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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.

Just Venting (Long)
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7 posts in this topic

Ugh, I just need to get this out there to some people who understand.  I have been gluten free for 2 years and I think that has resolved some of my issues, but I suspect that some other health issues have come to the forefront now.  I've been dealing with this off and on for about 6 months.

 

I love my GP.  She is a wonderful, kind, caring doctor.  But she's not understanding what's wrong with me.  I tell her that I'm tired all the time and can barely get up out of bed in the morning.  She wants to describe another anti-depressant for me.  I tell her that I feel like my metabolism is crawling after I get glutened, and she prescribes a stimulant for me.  She wants me to lose weight, and I do too, but I want to figure out what's going on with my body first.  There is something wrong with me and pushing another pill at me isn't going to fix it.

 

So I decided to visit a Naturopath that a friend recommended.  He has his MD but practices integrative medicine.  I called to make an appointment and their next new patient appointment isn't until April!  Yes, April.  I'm so frustrated.  There's are two other clinics in town - one with an MD on staff one one with just a naturopath - but I don't know anyone who has been to either.  And all the reviews on this first guy are awesome. 

 

Of course insurance won't pay for any of this, so it will all be out of my pocket and will likely cost $1,000 or more.  If I'm spending that much money, I want to make sure I go to someone good and that I get the help I need.  But I don't want to keep feeling like crap until April.

 

On top of all this, DS has been undergoing ADD testing for the past month.  He finally got all the testing done and we can't get into his psychologist until the end of next month.  So there's another month of school gone by without him having either medicine or a plan in place.  And the school can't finish his IEP until the doctor is done with his paperwork.  And, I'm going to get him genetically tested for the Celiac genes, but was waiting until we had to go back to the pediatrician to get him on the ADD medicine to have it cheek swab done at the same time.  I have high deductible insurance so each time I walk in her door it costs me $145, hence the need to combine stuff into one visit.  So I have to wait on that too.

 

I'm not normally a hypochondriac but I keep searching the web to find out what's wrong with me.  And I keep coming up with a variety of possible things - thyroid issues, histamine intolerance, other food intolerances, adrenal fatigue.  I want to find out which of these things are causing my issues so that I can start feeling better.

 

It's just frustrating because I feel like I'm stuck in limbo, waiting on other people.  Anyway, thanks for listening to my pity party. 

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rant ahoy!  lolz 

 

can you get on a waiting list?  sometimes doctors will get cancellations and you can get in earlier. 

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I am on the waiting list and the receptionist said they sometimes have cancellations, but she can't say for sure if they will.  If I hadn't heard such good things about this guy, I would go find someone else.  But my options are really limited and he seems like the best NP in town.

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maybe you will get lucky - you do have the luck of the irish going for you ;)

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While you're waiting at least you can test out the "other intolerances" theory. Do an elimination diet. Ditch all of the common foods that cause intolerances like corn, soy, nightshades, dairy, and whatever else you suspect. I'm not familiar with high histamine foods, but salicylates are another one that can cause problems. Get your diet down to the very basics and maybe only try one new food a month so you'll have time to see if you start feeling better.

 

I hope things improve for you soon. ((((HUGS))))

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Somebody posted a link for online medical tests you can order yourself without a doctors involvement a while back.  If you can find a  lab to do them for you, they might be less expensive and you wouldn't have to wait.  You could get thyroid testing done for instance.  I don't remember the lab name but someone else may.

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Thanks for the ideas everyone.  I didn't respond earlier because I was sick all weekend with a horrible headache.  I'm going back to basics and doing an elimination diet and keeping a food journal.  I started both a while back but the lack of energy makes it hard for me to stick to it.  I've determined I'm going to this time.

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      Having anxiety is a major symptom of celiac disease per many of our members on this forum (including me).  These are the tests needed for diagnosing celiac disease but the catch is that you need to be consuming gluten in order for them to be valid.   http://www.cureceliacdisease.org/screening/ Your GP or PCD doctor can order the panel.  Try to go for the complete panel.  Often just the TTG tests are given in order to save costs.  It's good, but does not catch all celiacs. I hope you get relief!  
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       Breach of Confidentiality (...if she sends my medical records to my doctor or discusses them with him. I am requesting a copy of my records from this doctor t see if she sent anything to him.)
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