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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Hello. what to say....
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2 posts in this topic

Posted (edited)

Greetings

I was diagnosed with Celiac through a blood test about 15 years ago..... I dismissed it.

I attributed my "illness" with its various debilitating symptoms, to some supposed chronic form of Rocky Mountain Spotted Fever, because it would constantly test positive for it although RMSF is not suppose to be chronic.

Over the years ive had just about every test done, im probably glowing with radiation and magnetism from all the MRI's and CT scans that ive had.

My Appendix decided it could no longer handle living below my vile gut and had to be removed.

My Liver had decided it's going to get fatty and develop scar tissue and cysts even though im not a drinker.  Maybe it due from the years of taking "Aleve" to deal with my pain.

Just recently, due to a new symptom, constant sharp pain in my side, i had another Celiac blood test, thanks to the insightfulness of a young doctor who suffers from it herself.

Guess what ,, yep it came back positive. which for some odd reason both surprised me and at the same time, didn't.  The diagnoses fit.

But how could an illness with such unmistakable symptoms be dismissed for something else? I think maybe because im a guy and also maybe i didn't expect what i mistakenly labeled a "Wheat allergy" to be so destructive with so many seemingly unconnected symptoms. Basically that was just pure ignorance, plain and simple, on my part.

So now , i have been scheduled for a Colonoscopy, Endoscopy and Biopsy all on the same day.

Im scared,, i can't handle those big procedures any more. im so tired all the time.

I should be taking care of my parents at my age, and i try, but they are having to still help me.

i'm so tired, im not disabled,, but i can't work very much do to just a chronic flu feeling,  i become exhausted and feverish. i live in a fog sometimes. i have no doubt some think im on some drug.  If someone were to tell a joke the audience laughs and it takes me  a second to get the joke and by then everyone else is done laughing.

There are a lot of "I"'s in this post,,, for that i apologize. Guess it's more of a vent than a greeting.

But i digress

HI :)

 

Edited by OldNoob
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Hi and welcome :)

First things first, you've found a great site, all the info you need is here along with as much support and advice as you can handle from people who know exactly what you're going through. That means not just the physical, but the mental shock to the system and grief/frustration/anger and regret at not finding out sooner. We've been there, got through to the other side and so will you. 

Reading your post was a lot like looking at my own account. I did exactly the same thing, realising that I maybe had a 'problem with too much bread' but failing to follow through and finding out what was really going on. A lot of denial, bulls$#& macho pride etc. Followed by a healthy serving of bitterness and regret when all the chickens finally came home to roost. 

I didn't blame it on rocky mountain spotted fever though. That's a new one :D. Anyway try not to beat yourself up about:

4 hours ago, OldNoob said:

But how could an illness with such unmistakable symptoms be dismissed for something else?

Because the reality is that its a nightmare to diagnose, there's a massive ignorance of it within the wider public AND the general medical establishment and many of us here have similar tales to tell. 

 

To the specifics. Being new here gets you a free one time referral to this thread:

There's some great info in there so be the person that DOES read the faq and get ahead of the game.

This:

4 hours ago, OldNoob said:

So now , i have been scheduled for a Colonoscopy, Endoscopy and Biopsy all on the same day.

Im scared,, i can't handle those big procedures any more. im so tired all the time.

Is entirely natural reaction. The good news is that you won't have to handle much, my guess is they'll put you under and do the heavy lifting. You can sit back and enjoy the ride... The biopsy takes place as part of the endo so if it helps think of two procedures rather than 3. I declined anaesthesia for the endo (so I could drive home / foolish macho pride) and whilst it was unpleasant, it wasn't too long. If you can get someone to take you to the hospital then take the sedative and enjoy the morphine buzz :P

 Finally: 

4 hours ago, OldNoob said:

i'm so tired, im not disabled,, but i can't work very much do to just a chronic flu feeling,  i become exhausted and feverish. i live in a fog sometimes. i have no doubt some think im on some drug.  If someone were to tell a joke the audience laughs and it takes me  a second to get the joke and by then everyone else is done laughing.

Unless your GI has told you otherwise you need to keep on gluten till the endo, but after that you have a world of healing to explore. The tiredness the brain fog, that slowness you speak of, that should all resolve over time as long as you follow the diet and help your body heal itself. 

You're at the worst point in this, from here on out it's going to get a whole lot better. 

Best of luck!

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