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Any Good Doctors In Tampa Fl
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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

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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!

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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.

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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

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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.

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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!

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    • Hello, I see you posted this a long while ago, and perhaps--I hope-- it's no longer a matter of concern, but I thought I'd mention that shortly before I was diagnosed for celiac's, I had distinct yellow blotches on the corners of my eyelids toward my nose. Some months after I had stopped eating gluten, the yellow gradually went away, and--as it just reappeared now several years later, I googled the issue again.  I am only speculating here, but I do believe it is related to liver problems, which, in turn, are related to celiac's. I don't think liver function tests cover all aspects of liver health. I say this because when I was pregnant I developed a temporary liver condition called interhepatic colestasis of pregnancy (ICP), but my liver function tests had been fine. (The condition is diagnosed based on bile levels in the blood, not on liver function). I discovered upon some research that (of course!) ICP  can be associated with celiac's disease.  My hunch is this-- that celiac's presents two problems to the liver: 1) the malabsorption of nutrients--esp. Vit. K2-- that are vital liver health; 2) since gluten registers as a toxin to the immune system (I think?), perhaps the liver gets overloaded processing so much toxic material. Or perhaps there's some other reason. At any rate, poor liver health and celiac's do seem to be linked, according to a few articles I've found. Anyway, hope your problems are resolved now.  
    • my daughter did stool test from enterolab but this gluten sensitive blood test is from http://requestatest.com/tests/search    
    • OK, was your daughter tested by a doctor or did you do one of these order online stool tests? And the same question goes for your tests. Can you give a link to the company?
    • NO. Approx. 1/3 of the population carries the genes for celiac but that does NOT mean they will ever present with celiac. Only a small percentage of them will. A gene test is really used more to rule out celiac rather than to diagnose it. What I meant was that since your daughter is diagnosed and IF you carry one or both of the celiac genes then there is a greater chance you are celiac or "early stages" especially in light of your symptoms. All 3 of those factors weighed together was what I was referring to.
    • by the way, I do find the lab who does the gluten sensitive test Gluten Allergy IgE Test This test is used to determine if a person has an allergic reaction to gluten, a protein found in wheat, barley, and rye.  Roughly 1 in 30 adults and 1 in 40 children suffer from a Gluten Allergy.  An IgE test looks for antibodies which develop in a person who has a particular allergy.  Gluten Allergy can display symptoms similar to other conditions such as Celiac Disease.  Unlike an allergy, Celiac Disease can do permanent harm to the body if left untreated.  Allergy testing when a person is experiencing symptoms can help identify or rule out an allergy as the cause.

      Gluten Allergy is typically less severe than other Gluten related conditions like Celiac Disease.  People with Gluten Allergy will often experience abdominal discomfort, bloating, gas, constipation, or diarrhea when they eat products containing gluten.  These symptoms usually stop when a person cuts gluten out of their diet.

      A Gluten Allergy IgE test can be ordered to help determine if someone allergic to gluten.  This test can also be ordered when a person is testing for Celiac Disease and has had negative results on Celiac specific antibody tests.  An allergy test can also be ordered prior to Celiac testing to rule out Gluten Allergy as a likely cause for a person’s symptoms.
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