The Test Results are Here…

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Well, after months of doctor’s appointments, blood draws, tests and procedures – I finally have some official answers. A couple of weeks ago, my gastrointestinal doctor called me with the results of my blood test and endoscopy after consuming gluten for weeks to prep for the tests. My last investigative tests were done in October 2013 and everything looked great. But, I had been strictly gluten-free for almost 2 years. The only way to get accurate results is to consume gluten again. Let this be a valuable lesson to you that BEFORE you get any testing done, you continue to consume gluten and your normal diet. I can’t emphasize this enough. I write about it a lot on my blog and in social media. To get accurate results, don’t change anything before seeking medical help.

So…

After years of thinking I have celiac disease, it turns out that I actually have non-celiac gluten sensitivity and Barrett’s Esophagus. There is a great article by Jane Anderson on about.com regarding this and it’s correlation to celiac disease and non celiac gluten sensitivity.   I mentioned in a previous post that I was on a mission for an accurate diagnosis because of education from the International Celiac Disease Symposium. I didn’t believe the tests I had done were accurate or enough to confirm a celiac diagnosis. Obviously, I am frustrated and disappointed that yet again I went years without an accurate diagnosis.

The symptoms of non-celiac gluten sensitivity can overlap with celiac disease, but they also have different ones as well. According to the National Foundation for Celiac Awareness, “Non-celiac gluten sensitivity shares many symptoms with celiac disease. However, according to a collaborative report published by Sapone et al. (2012),  individuals with non-celiac gluten sensitivity have a prevalence of extraintestinal or non-GI symptoms, such as headache, “foggy mind,” joint pain, and numbness in the legs, arms or fingers. Symptoms typically appear hours or days after gluten has been ingested, a response typical for innate immune conditions like non-celiac gluten sensitivity.”

I specifically struggle with the joint pain, inflammation, numbness and head aches, which looking back makes total sense. Even after consuming gluten again, I didn’t get the major stomach aches that I used to get before going gluten free. I was very bloated but I didn’t get sick to my stomach and that surprised me. It also reinforced my decision to go forward with the testing to get accurate answers.

So, what about the Pretty Little Celiac? Well, the reason I started this blog was to not only share my stories (the good and the ugly) but I wanted to advocate for this disease. This experience for me just reiterates how complicated getting a true diagnosis can be and the emotional and financial toll it takes on a person going through all of this. All of these experiences taught me so much about living gluten-free and celiac disease. Meeting all of you virtually through the internet and social media, along with all of the people I met at Expo’s taught me so much. Just because I don’t have celiac disease, doesn’t mean I will stop advocating for all of you and the gluten-free lifestyle. I am not going back to eating gluten because it really does make me sick and makes me feel terrible.

My experiences going forward will be more based on gluten-free living and the challenges and life lessons associate with that. I want to focus a lot on the challenges associated with gluten-free living but also the other auto-immune diseases that I struggle with such as Endometriosis and Hashimoto’s Hypothyroidism along with GERD/Barrett’s Esophagus. Obviously, with a name like Pretty Little Celiac, I would never want to deceive anyone to think that I have something when I don’t. I am going to spend the next few days or week brainstorming options, but if you have any ideas – let me know.

I’m sharing this information with you because I want to have full disclosure. I want you to know despite thinking I had all the answers 2.5 years ago, things change. New information is discovered and that’s okay. At first, I didn’t want to let all of you down but then I realized this is just part of the journey, part of the discovery and frustration that we all go through trying to find answers.

Have you had a similar story? I would love to hear about it. Email me or post it in the comments below for others to see we aren’t alone.

Thanks for being so loyal and such awesome followers.

Rebecca

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Comments

  1. Sue Rice says:

    Thank you for sharing your journey and this next chapter you are about to begin. You continue to inspire to a life of wellness, no matter what your health challenges are labeled.
    I really appreciate, as do many others I would think, how much information you have made accessible and how many people you touched along the way.
    I hope you will keep us informed of your new endeavours. I too suffered from Endo for many, many years until surgery. Best wishes and I look forward to cheering you onward on your new path.
    Sue

    • Rebecca Black says:

      Sue, Thank you so much for this heartfelt comment. I appreciate it more than you can imagine! I’m going to keep almost all of the content on this site and probably transfer it over to my new blog http://www.RebeccaRefined.com – that way people can still find a lot of the information that is still relevant! I think the comments from thousands of people are just as important as my blog posts for people to be able to see they aren’t alone. That was the whole point of this blog was to let people know they aren’t alone in this journey!
      Glad to know you will stick around :)
      Rebecca

  2. Erica Markee says:

    Hi! Thank you for sharing this story. Im in the process of finding a diagnosis for myself. This is all new to me and over the last 2 months what I’ve always thought of as just “a fast metabolism/digestive system” come to find out I have osteopenia and all my celic panel blood tests came back as strong positives.. I’m waiting for my biopsy, my youngest son is going through all of this as well.. Can you let me know what your blood tests were like? Did you have the antibodies on the TtG tests as well as positive gluten allergy tests? Thanks for any help :)

  3. I’ve been following you for a while (about 2 years now) and am part of the support group. I too am non-celiac, so they tell me. I get much of what you described: immediate runs followed by brain fog, possible migraine, fatigue. I’m not even sure what else anymore! I’m not willing to eat gluten because of how terrible I feel when I get glutened, but I may still do the gene test to be sure. Auto-immune diseases seem to run in the family so it’s hard to tell if there’s something else wrong with me or if that’s it. Clearly there’s more work to be done! I’m just grateful to have insurance again so I can continue the quest for answers.
    In my own trials, I think I may also be Corn Sensitive. I’m testing it now. I instinctively was avoiding most bread, pasta, oats and processed foods. So far, I think Corn gives me brain fog, fatigue even with 12-hours sleep, bloating, inflammation, joint swelling / achiness and weird skin breakouts that are not like normal pimples (for someone over 40?). Blemishes appear about 2-4 days afterward and have been on my neck, cheeks and earlobes (??). Most of these symptoms actually seem to have a 24-36 hour delay which is why it’s been so hard to notice and associate with corn. Perhaps it’s why 2 days after a party with tortilla chips and salsa or guacamole, I’m zonked and can barely get out of bed!
    Corn is such a special ingredient! It’s in everything — candy, soda, GF chips, GF breads & baked goods, and practically every medication has corn starch! It explains why I was fine with my homemade brownies with corn-free flour, but not after a store-bought cupcake. I’ll have to find my threshold since I need my daily meds!
    So, Rebecca, just know you’re not the only one on a health quest! And part of the quest is hoping the doctor, PA or NP will listen to us and our crazy-sounding theories!

  4. It must be a bit of a relief to know that you can move forward knowing that you do not have celiac disease. I started following your blog about a year ago when I suspected that gluten was the root of my issues: brain fog, lethargy, numbness in my arms and feet, headaches, and such. Ultimately, I was diagnosed with Hashimoto’s which shocked me. Since then, I try to eliminate as much gluten as I can from my diet, and it seems to be working. Stress is the biggest trigger for me now. I will continue to follow you, and I wish you the best of luck with whatever the future may bring.

  5. Wow, what a touching story. I’m so glad that you were able to find some answers. My story is almost the opposite of yours. I presented as a celiac with atypical symptoms. Now, I had weight loss and stomach pains, but they were mild in comparison to my other problems. My GI looked for everything but celiac. (I claimed wheat bagels were the only food that made me feel better). During my diagnosis process, I gained such a deep respect for my GI because so many diseases/conditions have similar symptoms when you’re looking into the digestive tract (and even other immune problems/organ systems too!). Once I went gluten free (post Celiac diagnosis), my acid reflux magically disappeared within days. I hope that the Barrett’s Esophagus diagnosis helps solve/explain some of your other conditions, and I look forward to following your blog to learn more about your journey.

    After years of thinking I have celiac disease, it turns out that I actually have non-celiac gluten sensitivity and Barrett’s Esophagus.

  6. How long did you eat gluten before getting the blood test panel done to test for celiac? I am working with my new thyroid dr taking Amour and my chiopractor (for fibromaylgia) to feel better but if things don’t improve want to test for food sensitivities. The test is expensive so I want to do it correctly but dread the side effects of adding gluten back into my diet.

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