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Grand Rapids, Mi Area Doc?
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Hi, I was diagnosed with celiac by a GI doc 8 months ago after having biopsies done during an endoscopy. I have been gluten free since but am not noticing improvement in the amount of stomach and muscle/bone pains I have. I am also getting flare ups, every 3-4 weeks, that keep me in bed for a few days at a time with worse symptoms. So I'm really motivated to want to feel better! Does anyone have a doc in this area that has helped them recover?? Thanks much for your help.

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I don't have a name of a doctor but I do know that there is a great group from the Anchor Baptist Church, the total church is gluten-free & they put on a great gluten-free vendor fair yearly.. Sorry, its over this year... But call the church & ask to have Nancy call you , she can maybe give you a heads up...I think her last name is Speers...I don't have the church address but it is in Grand Rapids area....the vendor fair was held at the Deltaplex...

I sure they can supply a doctors name ....

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I don't have a name of a doctor but I do know that there is a great group from the Anchor Baptist Church, the total church is gluten-free & they put on a great gluten-free vendor fair yearly.. Sorry, its over this year... But call the church & ask to have Nancy call you , she can maybe give you a heads up...I think her last name is Speers...I don't have the church address but it is in Grand Rapids area....the vendor fair was held at the Deltaplex...

I sure they can supply a doctors name ....

Thank you again!!! This is really helpful. My GI doc hasn't been helpful and said that I may have IBS on top of celiac. I've heard the IBS diagnosis for the last 10 years and my symptoms have continued to get worse. I don't feel that he is taking me seriously. So it's time to move on.

Best of luck to you :)!

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You are so welcome! I too, had many dx's before going gluten-free, IBS being one of them,gallbladder removed,& so on.. It's enough to drive a person crazy hearing doctors say over & over its all in your head but I living proof say keep on fighting.....Years ago I was given the death sentence of ALS, I thank God everyday for this not being the case... Been gluten-free ever since & most issues are long gone but still have weak days now & then.. BUt I'm talking, walking & remaining very healthy.......

You too will get through all the issues & the clueless doctors...

Maybe we can meet next year in Grand Rapids! I /we had a great time at the vendor fair & the group is so nice... I love Nancy....

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You are so welcome! I too, had many dx's before going gluten-free, IBS being one of them,gallbladder removed,& so on.. It's enough to drive a person crazy hearing doctors say over & over its all in your head but I living proof say keep on fighting.....Years ago I was given the death sentence of ALS, I thank God everyday for this not being the case... Been gluten-free ever since & most issues are long gone but still have weak days now & then.. BUt I'm talking, walking & remaining very healthy.......

You too will get through all the issues & the clueless doctors...

Maybe we can meet next year in Grand Rapids! I /we had a great time at the vendor fair & the group is so nice... I love Nancy....

Wow, how scary to be told you may have ALS!! Thank goodness that is not the case--Celiac is treatable and I'm very grateful for that also. A good friend of mine made it to the gluten-free fair this past May (I was too sick to go at the time) and really enjoyed it, so I want to go next year and would like to meet up with you if you are there also. I do feel very fortunate that there is so much available that is gluten free. I'm going to contact Nancy and appreciate the advice...

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    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
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