Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Kansas Doctor Needed


troyshort

Recommended Posts

troyshort Newbie

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



angel-jd1 Community Regular

Troy-

What part of Kansas are you in?

-Jessica :rolleyes:

zip2play Apprentice

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

Babs83 Rookie
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.

ElizabethN Apprentice
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!

Braunson's-mom Rookie

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

Green12 Enthusiast

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



plantime Contributor

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.

  • 1 month later...
Elisa Newbie

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

  • 2 years later...
Drama-Queen Rookie

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

  • 2 years later...
Cheyenne Green Newbie

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.

Cheyenne Green Newbie

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. Open Original Shared Link is the site to visit.

kareng Grand Master

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).

  • 7 months later...
Sunny600 Rookie

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

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    2. - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    3. - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

    4. - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

    5. - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,192
    • Most Online (within 30 mins)
      7,748

    DenisC
    Newest Member
    DenisC
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.