Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Celiac Specialist In Jacksonville, Fl (Not At Mayo)


Lisa M.

Recommended Posts

Lisa M. Newbie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Alwayssomething Contributor

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.

1desperateladysaved Proficient

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

Lisa M. Newbie

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.

Lisa M. Newbie

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.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

    2. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

    3. - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

    4. - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

    5. - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,369
    • Most Online (within 30 mins)
      7,748

    Nick H.
    Newest Member
    Nick H.
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...