I’ve been wanting to write this post for some time now, but I wanted to get my health in order so I could tell my story.
I am now 100% Gluten Free and have been for the past 7 months, and boy what a journey it has been!
My story actually starts almost 20 years ago when I was living on my own in DC. I started breaking out in rashes all over the top of my hands, and a little on my forearms. When the rash progressed to my face, I went to the Doctor. He gave me the whole 20 questions thing that they do about using new detergents, perfumes, etc. and then told me I was allergic to vitamin E which he surmised I must have overdosed on taking too many supplements. This rash was itchy and drove me nuts, little tiny clear bumps that when scratched, broke open, and itched more.
Years passed, I still got the rash and stayed away from anything that had vitamin E. I then started complaining to my future husband at the time, that I felt sick every time I ate pasta, like I had a mild flu. I still continued to eat pasta, but always got sick. At this point I had never even heard of gluten.
A few more years go by and I start avoiding pasta because of the severity of sickness I felt after eating it, then on Halloween night 2011, I threw caution to the wind and ate a bowl of pasta, a big bowl! I was so sick the next day and then for the next week felt like I would just die. It was horrible, really horrible. I haven’t touched pasta since.
I ate gluten in other things, but never got the same reaction, breads would just make me feel like I had allergies, and I always had that weird rash. I also had all these other symptoms related to gluten, but at the time just thought it was me getting older. I would soon find out that wasn’t the case.
Then in July of 2012, after a night of gluten while out with the family, I had the scariest thing in my life happen, I was sitting at my desk and started to feel weird, I looked up at my son and started to feel like the blood was being drained from my body, I screamed for my husband and told him to call 911 that I was dying……this is how badly I felt. Talk about scared out of your mind!
When I went to the ER, they had no clue what was wrong with me, since I didn’t think this was gluten related and was still kind of ignoring the whole gluten intolerance thing. I was sent to a regular Doctor, who after giving him all my symptoms, simply wanted to give me a pill for depression – SERIOUSLY!
I have Celiac, I also had the “Celiac Rash” also known as Dermatitis herpetiformis. The BIGGEST problem with being tested for Celiac, is that when most people get tested, they have already stopped eating gluten because of how sick it makes them feel, and this test measures certain autoantibodies of gluten in your body, so in order to get a correct reading, you need to continue to eat gluten, which I was not.
My Doctor tested me for everything, the Celiac test was only at my suggestion and promptly scoffed at. They didn’t believe me in the least bit and just assumed that it was diverticulitis, and or irritable bowel syndrome C. This STILL didn’t explain why I got sick after eating gluten!
Long story short, trust your instincts and your body, don’t let anyone tell you that something isn’t wrong when you know it is.
The following were some of the symptoms I had, and that have been greatly diminished from eating a gluten-free diet, and supplementing my diet with vitamins.
- Abdominal cramps, gas and bloating – I looked pregnant!
- Anxiety
- Bone and joint pain – Unbearable!
- Borborygmi (stomach rumbling) – This was CRAZY Loud and embarrassing
- Canker sores
- Dental enamel deficiencies and irregularities – Gums would bleed like crazy
- Easy bruising
- Extreme Fatigue
- Fluid retention
- Fuzzy Brain
- Gastrointestinal symptoms
- Migraines
- Muscle cramping
- Muscle weakness – This was super scary, both arms would become heavy and weak.
- Nausea
- Rash – Dermatitis herpetiformis
- Swelling
- Tingling in hands and feet
- Vitamin B12 deficiency
- Vitamin D deficiency – SEVERE
Have you had any of these symptoms? These are just the symptoms I experienced but the scary thing is, there are at least 150 more associated with Gluten Intolerance and Celiac Disease.
If you suspect that you have a Gluten Intolerance, please talk to your Doctor, and if they don’t listen, find another one who will!
I will be writing about my experience with being Gluten Free and reviewing products that I have tried and love. I hope you join me and reach out if you have any questions about my story.
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Show CommentsWow. Thank you for sharing your story! My sister has many of the symptoms that you have described. They have her on so many different medications and she is still sick and miserable. I am going to print your story for her to read. She is at her wits end. She never feels good. She has mentioned this to her Doctor but it was brushed off. I cannot wait to hear about your review’s on the gluten free products. I want to get them for her to see if she feels any better. How long did it take you to start feeling better after changing to gluten free?
Jill, my intention in writing this was to possibly help people going through the same thing as I did and am. It took some time, and it was slow going, so if she does decide to cut out gluten, tell her to not give up and to keep at it. Also, make sure she pushes the issue with the doctor, they like to ignore what we already know. Good luck to your sister and please let me know what happens!
Sounds like a scary journey. Thanks so much for sharing such in-depth information about gluten.
It’s is really scary how quickly Doctor’s just want to prescribe a pill to whatever ails you. It really makes me mad that they don’t seem to want to listent o what we know is going on with our own bodies. I am finding it easier to deal with being GF, now if I can just get the weight off I’ve gained, I’ll be golden 🙂
Hello Di, I was just wondering if your canker sores stopped too when you cut out the gluten???
Hi Jenna, Yes they did. If I accidentally eat gluten, they are one of the first things to pop up. The other is the rash.
Thanks for answering and thanks for all the info. I have a lot of these same symptoms, one being canker sores since I’m very young. Recently I went to the doctor for the extreme fatigue and easy bruising. Found out about my vitamin D deficiency. When I asked why, I got “Well a lot of the people in our area of the country have vitamin D deficiency.” Did not like that answer at all. When I dabbled with Atkins diet, I found I wasn’t getting bloated and gassy. Never put all those pieces together. With the help of your story I did and I’m glad knowing that it’s not just “all in my head.”
No it is definitely “Not all in your head” – it makes me so mad that doctor’s just want to give a magic pill in hopes that it will cure everything. I’m sorry, but we know our own bodies and when it’s not working right. I’m glad my story helped, let me know if you get a proper diagnosis and how you are doing.