Jump to content
  • 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):

Any Good Doctors In Tampa Fl


Jon64

Recommended Posts

Jon64 Newbie

Hi I'm new here so here's my brief history: I'm a 47 yr old man who apparently looks and tests as quite fit and healthy. The truth is, I often ache all over and am always tired. About 10 years ago I started getting fairly chronic tendinitis, which after limited help from doctors I started to self-treat 2 yrs ago with a relatively high dose of magnesium. I went from 13 inflamed areas on my body down to 2 within about 6 months.

I've had chronic GERD for over 5yrs. Currently it's under control with pantaprazole, but I've had all imagineable tests done and doctors can find no physical reason for it.

When both of these symptoms cropped up, I found that they both fit under the umbrella of celiac, so I had myself tested. My doctor said I don't look like someone with celiac (?) but reluctantly tested me anyway. It was negative and I forgot about it for a while. As a side note, the same doctor diagnosed me with fibromyalgia - didn't tell me, but was happy to inform my insurance company when I went to get life insurance. Thanks Doc. Almost an extra $80 a month for insurance.

About 2 yrs ago I noticed neck pains when my kids would climb on me. My doctor sent me to an ENT with enlarged lymph nodes in my neck. At this point again, I came back to the possibility of celiac, so Jan 1st (on my own) decided to try going gluten-free. I got a book by Danna Korn to help me with my dietary questions. In it I found that if you've ever had Dermatitis Herpetiformis, you have celiac. Guess what I had about 30yrs ago... that's right, I had DH when I was a teenager. My doctor at the time spotted it instantly. A nasty, itchy rash on both knees. He told me I had a gluten intolerance and to stop eating wheat (he never said forever), gave me a cream and sent me on my way. It was a long time ago, but I seem to remember it going away fairly quickly. And then I resumed eating wheat. Now I've been gluten-free since January 1st.

Anyway, I just finished my 3rd neck ultrasound and for the first time since I noticed it, the nodes haven't gotten bigger. I'm having a needle biopsy done this Wednesday because the ENT is still concerned - as am I.

I also asked my ENT if he thought there could be any connection between the lymph nodes and gluten, to which he replied: "they are learning more and more about that every day" and stuck his face back into his laptop. Anyway, I'd like to be treated by "they".

As much as my well intentioned, sponsored by big pharma doctors try, I don't think they have a clue about these particular autoimmune diseases. All this to say, does anyone know a good doctor in the Tampa Florida area. I'm actually a bit east, over in Lithia, but more than willing to travel for the sake of my health.

Thanks,

Jon


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



Celiac.com Sponsor (A8-M):



MitziG Enthusiast

You are correct- your doctor doesn't have a clue. Wish I could point you to one that does!

I had a huge, painful lymph node on my neck for 20 years that docs dismissed. Guess what went away when I went gluten-free?

Doc also told me my 8 yr old "just didn't look like a celiac kid"- six months before his very positive biopsy. When I insisted on testing myself and my daughter he poo-pooed that as well. And then he stared in disbelief at our positive biopsy reports.

Do you absolutely need the dx? If you had DH, you have to go gluten-free.

You will likely see the rest of your issues disappear gradually as well.

Dx is nice, but finding a doctor knowledgable enough to actually dx you...well, that could take some doing!

Jon64 Newbie

Thanks Mitzi. I've actually gone gluten-free since January 1st and I plan on remaining that way. I have noticed improvements as far as aches and pains, I can actually do a full squat again without using my hands, and as I said, the lymph nodes have stopped getting bigger.

As far as a diagnosis goes, having had the DH is good enough for me. I just wanted a doctor who's knowledgeable on the subject and isn't just humoring me.

  • 1 month later...
robertwilburn35 Newbie

The nice part of having a dx is that a good dr will order lab work and check the appropriate levels of things like b12 bit d fe, h&h, cbc ect. Plus with the dx the dr can order those blood work under codes so you get the insurance to pay the max they are suppose to pay rather than not paying for certain test due to codes

squirmingitch Veteran

But with a dx just watch that insurance hike up again. It's a rock & a hard spot situation. Here's the deal --- you were actually dx'd 30 yrs. ago when the dh was dx'd. A dx of dh IS a dx of celiac.

Now, there's no reason you can't get your PCP to do your vitamin levels & such for you. There are many threads on here stating what tests should be done --- use the search box above.

  • 1 month later...
stacyisgf Newbie

I live in Tampa, FL and I was just diagnosed 3 weeks ago with Celiac tested positive =Iga and had all the classic symptoms for years and my GP said it was IBS, misdiagnosed of course! After so many different things happening to me with no answers....eat=to bathroom, nausea, waking up in the middle of the night dizzy and ready to throw up, black out spells, hair loss, scalp sores, acne and of course weight gain/bloating. I finally landed on the door step of the best doctor. Not sure if Im allowed to name him so here it goes, Dr.Shemesh...mind,body,spirit. I went to him as a last resort, friend referred me... he said he will need to do a blood work up on me and take it from there, went in got he work up done, explanied all the above problems and went back 2 weeks later for review....wow I remember sitting there as he handed me a copy of my lab results and reading through each one with him and thinking OMG! I'm screwed!! I had very high levels of Dga-Iga, tTG, Celiac positive across the board and the worst one was the C-Reative Protein,Cardiac level 6.18 and low B-12 and Vit D. I was a walking mess!! He looked at me and said "your insides are on fire!" you must learn everything you can about living a Gluten free diet and a Dairy free diet or you will never get better! It was life changing. He's wonderful and he has saved my life!

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,075
    • Most Online (within 30 mins)
      10,442

    Nan7472
    Newest Member
    Nan7472
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      There is a 10 year old post in this forum on Edy's and Dreyer's ice cream. The information is somewhat outdated and the thread is closed to further comment, so here is a new one. Edy's And Dreyer's Grand Vanilla Bean Ice Cream - 1.5 Quart is labeled "Gluten Free". This is a different answer than years gone by. I don't know the answer for any other flavor at this moment. On 1 May, 2026, Edy's website says: "As a general rule, the gluten in Edy's and Dreyer's® frozen dessert products is present only in the added bakery products, such as cookies, cake or brownies. We always label the eight major food allergens on our package by their common name. We recommend to always check the label for the most current information before purchasing and/or consuming a product. The exception to this rule is our Slow Churned French Silk frozen dairy dessert, which contains gluten in the natural flavors." https://www.icecream.com/us/en/brands/edys-and-dreyers/faq It seems that Edy's and Dreyer's are more celiac-friendly than they were 10 years ago. Once I found enough information to make today's buying decision, I stopped researching.
    • Aretaeus Cappadocia
      probably not your situation @Mimiof2, but allow me to add one more to @trents list of celiac-mimics: "olmesartan-induced sprue-like enteropathy"  
    • knitty kitty
      My dad had an Abdominal Aortic Aneurysm.  Fortunately, it was discovered during an exam.  The doctor could feel my dad's heart beating in his stomach/abdomen.  The aneurysm burst when the doctor first touched it in surgery.  Since he was already hooked up to the bypass machine, my dad survived ten more years.  Close call! Triple A's can press on the nerves in the spinal cord causing leg pain.  I'm wondering if bowing the head might have increased the pressure on an aneurysm and then the nerves.   https://gulfcoastsurgeons.com/understanding-abdominal-aortic-aneurysm-symptoms-and-causes/ Abdominal Aortic Aneurysm Presenting as a Claudication https://pmc.ncbi.nlm.nih.gov/articles/PMC4040638/
    • Aretaeus Cappadocia
      You have an odd story there. To me, the mechanical trigger suggests a mechanical problem and lower leg pain is a classic sciatica symptom. The fact that the clear mechanical linkage is no longer there does not take away from the fact that it was - maybe something shifted and the simple alignment is no longer there. There's also a good chance I am wrong and it's something else entirely. @Scott Adams's mention of shingles is interesting. It seems possible but unlikely to me, but who knows. However, I am writing here to reinforce the idea of getting the shingles vaccine. Ask anyone who has ever had shingles and they will bend your ear telling you how bad it is. I watched my wife go through it and it scared the bejeebers out of me. Even if you had the chicken pox vaccine, you really want to get the shingles vaccine.
    • HectorConvector
      Oddly this effect has gone now, just happened yesterday evening, the nerve pain is now back to its usual "unpredictable" random self again - but that was the only time I ever had some mechanical trigger for it, don't know why! There's no (or wasn't) actual pain in my neck - it was inside the leg, but when I looked down, now though, the leg pain just comes and goes randomly as before again.
×
×
  • Create New...