying gluten-free sections within the last 2 years. Also, do you know of any buying co-ops for gluten-free foods to try to lower shipping costs? Do there seem to be a lot of people in Salina with Celiac or gluten sensitivities. I found it very hard to eat out there in May and last weekend when I visited. Thanks for any info you can provide.

I am just now driving past Salina on 70. Taking a kid to Colorado for college. Don't know what's available, sorry. HyVee have a lot of gluten-free things, usually, but the closest one is Manhattan to you.

The original poster posted 5 years ago. You might try to personal message them as those may be connected to an email. Click their picture and under the pic in the profile it should say message ( unless they turned that option off).

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Still no recommendations for doctors in Lawrence, KS (or even Kansas City)? I would appreciate suggestions from anyone.

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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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