My Gluten Free Journey

I decided to share my gluten free journey for several reasons. First, I am always asked why I eat this way. Second, people generally think I am doing this because it is a “fad diet” which is annoying because there is a lack of understanding as to how much damage to your body can be done due consuming gluten when you are intolerant. Third, to show how you must be your own advocate for your health despite what doctors may tell you. It’s YOUR BODY, and you know what is best for YOUR BODY.

To begin, I have been on a gluten free diet which evolved into grain free, on and off since I was 23 (I am now 30). It was on and off because it is very hard to go most of my life eating something that I suddenly wasn’t eating. I constantly battled myself on whether gluten was really the cause of what has made me sick most of my life. Also, I had no doctor support that further confused me. But every time I would return to being gluten free my many symptoms would dissipate.

My symptoms I experienced while eating gluten and dissipated after removing gluten were the following:

          Chronic sinus infections

          What I call yuck mouth… white coated tongue

          Fibromyalgia: arthritis in hands and knees

          Fatigue..Extreme!

          Mental fog and cloudiness

          Digestive discomfort and bloat – going between diarrhea and constipation

          Hives on knuckles of hands and feet

          Pimples on face

          Depression

          Bones in my fingers started turning

          Constant thirst… waking up in the middle of the night to chug water

          Yeast infections

          Thyroid swelling/hypothyroid

So as you can see, my decision to be gluten free was because I was beyond sick. It was confusing though because I would wonder, is this truly the cause of all my issues? But I would always feel so much better eating gluten free/grain free, so I tried my best to reconcile it with myself and stick to it. Plus, I have the support of my family because my mom, sisters and niece are also gluten free.

No rice for me

Once I was gluten free, I also realized there was an issue with rice. Gluten free people often eat rice in place of wheat, but I was noticing digestive discomfort when I ate rice. My stomach was not breaking it down and a lot of times I would end up vomiting from rice. In addition, eating anything with even rice starch in it caused me to have dermatitis on my chin- or little pimples. My mom put this part together because she had the same issue (my sister too). For years, I thought the pimples on my chip were hormonal pimples. Nope. It was from rice. I stopped eating rice and stopped having acne.

No oats either

I often ate oatmeal and used oat flour until this past year. I noticed oats were causing inflammation in my hand. I was noticing arthritis in my right pointer finger every time I ate oats. Being super in-tune with my body and what I was consuming, I eventually put together the oats and the arthritis in my hand and cut them out as well. The arthritis in my hand has gone away with the removal of oats from my diet.

Doctors

In the beginning of my gluten free days, on a visit to my general practitioner, I told him I was sure that gluten had been the cause of all my symptoms because I had been feeling so much better after being gluten free for several months. He said, “That is not possible! You are going to become very ill if you continue on this diet!” Then he handed me a pamphlet on how to eat a Mediterranean Diet, and told me this is how I should be eating. Shut down.

But I knew better. I was listening to my body very carefully. Each time I did a gluten challenge, where I would eat gluten, I would almost immediately feel sick, convincing me this was definitely an issue. But seeing everyone else around me eating gluten and appearing to be fine would make me feel bad and isolated. Especially when I would go to social gatherings where the topic of conversation would be about my diet. I hated feeling judged because I did not have a doctor’s diagnosis. So, I often would keep it simple and say, “gluten makes my thyroid swell”, which is true. Occasionally I would throw in the towel and start eating gluten regularly, only to have all my symptoms return, and ultimately leading me back to eating gluten free.

Finally, after experiencing an anaphylactic reaction to hair dye, I made my first trip to the allergist. I was tested for everything under the sun. I had a prick test and a patch test. All the foods were negative except for some environmental allergies (Mold, Dogs, Cats, Dust, Pollen) but I did show up positive for multiple allergies on the patch test including an allergy to latex and black rubber mix which explained my allergy to latex associated foods (bananas, avocado, mango and shellfish).

I told the doctor I was confused about the gluten issue I was having and was exhausted on going to doctors. Her input was very helpful. She said food testing is not an exact science and to avoid anything that I felt did not agree with me. She said I was likely having an immune reaction which would not show up with a prick test that tests for an IGG reaction. She said to follow my instincts and that I do not need a doctor to tell me whether or not to eat something. Finally. Someone was listening and giving me positive feedback. It made me feel good to hear the allergist tell me I did not need a doctor’s approval or diagnosis to eat a grain-free diet.

(For a true Celiac or Gluten Intolerant diagnosis, I would have needed to go to a GI doctor but I was not into going to another doctor so never pursued it.)

Grain Free Baby

Once my daughter, Ava, began having issues with the introduction of cereal – I knew this was a real problem. Every time she consumed any sort of grain (rice, barley, wheat, oat…and even quinoa) her body would break out in a hives the size of a fifty-cent piece and a bumpy rash over her torso, arm, legs, face and hands. The rash would last for several days. Ava had a blood test for Celiac Disease but it came up negative because she has never consumed enough gluten in her life to yield a positive. After allergy testing and a trip to a GI – no confirmed allergies and no answers except to continue her on a grain-free diet- I felt helpless, annoyed and confused. The GI basically said he did not know how to diagnose her because she was having an issue with all grains. He also said there was no health risks of being on a grain free diet, so long as she was eating greens to get enough folic acid since gluten products are usually fortified with it. Luckily Ava loves veggies!

The Test

After years of feeling unsure about whether I had a gluten intolerance, I became sure once Ava was having issues with grains too. But I wanted some sort of test to solidify it for me.  So, I decided to shell out the hundreds of dollars for Ava and me to be tested through EnteroLab – a lab where you can choose from multiple tests to check for food intolerances (check out EnteroLab here). For myself, I decided on a stool test for all the of major food allergies/intolerances (gluten, oat, fish, soy, corn, etc.) along with a genetic test to see if I had any Celiac or Gluten Intolerance genes. I also ordered the genetic test for Ava because it would provide me with whether she had genes to support my suspicions.

The tests were simple to do. I received them fairly quickly in the mail. They had all the instructions laid out as to how to complete the tests and what day of the week to mail them back. I gathered the samples, mailed them back and nervously awaited the results. The results are posted on their website under your login. An e-mail lets you know when the results become available.

The Results

When I finally received the email alerting me of my results, I logged on and was shocked by the results. Ava and me both have 2 genes for gluten intolerance (one from each parent). So, both of us have a genetic disposition to be gluten intolerant. In addition, my stool test showed my immune reaction to gluten to be very high indicating I should be avoiding gluten. So, there it was. Finally. In black and white. Proof Ava and I are most definitely gluten intolerant. Keeping my daughter on a grain free diet was the best thing I could have done! 

So that is my gluten intolerance story. Years of being sick and searching for answers. Figuring out what the issue was and not wanting to believe it. But eventually it was all too obvious. And now I have the proof I need to stay on track as gluten free (grain free – because we do not eat oats or rice either) so Ava and me can be our best and healthiest!

Are you gluten free? I would love to hear your gluten free stories!

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