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Celiac Specialist In South Eastern Michigan?
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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!

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

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

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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!

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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.

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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.

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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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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!

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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).

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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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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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