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Share Your Story: The Road to Diagnosis can be a Long and Difficult One

If you are gluten sensitive, chances are good that you have dealt with years of symptoms, countless doctor visits, or too many tests. Sometimes hearing how other people made it through is the best medicine for those still struggling to find the right doctor and get the right diagnosis for optimal long term health.

We have created this page to invite you to share the story of your bumpy road that lead to an eventual celiac or gluten intolerance diagnosis. And when living a gluten-free life seems especially challenging, maybe reading someone else's story will help inspire the strength and will-power we know you have.

In about 200 words or less, would you like to share your story? Just send us an e-mail to thefox@glutenfreefox.com with "Your Story" in the subject line.

 

My Story:

I was on two pills a day by age 28, supposedly, for the rest of my life. Still, most days I was not without symptoms: digestive troubles, migraines, fatigue, bloating, acne breakouts, acid stomach, etc.

Then, Taylor came across an article that mentioned similar symptoms in response to an oat allergy. I took the article to heart and after some research put myself on an elimination diet.

Within two weeks I was feeling better than I had in years and with my doctor's approval quit both medications. A few months later I went to an allergist to be tested--this resulted in the worst doctor visit of my life. I was treated like a foolish child and then blood-tested for gluten sensitivity--which would come out a false negative, since I had been avoiding gluten for several months.

Losing hope, I visited a local bookstore to do some research, when out of the blue, renowned author (and celiac) Jacquelline Mallorca approached me and offered her help and advice. She inspired new hope in me and recommended EnteroLab, where despite my many months off of gluten, I received my diagnosis: severely intolerant to gluten (and to casein).

-Kristen

Anne's Story:

Fatigue, joint pain, peripheral neuropathy, depression, coronary heart disease and
more.

My doctor told me "What do you expect, you are getting old." I was 59.

I asked to be tested for CD and was told I could not have that, because I did not have
diarrhea and weight loss.

I was finally tested through Enterolab. And antibodies were found. I went GF August 8, 2003. By day 4 I knew I was on the right track.

Fantastic health improvements. Depression, joint pain, fatigue, shortness of breath
and pitting edema gone. Peripheral neuropathy - still have numbness, but pain is
gone. So many other health problems resolved.

Do I have CD or gluten intolerance? It does not matter. What matters is that I know
gluten makes me sick and I feel wonderful living GF.

My two sons and their wives are GF and enjoying better health too.

-Anne

Mrs. Katz's Story:

For fifteen years, I endured a constant and grueling battle with fatigue, headaches and indigestion.   Physicians, nutritionists and alternative health practitioners were baffled by my condition, which was originally diagnosed as ‘Chronic Fatigue Syndrome’, with no apparent cure. 

Every day presented a new challenge, as I struggled to maintain a healthy lifestyle for myself and my family.  As the years progressed, my condition steadily declined and I began developing rheumatoid arthritis.  I was desperate to find a cure.

And then it happened.  It was during a random visit to the supermarket when I came upon an acquaintance who innocently mentioned the words ‘celiac disease’ As I researched more and more, my ailments seemed increasingly similar to the common celiac symptoms, so I scheduled an appointment with my doctor who, upon thorough testing, confirmed the diagnosis. I also learned that two of my five children suffered from Celiac Disease.

At long last there was a name and potential cure for my suffering.  I am sure you all remember that initial sensation - that apprehensive and deciding moment of diagnosis; knowing that the road ahead is strewn with difficulties and sacrifices, but full of resolve to do whatever it takes in an attempt to once again lead a perfectly healthy life. I knew that from now on, I would have to carefully read the labels on every food item that entered my home, and totally transform my cooking habits.

The ensuing months were a culinary adventure in the Katz household; with new recipes created on a weekly basis.  And slowly, word spread throughout the community.  Calls started coming from friends and family members who knew someone who knew someone who was gluten intolerant.  I accepted each phone call, offering advice and support, and of course, my recipes.  But I wanted to reach many more of the millions of Americans suffering from gluten sensitivities like celiac disease and gluten intolerance, and thus Katz Gluten Free was born.

-Mrs. Katz, founder of Katz Gluten Free

Laura Cirola's Story:

Fifteen years ago, my daughter was not thriving.

We did test after test.... while her situation became far worse...physically and emotionally.

A year later, we got the correct diagnosis. It came from a chiropractor who did muscle testing for allergins and intollerances. It was gluten. We quickly asked her Doctor for the
medical tests. Long story short...we became a gluten free household.

-Laura Cirola

Mike's Story:

Switching to gluten free takes a big commitment and lots of self
control!

I was diagnosed with celiac when I was 21 years old... a sophomore in
college, doing all the things 21 year-old college students do (ya know,
studying hard, eating healthy, and going to bed early). Cold beer in
the fridge...Pizza buffet on the corner...$1 McDonalds double
cheeseburgers in every convenient location. Immediately after
college, I started a business and worked 24/7. I couldn't resist the
temptations.

My life has slowed down a little, and as of January 1st, 2009, I have been
GLUTEN FREE! About a week into it, I could tell a difference. I was
already pretty knowledgeable about celiac due to my dad and sister,
and over 10 other family members being diagnosed (yes, it is partially
genetic).
I keep my motivation up every day, by 3 things:
1.) Remembering how I used to feel and not wanting to go back.
2.) Updating my blog & having family support me (support group).
3.) Wearing my GF wristband (my constant visual reminder).
I don’t have the traditional immediate stomach systems, so it has been
very hard for me to switch on a daily basis. 7 weeks and counting!

-Mike, Chief Guinea Pig Switch 2 Gluten Free

Kathy's Story:

In May of 2007, I woke up with pain in my joints from the tips of my fingers to my
shoulders, and from my knees down.  Every movement caused excruciating pain.  I
could not open a bottle of water, turn on the faucet or even pick up a can of green
beans! 

Doctor after doctor told me I probably had rhuematoid athritis and sent me
to the rhuematologist with a prescription.  I refused to accept that there was
nothing I could do and started researching. 

My friend, whose husband had celiac, sent me several articles suggesting a link between the two.  I was tested for allergies with a skin prick, and an initial blood test all revealed nothing. 

I found out about the Alcat test, www.alcat.com and the test revealed many food
sensitivies.  I eliminated them and after initially feeling HORRIBLE, I began to
improve. 

I finally found a functional medical doctor who listened and knew all
about leaky gut syndrome and gluten sensitivities.  I also discovered I had a bacterial overgrowth in my intestines.  I can now garden, paint, etc. with no pain and if I am very careful with my diet, I remain pain free. 

It's not easy, tho.  Gluten is in everything and eating out can be a nightmare.  But it is soooo worth it. 

We are now looking at my daughter who has a Vitamin D deficiency.  The article listed on this site today makes me feel even stronger that she, too, suffers from this illness.  But, perhaps, she won't have to go through the years of migraines, etc. that I have suffered with.  It's worth looking into and I spread the word to everyone I can!!

-Kathy

Erin's Story:

My road towards a Celiac diagnosis began with an annual physical. I was shocked when
my routine bloodwork showed that my liver enzymes were 5-6x higher than normal.
SCARY!

My primary care physican called me and ordered another round of
bloodwork...."maybe there was an error?" she said.

Round 2 came back and the liver enzyme levels were still high.  In addition, my iron, B-12 and calcium levels were very low. My PCP referred me to a Gastroenterologist. At this same time I discovered I was pregnant.

The pregnancy through a loop in the situation because I couldn't follow through with the recommended upper endoscopy. The pregnancy led to plan B; genetic testing from Enterolab. Those results showed 2 things: my body wasn't absorbing fat and I DID carry the gene for Celiac. Soon after Enterolab I miscarried (probably because my body wasn't absorbing enough nutrients?).

As emotional of a time it was, I was grateful to be able to proceed with the
endoscopy. Sure enough, the endoscopy confirmed Celiac. BINGO! 

I 've now been gluten free for almost a year and I'm so grateful. Living gluten free can be
challenging but, for me, it is worth the obstacles to be healthy.  I now share my
journey through a blog.

-Erin, Gluten Free With A Purpose

Tara E's Story:

All of my life, I have been sick.

Dr. after Dr. and only growing fatter and fatter. Everything from my bones to the tips of my hair would hurt.

I worked out a lot so I thought the pain was from that, but I couldn't get rid of the fat. My muscles grew bigger though. Doctor after doctor told me that I must be cheating, I must be eating cakes and cookies etc.

But in fact I wasn't.

It took my back hurting so bad that my chiropractor suggested gluten allergy (she has it so she saw the signs). We did a minor test of putting gluten food in my mouth and my back went completely out of alignment.

I have been gluten free completely since November. I notice that I am allergic to many foods besides gluten, almonds, apples, cinnamon, nightshade foods. But my psoriasis is getting better. With the weight, I struggle everyday. But it is getting better or I'd like to think.

-Tara E

Susan's Story:

Seven years of painful peripheral neuropathy, feet/legs and hands/arms, then it hit my stomach.

Surgeries, narcotics and many doctors.  A reflexologist suggested an elimination diet for wheat and voila...my stomach stopped hurting.

Within 4 months when I returned to the neurologist no more neuropathy in arms and hands.  He then remarked that I had been tested 5 times (all negative) for celiac disease.  At that point he said I had to go completely gluten free and after 7 months, no more neuropathy and I felt great.

I have been gluten free for 9 years.  Now I have learned that I have a vitamin D deficiency as well as a corn allergy.  Any one have similar problems?

-Susan McCabe, McCabe Design

 

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