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May 2016—My 7th Celiac Awareness Month

I was diagnosed with celiac disease in 2010, so this May will be my 7th celiac awareness month.

In May 2010 I was totally overwhelmed with my celiac diagnosis and still trying to get the hang of the gluten free diet, i.e. trying out different types of GF bread, pasta, etc., at the point that I felt I needed to be able to replace every gluten-containing food that I liked to eat with a GF version, and figuring out how to manage a shared GF/non-GF kitchen. I was very scared to eat outside of the home, by the thought of having to be GF while traveling, etc.  My main focus was learning all about which foods and ingredients I needed to avoid and trying to explain my new diagnosis to my family and friends. I had no clue that celiac awareness month even existed that year.

In May 2011 I was recovering and healing from a miscarriage that I had experienced the previous month. It happened about a day or two after I had an awful “glutening” episode  and I kept blaming myself for the miscarriage happening, that it was my fault for not being careful enough with my diet. Looking back, the timing may very well have been just a huge coincidence, but at that point in time I did not feel that way and really beat myself up.

In May 2012 I was about two months postpartum from baby #4 and pretty sleep deprived, so I do not remember much about this month other than that I was not only GF but dairy free (my oldest had a severe cow’s milk protein allergy as an infant, and I did not want to go through the stress of that again).  I am pretty sure that I did not celebrate celiac disease awareness and I’m not even sure if I knew about it as I was really not following celiac web pages or active in the celiac community other than checking out posts on celiac.com and a few other online forums.

In May 2013 I was all over celiac awareness as I had developed celiac-related neurologic symptoms (a neuropathy and episodic brain fog) in 2012. Prior to developing these symptoms I had no knowledge of the link between celiac disease and neurologic symptoms. This experience prompted me to start to really delve into all of the celiac disease research I could get my hands on and learn as much as I could about this disease–which led me to start this page in late 2012. I figured that if I was going to spend such a great amount of time learning about celiac disease that I best share what I learn with others.

In May 2014 I was at the point where I felt totally comfortable navigating dining out, traveling, etc while being GF and major glutenings had become few and far between. I felt “normal” again and my gluten-induced neurologic symptoms had totally resolved. It was also just around this time that my youngest daughter had symptoms that were concerning for possible celiac disease and that we had to start a gluten challenge (she had a labs and a biopsy in June 2014 and her tests were all negative). This month also stands out in my mind because it seemed like everyone I knew had friends, family members, etc who were being diagnosed with celiac and needed help and guidance. I had integrated helping others with celiac disease into my life.

In May 2015 following the GF diet and teaching others about celiac disease were second nature, and I had also built an amazing celiac support system through having this page.  However, right around this time I became very overwhelmed trying to balance keeping this page up with all other aspects of my life so it had to fall  to the bottom of my priority list. I actually considered deleting this entire blog many times, because I had neglected it so much, but then couldn’t bring myself to do so since I had dedicated so much time and energy to it since its inception.

In May 2016 I hope to be able to engage more with my readers and the rest of the celiac community and to read, write, and post more often, to really get back into the swing of things.  I have a new website in development that should be up and running sometime this summer too. I also have a lot of ideas for the future of this page, some of which I would love to accomplish by my 8th celiac awareness month in 2017.

I would like to thank all of you who have been with me and supported me on my celiac disease journey—there are too many of you to name, but if you read this I hope that you know who you are and that I appreciate and love you (even if we’ve never actually met face to face).

Happy Celiac Awareness Month 2016!

22 thoughts on “May 2016—My 7th Celiac Awareness Month

  1. Carolyn Gunning

    Your blog had been amazingly helpful to me. I’m a mother of a child diagnosed at age 15 with celiac disease. In the first year of diagnosis your blog was the only way I could figure out that sugar caused tremendous pain about 12 to 24 hours after ingesting. Now that she has healed a bit she can have sugar but still tries to keep to a minimum.

    1. Jess Post author

      Hi Carolyn,
      Thank you so much. I am happy to learn that your daughter is in the healing stage–it can take a while for some of us.
      I really appreciate your support of my page.
      Jess

  2. shannon myers

    I am so happy to read that you are in a good place right now. You were one of the first people that I found after my diagnosis and you helped me to become more confident that I would be able to manage this new diagnosis three years ago. I think being in the medical profession and feeling as if I was failed by some of my colleagues was a tough pill to swallow in the beginning. You were the beacon that I needed to know that I could get through this so thank you!! This is my 3rd Celiac Awareness and I am so thankful to feel healthy and be in a better place.

    1. Jess Post author

      Hi Shannon!!
      I consider you to be one of my celiac sisters who I just haven’t met in person yet :)
      I would still love to be able to team up to teach medical, NP, and PA students–maybe someday…
      Jess

  3. Amy

    While research takes time, so does blogging and sharing. It was roughly two years ago that I went thought my discovery of gluten sensitivity and I found your page. I am glad I did because you helped me assess what was happening. Finding your blog was a good day for me. I am truly glad you did not delete it. Progress is slow some times….and that is okay. Because you shared and cared your touched my life when I was searching for information. ❤️

    1. Jess Post author

      Hi Amy,
      I am happy that I was able to help you sort through everything.
      It’s not uncommon for me to help guide people via email exchanges, FB messages, etc and then I never hear from them again…so I really appreciate those, like you, who stick around and let me know how things are going.
      Thank you.
      Jess

  4. Dee

    I just past my 4th anniversary. I am still recovering, I think. I am okay, though, and that is very fine to say after my year of 2010!

  5. Susan

    I have learned so much from your website and story. I was diagnosed in 2012, I also have a very low histimine tolerance, the symptoms for both can be simular at times. I’m also a marathon runner, as you know, this makes the nutritional aspect of distance running a bit tricky. However, now that I have mastered gluten free food, my running has been even more successful, no gut aches and I can eat more !
    Do know I read every word of your newsletters, I save some and go back to other blogs that I know had a piece of information I need to be reminded of.
    Thank you so much for taking the time to share your details, hints and ideas with your readers, all invaluable. Of course, please do so as time allows, you juggle a lot :)

    1. Jess Post author

      HI Susan,
      Thank you for your kind words and sharing your experience as a distance runner with celiac.
      I was hoping to sign up for some longer races later this year, but we are moving again and the date is yet to be determined, so I am holding off on scheduling anything.
      I hope you continue to feel well.
      Jess

  6. Vik

    Hi Jess, it is awesome to hear from you! Oh maaan, moving again, are you staying in town? Yay that you are still racing along. This is my 3rd May of Celiac-ing. The first year I was new and pretty much still in the spazzing-out phase.These next two years, it still varies, ups and downs, still trying to figure out the digestive issues. The possibilities are so endless. My doc suggested the low FODMAP diet. Gave a very brief list of foods and didn’t say how to go about it, as far as the elimination phase, so once again I am searching online trying to figure it out, and the vegan aspect is an added wrinkle. I apparently am doing a good GF job though, since my repeat endoscopy after the 2nd year, showed fully recovered villi.
    All the online researching led me to your blog years ago. I’m glad you decided to keep it going! The fact that you are a doc and a celiac and a good researcher and explainer are so valuable. I really really appreciate you! Thank you for everything you do, I’m glad we are online friends and celiac sistahs!

    1. Jess Post author

      Hi Vik!!!
      I miss hearing from you–that is such great news that your villi have fully recovered.
      We are moving to Cleveland (my hometown) in July to be near my family as we raise our family. I’ll be working for the Cleveland Clinic..hoping it’s the last time we ever move until retirement :)
      Hope you’ve been having a good year so far. Thanks for stopping my and saying hello!
      Jess

  7. Linda

    Treat yourself as kindly as you would treat others in the same situation. You have a busy life and you’re making your way through a tough journey. We’re all there. Keep up the good work!!!
    Linda

  8. Matthew

    Don’t ever doubt your ability to inspire. I just hit my one year anniversary of my Celiac diagnosis and your blog was weekly reading for me during some dark times. I recall in one blog you mentioned how you would pack your running shoes and get runs in whenever you could, not caring about being sweaty and such. That resonated with me and I begin walking than running at lunch every day at work. This has been pivotal in my recovery over the last year and given me a new self image that I needed after losing so many of my comfort zones. Just wanted to say thank you for your hard work on the site….it really does make a difference.

    1. Jess Post author

      Hi Matthew,

      Thank you so much for your kind words. I just read what you wrote and realize that I need to take my own advice–I’ve been really bad about fitting in the time to run lately and just had to sign up for a 10K and half marathon to help me to get back into it.
      So, thank you for inspiring me in return :) Your comment came at the most perfect time.

      Jess

  9. Felicia

    I am so excited to have found your site. I have been diagnosed with celiac since 2009. As many patients with celiac, I suffered for years with the illness before the diagnosis. I was brought to your site by a search for celiac disease and mcas. I would love to read more about your journey in lowering your histamine levels and improving your health. I am about to start a 30 day trial to determine if this treatment would alleviate some of my issues with inflammation. Your theory on why celiacs could be vulnerable to develop MCAS or even HIT seems to fit well with our emerging understanding of the relationship of the gut/immune system and the microbiome. I have read so many online comments from celiac patients who felt that they had eliminated gluten and other gluten cross-reactives and they still felt that they had hit a plateau in healing. MCAS could be an underlying issue for us.

    1. Jess Post author

      Hi Felicia,

      I was very excited about writing about MCAS after I was diagnosed with it a few years back, and have met and interacted with a TON of people who seem to have both MCAS and celiac or MCAS and non-celiac gluten sensitivity (so I still believe that these diseases are connected). But, I got overwhelmed with all of the questions, emails, etc that I started to receive about mast cell diseases, because is really not my area of expertise, and I did not want to give out any “advice” per se because of that. I hope what I am trying to say makes sense.

      I’ve gotten the impression that the treatment approach to MCAS seems to be best individualized, and that what works for one person may not work for another. I attribute my improvement to gut healing after now being strictly GF for several years, my probiotic which has helped to repopulate my GI tract with beneficial bacteria, avoiding sulfites and high histamine foods to the best of my ability, avoiding NSAIDs, and focusing a lot on stress reduction via yoga, running, meditation, etc. I still have flare ups but my symptoms are much milder than they were back when I was diagnosed.

      Thanks for writing Felicia. I wish you well.

      Jess

    1. Jess Post author

      Just replied back Eugene–please let me know if you didn’t get it and I’ll resend. Thanks for writing.

  10. Deana S. Higgs

    I am a 56 year old female who has been recently diagnosed with Celiac Disease within the past month. I have headaches daily usually after lunch and upon waking my hands and fingers are numb and tingling. I work in an office where I type on a computer daily.

    I use to love food, now my choices are so limited that eating is a chore instead of a pleasure. The bread is bad and so are the crackers, I end up eating a piece of turkey rolled up in a slice of cheese.

    I will continue to follow your blog, I need as much support as possible.

  11. Wendy Mulcahy

    We are in the seventh month of my 20-year-old being gluten-free since her positive biopsy for CD in March 2016. I have two concerns – she has gained an extraordinary amount of weight whilst eating a very healthy diet recommended by a registered dietician. In January before we knew she was celiac, she weighed 55 kg. Now, in November, she weighs 66 kg! A gain of 11 kg in 11 months whilst eating 1300-1400 calories! When will this weight gain stop? My second concern is her flushed face. Since being gluten-free, she seems to have a permanent flushed face. Could this have anything to do with celiac disease or do you think it’s unrelated? We have had numerous tests done to rule out Cushing’s disease and carcinoid syndrome. All tests have come back negative.

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