Jump to content
  • 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

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.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Seeking advice on potential gluten challenge

    2. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Seeking advice on potential gluten challenge

    3. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

    4. - trents replied to Mark Conway's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Have I got coeliac disease

    5. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Seeking advice on potential gluten challenge

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

    • Total Members
      133,154
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
    • trents
      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
    • trents
      @Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test.  In addition to IGA tests there are IGG tests which are particularly useful in the case of IGA deficiency.  
    • JudyLou
      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.