May is Celiac Disease Awareness Month

Well-Being Wednesday:  May is Celiac Disease Awareness Month.

 

Celiac disease is an inherited, autoimmune disorder in which the immune system is triggered by the ingestion of gluten (in wheat, barley, rye, oats, or from cross contamination by these grains), leading to inflammation and damage to the small intestine often with gastrointestinal complaints and, possibly, a sequalae of other issues, including malnutrition, skin conditions, nervous systems conditions (like migraines and polyneuropathy), infertility, and an increased risk of cancer, among others.

 

It is estimated that 83% of people with celiac disease are undiagnosed or misdiagnosed, with 1 in 133 Americans thought to have celiac disease1.  A correct diagnosis can take 6-10 years.  There are no medications to treat or cure celiac disease; the only “fix” is a gluten free diet.

 

I have celiac disease.  I was diagnosed in 2005 when packaged, gluten free products were minimal in grocery stores.  It took me approximately 6 years to be diagnosed.  I also have related conditions – Ehlers Danlos syndrome (EDS) and mast cell activation syndrome (MCAS).  For some, it is thought that misbehaving mast cells can play a role in celiac2.

 

I was diagnosed in graduate school, but my symptoms started in high school that I assumed were stress related – my stomach hurt and the frequency and intensity of this pain and associated GI distress increased for years while I ignored it to focus on studying (I took a lot of anti-acids; academic institutions contribute that the mind/body binary – I dissociated with my body to focus on learning and, in doing so, was able to ignore my worsening health).  On top of my stomach pain, I had migraines, acne that wouldn’t go away, and other health issues that might have been a both/and – celiac and MCAS/dysautonomia (dizzy spells and paresthesia for example).

 

I view celiac disease as a type of disability (when examined through the social model3).  People with celiac disease are not able to meet societal expectations often – we have difficulty accessing safe food, we have additional time constraints around food (more preparation and planning), we often avoid or don’t participate in food-based social and work activities, and the pain and healing required from “being glutened” as well as from the sequalae of celiac disease can create additional health hurdles.

 

I still have loved ones that assume I can eat gluten, that celiac was temporary, that I am being rude for not eating at the potluck4,  that they know more about my body than I or my doctors do and (throws up hands) I must have been misdiagnosed.  Ugh.  But I get it – those sentiments are more about their lack of education and their lack of awareness or discomfort around the meaning of and impacts of food.  Food is powerful – it can be both medicine and poison, but in our quick-fix, pharmaceutical and packaged food biased society, that power and healing potential of nutrient-dense, closer to the earth food is forgotten and can be startling5.

 

These social expectations and lack of understanding on top of the paltry accurate diagnosis numbers are why celiac disease gets a month to itself (along with masturbation may, but that’s a different blog6) – we need the education.

 

I incorporate my understanding of celiac disease into my professional practice as a fitness and wellness specialist by:

  • history taking – when working with a new client, I ask about their current diet, medical history, and symptoms across symptoms; this helps me notice possible gaps in their diet and possible food intolerances
          • I am not a dietician, but nutritional screening and medical screening are a part of a physical therapist’s scope of practice
  • understanding how quality of health will impact fitness goals – if your body is malnourished, a goal of running a marathon is not in alignment with your body’s physiological needs, for example
  • using graded exercise to build physical fitness in a recovering or undernourished body
  • emphasizing nutrient dense foods, particularly vegetables, and water – most Americans would benefit from these dietary changes (when financially approachable – nutritious food is expensive)

 

Thanks for your curiosity, reading, and willingness to learn ~ my hope is that you learned something you can take back to your family or community for increased collective well-being.

 

If you are interested in working with me, as a fitness and wellness provider that is familiar with celiac disease, or if you are interested in general fitness and wellness, including basic nutritional guidance in the scope of physical therapy, please see below for my contact and scheduling information.

 

Questions for the reader:

  1. Do you know someone with celiac disease?
  2. Are you aware of the pleathora of possible symptoms?
    1. Hint: https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220
  3. How do you typically think of disability? And are there other ways that celiac disease might be experienced as a disability?

 

 

Resources and additional thoughts:

  1. https://www.beyondceliac.org/celiac-disease/facts-and-figures/#:~:text=An%20estimated%201%20in%20133,celiac%20disease%20to%20be%201.6%25.
  2. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6678566/
  3. The social model of disability suggests that it is society that disables people. We often think of this model in terms of access to ramps and/or elevators verses stairs, but I think of it too in terms of people’s expectations of others.  Expectations around accessibility and safety of food (that you can easily find something to eat and/or the lack of awareness around how much time and expense goes in to the preparation of safe food), expectations that you can “just eat a little bit” of gluten to appease that family member/coworker/friend and their expectations around the social meaning of food, expectations around physical function and ability while in pain or GI distress, etc.  There is also the extra time involved, not just in actual food prep, but in planning vacations or outings, in explaining your diagnosis to colleagues before a food-based work event, in educating other parents before your gluten free kids go to food-based events like parties.  Our society often thinks of disability as the ability to work 40 hrs a week or not – this is an incredibly narrow, dehumanizing, and capitalistic definition of disability.
  4. Sorry, I will not eat at your potluck. I tried to play the nice person game and do that to appease others, only to end up sick.  Your comfort is not worth the cost of my health.  Plus, cross contamination – oh my gosh, big risk at potlucks with shared serving utensils and uncovered dishes.
  5. Our disconnect from our food is troubling – most of us wouldn’t recognize the plants that some of our favorite fruits and vegetables come from, we wouldn’t know how to grow them on our own if needed, and many of us don’t know how to prepare our food – we rely on the cooking and food prep of others.  This feels disempowering to me, and my experience with celiac disease only highlighted this general disconnect from food that our society has.
  6. My piece on Masturbation May: https://ignitewell-being.com/masturbation-may/

 

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The above content is written by Dr. Allison Mitch, PT (DPT), RYT500; sex-positive/affirming, trauma-informed sexuality counselor and educator (she/her/they/them); copyright protected, please cite accordingly.  The picture is from Pexels.

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