The Dreaded Set Back

I’m closing in on one year of following Autoimmune Protocol and passed my one year gluten free mark almost two weeks ago.  I’ve been extremely dedicated.  Extremely careful.  Short of enrolling in holistic nutrition courses, I’ve spent every available moment learning everything I can about healing.  It’s gone very well . . . until recently.  I think I may be dealing with the dreaded set back.What starts this terrible spiral?  Why does autoimmunity work this way?  I’ve worked so diligently at this mission, how did I end up here again?  Honestly . . . I’m scared.Set backs, flares, whatever you call it, it is scary.  I’ve felt it coming on bit by bit for about a month and then late last week I couldn’t ignore it anymore.  It’s a helpless feeling.  It’s like sliding slowly into a dark spot and not being able to stop the slide.  Something in my body is not working properly.  It’s off.

Not off in the way a healthy person experiences it though.  It isn’t like a Saturday morning after a Friday night on the town.  It isn’t like an extra hard work out that leaves you sore.  It’s not like I’ve put in a few late nights at the office and now feel the extra drag.  It’s like winding down for no apparent reason.

My most frequent scary thoughts go like this, “Could it be the start of another autoimmune?”  And if that is case, I start to want to scream at the universe, “Are you EFFING kidding me!?”  I’m not always very graceful in dealing with this stuff.

“How long will this last?  Am I doing enough to minimize it?  Should I tell anyone?”

“Did I get glutened?”  And if that is the case, I go into an internal tirade against myself about why I wasn’t more careful and also apparently, all knowing, about where secret gluten could linger.

“Am I taking bad supplements or not enough supplements?  Is this hormonal?  And further more, is it even fair that a woman’s cyclic hormones should make dealing with autoimmunity that much harder?”

“Am I not resting enough?  Should I exercise more?  Or did I push too hard?  Am I working too hard?  Am I dealing with stress poorly?  Is it even possible to eliminate more stress?”  And that last question is really important, ’cause seriously, did you wake up on planet Earth today?  Could the place be anymore flipping stressful?  Speaking of waking up, when I’m dealing with a set back, every darn morning I wake up thinking, “Is it better?  Am I better today?  Will feeling decent last until after breakfast?  Will it come on by lunch?  Will I be wrecked again by dinner?”

I traveled recently, so I think, “Maybe that was the last straw?”  And if that is the case, I am overwhelmed by depression.  I’ve traveled all over the world.  Being reduced to short, simple trips and still being so wiped out by them makes me so sad.  This thing that I love might be difficult from here on and it doesn’t seem fair.

And the worst question of all for me, “Should I even try to see the doctor?”  This thought alone actually makes me feel even more hopeless and depressed.  I fear the possibility of multiple appointments and tests and being told, “Nothing is wrong.  You worry too much.  Let me prescribe you some anti-anxiety medication.”

Set backs are different for every AIer.  Mine feels like a racy, jittery inside.  A floating, tingly feeling to my head that comes and goes.  Trouble with sleep.  Occasional moments where I just can’t process information.  A tight throat and sore tongue, it feels a little tough to swallow.  The return of tummy pains.  And I’m tired, but I feel that I must will myself through any fatigue.  Truthfully, I’m afraid to stop too long.  The absolute worst is the fear and anxiety.  Sometimes the only thing that helps is to tell my husband I am scared and let him hold me.

Hopefully I will put the pieces of the puzzle together and get passed this set back quickly.  In the mean time, I try very hard to not be scared . . . it frees up alot of time to be brave.

What’s a set back like for you?  Do you have special tips for dealing with one?

About Angie Alt

Angie Alt is a co-founder here at Autoimmune Wellness. She helps others take charge of their health the same way she took charge of her own after suffering with celiac disease, endometriosis, and lichen sclerosis; one nutritious step at a time. Her special focus is on mixing “data with soul” by looking at the honest heart of the autoimmune journey (which sometimes includes curse words). She is a Certified Health Coach through the Institute for Integrative Nutrition, Nutritional Therapy Consultant through The Nutritional Therapy Association and author of The Alternative Autoimmune Cookbook: Eating for All Phases of the Paleo Autoimmune Protocol and The Autoimmune Wellness Handbook. You can also find her on Instagram.


  • […] Dreaded Set Back can now be found HERE, at Autoimmune Paleo, where I and my blog partner, Mickey Trescott, now blog.  Thanks for […]

    • Teresa says

      This was the perfect time for me to read this. I have been gluten/dairy free for a year and a half and on AIP since July 2018. I too, research, read, study everything about AIP. Although I feel better I still have sad, dark days. Thanks for letting me know that I just can’t give up. It will get better

  • Kristal says

    So happy I came across this at this moment. My laundry list is Guillain-Barre Syndrome, Hashimoto’s, Hypothyroidism, Arthritis and, most recently (2017) Multiple Sclerosis. For about five months, I’ve been battling chronic GI issues, but was too anxious and uneasy about adding to the list. Yesterday, I finally went in and received the whole lab workup, with immediate confirmation that I’m bleeding internally somewhere along the line. And now I wait, with bated breath, for the next ailment I’ll have to forever write on those damn medical forms. Thanks for helping me feel less alone.

    • Angie Alt says

      Kristal, I’m so sorry to hear about all you’re facing, but I’m so happy that this helped you feel less alone.

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