Guest Post by Angie Alt: Autoimmunity, AIP, & Family Life

November 27, 2012 in Categories: by

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Angie Alt is wife, mother, world traveler & blogger.  She’s also a warrior in the autoimmunity war.  Angie confronts three autoimmune disorders each day, including Celiac Disease, with powerful management techniques like AIPaleo & the Paleolithic lifestyle.  She blogs regularly about the emotional side of tackling autoimmunity, adopting Paleo, and how it impacts her, her family, & their way of life.  You can read more by Angela Alt at her blog and connect with her on Facebook.

I’ve been on a long, looong journey with autoimmunity.  It started about 12 years ago and in February of this year, I believe I finally got the full picture when I was diagnosed with Celiac Disease (in addition to two other previously diagnosed autoimmunes.)  I’ve been a mother that whole time and married for seven of those years.  My entire autoimmune journey has been conducted with a family at my side.  I’ve been thinking a lot recently about how chronic illness (as autoimmune disorders often lead to) and management strategies, like AIP, impact family life.

 As anyone with an autoimmune disorder knows, the level of illness changes over time.  At points I was keenly aware that something was wrong as I struggled with flares of painful and confusing symptoms and at other times, things would seem to have completely disappeared.  For me, the last three years were the most extreme and the rollercoaster ride was grueling not only for me, but also for my husband and daughter.

 My sickest years coincided with our family living in West Africa for my husband’s work.  The bewildering, irregular symptoms were virtually impossible to nail down there and resulted in three medical evacuations.  Even more disheartening, I found little to no help from the mainstream medical community each time I returned to the U.S.   It was intensely stressful and frightening for all of us.  I felt ashamed and guilty for putting my husband and young daughter through such traumatic events over and over.  As my shame and guilt grew, so did my emotional distance from the two people who cared about me most.

 Last October, it became clear that I had to return to the U.S. permanently and dedicate myself to finding an answer.  It meant that my illness was effectively ending my husband’s work abroad.  While he knew this was the right decision, it was a complicated transition.  Quite obviously, it was hard on our marriage and parenting.   None of it helped my guilt and shame.  I blamed myself for putting my family in such a spot, especially as I saw doctor after doctor and still got no answers.

 On the other side, my husband felt helpless.  It was clear to him that I was steadily becoming sicker, but without clear answers he did not know how to address the situation.  He was privately afraid of what might be wrong, but nervous to express his fears.  As he struggled to balance his career and role in the family, with the pressures of taking care of my needs, he became insecure about how to label it for our family and friends.  I had previously been a solace for him, but now I was a source of anxiety.  His guilt and shame over these negative emotions also grew and widened the gulf between us.

 That “in-between” was inhabited by our daughter.  Naturally, we did everything possible to shield her from what we could and help her roll with the punches where we couldn’t.  Nonetheless, autoimmunity sometimes looms over a whole family, touching every member.  She ended up attending multiple schools for the third and fifth grades, in large part due to our attempts to discover and treat my illness.  We celebrated her 10th birthday just days after I got out of the hospital (with chronic appendicitis and endometriosis complications).  The photos of that day show me with dark circles under my eyes and a gaunt body.  I actually missed her 11th birthday party, because I was again in the hospital, suffering through what I now know was a Celiac crisis.  Most of the time she has been incredibly strong and flexible, but occasionally she tells us how hard it was to walk through such a scary period not knowing what was wrong with me or what her place was supposed to be in it.

 With all of that build up, you can imagine the flood of relief for all of us when I was diagnosed in February.  Knowing was half the battle for our family.  The more I researched, the better we understood the whole autoimmune process and so much that was unresolved for us came together.  In May, after three months of struggling to get my health on track with a traditional gluten-free diet, I discovered The Paleo Mom & started AIP.  It was an incredible breakthrough in my healing.  Not only did we understand autoimmunity, but we also began to understand nutrition’s role as a serious way forward.

 As I have passionately followed it for nearly seven months now, it has changed our lives again.  I’ve come to understand that it will not “cure” me, but it has had amazingly positive impacts on all three of us.  For starters, I am 1,000% healthier than I was a year ago.  Being healthier has allowed me to begin dealing with all the guilt and shame.  Letting that go has meant renewed connection to my husband and daughter.  No more brain fog and debilitating fatigue means we can begin to process together what chronic illness has meant and mend the damaged bridges.

 For my husband, a return of my emotional stability, in particular, has allowed him to open up and our marriage to heal.  It also resulted in him adopting Paleo 80/20 and dropping dairy entirely.  When I discovered a new functional medicine doctor, he saw her too and learned about Vitamin D & magnesium deficiencies he needed to treat.  He’s lost weight and restarted his beloved fitness routines with great results.

 For my daughter seeing me slowly return to health has meant that we can enjoy more time that feels secure and less unpredictable in the face of autoimmune flares.  Gradually, we have worked to deal with each upsetting moment from our past.  And while convincing a 12 year old to drop a SAD diet is not the easiest thing on the planet, she got on board after we finally drew a connection between migraines she has suffered since she was a toddler and gluten.  She is now roughly an 80/20 Paleo girl too, with 99% avoidance of gluten at all times.  The results have been amazing.

 We plan, prepare, and clean up countless meals together every week now.  My daughter has a better understanding of real nutrition than almost any child her age, for that matter, than most adults.  We have a 100% gluten-free household and my family’s support on that non-negotiable has been humbling for me.  We’ve discovered new treats together and stretched ourselves in an effort to heal from the negative impacts of autoimmunity.

 This is actually just a small silver of the way autoimmunity and AIP have altered our family life.  I can’t say that I am 100% able to view this journey as a blessing, but I can say that our bond has actually gotten stronger despite the serious pressures.  We’ve weathered some major storms together as a family and managed to come out on the other side with some significant rewards . . . the gifts of health and each other.

Comments

As a mother of two boys, married and living with an AI disease, I understand the often bumpy and emotional journey you are on. I’m glad you have found your way to better health and healing and sincerely wish you all the best.

Great article! I too struggle with 4 different autoimmune issues (sjogren’s, celiac, hashimoto’s and endometriosis (not technically autoimmune but ACTS like autoimmune). It’s great to know it eventually does help. Now on day 23 I think with Whole 30 AIP and FODSMAP.

Keep it up Jeanine! I promise it works. My gluten antibodies went from 161 to 4 (w/ 0-3 being normal) on AIP. My doctor is Alessio Fasano (leading Celiac researcher) & he told me this same approach was best for the Hashi’s too.

Thanks for sharing Angie! My husband as well has joined me to make our house 100% celiac safe. He doesn’t even seem to mind that most of the food in the house is AIP compliant – but I think that is because I do most of the cooking!

I have been enjoying reading your blog and look forward to see what you share here as well. :)

Mickey

Good to read you’re making such progress w/r/t your AI situation. My brother suffers from it as well. I shared the below podcast (the section that has to do with parasites and our immune systems in particular) and he really got a lot out of it. Maybe you will too. If nothing else, it’s really entertaining.
I have nothing to do with RadioLab btw. I’m just a fan.

http://www.radiolab.org/2009/sep/07/

Great article! So glad you are feeling better. I have Hashi’s, and follow a gluten free diet as a result. It is one of two auto-immunes for me (other is Vitiligo). I have been going through a huge Hashi’s flare up for the past month and went Hyperthyroid, my antibodies are >3,000, and it’s been really hard. I don’t have Celiac, but I do have gluten sensitivity and stay away from it also because of the Hashi’s…I will check out the AIP information. I just discovered the Manna bread that I though was gluten free was not, and I’ve been devouring it for a few months now, I obviously need to be more careful. Ugh ;)

Thanks!

Lucy

You are speaking straight to my heart here. Thank you for sharing. And thank you for keeping the hope alive for me, for a healthy and happy family. All the best to you.

Erin, you are so welcome. Having someone comment that I am “speaking straight to my heart” means so much to me. I really, really want people to connect that way. AI is so tough, knowing that others have been there & come out the other side is huge. Best to you!

Both of your posts here have been so inspiring to me as well! Thank you for sharing. I have very similar issues with even a minute trace of gluten setting off mutliple debilitating symptoms that last for weeks. I have also developed cross-reactions to oats rice, and dairy that are almost as bad as gluten. Have you been able to totally avoid exposure to gluten and cross-reactors? I sometimes question whether the AIP is worth it since it seems like 3 months of healing on the AIP can be undone by the most miniscule accidental exposure.

Holly, thank you so much. I am so glad my story was inspiring for you. I have been able to totally avoid gluten exposure & cross-reactors, but I am incredibly strict. I almost never eat out & I cook all fresh food literally every day. I don’t really eat anything from a can or box (tuna, I guess & then carefully, lots of tuna has soy). AIP is really hard work & can be time-consuming, but for me, it is worth it. I believe as more people “make the switch” to Paleo diets, it will get less difficult.

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