Celiac Sucks

25 03 2010

On a day to day basis I am able to tell myself that there are things much worse than having celiac disease.  In general I believe that my celiac diagnosis led me to some major positive lifestyle changes, and led my family to some very positive lifestyle changes.  And then there are days like yesterday.

Mile 5  of the bike ride my waist band started to feel like it was digging into my belly.  Hmm, that lunch I ate before the ride must not be sitting well.  Mile 6 I couldn’t keep anywhere near my riding partner – try as I might.  Mile 7 I was reduced to labor like breathing and had my tights pulled up to my ribs to try and lesson the discomfort of the waistband on my belly.  My wonderfully patient riding partner suggested a break at mile 8 to walk around a bit.  By then I knew it wasn’t the timing of my pre-ride lunch, rather what was in my pre-ride lunch.  Somehow I got gluten – but for the life of me I still don’t know where.

So, what is celiac?  It’s not a food allergy, rather an auto-immune disorder.  From the Mayo clinic website:

Celiac disease is a digestive condition triggered by consumption of the protein gluten, which is found in bread, pasta, cookies, pizza crust and many other foods containing wheat, barley or rye. If you have celiac disease and eat foods containing gluten, an immune reaction occurs in your small intestine, causing damage to the surface of your small intestine and an inability to absorb certain nutrients.

Eventually, the decreased absorption of nutrients (malabsorption) that occurs with celiac disease can cause vitamin deficiencies that deprive your brain, peripheral nervous system, bones, liver and other organs of vital nourishment. This can lead to other illnesses and stunted growth in children

Reactions to gluten vary dramatically.  My son gets very hyper, or more importantly can not concentrate, has a stomach ache and gas that can clear a room.  For me, about 20 min. after I ingest gluten my stomach starts to bloat.  After about 10 min. of bloating my belly looks like I am 5 months pregnant.  It’s like the worst gas pain you can imagine, without the gas to relive the pain.  This can go on for a few hours to a few days.  I usually get a migraine about 3 hours after ingesting gluten, and have achy bones and joints for the next day or two.   From what I have heard my reactions are fairly mild and thankfully they usually only last a day or two.

Some of the other gluten reaction/ celiac symtoms include: (also taken from the Mayo Clinic website)

  • Intermittent diarrhea
  • Abdominal pain
  • Bloating

Sometimes people with celiac disease may have no gastrointestinal symptoms at all. Celiac disease symptoms can also mimic those of other conditions, such as irritable bowel syndrome, gastric ulcers, Crohn’s disease, parasite infections, anemia, skin disorders or a nervous condition.

Celiac disease may also present itself in less obvious ways, including:

  • Irritability or depression
  • Anemia
  • Stomach upset
  • Joint pain
  • Muscle cramps
  • Skin rash
  • Mouth sores
  • Dental and bone disorders (such as osteoporosis)
  • Tingling in the legs and feet (neuropathy)

Some indications of malabsorption that may result from celiac disease include:

  • Weight loss
  • Diarrhea
  • Abdominal cramps, gas and bloating
  • General weakness and fatigue
  • Foul-smelling or grayish stools that may be fatty or oily
  • Stunted growth (in children)
  • Osteoporosis
  • Anemia

My biggest issue is that I am lucky enough to be super sensitive to gluten. Because it’s an autoimmune response it doesn’t matter how much gluten I consume, and because I am clearly advanced at everything I do, my body is super good at detecting gluten.  Residue on the toaster oven from regular bread?  I will react just as severely as if I bit into a big ‘ol yummy loaf of gluten bread.   I suspect toaster residue was the culprit in my gluten reaction yesterday.

Today I am a bit better, but still not able to enjoy the beautiful weather outside while riding my bike.   There are many worse thing that I could have.  Today I am left struggling to appreciate my healthy lifestyle changes and reminding myself two days of missed training aren’t the end of the world.   I’d better go clean my toaster .  . .

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24 responses

30 03 2010
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Do you share a toaster with gluten bread??

6 04 2013
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Kati, I really really really hate having celiac disease and here’s why. I already have an extremely rare physical disabilty Myoclonic Epilepsy with Ragged Red Fibers. It’s not the celiac diet but the combination because the MERRF makes it hard to cook. My muscles twitch or spasm when I do fine motor activities like cooking or slicing veggies. And, now I can’t enjoy restaurants either….ahhh!!!!!!

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