Celiac Disease and Inflammatory Bowel Disorders (crohns, colitis)

Talk about a hiatus.

it’s been awhile, gluten free friends.  Even in the last two years, so much has changed in the gluten free community and here.

last year, after the birth of my now toddler, I found myself sicker than ever.  Muscle pain, joint pain, fatigue – to the point that it was difficult to keep my eyes open, I could barely manage grocery trips and needed frequent tests between activities.  My stomach pain was worsening.  I had constant nausea. (Did I mention there was a baby running around now?)

Like with celiac disease, doctors see GI symptoms and like to just throw things at it.  We live in a health care world of symptom management and not prevention.  “It’s probably post partum reflux,” my PCP said.  “Take some omeprazole.”  Of course, that did nothing.

It took a month and a half to see my GI and then another few months and several procedures (upper endoscopy, colonoscopy, capsule endoscopy and a 6 week Entocort/steroid trial) before we got a diagnosis.  It saddens me knowing others have gone even longer before hearing these words.

you have Crohn’s disease.

oh.  God.  So now I have another auto immune condition (so common for celiac disease, actually) and one that we don’t understand and can only hope to treat with immune modulating medications that increase the risks of cancer?

Yeah, that happened.  We started Humira.  I had a drug reaction after the loading dose that caused some muscle wasting.  I could barely hold my phone or pick up the baby for a week. Hi Humira.

We knew we’d want another baby so the doctor said let’s do Cimzia next.  It doesn’t cross the placenta in the third trimester like the others do.

It’s the end of October 2016 by now.  Mind you, the first was born in dec 15. I started the Cimzia and oops.  Pregnant.  I had just finished the loading doses and felt a bit better with it.  Even that relief was short lived – Cimzia and I shared a love / hate relationship.  I’d have a few days of sick from it, then better and then worse again.  We really tried, though.  By trying? We did the normal month dosing, then did one injection (yes, I’m giving myself shots at this point) every two weeks and then moved to two injections every two weeks and before we finally quit, we went to one injection every week.  My GI even said he’d only ever seen one other person on two injections every  two weeks before.  We’ll call this the good ol college try and being too pregnant to switch to something else.

If I thought I had a love hate relationship with food after my celiac diagnosis, I did but that lessened with time and acceptance of my “treatable” genetic condition… now, though?   I wouldn’t wish inflammatory bowel disease (IBD) on anyone.  Crohns, colitis, ulcerative colitis, stomach issues (even celiac) are conditions that strike unexpectedly and terribly.  There may be small subtle symptoms, big debilitating ones, GI symptoms and non-gastro symptoms.  Like celiac, it’s all across the board and makes every day a guess on how it might be.  No matter – it’s something we take on every day and hopefully just leaves us stronger for it.

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