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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 FREE Celiac.com email alerts 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.
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Finding A Private Dr
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5 posts in this topic

Hey guys, hope you're all well and excited for Christmas!

I'm now 3 months in to my gluten free diet. I'm still suffering with brain fog, terrible fatigue, sore eyes. These are the issues that bother me most, as they're 24/7 and have been for over 15 years and it's really driving me nuts.

My Dr sucks, he was reluctant to do any tests. I'm not sure what I was supposed to do, to ensure he understood how desperate I was, short of collapsing on his floor.

The only tests he wants to do was Iron and Thyroid. Though the Thyroid tests were merely TSH, which come out at 0.7. I've since learned that, there are various reasons why TSH can be low, and still have low Free T3 and T4. But he said the clinic won't test for the others, as my TSH is normal.

Well, I have this nagging feeling, that I have a thyroid issue. I have nearly every symptom and the way I feel, just isn't damn normal and I'm sick and tired of dealing with it. I want to be well and I'm not going to give in, because my Dr is a tit.

So, I want to find a reliable, private Dr, in the London area of the UK. But I have no idea where to start.

What I really want, is not to even talk to anybody, but have a full blood test, that covers everything and will tell me what I need to know and give me some direction.

Any advice, links, suggestions, would be awesome.

Thanks a lot guys :)

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I can relate to docs who will not listen to you! I am sorry you are having so much trouble. I ended up ordering my own blood tests though an online company. They send you the lab order, then you go to the lab they have contracted with to have your blood drawn. I used MyMedLab.com. You have to pay out-of-pocket, but it was worth it to me just to figure out what was wrong. Not sure if you have the same things available in the UK, but maybe worth a shot to google and find out?

Another way to find good docs is to ask the pharmacist at a compounding pharmacy. Very often they work with naturopaths, or alternative doctors who are used to treating the whole body, and not just treating symptoms. I have found that these types of docs are more thorough then traditional MD's.

That said, you don't mention what types of doc you are currently seeing. Is he an internist? Endocrinologist? GI? Perhaps an endocrinologist would order a more comprehensive thyroid panel, and a GI doc would be able to do a complete screening for celiac.

You can also check the websites of alternative physician trade organizations in the UK. Very often they have patient resource links with information on local doctors.

Good luck to you!

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I'm sorry you feel so lousy. I'm in the US so I can't help you there. Just want to give you some encouragement to stick with it, I hope you get to feeling a lot better.

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Thanks guys :)

My current doc is just a GP (general practitioner). He's not mad any referrals and is extremely unlikely to, until I get to the bottom of this myself. Or at least have some good leads.

I was talking to a friend last night, who has lupus. She's convinced I do too. Largely because of the massive sensitivity to fluorescent lights I have. As soon as I'm under them, I begin to feel uncomfortable, my eyes get sore and eventually I feel weak and dizzy. My skin gets bothered too and just generally feel disorientated. In sunlight, which I enjoy, I just get wiped out pretty quickly but don't get sore eyes.

I've emailed a few local rheumatologists, who I'm hoping will be able to look in to my sickness a little deeper. I also found an article about auto immune disorders, which I found really helpful, you can check it out here: understanding autoimmune diseases. It explained a lot about what's actually going on inside, why we're sick etc.

I think between a rheumatologist and a full blood scan, I should be able to make some strides forward.

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Don't know how the process works in the UK, RealMaverick. I used the system in 1961 but that was way too long ago. Have been used to the U.S. system, and am just now getting readjusted to the New Zealand system. Modern life is so complex :P Here we have the option of the public system, or "going private", which I tend to do a lot of the time because waiting times can be so long for referrals to public. I am lucky to have a GP who thinks I know what I am talking about and is willing to make a referral for me to any of the specialists I want. You may not be so lucky on this count. I often don't accept them because I have full private insurance in the U.S. and go there every summer, so just prefer to wait for what will be covered by my insurance. But I remember years ago in New Zealand under our system that a GP wanted to remove a mole I was concerned about. I was sufficiently concerned about it that I wanted to have someone who really 'knew' what he was doing remove it, i.e., a surgeon. I was told I could not see a surgeon without a referral, which I was not going to get :rolleyes: So I called the surgeon of my choice, explained the situation, and was given an appointment the next week as a private patient. So there are ways around things, I guess if you are willing to foot the bill. If it is important enough to you, it is probably important enough to pay the money. I would make personal contact with the doctor you want to see.

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    • Okay, I found a dr about a half hour away, soonest appointment is in 3 weeks. If they have a cancellation they will call. They said of course I should not have stopped eating gluten before testing and don't know why anyone who is a GI would say that. They asked for the name of the dr. I will get back onto gluten in the meantime. 
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