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The Story of My Diagnosis

I had been throwing up for about 6 months on and off, and it seemed like no matter what I ate I would still get sick. I was transitioning from San Diego back out to Dallas where I was from, and was trying to get settled in. I had days where I felt perfectly fine, and on those days I worked out with my trainer at the gym for about 2 hours a day. I thought I was doing everything right at that point.

I remember waking up one morning and getting ready for an appointment at the women's clinic. That morning was peculiar, because my hands were very numb. I had been experiencing numbness and tingling in my hands and feet for a couple months now, but this was different. I don't mean numb like they had fallen asleep, this numbness was unlike anything I had experienced before. My hands were so numb that my thumbs were pressed against my four fingers and I could not pry them apart.

That day was four and a half years ago and still very vivid. I stood there in my kitchen trying to open a box of "healthy whole grain" cereal and could not get the box open due to my hands. I decided not to worry about it and drove myself to the doctor. My hands remained numb for about an hour after that. I mentioned to my doctor the numbness and she suggested I call my primary care doctor.

I had a checkup with my doctor that week so I waited until then. That appointment changed my life. I finally decided to mention to my doctor about my getting sick no matter what I seemed to eat. She asked me to do a blood test and those results explained everything. It's never a good thing when you are in your doctors office waiting for results and she rushes in, in panic mode. My doctor was running around like a mad women. She finally calmed down enough to explain my results. My calcium and potassium levels were half of what they should be which explains why my hands were so numb a couple days prior. I was taking vitamins everyday so how come I was not absorbing them? 

The next thing I know is I was being hooked up to an EKG machine and then rushed off into an ambulance. The next 2 weeks of my life were miserable to say the least. I was given potassium by an I.V. and that burned so bad that it brought me to tears quite often. They put me on a liquid diet and I was still getting sick from the chicken broth. The doctors were puzzled because I was not eating anything, yet I was still getting very sick. My second to last day at the hospital they decided to do a endoscopy, biopsy, and a colonoscopy all at the same time. I fortunately was completely under and could not feel a thing.

Two weeks after having that done I received a phone call which made all the pieces to the puzzle fit. A nurse called me to say that I had celiac disease. Those words plagued my head for the next couple of days. All I could think about was that I had a disease and how was that possible? The nurse sent me some information and briefly explained what I had. That was the day I heard the term gluten for the very first time which was in March of 2009. That very day I threw away everything in my pantry that contained gluten which meant everything.

I was basically starting over and throwing out everything I knew about food and starting fresh. I started reading up on celiac disease and gluten-free night and day. I was scheduled to see a nutritionist two weeks after being diagnosed and by that point I already knew more than she did about celiac disease. She seemed impressed by that.

Fast forward to now and the term gluten is widely used in my vocabulary. It's been over four years since I have eaten anything with gluten and am much healthier than I have been in my whole life overall. I make it a mission now to spread awareness about celiac disease teach those around me about it. People need to understand that it's much more than an allergy to gluten and wheat. Being diagnosed with celiac disease made me decide to become a nutritionist, which I am currently studying at school.

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


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7 Responses:

 
Brian

said this on
26 Sep 2013 7:27:08 PM PST
I know your feeling and can relate 100%. It took me almost 6 years to determine my issues and another year to realize, yes, it really is the gluten. Now I'm struggling to recover.

Keep the faith.

 
nina

said this on
08 Oct 2013 1:12:44 PM PST
I have been very healthy all of my life!
Last year I developed a terrible rash on my back, burning, itchy welts. I don't have health insurance, so my GP was the only person I could see, (specialists are expensive!) she was puzzled.
My stomach was bad it seemed like perpetual IBS which is what she said I had.
I have family in India and hadn't been there for 9 years so I went in January, saw a gastroenterologist, my blood tests were alarming, low ferritin levels, an extremely low RBC of course. He diagnosed me as severely anemic.
His suggestion was that I eliminate wheat first and then dairy on a trial basis, take iron in therapeutic doses and step up iron rich and bulky foods...salads, fruit etc.
My diet was excellent, food in India is non GM for the most part, South India eats more rice than wheat, and lentils and beans are essentials. It was not difficult to do.
I saw a lot of improvement, my rash was completely gone, (actually within 3 weeks of getting there last January) my digestion was improving...then I came back to the US!
I "slipped" into old patterns...Kellogg's Mini Wheats were always a favorite so I had a bowl every morning for about 3 days, all hell broke loose...rash, stomach ache, lethargy, depression, anxiety attacks (hadn't taken anti anxiety medication for 6 months).
A friend suggested going off all gluten so I did.
It has been 10 days, my one lapse was home made banana bread, to which I reacted within 30 minutes.
What is interesting is that the few wheat based foods I had in India did NOT have the intense reaction that I am getting here.
I read that GM wheat has three times the gluten that "natural" wheat has....
I am voting for labeling in Washington State!!
Thanks for the article, I know now I am nor crazy OR a hypochondriac.... now to get my family on my side without thinking I am a hypochondriac or crazy.

 
Carissa Bell

said this on
13 Oct 2013 5:46:24 AM PST
You are most welcome for the article, and thank you for yours. I have wondered for quite some time now if someone who had a sensitivity to wheat and ate wheat that wasn't over processed and would it bother them. Your results in that matter struck a chord in me. I recently submitted a letter to the Senate about GM and the labeling of it. I am still waiting on a response back! Yes, get your family on board!! You are not alone and are what I consider normal in my realm anyway.

 
Lynn

said this on
06 Nov 2013 1:32:38 PM PST
I just read that celiac is found a lot in European white people...
I also heard and have experienced that Native Americans are very prone to this disease. Both my friend who are 1/3 Native American have the disease as badly as you can get it. Both have been very ill until they finally were diagnosed. One has a sister that had horrible reaction for years, all the symptoms, and finally passed away. She was an older sibling and was never properly diagnosed and her sister only after she was diagnosed realized that was what her sister had. A theory I read about Native Americans is they have never been much wheat eaters... their diets are corn. Have you heard the Native American issue?

 
Jenae

said this on
31 Oct 2013 3:59:36 PM PST
OMG..I can't tell you how helpful this information is. I'm a 45 year old woman who was diagnosed over 7 years ago with essential thrombosythemia. This is when your body over produces platelets and you can either bleed to death or have a major blood clot. Since being diagnosed and having episodes of clotting in my stomach, esophageal varcies, bleeding etc. it has finally been under control with various medications. However, early on in my diagnoses, I noticed numbing in my hands and painful pricks in my feet. I was always told that perhaps my platelet count was high and that's why my hands and feet were in excruciating pain. It made sense, since I didn't know any better. However, recently, I've noticed multiple skin bumps mainly in torso area, butt, back and legs. In addition, the food pain, referred to as neuropathy has been worse. So much so that it wakes me out of my sleep and takes my breath away when it's happening, very debilitating. I've been begging and pleading for my doctor to help me find out what's going on, as something just doesn't seem right. Well, the more I read and the more blood that gets drawn, I find myself reading more about celiac disease. I've come to the conclusion that this puzzle just seems to fit so perfectly. I'm still awaiting my appointment withe the Neurologist and Endoronologists. However, I really think that celiac disease is it. I don't want to stop gluten just yet, as I don't want the doctor to say "oh, you don't have that" but I'm really thinking once I find out I'd like to go on a completely gluten free diet. In the meantime, I will continue to read as much as I can and pray that this will all get better, as my current livelihood is at stake here. Thanks so much for this information and I certainly will be back once I find out exactly what my diagnoses is.

 
Lynn

said this on
06 Nov 2013 1:25:54 PM PST
My closest girl friend has celiac and it is intense. She was not diagnosed for years, and was told so many things she had until finally celiac came to light. At first, like so many people with it, when diagnosed, she hoped that she will get better. But not, if anything, her reaction to any gluten after being gluten free for awhile, is even quicker and stronger. She is the 3rd person I have seen go through this. I see that none of them will get better as far as being able to ingest any gluten, and I think it should be called a handicap! Both she and another friend developed sojourns, as well as attacked their thyroids. I am writing because my best friend is still hesitant to ask for help and I think still believes that it could be she has it worse than she should. I hope she will get on here and talk to people. I know she is terrified to eat out as she has been made sick eating supposedly GF foods.... the tiniest bit can cause her to be ill. Even eating something that was processed near gluten.
She wants to be able to travel, she is getting ready to go, and wants to know how other people travel, especially abroad, and stay gluten free? Anybody out there have idea? I have heard that Europe is much better and has been for longer, being truly gluten free? Thank you for any help!

 
Diane

said this on
03 Dec 2013 5:16:54 AM PST
Hi - I am so relieved to find this site! I was just at a new "functional medicine" doctor yesterday and she believes that this is a very high probability for me! I have been sick for approximately 6 years and have been in and out of doctors' offices desperately trying to find answers. Prior to this I was a highly active, sports playing, soccer mom that was involved in everything. At 43 I am not willing to accept that this is going to be how I feel for the rest of my life so here I am pouring over any morsel of information that I can find. Thank you so much for posting your story! It really helps to hear other peoples stories. Currently I eat just about everything out of a prepackaged box! I guess that came from constantly being on the go plus I am a sugarholic. This is going to take some Major food intake changes but if it makes me feel better I'm willing to try anything!!!!




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