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Celiac Support

I became a Celiac "Blogger" at the beginning of this year. For months I had longed to take the time to put my words to paper or keyboard and write snippets about my life's journey as a Celiac and in doing so, offer up all kinds of fun food, product, and restaurant tips to others who are searching or just curious.

Being a Celiac has been such a tremendous journey of transformation, observation and consequently learning so much about myself.  I look my diagnosis now as a blessing - a gift, really.  I realize for those of you newly diagnosed Celiacs, a few who have written to me, you are definitely NOT sharing my same sentiments right now.  You will...in time.  There are so many emotions wrapped around the realization that gluten will do serious harm to you, both physically and mentally. Most non-Celiacs are baffled as to how this could be so complex. I am always patient to try and explain that
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suddenly being diagnosed with this auto-immune disease, especially in your adult years, is a tremendously difficult challenge to overcome...but we all do, with grace and humility AND a lot of help from our fellow Celiacs.

My advice to anyone reading this entry is...reach out for help! Do not be afraid to ask, inquire, research, study, learn and once again...ask for help. I'm more than willing to be added to your list of Celiac supporters. It takes strength and courage to live with this disease, but you will be amazed at the wonderfully insightful and caring humans you will encounter on your journey back to health and happiness.

Gluten-free abundance to each and every one of you.

As always, Celiac.com welcomes your comments (see below).


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3 Responses:

 
LAF

said this on
27 Apr 2008 4:41:25 PM PDT
I was just diagnosed this week and although I thought I might have some other ingredient that I might not be able to tolerate, I had not considered labeling it Celiac Disease. Is the Blood Test the only form of diagnosis I should expect or should I be asking for more in depth answers and tests?

 
Aimee

said this on
05 May 2008 5:05:14 PM PDT
Well the most certain way to be diagnosed is via small intestine biopsy - then you would know for sure...but I believe that the blood test is fairly accurate anymore. You could easily be intolerant now of lactose, soy, or dairy - that's how I was for quite a few years until my body finally was able to digest without issue. I hope that helps.

 
Nicole

said this on
15 Feb 2010 7:58:19 AM PDT
I was diagnosed with celiac disease in 2002. All these years I have been ignoring the issue thinking, if my signs/symptoms aren't severe, then what harm could really come to me? Truth is I am frightened and realize that it's time to do the right thing. My biggest obstacle is the mental side of things. I have found no support in this aspect. I don't know how to keep focused and stay gluten free as opposed to saying to hell with it, which is sometimes a lot easier to do.




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You would think that there is enough people out there, people with celiac disease, that we'd be able to push for a better standard than 20ppm. The problem is the FDA. Too much lobbying involved. It's no different than the fight people are having with Monsanto. I hear that there are several medications that are showing promise in Canada who I think also has a better standard than us.(not positive about that though)

Make sure that you ask the doctor how long she has to stop the supplements before you have her levels tested and be sure to take them all with you when you have the appointment so the doctor knows what she is taking.

Talk to your doctor. With your family history and symptoms he/she may be able to diagnose based on resolution of your symptoms and family history. Also check with your local hospital if it has it's own lab. Mine covered any labs at a greatly reduced cost based on a sliding fee scale. Did you have an MRI before they did the spinal? Celiacs with neuro impact will have white spots on an MRI that resemble the lesions found with MS. Many neuro doctors don't know this. I went through what you did and they did a spinal on me also based on the MRI results. If my doctor had know what the UBOs (unidentified bright objects) were I would have been diagnosed a couple years sooner than I was. Make sure if you supplement that you ask your doctor which ones you need to stop taking and for how long before they do a blood test to check levels. Sublingual B12 is a good idea when we have nervous system issues, but needs to be stopped for at least a week for an accurate blood level on testing. I hope you get some answers and feel better soon.

Thanks for that. Will get her tested for deficiencies. I did take her to a naturopath and get her on a bunch of vitamins, but she never was tested via bloods, so will get on to that, thanks

Hi Could a mod please move this post: and my reply below to a new thread when they get a chance? Thanks! Matt