How SCD Saved Megan From Undiagnosed Primary Immunodeficiency Disease (PIDD)

by Jordan Reasoner

SCD Saved Megan PIDD

In the fall of 2010, I got an email from Janet, a concerned mother with a very sick daughter, Megan. She had our book and was starting SCD – but Megan was really struggling and they were desperately hoping the diet would work.

Janet and I talked many times over the next few months as Megan battled leaky gut, die-off, yeast, fatigue, and a laundry list of other awful symptoms. But after the new year came and went, I didn’t hear from her again… and I was afraid things weren’t going well.

Nine months later, Janet emailed me with Megan’s incredible success story. She shared her courageous recovery, and eventual diagnosis of Primary Immunodeficiency Disease (PIDD). As it turns out, April is PIDD awareness month… so the timing couldn’t be better for Megan’s incredible story. I really think you’ll enjoy Megan’s story of courage and healing.

But more importantly, Megan is driven to raise awareness about PIDD and how SCD can help. Without further delay… here’s Megan:

[Enter Megan]

My name is Megan Bringe and I am a college student who has Primary Immunodeficiency Disease (PIDD). April is PIDD Awareness Month – so, I am reaching out to you to educate the SCD community about PIDD and share my SCD success story. I have had lifelong chronic health issues going from doctor to doctor until an Immunologist discovered I do not produce key antibodies needed to fight infections – I was diagnosed with PIDD in March 2011 (age 21). There are 150 types of PIDD and the type I have is called Common Variable Immune Deficiency (CVID). Most persons diagnosed with PIDD deal with chronic GI complications because we are unable to fight infections including in the GI tract (because we do not produce key antibodies needed). I am very happy to report that SCD has now allowed me to control my GI symptoms caused by my PIDD.

1.) Why did you start SCD?

I started SCD in the fall of 2010 at age 20 – prior to my diagnosis of Primary Immunodeficiency Disease (PIDD). I had struggled with lifelong chronic health issues and nearly lost my life to H1N1 (Swine Flu) in the fall of 2009. My health significantly declined after H1N1 (Swine Flu) – all of my lifelong health issues spun out of control – GI issues, thrush/yeast, fevers, headaches, brain fog, body aches, inflammation, and more. I felt hopeless – even though I had been eating “gluten free” for months due to an earlier diagnosis of Celiac (common among those with PIDD) my health just continued to decline. One of my physicians in Ann Arbor, MI gave me the book Breaking The Vicious Cycle when she realized just eating gluten-free was not helping my Celiac, my GI complications, or any of my many other health issues. I read the book first and then my Mom read it – so many things about SCD made sense to us and we had nothing to lose by trying it. The first few weeks after reading the book, we felt a little overwhelmed because we were not sure where to start – thank goodness we went online and found your book and website “SCD Lifestyle.” It helped us break SCD into phases and steps we could easily follow. We are so grateful for the support you both provided us.

2.) How has SCD changed your life?

The most amazing part of SCD was once my digestive complications were under control for the first time in my life – I believe it allowed my Immunologist to figure out the root cause of my health problems leading to my PIDD diagnosis. In 2011, at age 21, I was diagnosed with Primary Immunodeficiency Disease (PIDD) – a defect of my immune system – clearly explaining my life of chronic health issues. Most people know PIDD as the same disease as the “Boy in the Bubble” who was missing most of his immune system lived in a bubble and later died. There are 150 types of PIDD with various combinations of missing antibodies. The type I have is called Common Variable Immune Deficiency (CVID), which means I am missing part of my immune system because I do not produce antibodies that fight infections. I now must give myself antibody replacement infusions (antibodies come from blood plasma donors). I will do my infusions every 5 days for the rest of my life. Unfortunately, because I went undiagnosed for so many years it has led to complications I may not be able to reverse. Prior to finding SCD, many of my doctors prescribed antifungal medications because I (and most others with PIDD) battle chronic GI complications/diseases, including chronic episodes of thrush and yeast. I have been on SCD for 1 ½ years and I no longer take antifungal medications. I am 1 year since the PIDD diagnosis and my antibody replacement infusions. I believe I am improving with a combination of SCD and my antibody replacement infusions. I am hoping to open the eyes of others with PIDD to SCD – I recently attended a bi-annual conference in AZ for people diagnosed with PIDD. I actually felt like I was one step ahead of others with PIDD in relation to GI issues – because I follow SCD. I even shared SCD and your website with another person I know diagnosed with PIDD and the combination of SCD and antibody infusions has changed her life too.

Another way that SCD has changed my life is that I don’t have to think about my digestive system every second of every day anymore. Throughout my life, I would eat a meal and feel bloated, sick, constipated, nausea, and dealt with thrush or yeast. Now, I can eat without worrying – it is a huge relief and makes me feel like a normal person. There are SO many delicious recipes on SCD – my favorite is coconut flour muffins. YUM!

3.) What is your #1 piece of advice you would give someone getting ready to start the diet?

We felt a little overwhelmed at first when starting SCD but then discovered a HUGE SCD community online. We ordered your book “SCD Lifestyle” and it really helped us with getting started and phasing in foods. In no time, we had discovered your many online friends, such as No More Crohn’s, Comfy Tummy, etc. We learned so much from everyone sharing their stories, success tips, and so many delicious recipes. You don’t have to get stuck eating the same thing over and over. Try making new recipes – there are ALL sorts of wonderful SCD recipes on the internet. We do not even think of it as a diet anymore – SCD is second nature to us.

Also, do not give up! The first 30 days are the most difficult – mostly because you are craving all the bad foods you were putting in your body that caused you so many health complications. In just days or weeks, you will start to feel so much better! Another very important part of the diet is phasing in yogurt – it seemed hard to make yogurt at first – but, once you do it a few times – it seems so easy to make now.

I am very lucky that my whole family has embraced SCD! We even have a new tradition – my Mom makes a pre-Thanksgiving SCD dinner – so that I have dishes to take to all our family parties the next day. NO awkward moments when I show up with delicious butternut squash pie and other SCD goodies made the night before (no one has a clue its SCD). For those of you just starting out, try to get family or friends to help you with the diet. Or reach out to others – I know when I was very sick and could not cook for myself my Mom e-mailed you both to help her with questions she had about SCD. My Mom is so grateful to you both for your help.

4.) How has your new-found level of health changed your life?

As I shared before, it has been a 21-year journey to my diagnosis of PIDD and I know SCD cleared up symptoms that allowed my Immunologist to think about testing me for PIDD. I truly believe had I not been able to get my digestive health under control with SCD – my Immunologist would have never discovered my life-threatening disease of PIDD. I believe SCD saved my life. I believe it could change more lives of those who live with PIDD. I have just started to have others in the PIDD community reach out to me and my family to learn more about SCD – and I hope my SCD success story will encourage others with PIDD to try it too.

I am so thankful for SCD and the entire SCD online community for helping me get part of my life back. For the first time in my entire life, I can enjoy food! My Mom has developed some pretty wicked recipes too – I think eventually we will put her recipes online. I am back in college after being in the care of my family for over 1 ½ years – thanks to SCD, my PIDD diagnosis, my antibody infusions, and the loving support of my family.

If you would like to learn more about PIDD (also referred to PID or PI) – please search Immune Deficiency Foundation (IDF) www.primaryimmune.org or Jeffery Modell Foundation (JMF) www.info4pi.org.

Sincerely,

Megan Bringe – SCD Healthy 1 year, 6 months!!!

[Back to Jordan]

Thank you Megan. You are incredible… truly inspirational. I’m so grateful to connect with you and raise awareness for PIDD.

As I’ve learned more about this disease, I discovered the critical antibodies Megan is missing are extracted from donated plasma at a lab. The lab cleans the plasma and ships it to people like Megan with this immune defect and she infuses a dose of antibodies (immunoglobulin) every 5 days for the rest of her life…

Please donate plasma to help people like Megan enjoy this precious life.

In good health,

P.S. – Share this post. It’s critical we raise awareness about this condition for others living undiagnosed, like Megan did for so long. Thanks 🙂

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About the author

Jordan Reasoner Jordan Reasoner is a health engineer and author. He was diagnosed with celiac disease in 2007 and almost gave up hope when a gluten-free diet didn’t work. Since then, he transformed his health using the SCD Diet and started SCDLifestyle.com to help others naturally heal stomach problems. You can check out his story here and find him on Google+, Facebook or Twitter.

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{ 5 comments… read them below or add one }

Ali April 17, 2012 at 9:46 am

Wow wow wow! I have cvid also, and have had no help from te infusions and have been getting sicker and sucker with my colitis, celiac, hashimotos, and liver problems. Scd still is not fully helping! I would live to be able to talk more to Megan, as I have never met anyone else with this issue! Thanks!!

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Maria April 19, 2012 at 7:25 pm

Thank you SO much for sharing Megan!

We tried SCD for over a year just by reading “BTVC”…. it was not until I stumbled upon the SCD Lifestyle site that healing REALLY and truly came.

You have a fantastic mom!!!!

🙂 Mama Maria

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Mary Lewin January 21, 2013 at 3:19 pm

I have what I believe is PIDD. My mother had it. I have gut dybiosis and malabsorption and worsening problems w IBS, alternation D & C.
I am trying to find a good immunologist who can help me with dropping IGG subclasses and low IGM, but relatively high total IGG. The immunologists will not tell me what’s wrong with me, just say not a candidate for infusions. I have elevated sedimentation rate and positive HLA-B27.
Thanks for any help you can provide.
Mary

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Mike February 17, 2013 at 2:59 pm

For a good immunologist check with the Immune Deficiency Foundation (primmaryimmune.org). They have chapters all over the country for people with PID’s.

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Mike February 17, 2013 at 3:12 pm

I also have common variable and am currently having inflammation in my small intestine (taking budesonide) and villous blunting, with a similar pathology to celiac folks. Had diarrhea for 4 months. Xifaxin for bacterial overgrowth did nothing. Been fairly strict on a gluten/dairy/coconut free-paleo/low fodmap diet for months. I would be very curious whether you (Megan) had biopsies of small intestine, and what they revealed. I seem to be doing better only after taking betaine HCI with every meal, and still think some form of low fodmap, SCD or paleo diet is best, but may need to get inflammatory lymphocytes under control with something like infliximab or azathioprine.

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