You Still Have Celiac Disease

I feel my husband lean over and kiss me on my forehead.  My eyes start to open and adjust to the light in the recovery room.  I'm groggy, but trying to speak a little.  My husband gives me a sip of ice water.  Then I make a rather blunt announcement to him (and all the nurses in ear shot)."These doctors . . . they don't know SHIT!"You Still Have Celiac DiseaseYep.  I wake up from medical procedures in world-renowned teaching hospitals and use the moment to keep it real classy.  Even pumped full of lots of drugs and with a sore throat from my third endoscopy, I've got enough moxie to let my doctors know that I've got their number.

My latest medical adventures have left me with some disappointing news readers.  Let me tell you what is up . . .

My old Celiac guru was Dr. Alessio Fasano (click on this link to hear an awesome interview he did with Chris Kresser).  I don't use the word guru lightly in describing Dr. Fasano.  He's basically THE guy in the Celiac world.  But then he moved to Boston.  I was so mad.  Then I thought about it rationally.  "He's doing intensive research up there, with a fantastic team.  Me and all the other Celiacs need that research.  I guess I can stop being selfish."  So then I considered flying back and forth to Boston to stay in his care.  Then I thought about it rationally.  "Have you looked at the bank account recently, girlfriend?  You've kinda' spent every last dime on health care over this Celiac thing already."  That's when I started the hunt for my FOURTH GI specialist in a little less than two years.

Lucky for me, there are great medical schools in my area, that attract impressive doctors.  I found a doctor known for taking a functional medicine approach and made an appointment to see him for my one-year post diagnosis follow-up.  I made the appointment in November.  I got to see him at the end of March.  Sigh.  I guess that is pretty normal if you want to see the ones that are supposed to know their stuff.

In March he decided we should do tons of follow-up testing.  I repeated a myriad of tests that I had first taken between February 2012 and July 2012, when I was still trying to fully understand the strength of Celiac's grip on me.  He also threw in a few tests I had never done before, like a camera endoscopy and an intestinal permeability test.  I did all those while I patiently waited for a clinic appointment to open up, so that I could get into the hospital and he could perform a repeat endoscopy and take biopsies.  On Monday, June 3rd, I was finally confirmed for an opening on June 7th.  Friday morning at 6 AM, I eagerly arrived hoping to learn all about my healing.

When I woke up, my husband and I learned much different information.  My blood tests show my gluten antibodies have climbed from a low last September of 4, to 50 (still nowhere near my highest numbers, but alarming nonetheless).  Based on what he was able to see visually, the doctor also confirmed inflammation and damage to my small intestine.  Now I wait for the next three weeks for pathology reports to come back in order to learn what stage the damage is, whether or not there is any sign of healing at all, or if they think I have Refractory Sprue.  I don't know if it is even possible for my doctor to say if the damage is old and not healed or new and due to gluten exposure or a combination of both.  The waiting game.

This is the true story readers.  I cried all the way home from the hospital.  My throat was sore and I was still dazed from the sedation, so I slept for a few hours.  Then I woke up crying and my husband held me for a few hours while I unloaded all my fears.  I'd been struggling with some ups and downs since a set-back in February and then I got the news in April that I had another SIBO.  So, it is not entirely a surprise to me that my Celiac is as active as ever, but I "crossed my fingers and hoped to die" that there would be some visible, reassuring progress.

I now suspect the last few months (set-backs, SIBO, not feeling consistently good) were due to gluten contamination somewhere in my life.  You know how I eat (there are pictures all over Facebook), so it has to be some pretty hidden gluten.  My husband and I already super sleuthed one potential source.  An herbal tea we previously thought was okay.  Damn!  That tea is OUT.  We also suspect supplements that were labeled gluten-free.  Double damn!  It has been a major challenge for me to get a good supplement routine in place.  As of Friday I have eliminated everything and will be following Diane Sanfilippo's advice to "eliminate before you add."  I also think I may not have been careful enough when eating or preparing food at work.  Triple damn!  Time to start bringing my own utensils and dishes.

There are so many questions and self-doubts in this journey.  Where is the contamination coming from?  How much more will I have to shrink my world in order to keep myself safe?  Is this my fault?  Was I not dedicated enough?  Should I start considering every possibility, like, "What if I have Refractory Sprue? or Will it become intestinal cancer?"  Do I need to consider other treatments, like steroids?  Did I just waste over a year of healing progress?  Is all this effort even worth it?

Our world, in general, but especially for those battling autoimmunity, can be a very despairing place.  I literally tell people all the time not to give in to despair.  Hopeless people do not act, even on their own behalf.  I need to take my own advice.  I need to stay strong with hope . . . or whatever the thing is that helps one wake up in a hospital and proclaim, "These doctors . . . they don't know SHIT!"

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9 thoughts on “You Still Have Celiac Disease

  1. Anonymous

    You poor thing. I really feel for you. I didn't test positive on my celiac test but I definitely have all the symptoms in addition to several rounds of SIBO. I'm on my third course of Xifaxin in 12 months despite being gluten, grain and legume free plus mostly dairy free (I eat pastured butter) and almost completely sugar free. I haven't been successful in my requests for another upper GI to check for damage to my SI. Anyway, you are not alone and we are all out here pulling for you. You are doing great work in documenting what you are going through so that others might learn from you. I want to thank you for that.

    1. Lisa Steigerwald

      Praying for you!!! Stay positive, it helps a great deal in any journey! Don't give in to your worst fears!

  2. Darcie

    You are human, thank you for sharing that with us - it makes you a better mentor. Hang in there, stay strong, and all that 🙂

  3. I'm sorry you are going through this setback... You have done such hard work, it's just not fair. When I'm frustrated about something I always try to get something positive out of it, but sometimes I just need to take it out on a pillow or so before I can do that. I wish you all the best!

  4. I am sorry that you are experiencing this because you have worked so hard at keeping your diet free of gluten. I admire your honesty and bravery in sharing your story. Please keep us updated on what happens.
    Also, I am around doctors all of the time, and sadly, have encountered far too many who don't know shit!

  5. Anonymous

    Unfortunately too many so called doctors don't know shit! The funny thing is more than once I've been asked how I would like to proceed with whatever ailment I'm being seen for...really doc?? This is what I know. Never ever give up and listen to your body and heart. If you have an inkling of what is right or wrong or what test needs to be done or whatever don't hesitate demand answers, tests, second options, referrals or the opinion they don't want to give. Somewhere out there is your freedom, hope and the answers you need. I should add i do highly respect those in the medical field. Prayers to you Angie!

  6. Lisa S

    Supplements were you taking that ended up not being GF? I am researching my prescription meds as well as my supplements after reading this!


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