Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Celiac Specialist In South Eastern Michigan?
0

10 posts in this topic

I'm trying to hunt down a GOOD specialist. Somebody that really knows how to listen, is on top of their game, and who would consider the Enterolab gene test results.

Because I'm not gonna torture myself with eating gluten/dairy for a month just for them to finally write the word "Celiac" in my chart. I already have enough problems as it is. I get reactions from gluten/dairy RESIDUE touching my skin.:(

I figure if I get a good Dr., then maybe I can get some relief. Like some dapsone or something.

So if you know or know of a GOOD specialist in South Eastern Michigan, please post their contact info/link.

Thanx!

0

Share this post


Link to post
Share on other sites


Ads by Google:

I am looking for one too. I do not want just another gastro who is interested in money-spinning surgery.

0

Share this post


Link to post
Share on other sites

Did you ever find someone? We are in need of someone too.

0

Share this post


Link to post
Share on other sites

I'm trying to hunt down a GOOD specialist. Somebody that really knows how to listen, is on top of their game, and who would consider the Enterolab gene test results.

Because I'm not gonna torture myself with eating gluten/dairy for a month just for them to finally write the word "Celiac" in my chart. I already have enough problems as it is. I get reactions from gluten/dairy RESIDUE touching my skin.:(

I figure if I get a good Dr., then maybe I can get some relief. Like some dapsone or something.

So if you know or know of a GOOD specialist in South Eastern Michigan, please post their contact info/link.

Thanx!

I am looking for one too! My family doctor is clueless about this and the GI I went to just took blood. It came back negative but every symptom I have suggests I have celiac. I am so discouraged. I am dizzy all day every day and fatigued. This is awful! I really need someone in SE Michigan too!

0

Share this post


Link to post
Share on other sites

My celiac symptoms worsened and became severe when I live in SE mich. the Livonia Family Practice and the hospital they use (Beaumont I think? It's been awhile) treated me horribly and flat out said more than once I couldn't possibly have celiac. They tagged me with the fibromyalgia dx, blamed all symptoms on that, and put me on dangerous Reglan, while blaming me for causing my own illness with my fatness. I can't tell you where to go (I believe I was nearly on death's door when I left that state), but don't go to LFP or Beaumont hosp GI or rheumatologists.

Good luck.

0

Share this post


Link to post
Share on other sites




I'm trying to hunt down a GOOD specialist. Somebody that really knows how to listen, is on top of their game, and who would consider the Enterolab gene test results.

Because I'm not gonna torture myself with eating gluten/dairy for a month just for them to finally write the word "Celiac" in my chart. I already have enough problems as it is. I get reactions from gluten/dairy RESIDUE touching my skin.:(

I figure if I get a good Dr., then maybe I can get some relief. Like some dapsone or something.

So if you know or know of a GOOD specialist in South Eastern Michigan, please post their contact info/link.

Thanx!

Same here, I can't find any doctor who even has a clue...but this is what I have learned. You don't need a doctor to tell you that you FEEL BETTER not eating gluten. So, therefore, you are gluten sensitive. One doctor said I didn't need the blood test to tell me I was celiac--I just needed to listen to my body.

So, I have been gluten free for three years. And have made a miracle of a recovery. I have neuropathy, fibromyalgia, had a thyroidectomy, cancer and much more. It was ALL caused by years of eating gluten. I saw over fifteen doctors who didn't know what to do with me. I researched and researched and went off gluten. The NEXT DAY i was able to stay awake and felt like a new person. I am now almost painfree and have no stomach or brain issues--unless I accidently ingest gluten!! And then it starts all over again--it's obvious. Doctors don't understand, so you have to take control yourself.

0

Share this post


Link to post
Share on other sites

Dr. Lyons

He works out of the St. John system. I have his number for the office in Macomb County, but don't know his main line.

He's not one to mess around. In fact, I would recommend any of the St. John people simply on the professionalism of their support staff.

He tested my daughter right away when her blood sugars started dropping abnormally low (she's diabetic also). The day after the test, someone from his office called me to find out how she recovered after the procedure. A week later, they called to see how she was reacting to the gluten-free diet. Her first appointment after being diagnosed is next week and they've emailed me bunches of celiac disease stuff to get going on getting her better before her appointment.

I think you'll like him. He definitely didn't brush me off - my daughter wouldn't have had her endoscopy for two more weeks, but he moved it up to just before Christmas.

0

Share this post


Link to post
Share on other sites

I'm so glad I found this site! I'll be contacting Dr. Lyons. My son's specialist, Dr. Belknap, passed away last year. I'm so thankful we had the chance to meet him as he is the first gastro in 10 years who actually took the time to listen to me. After his passing, I went to another doctor, and he just wasn't as "in tune" with Celiac as Dr. Belknap. Plus, I want to follow Dr. Belknap's plan of action, which is to perform another scope to see if the damage is healing, and that doctor just wasn't interested. I'll post again after we see Dr. Lyons.

@xjrosie - Thank you for the recommendation!

0

Share this post


Link to post
Share on other sites

I'm so glad I found this site! I'll be contacting Dr. Lyons. My son's specialist, Dr. Belknap, passed away last year. I'm so thankful we had the chance to meet him as he is the first gastro in 10 years who actually took the time to listen to me. After his passing, I went to another doctor, and he just wasn't as "in tune" with Celiac as Dr. Belknap. Plus, I want to follow Dr. Belknap's plan of action, which is to perform another scope to see if the damage is healing, and that doctor just wasn't interested. I'll post again after we see Dr. Lyons.

@xjrosie - Thank you for the recommendation!

I hope he works out for you.

He not only diagnosed my daughter, but said that since my first-generation family (my children) have a history of autoimmune diseases all my kids (and myself) should be tested for Celiac.

He just diagnosed my oldest daughter with Celiac after blood tests were inconclusive. The scope was also inconclusive but the biopsy was positive. My third daughter had her bloodwork started yesterday - and she has no symptoms or diseases like the other two (one has hypothyroidism, another diabetes).

0

Share this post


Link to post
Share on other sites

It is truely sad that Dr. Belknap passed away, I have never heard a negative thing about the man and his patients LOVED him.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,884
    • Total Posts
      919,476
  • Topics

  • Posts

    • I'm actually scared to go to the doctor and could use some advice
      Hello Elle Among this online community you are not alone in either your symptoms or how you feel about visiting the doctor.  I for one understand the anxiety that you are going through, my own weird nerve stuff and other puzzling symptoms have had me really scared at times.   So much you are going through could very well be gluten related, it really could.   But if it isn't, in the end it is worth trying to find out what it is going on so you can get the treatment you deserve. After all, it could have a really simple, treatable explanation, once the doctors know what it is. I remember reading on another website something that has helped me with my own health anxiety - if one can summon up the courage to go and see the doctor, one should pat oneself on the back and be proud of oneself for doing the right thing.  I'm not terribly keen on the idea of being a proud person - but I think it was meant in the best sense, and it is always good to do the right thing, even if one does it afraid!  It always makes me feel that bit stronger when I'm in the waiting room at the doctors! There is lots of great advice above.  Do take it and make sure you come back if you need further support. There are some fantastic people here to help.        
    • I'm actually scared to go to the doctor and could use some advice
      Hi Elle......do you think you would have better luck obtaining a full Celiac panel from your GP or a gastro doc?  You really need to be tested for Celiac because of all your symptoms.  Many other people probably thought they were dying of some horrible disease because they had so many symptoms that docs ignored.  Very common problem for us.  Plus, your Mom has had "IBS" all her life.  I should add that IBS is not a diagnosis.  No one needs to be told their bowel is irritated......they already know that.  This is where the medical establishment, no matter where you live in this world, fail us.  They need to find the root cause and there always is one.  You also do not need to have any gastro issues to be a Celiac but you do have some, along with all your symptoms mentioned.  Anxiety is a huge problem with Celiac Disease and for many, it goes away just fine on the gluten-free diet, without need of meds...which should always be a last resort measure.  I have never had an anxiety problem in my entire life until after I was diagnosed with Celiac.  I may have had it but with all the other numerous symptoms I had, the anxiety may have gotten buried somewhere.  But guess what? On the extremely rare occasion when I am glutened or cc'd, I get major anxiety for about 4 days and then its gone. B12 is a water soluble vitamin so whatever you don't use, it exits the body in your urine.  It is pretty damn hard to overdose on the stuff.  I take a B vitamin everyday, very high quality ones and my B12 is usually in the high 600 range.  Optimally, it should be between 650-800 so yours was abysmal pre-supplementation.  Absorption can also be affected by PPI's.  You did notice improvement with the tingling sensation and fatigue once your levels were way up so take notice of that. My biggest advice is to get your mother and you tested for celiac, with a FULL PANEL. Then you'll have to wait and see what that shows. You could always trial a gluten-free diet if all testing is complete and the results were either negative or inconclusive. That sometimes happens with people, especially if they have Celiac's other cousin......non-celiac gluten intolerance.  This would be the best route to go with regards to your anxiety, unless it becomes disabling and you need meds, short term. Make sure you tell them that anxiety is a HUGE symptom of Celiac and it is not normal for younger people to have extreme anxiety like that, for no reason. Good luck to you and please call and make the appointment. I understand your fear....I hate doctors and it's pure mistrust. But sometimes you have to address a problem head on.    
    • newbie diagnosed mom - testing 8 yr old now
      good to know. I am not going for a biopsy. I do not have health insurance, i know i know please no political comments. My children do. My husband and I don't right now. If we lived in another state, we would have coverage. I just made an appt to do a full blood panel for my daughter this week. I would rather find some confirmation for her through a blood test, i feel a scope is too invasive for a child. 
    • Did Jennifer Esposito Leave Town Amid $43 Million Gluten-Free Bakery Lawsuit?
      With a major lawsuit pending, recent reports put the former "Blue Bloods" star in Denmark. View the full article
    • I'm actually scared to go to the doctor and could use some advice
      Well, if I were you, I would go see your doctor and talk to him/her about all this.  Tell your doctor about your anxiety. When I finally did, my doctor prescribed a low dose of an anti-anxiety med and it has made a world of difference in my life.   About the whole thing with the B12 and the weird symptoms . Keep taking the B12 in the meantime to see if that helps again. But talk about it anyway.  If you want a celiac test, ask for the panel to be done. Your doctor may or may not want to send you to a GI for that. Remind him your mom is being tested. You do not have to wait for her results.  Work with your doctor if possible and if not, maybe find a doctor you can work with. If all you end up needing is b12, that's a good thing. If you end up needing more help, starting with your doctor and a heart to heart Talk will have you going in the right direction.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,928
    • Most Online
      1,763

    Newest Member
    Timea
    Joined