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Doctor Won't Help Me

Rdv22222

By Rdv22222
in Coping with Celiac Disease

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Rdv22222 Rookie
Rdv22222
Posted

Hello. My doctor just called and said my celiac blood tests were negative. When I asked him for a skin biopsy, he said, "maybe sometime we could do that".

He is referring me to a Gastroenterologist. He said they could look at my slightly elevated liver enzymes.

I asked him about the rash on my elbows, back, buttocks, scalp, neck, knees and he said he didn't know what it was.

I am going to be tested for celiac again at the gastroenterology office, since this is something they can do. My doctor told me that the endo and colonoscopy tests were "very expensive" and that I "don't have insurance". I told him that I could make payments.

I am tired of my doctor always talking about money. I think it is time to get another doctor.

I still believe I have celiac because I have all the symptoms. I am very discouraged, but I appreciate all the comments and support I get here on this forum. I pray for all of you every day.

Rita

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kareng Grand Master
kareng
Posted

you could go to a dermatologist for the biopsy of your rash. I believe they take samples next to the lesion.

williamsburg000 Rookie
williamsburg000
Posted

Hi Rita,

I'm based in the UK, so not too sure how much the US healthcare system differs - but could you raise your concerns with the Gastroenterologist?

A few years back I also had raised liver enzymes and was diagnosed with NAFLD. Looking back what I actually had was autoimmune liver disease caused by the Celiac.

I know how hard it is to navigate a way around the medical professonals as well as coping with this condition, but if you feel it's Celiac, that's what counts - unfortunately from my experience it can take a while for others to catch-up with us.

captaincrab55 Collaborator
captaincrab55
Posted

you could go to a dermatologist for the biopsy of your rash. I believe they take samples next to the lesion.

I ended up with 4 stitches after the biopsy. It took 2 weeks for the results that were off the charts... It was a bit costly, but I only had to pay 20% after insurance payment... The "Gold Standard" still requires a Positive Blood Test to confirm it... One could just use the Iodine Test and accept the results.

Keep in mind that my Drematologist read my Blood Test results as High and the GI office read it as Borderline Celiac.. I changed my GI and he read the Blood Teast results as High too...

Skylark Collaborator
Skylark
Posted

If your insurance is bad, remember that you do not have to get a formal diagnosis to go gluten-free for a while and see if the symptoms go away. It usually takes a few months for everything to settle down.

Aphreal Contributor
Aphreal
Posted

What? Dr's not listening to their patients? Surely you jest (Insert sarcasm)

What other celiac symptoms do you have? Do dietary changes help? Have you eliminated anything yet?

That will be your best bet in controlling symptoms of celiacs but like the above poster I would have a dermatalogist biopsy the leasion itself and see what they say first. In the meantime though, I would start looking heavily at what your eating. hang in there, you will find much support here.

ravenwoodglass Mentor
ravenwoodglass
Posted

You mention that you don't have insurance. If you really need a doctors diagnosis do check and see if you qualify for one of the low or no cost insurance programs or perhaps even Medicaid. You may not qualify but it doesn't hurt to check and you can have some savings and a job and still qualify for some of them.

If you feel you can stick to the diet without a doctors diagnosis then you can try simply eliminating gluten. It may take a while to heal and you should eat as much whole unprocessed food as you can but if you need the diet your body will respond to the diet.

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cassP Contributor
cassP
Posted

Rita- i would also suggest you obtain a paper copy of your Celiac blood test for your own use. every doctor orders different tests for Celiac- and sometimes they're incomplete. OR they don't read them right, OR they're borderline numbers that still could be suspect.

so, in addition to finding a good GI & Derm- def. start with having your own copy of your blood test for your file.

good luck

lizard00 Enthusiast
lizard00
Posted

And once you get your test results, post them here. You'd be surprised at how good the folks around here have become at reading them :)

Hopefully you'll get a GI who is well versed in celiac. Just make sure you are well informed when you go, that way you will be able to tell if you want to continue working with that particular doctor.

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      @nancydrewandtheceliacclue, you are welcome. After looking at this thread again, I would like to suggest that some of the other comments from @Russ H are worth following up on. The bird-bread may or may not be contributing to what you are experiencing, but it seems unlikely to be the whole story. If you have access to decent healthcare, I would write down your experiences and questions in outline form and bring this to your Dr. I suggest writing it down so you don't get distracted from telling the Dr everything you want to say while you have their attention.
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