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Reflections on five years of living with celiac disease

It’s been just about 5 years since I was diagnosed with celiac disease—a disease that I learned about during my second year of medical school and never in a million years imagined I would eventually be diagnosed with.

As I reflect on my gluten free journey, I realize how much I have learned, adapted, and done my best to live with this life-changing diagnosis. When I was diagnosed in 2010 there were many things I did not know or anticipate:

…I had no idea that I’d never again live a single day of my life without having to really think about and plan out ahead of time what and where I was going to eat. I had always taken food for granted and eaten whatever I wanted wherever I wanted.

…I had no idea that celiac disease could cause neurological symptoms and that I’d develop a celiac-induced peripheral neuropathy (nerve inflammation and damage) after 2 years on the gluten-free diet.

…I had no idea how poorly understood this disease is both within the medical community and in the general American public.

…I had no idea that my entire family and household would eventually also have to go gluten-free because I ended up being so sensitive to gluten cross-contamination. And I had no idea how selflessly by gluten-loving husband would give up gluten to help me heal.

…I had no idea that almost every single social event includes food in some way, shape, or form (or at least I had never really thought about or focused on this).

…I had no idea that all of my joint pains/”atypical” lupus symptoms/possible fibromyalgia/undifferentiated autoimmune symptoms would magically disappear within weeks of going gluten-free.

…I had no idea that a horrible “glutening” episode in 2011 would lead me to miscarry at 11 weeks gestation, but that I would then go on to deliver a healthy, gluten-free baby one year later.

…I had no idea that I would ever feel well enough to be able to train for and run 3 marathons.

…I had no idea how supportive my family and friends would be of my new lifestyle, and how many times people would go out of their way to ensure that I’d be able to safely eat.

…I had no idea how resistant my family members would be to getting screened for celiac, as well as how many times I’d hear the words, “I’d rather die than have to stop eating gluten.”

…I had no idea that I would eventually start a blog, Facebook page, Twitter account, etc. about celiac disease (the Twitter account still surprises me and I don’t totally understand how to optimize using it). And that I would meet so many amazing fellow gluten-free folks as a result of my online efforts and social networking. You have all helped me more than you’ll ever know.

Thanks for reading and please feel free to share your thoughts, feelings, experiences, and surprises with celiac disease in the comments section. Also, I am working on an updated mast cell activation syndrome (MCAS) post that I hope to publish within the next few weeks.

43 thoughts on “Reflections on five years of living with celiac disease

    1. Jess Post author

      Thank you so much Erica. I actually came up with the post as I was running the most uninspiring laps around an indoor track last week when it was negative 10 degrees outside. I realized that it’s been a slow journey, but that 5 years ago I’d barely be able to make it 2-3 laps around the same track due to joint pains, crippling fatigue, anemia, etc. Sharing this since I know you like to run too :)
      I hope you are feeling well, and that if you’re also in a cold climate that you are surviving the winter!
      Jess

  1. christine

    thank you for sharing your journey…..you have no idea how much you really help those of us out here who also have celiac disease and find it comforting to know others who experience the same things….

    1. Jess Post author

      You’re welcome Christine. The help is definitely mutual as I’ve found it so therapeutic to be able to interact with other celiac and GF people who “get it” and understand there’s a ton more to this disease than just eating a GF diet (complications, involvement with multiple systems of the body cross-contamination risks, development of additional autoimmune diseases, etc). And that we don’t eat gluten free just for “fun” or to lose weight. I hope you are doing well and I appreciate your support of my page.
      Jess

  2. Shauna B

    Thank you for sharing this and all of the information you pass along! I love staying up to date with the newest research. I am so sorry about your miscarriage.
    I agree with these mostly, except the first one. Of course food requires a lot of planning and work, but when I’m cooking at home it is much more relaxing and “normal” feeling than I expected it to be after first diagnosis. I used to fear that I would never feel safe putting food in my mouth again! So it’s nice to have gotten used to it as a way of life.
    Thanks again and keep sharing!

    1. Jess Post author

      Hi Shauna,
      Thank you so much for your kind words. I shared #1 because between traveling and work I probably eat at least 30-40% of my meals outside of my home :) During my residency and fellowship training (pre-diagnosis) I actually had an atrocious diet, I’d bring Lean Cuisines and Nutrigrain bars to work, ate a ton of sugary breakfast cereals, frequently ate out of the vending machines at the hospital, drank Diet Coke, etc. My celiac diagnosis has changed everything diet-wise (for the better, although it requires much more effort when traveling).
      Like you, my home is my gluten free safe haven, where I never have to worry about cross-contamination (and can actually eat whatever I want as long as I make it in my own kitchen).
      I wish you the best!
      Jess

  3. Kelli

    Thank you! It is great to hear experiences from a medical professional – seems to ease my anxiety. I personally feel nothing but pity from my Dr because they haven’t taken the time to understand how we our impacted physiologically.

    1. Jess Post author

      Hi Kelli,
      I have personally interacted with many, many doctors who do not understand Celiac. I had to argue with one that celiac is not the same as a wheat allergy. Another doctor told me that ALL of his celiac patients “cheat” on the GF diet all of the time and that, in his opinion, that it’s an impossible diet to adhere to (we all know this is not true). A physician friend of mine made gluten-free cheese soup for me at a social gathering, which I really appreciated, but right before I took a bite mentioned that she’d put about a tablespoon of flour into it to thicken it–she had no idea that this was enough to make anyone with celiac sick. I could go on and on, but I’ll stop :) I know we all have these stories, I just am around doctors all of the time being that they are my work colleagues, so I try my best to be patient and educate them, but it’s sometimes really hard.
      Jess

  4. Debbie

    Hi Jess,

    I loved this article. I feel like I could have written the same article except that I’m not a physician, I hate to run, and I haven’t started a blog. :) I echo almost everything that you have written. My peripheral neuropathy started about one year post going gf, after my TTG IGA numbers were back to normal. It makes no logical sense to me how this can happen. After about 6 mos it seems to have resolved. I never imagined that I would be unable to go more than an hour without thinking the word “gluten”. I am extremely thankful for my non-celiac husband for supporting our gluten free household and to my dear friends who work around my restrictions so that we can still be together. Thank you for your blog and your posts. I always enjoy them.

    1. Jess Post author

      Thank you so much Debbie! Although I hate to learn that there are others with the celiac-induced neuropathy, I am also comforted to know that I am not alone in it. It truly was a huge surprise to have it develop at the point where I really thought I had an excellent grasp of the GF diet and that my gut had healed. Although, just like in all facets of life, we never know what the future is going to hold.
      I really appreciate your support of my page. Thank you so much and I hope you continue to feel well!
      Jess

  5. Amy

    Thank you for sharing and for being an important voice for us with celiac disease.
    Every one of your points resonate with me, especially the resistance with family members. However, my dad just decided to get tested, finally after 6 years of my diagnosis; so, there is always hope!

    1. Jess Post author

      Hi Amy, If your dad finally got tested after 6 years it gives me some hope that at least a few of my family members will eventually come around and get tested. I have 4 siblings, they all know that they need to be tested, but none have been tested yet. Maybe at least one of them will read this and be reminded :)
      Did your dad test positive?
      Jess

  6. Amy

    Thank you for putting yourself “out there” and for sharing your journey. If it had not been for you, I would still be eating gluten because my doctor said I am fine. My flat villi in my small intestine he said, are idiopathic, and of no real worry – because my stomach is fine and so was my one biopsy. I Believe the body tells you information and sends you signals you should not dismiss. Because I have MS and because of what I read HERE, I believe I have an issue and I choose to pay attention to my body. I tell people I am borderline Celia and they are very supportive. My family is amazingly supportive, and may someday go gluten free as well. It is amazing what you can plan for food and how you can eat when it is a matter of health and healing. Everyone has a journey – thank you for sharing yours.
    * On another note. I moved from the Chicago suburbs almost two years ago and have watched the crazy cold of late on The Weather Channel. I hope you and your family are doing well this winter and enduring Mother Nature’s wrath as best you can. Stay safe and warm!
    – Amy R.

    1. Jess Post author

      Hi Amy,
      Thank you so much! To me, the term “idiopathic” is often such a red flag and it so great that you were able to trust your instincts and body and figure out what you needed to do to heal. As I’ve read and learned more and more about Dr. Wahls’ research and writings, I’ve gotten the impression that the GF diet may eventually become part of the medical “standard of care” for MS. Have you had similar thoughts?
      Also, I hope that you moved somewhere with a warmer climate! We are doing okay up here in WI, I think it’s not quite as bad as last year (close though) but today it was actually warm enough for us to go sledding with the kids without worrying about frostbite.
      Anyway, I wish you well and thanks so much for reading and commenting!
      Jess

  7. Jennifer F.

    Thank you very much for this website and your story. I found it in researching what may be going on with my 8 year old. We are in the process (we just began yesterday) of her 6 week gluten challenge so she can be tested at U of C. It is a terrible thing to do to your child. She is feeling miserable, but there is a history of mysterious symptoms/ailments that run in my husband’s family (rheumatoid arthritis, peripheral neuropathy, suspected MS, gallbladder issues, and gerd), so I need to know if this is celiac. I never in a million years thought we would be traveling thus road. I removed gluten because I thought it might help her seemingly minor digestive issues. Now I know that the lethargy, headaches, and foot pain she was having are alo related to gluten.

    1. Jess Post author

      Hi Jennifer,
      It’s nice to “meet” you. I am sorry that your daughter is having to undergo a gluten challenge, but at the same time, as it’s totally obvious that you already know, it will be so important to know if it’s celiac or not, especially as she gets older.
      I hope you’ve had a good experience at the U of C so far, they are an amazing group and are really making a difference with their research, education, advocacy, etc. I am hoping to attend their Spring Flours gala on May 1st. Any chance you’ll be there?
      Jess

  8. Nicole

    Jess, thank you for sharing the ups and downs. As I continue to ride the autoimmunity rollercoaster it is good to remember that there will be both. Your blog is much appreciated. :)

    1. Jess Post author

      Hi Nicole,
      You are welcome. I agree with you that autoimmunity is definitely like riding on a roller coaster (just one that none of us chose to ride in the first place, and not necessarily a fun one).
      Thank you for reading and supporting my blog too!
      Jess

  9. Sharon

    Jess,

    Ditto to 90%+ for me – especially the husband and family GF part. Thank you for putting it together so well. -Sharon

  10. Diana Thompson

    What I Didn’t Know:

    that some people have energy to do whatever they want.
    I had become allergic to nearly all foods except artificial flavors and colorings. (Feingold diet from jr. High)
    I could thrill In Science. It is both useful and incredible study of design far above my thoughts!
    Foggy fatigue, saving steps, and planning only one heavy event per day can be a result of illness, not just laziness.
    That I would end up leading support groups and writing a blog.
    My extended family would finally believe and ask incredulously where I got these troubles?
    The brain knows some things that we don’t know.
    When medical doctors can’t find a cause for trouble; many times someone else can.
    There are many ways to solve specific problems.
    It is hard to support someone that doesn’t do the same treatment as you.
    Incredible healing can be had, IF you have the right combo of tools and time.
    One can continue in transition toward better health for 3+ years and still not be there, yet.
    Healing is demanding work, physically, emotionally, and spiritually.
    It is possible to grieve a symptoms only after it leaves.
    It Is possible to only have hope in someone other than yourself.
    Some days I can only go on when carried. Yes, like all the days ending in D-A-Y.
    Recovering from heart attacks or cancer elicits flower. and visits.
    Health can return and abound!
    Hope is a blessing!

    1. Jess Post author

      Thank you for your lovely words Diana and for reminding all of us of the power of hope.
      I hope you are feeling well!
      Jess

  11. The Husband

    I never knew I was gluten loving before reading your blog post and I only gave up eating gluten inside our home, which is a big difference.

    I did know that I have an intelligent, diligent, caring, and beautiful wife who can conquer any challenge life gives her. Keep up the good work.

    1. Jess Post author

      Hi Tom (husband),

      Thank you for stopping by. I love you. I meant that you were “gluten loving” in the sense that most of the foods we ate before my diagnosis were pastas, lasagnas, pizza, etc–gluten heavy foods. You made a huge sacrifice to help me to feel better and to be able to be a better mom, doctor, and (hopefully) wife! I’ll see you when I get home from work tomorrow!

      Jess

      P.S. Now I am going to expect you to read and comment all of the time :)

  12. Paula @CeliacCorner

    Jess, thank you for sharing your thoughts and experiences living with CD. I always look forward to reading your honest and informative posts. “Intelligent, diligent, caring” … I haven’t met you in person, but I sense these adjectives describe you quite well! Stay healthy, keep being inspired, and thank you for caring enough to take the time out of your busy schedule to continue to help our community. Paula p.s. Happy 5 year anniversary (of being properly diagnosed!).

    1. Jess Post author

      Hi Paula,
      Thanks so much for your kind words. I admire you and respect all of your advocacy efforts as well. Your website was one of the first that I turned to for guidance and help after my diagnosis. I hope that we will eventually be able to meet in person someday (maybe once we move to the East Coast).
      Jess

  13. Olivia

    Lovely post. Thank you for sharing your journey with us. And I agree with an earlier commenter, there’s somehow a great comfort in having a physician on “our side” who speaks publicly about living with celiac.

    I agree about family members getting tested!! I guess I’m glad I’m not alone, though it’d be better if our families would all just get tested.

    And yes to not being able to imagine not planning food, and to the wonderfully supportive husbands, and to the sanctuary of a GF home!

    1. Jess Post author

      Hi Olivia,
      You’re welcome! Thank you for taking the time to both read and comment on my post.
      It has been so healing for me to be able to connect with others with gluten-related illnesses over the last few years as I felt really alone after my diagnosis in 2010.
      I agree with you about a GF home being a “sanctuary” too.
      Jess

  14. Sharon

    Hi Jess,

    I wanted to add one concern that I have for those diagnosed and still not healed, and for those newly diagnosed.

    I am shocked at the simplistic approach many physicians, dieticians, and celiac groups offer the newly diagnosed – you will be fine if you just stay away from gluten -without any broader dietary approach or minimally a warning that elimination of gluten alone may not resolve your symptoms or completely heal your gut. For twenty plus years a woman with celiac I have known casually told me she remained unhealed – turns out she routinely was getting ill from a food additive that I helped her identify.

    So my concern is – especially for those of us diagnosed after decades with the disease – that when elimination of gluten does not resolve symptoms in short order, folks will just return to eating gluten.

    When I mentioned in a small group meeting you might need to – for at least a period of time or permanently eliminate things like lactose, soy, other known food allergens, grains esp. corn, and of course many proceesed foods and food additives such as MSG and seaeeed-additives, I was criticized.

    I have met very few with celiac disease for whom either initially or ultimately removing gluten alone resolves all their issues. I was chastised at a local celiac group meeting for mentioning that sometimes people need to consult with their doctor or dietician if symptoms remain to try an elimination diet. In fact, I was reported to the head of the organization by the group leader as this advice might make people feel hopeless. My retort was that many people in the group were continuing to consume gluten because they were not getting sufficient symptom relief by just eliminating gluten. Being honest from the start about possible other dietary adjustments for a period of time or sometimes longterm is critical to helping these people – notng that I told them to seek dietary advise from their doctor and/or dietician. To me this information is so basic, yet it is routinely being excluded by specialists in this area – MDs, dieticians, and celiac groups.

    I feel that it is almost negligent not to address upfront this possibility with patients while holding to the fantasy that gluten elimination – while number 1 without exception – will 100% of the time resolve all their issues and produce healing after decades of gut damage – with a small intestine that may not be able to handle many other difficult to digest or inflammatory foods.

    1. Jess Post author

      Hi Sharon,
      Thank you. Another important thing is that if patients with celiac disease do not have a significant improvement in their symptoms after 6 months on the GF diet that they return to their physicians and be evaluated for why they have non-responsive celiac disease. Although accidental gluten cross-contamination is the most common culprit (hence the need to see and meet with a dietician who specializes in celiac disease at this point) there are other causes of persistent symptoms, including small bowel intestinal overgrowth and other food intolerances.
      Jess

      1. Vik

        Yeah, I am going to be checking into some of that stuff too. My recent repeat endoscopy ( 2 years from diagnosis) showed no inflammation, which was awesome, since I started as a Marsh 3. But, after a pretty good run of feeling fairly digestively ok since going GF…the last few months, not as much. So, have an appt to talk to gastro again in a few weeks. The food intolerance thing is such a conundrum. There doesn’t seem to be any easy way to just tell.

  15. Vik

    Hi Jess–I stopped receiving emails about new posts for your blog, awhile back. I re-signed up, notifications still aren’t working though, so I will just have to check back more often. Congratulations on your 5 years! After 2 years, I have had many of the same “I had no idea” moments. But awww Jess, I am SO sorry to hear about your miscarriage. And it’s so wonderful of you to share about this painful time, as it could help someone else. Thank you for being on our team. It is beyond awesome to have a blog by a physician who is also empathetic and a good writer!

    1. Jess Post author

      Vik,
      You’re welcome. I am sending a huge virtual hug to you.
      I have no idea why subscriptions are being dropped (you are not the only subscriber this has happened to) but the good news is that I met with a team last week and my entire website is going to be revamped in the upcoming months–so hopefully this will not continue to happen after the new site is up. I am really excited about all of the planned changes!
      Jess

      1. Vik

        Hugs backatcha. I look forward to your new site. If you are looking for ideas about posts…I would love to hear more about the MTHFR gene mutation. I’m starting to hear about it and am like…oh, NOW WHAT? :-)

  16. Maggie

    I just realized I have not been receiving notifications from your blog. Please reinstate me.

    1. Jess Post author

      Maggie,
      I just did. As you can see in my reply to Vik above I have no idea why this is happening, but I hope that it will no longer be a problem when my new site goes live. Thanks for letting me know. And thanks so much for supporting my page!
      Jess

  17. Dee

    Hi Jess, I am glad I have found your site. Although I have been gf with good compliance and knowledge of CD and gf foods over the past 6 years since diagnosis I have recently had a huge setback health wise. I am at my wits end with being sick, in pain and reduced functioning and the life-limiting affects this is having. So after extensive knowledge seeking – I am going on a strict 8 week Autoimmune paleo (AIP) diet to hopefully settle my gut and immune system before going through a process of reintroducing and eliminating problem foods that I may also have a problem with. (To Sharon who posted above – good on you for persisting in spreading the message despite the angst it caused). Like you Jess, and many others, i too find myself educating others on CD and GF and have had no luck convincing parents and siblings to get tested despite one brother having a diagnosis of hypothyroidism.

    I look forward to visiting here more often.
    Cheerio
    Dee

  18. Kate Marlow

    Thank you so much for sharing your journey. I just hit the one-year post-diagnosis mark, and it is always so helpful to read about how others live with Celiac. It often feels like a lonely endeavor, and it is so nice to know there are others who deal with all of the same issues!

    1. Jess Post author

      Hi Kate,
      You’re welcome. I can promise you that it will continue to get easier every year. And that you are never alone!
      Thanks so much for visiting my page.
      Jess

  19. Det

    Hi Jess,
    What a wonderful site. Thank you so much for setting it up it is so helpful and also thank you for spending the time answering the posts.
    I was diagnosed with Coeliac disease at the age of 60 but I believe I have had it all my life. I have always had diarrhoea as far back as I can remember probably 3 years old. I have had terrible mood swings and outburst of an aweful temper and depression since my earliest memories. Now on gluten free the temper outburst and the mood swings have gone. The depression is still there but so much better than when I was eating gluten. The mood swings and aweful temper had such a huge effect on my life, I feel a little sad to think how different life could have been for me if a diagnosis had come early.
    I was negative for antibodies but endoscody showed coeliac disease level 3. I then had testing to see if I had the gene for COELIAC and yes I do. I was finally tested for coeliac disease after vomiting and diarrhoea every day for 3 months and 5 visits to the emergency room the before with severe bouth of diarrhoea and vomiting.
    By the time the Drs found coeliac disease I had a long list of diagnosis, asthma, major depressive disorder, diabetes Type 11, acute pancreatitis, reflux, barretts oesophagus, sleep apnea, central nervous system hypersomelence, high blood pressure, high cholesteral. I take medication for all of these.
    I have had a diagnosis of Mast Cell Activation Syndrome since the Coeliac diagnosis as the diarrhoe and vomiting did not stop with absolute adherence to gluten free, and at the moment I am being investigated for Sjogrens syndrome which might explain the no antibodies to Coeliac disease
    I am unwell most of the time and rarely leave the house. I am hoping with some treatment for Sjogrens I may inprove.
    I didnt understand when I was first diagnosed with Coeliac that the gluten caused moore than diarrhoea it is only recently that I have found out all the effects Coelic disease can have.
    It certainly isnt just diarrhoea and bloating.
    Wouldn’t it be fabulous if a hand out was given to patients when they were diagnosed with Coeliac Disease explaining why the gluten free diet is so important and all the effects it can have on all the systems of the body and including the risk of lymphoma.
    Det

    1. Jess Post author

      Hi Det,

      Thank you so much for stopping by and sharing your story.
      I have been astounded to learn all of the symptoms of celiac disease and that it can have effects on just about every symptom of our bodies.
      Like you, I also have mast cell activation syndrome as well. I am disturbed by the fact that so many of us have both conditions.
      A comprehensive handout would be a great idea. I was told by my MD to eat GF after I was diagnosed and that was all. That’s why I was so surprised when I developed celiac-induced neurologic symptoms 2 years later (I had no idea that celiac disease could effect the brain and nervous system). That is when I began to read and study a lot about celiac, and my studies and all of the new information that I learned prompted me to start this page. I figured that if my celiac knowledge base was so low, that many others must be in the same situation (knowing the basics about celiac but none of the complexities).

      Anyway, it is nice to meet you and I hope that you are able to get answers for some of your lingering symptoms. I hope to “see” you on here in the future too.

      Jess

  20. Sharon

    I have to be ever vigilant and eat as natural as possible avoiding processed foods. I have certified brands that I trust. When I stray to general GF not 5 ppm certified I can run into trouble. If carrageenan is an issue for anyone also watch for other seaweed-additives under the names algin/alginic acid/sodium or other alginate, agar or seaweed itself kelp.

    1. Sharon

      Oh yes watch out for Rx and OTC meds as I got fooled by the latter for a period of time – shame on me – but was able to find some ibuprofen that was GF. I was clearly thinking about vitamins and supplements that are under food and have to labelled with food allergens, but OTC drugs do not though some manufacturers are starting to so voluntarily.

      Latest celiac news is that many probiotics labelled GF contain gluten. Trying to locate a safe maker list but the news pieces are not including this info, i.e. naming names.

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