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Women with celiac disease, we are not alone…

I have spent a good portion of this summer enjoying my time with my family, traveling, and not obsessing about celiac disease (which has led me to not write about it either!) Overall, I am comfortable with my gluten free household and life and have accepted my diagnosis. But, the other day, in part due to fatigue and in part due to accidentally eating a KIND bar with soy protein (soy is one of my other food intolerances and I feel like total garbage after eating it), I totally lost my calm. I found my 4-year-old, Gabby, eating a bag of Goldfish crackers when I picked her up from day camp. Instead of hugging and kissing her, and asking her about her day, like I should have, I began to obsess about celiac disease. Thoughts like, “Now I have to clean all of the gluten off of her face and I don’t have any napkins or wet wipes,” and, “Why the heck is she getting Goldfish crackers as a ‘healthy’ snack’?” and, “I cannot afford to get ‘glutened’ this week because I have to be able to work and function as a mom!” went through my mind. The encounter of picking up Gabby from camp quickly became “all about me,” which is one thing that I truly despise about this disease.

That very night I came across a timely article entitled “Everyday Life for Women with Celiac Disease” in which 16 Swedish women with celiac disease share their experiences. Amazingly, there has not been much published on this topic over the years, so I read it with much interest.

Here are some of the common themes that came up in the discussions in the study:

1. Celiac Disease affects a person’s entire life.

2. The experience of persistent fatigue, even after years on the gluten free diet.

3. Many women reported new signs and symptoms in other areas of the body, such as headaches, after starting the gluten free diet.

4. Anxiety about always having to plan ahead to have food to be able to safely eat and frustration at the lack of spontaneity associated with eating outside of the home.

5.  Reluctance to attend parties and social events due to fears of gluten contamination.

6. Feelings of sadness, vulnerability, anger, and hopelessness surrounding having to follow the gluten free diet. Many women felt lonely in their struggles.

I have experienced #1-6 more times than I can count, and although it has gotten easier with time, I continue to struggle to explain to others how careful I need to be with eating food that is not prepared in my own kitchen. Many of my friends and family members have had no idea how careful I need to be about cross contamination, and that I have to avoid foods that not only contain gluten, but that are prepared on surfaces and in equipment where cross contamination might occur.

Reading about the experience of these women with celiac disease made me feel much less alone, much less “crazy,” and I realized that my reaction to Gabby’s Goldfish crackers was probably not as severe as I had initially thought.  I have decided to be a little easier on myself and move on as I know that Gabby definitely already has. Also, when I pick her up today I’ll be better prepared with some wet wipes and paper towels to clean up the gluten crumbs!

Reference:

Roos, Suzanne, Hellstrom, Ingrid, Hallert, Claes, and Wilhelmsson, Susan. Everyday Life for Women with Celiac Disease. Gastroenterology Nursing. 2013. 36(4), p. 266-273.

14 thoughts on “Women with celiac disease, we are not alone…

  1. Paula @CeliacCorner

    Jess, thanks for your heartfelt article. Yes, along with “acceptance” (of initial diagnosis & GF lifestyle), comes the day-to -day challenges that we face … for a lifetime. Though, like you, most of us manage well, and try to stay positive, I think we all have days when we lament our various diagnoses and need to release our frustrations via a gentle SCREAM – aaah. Then we go to sleep and awake the next morning prepared to once again meet head on our various challenges … with diligence, discipline, patience and humor (until the next “crazy” day!).

    This celiac woman thanks you for sharing your feelings (feelings that are relateable to many of us!) and for maintaining a wonderful blog.

    1. Jess Post author

      Hi Paula,
      It’s funny, when I wrote this post the other day I was in such a bad mood about this disease, and just tonight I went to a totally GF social gathering, making batches of freezer meals for this fall, and I felt comfortable and okay. It has been wonderful to meet so many like-minded people, including you, both in prson and through the internet this past year!
      As for the headaches after going GF in the study, I am not sure. I am sure that stress must play a role. The researchers did mention several times in the paper that the women with Celiac Disease, although all strictly gluten free, were concerned that perhaps they had other problems going on in addition to Celiac Disease (and some even questioned whether the GF diet is enough of a treatment for Celiac Disease). Lastly, some of the women also wondered whether the GF diet led to vitamin/mineral deficiencies which caused their additional symptoms. The more that I am learning about Mast Cell Activation Syndrome (MCAS), which is a relatively new autoimmune diagnosis, the more convinced I am that many of us are suffering from this in addition to Celiac Disease (another upcoming blog topic). The symptoms can affect multiple systems in the body and cause IBS, migraines, joint pains, brain fog, neuropathies, asthma-like symptoms, heart palpitations, etc. It seems like too many of us are experiencing this after going GF for it to be a coincidence, so we’ll see what the future holds with awareness and diagnosis of MCAS in our population. I will write about this more soon.
      Thanks for your support as I have gotten this blog up and going!
      Jess
      P.S. Did you make it to Captain Frosty’s?

      1. Paula @CeliacCorner

        Looking forward to reading your post on MCAS. No, didn’t make it to Frosty’s, but did have a few great GF dining experiences (post coming soon!). Enjoy the upcoming weekend – Paula

  2. Rachael

    I can’t tell you how timely your posting was for me!!! I’m having a bad Celiac day, complete with two Celiac sick kids home from school. Now that school has started, so have the judgments, explanations, and situations that require last minute scrambling. From now on I will close my eyes, exhale and think of the Swedish women!!!! Thank you for sharing!

    1. Jess Post author

      Hi Rachael,
      I hope that you week and babies are getting better. Just remember that you are not alone in this (even though it sometimes feels like we are) and that we are doing the best we can…I am going to keep the 16 Swedish women near and dear to my heart with all of the back-to-school madness in the upcoming weeks too!
      Jess

  3. Vik

    Loved this article, being very familiar with all of 1-6. It was especially hard at first, these days I feel like I’m more in the groove. Most of the time. Sometimes I descend into the ole 1-6. And, now with 6 months of GF eating, the most stressful part is wondering if what I’m doing is really helping as much as I hope it is. (Are the villi coming back? Are the various deficiencies improving? How do I even know???? I don’t get dramatic symptoms if I ingest gluten.) There is so much conflicting information, at my HMO, on the web, everywhere. So thank you Jess for your contributions. The headaches people mentioned. I very seldom get headaches and for several weeks after the diagnosis and switching to GF, my head was KILLING me. Plus my mind was foggy. I didn’t know if it was the stress of all the due diligence in the dozens of emails/phone calls I had to make, plus stress about the celiac in general, or some kind of a gluten withdrawal, or what. It was scary, especially since a close friend had recently died from brain cancer, but since I could date it to the GF diagnosis, I figured it would pass and it did. I am so appreciative especially of my husband, who also went GF and has helped me so much with his support, and continually with the nuts and bolts of the situation.

    1. Jess Post author

      Hi Vik,
      It is so nice to hear from you and learn that your adjustment to being gluten free is overall going well. How wonderful that your husband is supportive and went GF as well…it really does make a huge difference, it seems, in our healing, when our family members support us.
      As for headaches, interestingly enough, I only seem to get them when I accidentally ingest soy protein, like when I ate the protein enhanced KIND bar a few weeks back right before I wrote this post. I am actually wondering if some of the Swedish women have other food intolerances which have been unmasked after going GF. Although, the stress and gluten withdrawal which you bring up also make sense too! I have been fortunate to be able to practice yoga this past year for the first time since college and it has really helped me to cope with my autoimmune issues.
      Any chance that you’ll be in Chicago next month for the Celiac Symposium at the U. of Chicago?
      Jess

      1. Vik

        That’s great that yoga is so helpful for you. No, I won’t be at the Symposium, but look forward to whatever you might share.

  4. Lee

    Hello everyone, I’ve just discovered this site and was especially pleased to read about Coeliac Disease and women. I was diagnosed 16 years ago and have since found other food intolerances – amines, glutamates, sulphates and I only eat from the low level list of salicylates. It’s a rather restrictive diet and I worry that I seem to becoming increasingly sensitive to even more foods. My husband doesn’t understand that the foods he happily eats can make anyone sick and he thinks it’s all in my head. I feel very alone and overwhelmed. Thank you so much to everyone for sharing your stories, Lee

    1. Jess Post author

      Hi Lee,
      Thank you for sharing your story. You are definitely not alone, and in some ways, it seems like you are ahead of the curve in figuring out that you have additional food intolerances. Have you been evaluated for mast cell activation syndrome/disorder? It seems like more and more of us with Celiac Disease are being diagnosed with this, and it helps to explain the food intolerances which we are developing when we go gluten free. I will be writing more about this soon but thought that perhaps you may be interested in learning more about it.
      Jess

  5. Jenny

    I relate to all of these! It does help me to feel not alone – but I wish there were a solution to the persistent fatigue and joint pain I experience. The doc just tells me to “remain on a gluten free diet” (well duh! Lol) Hopefully these new studies and trial drugs produce something useful. Thanks again :)

    1. Jess Post author

      Hi Jenny,
      You are definitely not alone. There are tons of us who are having similar experiences all around the world. I have been trying to spread the word about the Celiaction Study, as the medication they are testing should be very helpful in preventing gluten cross-contamination. I will never go back to eating gluten again, but I look forward to being able to dine out and eat items off of GF menus without risking damage from cross-contamination. Whenever I get accidentally exposed I get joint pains and really fatigued. I also get similar symptoms from soy, but the soy joint pains only last a day or 2 and resolve a lot quicker.
      Anyway, it’s nice to “meet” you!
      Jess

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