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Celiac Specialist In South Eastern Michigan?


Guest doradomiel

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Guest doradomiel

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!

  • 1 month later...

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Linkz Newbie

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

  • 11 months later...
Manda8091 Contributor

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

  • 5 months later...
LolasMommy08 Newbie

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!

Jenniferxgfx Contributor

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.

  • 1 month later...
Jeep Newbie

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.

  • 3 weeks later...
xjrosie Apprentice

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.


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  • 3 weeks later...
ShelBel Newbie

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!

xjrosie Apprentice

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).

mommida Enthusiast

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

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    • trents
      If this applies geographically, in the U.K., physicians will often declare a diagnosis of celiac disease based on the TTG-IGA antibody blood test alone if the score is 10x normal or greater, which your score is. There is very little chance the endoscopy/biopsy will contradict the antibody blood test. 
    • JoJo0611
      TTG IgA reference range 0.0 to 14.9 KU/L
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      What was the reference range for that test? Each lab uses different reference ranges so a raw score like that makes it difficult to comment on. But it looks like a rather large number.
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