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Lisa M.

Celiac Specialist In Jacksonville, Fl (Not At Mayo)

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Hello,

I got negative IgA and tTG-IGA today.

I have many celiac symptoms as of now and am starting to miss work. I will list symptoms below.

I was bedridden last week and so sick that I went off gluten last Friday after the blood was drawn. I discovered soon after that lactose is also an issue for me now. So I've been free of both since last Saturday. Sunday I felt a little better and notably better Monday. I'm still fatigued and have trouble falling asleep and sleeping. Not normal for me.

My insurance does not allow me to go to Mayo.

I was tested Nov 2012 at Mayo via blood work and biopsy at the Dr's suggestion. Negative. Since then I have declined steadily to the point lady week of missing work and having to cancel business trips.

I have been reading your blogs and there's so much great info here, I'm hopeful that some of you will have suggestions and/or a Dr recommendation that's not a Mayo Doc in the Jacksonville, Florida area.

I had EBV in fall 2012, got better in spring but then the celiac symptoms really got worse.

I have a notebook with 18 inches of tests. First Dr's said Lupus -no diagnosis. Then MS wS suggested. Then I was told HypoT, testing for Hashi's pending.

Symptoms: severe migraine, extreme

Symptoms:

Chronic migraines

A fib

Bouts of Constipation or diarrhea. First time normal in 1 yr + today after 1 week off gluten

Inflammation everywhere.

Cardio CRP high on test 3-4 weeks ago

Also insulin is high last few mos

Have gained 40 lbs since last fall

Swollen fingers and ankles feet, severity up and down

Tingly fingers

Pain in foot, numb in feet, tingly like asleep sometimes

Lumps on the outside of both my wrists on left if palms up, bigger than a quarter, about 1 to 1.5 in from where hand and arm join

Swollen bloated stomach, looks like I'm 6 mos pg when it happens

Gas from both ends lately, stopped 3 days after gluten free

EBV last year Nov or Dec onset

Foggy and loss of memory since last April -notably

Last few mos, I can't concentrate, can't even read sometimes. After 1 week off Gluten -This is better now, not solved.

Fatigue so extreme I'm missing work

Initially craved sugar and caf to try and go all day

Hypo t-being tested for Hashi's

Anemia

Low Vit d and taking 10k a day

Absorption issues per the GYn that checks my hormones

Latest is I have to pee at night when I lay down and a lot at nightjar

New lately is I'm exhausted but can't call asleep and sleep isn't as good

Swallowing issue

Lactose intolerance since August 2013

MRI's and CT scheduled 9/23 to rule in or out MS.

I am sorry for the long post, I cried today at the suggestion from primary that I eat gluten so biopsy will show celiac if its there.

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I would recommend a Functional Medicine doctor.  I am guessing it may have been my blog as I haven't seen others blogging about their doctors recently.  I looked up functional medicine Florida and noticed names, but I am in MN so I am not familiar with any of them.  A functional medicine doctor tries to look at the body as a whole, tries to find the root of the problem, and treats with supplements.  If you ever visit MN, I recommend Between the Bridges in Mankato.  They do have many patients out of state.

 

Whatever you do I wish you well,

 

D

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Thank you so much. I did get a name of a GI at Borland Groover in Jax today. I will call them first thing Monday.

Borland-Groover Clinic in St. Augustine. Dr. Pineau or a female there, Dr. Hoogerwerf are both great, there is a Borland-Groover in Jacksonville too, but I have no experience with the doctors.

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I would recommend a Functional Medicine doctor.  I am guessing it may have been my blog as I haven't seen others blogging about their doctors recently.  I looked up functional medicine Florida and noticed names, but I am in MN so I am not familiar with any of them.  A functional medicine doctor tries to look at the body as a whole, tries to find the root of the problem, and treats with supplements.  If you ever visit MN, I recommend Between the Bridges in Mankato.  They do have many patients out of state.

 

Whatever you do I wish you well,

 

D

Thank you so very much! I have never heard that term. I don't have funds to travel easily, but this has gotten so extreme, I have to figure something out. I am 52 and feel 68 most days this last 11 months. I appreciate the suggestion and the well wishes.

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