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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Jon64

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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