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A Little History - My Celiac Disease Diagnosis

I've written in journals, on pieces of scratch paper, on torn-out magazine pages while sitting in airports, just about anywhere I can put pen to paper when the moment strikes and inspires me to move the ink across the page...I suppose I have much to say...not that anyone has to listen - writing and expression are like breathing for me - essentials.

I was diagnosed with Celiac Disease on April 15, 2000 - the Millennium year proved to be quite significant for my life, minus any YK2 computer crashes. My diagnosis arrived sincerely just in the nick of time, because at the ripe old age of 30 I was on my out of this life, due to almost a decade of severe sickness, complications and misdiagnosis. There are still many a day when a flash of my pre-diagnosis past enters my mind and I remember glimpses of my life during those years of confusion, sickness, despair, and ultimate frustration. I don't recall ever feeling fearful of what was happening to me though, because the funny thing about the human spirit is - we fight to live; it's innate to our souls...and of our being. However, I can honestly say that my parents and brother would not concur with my last sentence because they were laden with the fear and uncertainty of my future more than I - my job was to fight through, research,
keep living, keep filling up my soul with whatever joys and enjoyment I could still physically and emotionally take in...and I did just that.

I was a very healthy little girl; active and athletic, loving food of all kinds and full of life. I was a serious equestrian rider and horses were my passion. One of my Basque grandfathers was a true cowboy and taught me the gift of riding at age four and I have four concussions under my belt to prove it…or wait, was it five? It’s hard to remember such things when you’ve hit your head so many times! I have such wonderful memories of riding for hours on end every summer afternoon through the golden hills of northern California. Those days shaped the way I have lived my life as an adult in so many ways and were simply so joyful and rich. It was during those years of riding, in my early teens, when I first began experiencing debilitating migraine headaches - the kind where you loose your vision and your cookies, so to speak. I remember that wearing a riding helmet in the heat was the diagnosis for the headaches that would shut me in my room for an entire day, until my sight returned. It would be 15 years later, after being diagnosed with Celiac Disease, that it became apparent the migraines were my first symptoms. Little did I know back then of the journey that ensued, leading me to a gluten free life of abundance.

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


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7 Responses:

 
kimberly

said this on
13 Apr 2008 6:48:52 AM PST
I was diagnosed with celiac disease about a week ago and I am still very much in pain. I am also 37 and after the birth of my second son I have been in chronic pelvic and back pain. It has destroyed romantic vacations with my husband and changed me as a mother. I was wondering when you started to feel better on the diet. I'm worried it doesn't work!!

 
CeliBelli

said this on
15 Apr 2008 8:51:51 PM PST
Kimberly,

I was just diagnosed in December, and I know how you feel. Give your gut time to heal. If you stick faithfully to the diet, you should start to be pain-free within a few weeks.

 
Michelle

said this on
16 Apr 2008 10:33:17 AM PST
I just got my official test results from Enterolab and now I know I have a gluten sensitivity and immune response to gluten and dairy. I have been gluten free for 3 weeks now and notice some improvement in my energy - but I am also taking more vitamins and have increased my thyroid meds, so not sure what accounts for my starting to feel better.

I found this explanation which may be helpful to you - apparently, it can take some time to feel better!

Gluten-induced intestinal damage is fully reversible provided gluten-free dietary treatment is strict and permanent. However, the length of time to full healing and disappearance of malabsorption depends on the severity and disease duration at onset of treatment. Hence, children and those with more mild disease at onset of treatment will resolve malabsorption quicker, usually within 6-12 months. Some adults with severe disease, or those who do not quickly grasp or employ strictness to their gluten-free diet, may have continued nutrient malabsorption for longer periods. If intestinal malabsorption persists beyond 18-24 months, dietary and clinical re-evaluation should be undertaken.

 
arlene

said this on
22 Apr 2008 9:29:34 AM PST
I am 60 and was FINALLY diagnosed in March 2008 after a lifetime of never feeling right and culminating in severe illness in January 2008. I did my own research, which I hear is quite common and my G.I. doctor concurred. I also have an immune response to dairy, soy and eggs. My question is this: Does the immune response to dairy, soy and eggs ever stop? I am very hungry. I am eating what I can - what doesn't hurt and it takes all my time to cook and eat and I am incredibly tired already from the Celiac and now I have to cook non-stop. I used to be a vegan, but am now eating meat and love it because it IS food that doesn't hurt. I'd like to hear about symptoms other than the blanket-description I can find on most sites. I'd like to share mine too in hopes that these are common and will go away.

 
Rebecca

said this on
28 Apr 2008 10:39:40 AM PST
I just want to encourage those who think they will never feel better. It took me at least a year to get my stomach back to normal. I NEVER thought it would get better and was very discouraged. Here are a few things I did to get there. One, drank aloe juice, cut out refined sugar (still don't eat it), cut out preservatives, and ALL bread even gluten free. It was HARD at first but SO worth it. Besides, none of that stuff is good for ya anyway. Maybe it will prevent future illnesses?

 
Kathleen Hughes

said this on
30 Apr 2008 11:22:04 AM PST
Hi folks - I was diagnosed 24 years ago and have been eating gluten-free since then.

Once you've regained enough energy to bake, you can create some great breads, cakes, cookies, etc. utilizing one or more of the gluten-free cookbooks.

Don't forget to check medications for any gluten. The generic med are usually NOT okay as a general rule. Also lipstick and ANYTHING you may ingest.

The dairy issue does resolve itself for some folks. Soy and eggs, probably not.

 
ShayFL

said this on
11 Jun 2008 6:03:33 PM PST
After the birth of my daughter 12 years ago: I just got sicker and sicker with migraines, neuropathy, constant gas, bloating and diarrhea.

And there was no Google back then. So I enrolled in Clayton College for a degree in Holistic Nutrition. I have a Ph.d. I tried every diet I studied and nothing helped. I even went 'wheat free' with no luck. None of my books talked about Celiac except in passing as a rare genetic disease.

I tried it all. Acupuncture. Cranio-sacral. Rolfing. All sorts of diets. All sorts of supplements. Bio-feedback. Hypnosis. Psychotherapy. Reiki. Faith Healing. I hit an all time low when I called a 24 hour prayer line and got a recording. I almost gave up on myself, god and life. Almost...but something has kept me going. I am a fighter.

My research on neurological disease with unknown etiology led me to Celiac. And here I am 2 months gluten-free. And my migraines are gone!! No more bloating, gas or diarrhea. I only go 2 or 3 times a day instead of 5 or 6. My skin looks better and my eyebrows are growing back in. This is the most hopeful I have ever been that I have found the answer. I will never knowingly eat gluten again. Never!!




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