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National Autoimmune Diseases Awareness Month

posted on March 21, 2011 by

March is National Autoimmune Diseases Awareness Month so I would like to help spread a little awareness on this often misunderstood and under-recognized epidemic.

Do you know your AQ?  AQ is a play on IQ and stands for Autoimmune Quotient.  It’s about knowing how likely you or a loved one is to develop an autoimmune disease based on the prevalence of these diseases and your family history (click here to learn more).

I happen to have 5 autoimmune diseases: celiac disease, dermatitis herpetiformis, Graves’ disease AND Hashimoto’s thyroiditis (yes, it’s possible to have both!  Mary Shoman wrote an article on this topic on About.com and you can read that here) and lastly, I have psoriasis but thankfully, it has been in remission for 20 years.

As you can probably imagine, I’m deeply concerned about developing more autoimmune conditions and this is why I have been very aggressive over the past couple of months about healing my intestinal barrier with the help of Dr. Vikki Petersen and her wonderful team at HealthNOW Medical Center.  I admit that at one point I wasn’t 100% sure that I was going down the right path in this approach (because if it were true, then why wouldn’t my gastroenterologist have told me all this information?), but all doubts were quickly erased after I read the following article by Alessio Fasano, MD, Medical Director, Center for Celiac Research at The University of Maryland:

“Zonulin and Its Regulation of Intestinal Barrier Function: The Biological Door to Inflammation, Autoimmunity and Cancer.” Physiological Reviews, January 2011

If you or a loved one has any autoimmune disease (even if it doesn’t include celiac disease), I really cannot encourage you enough to download the above article, print it, read it and share it.

During National Autoimmune Diseases Awareness Month, the American Autoimmune Related Diseases Association is asking supporters to take notice of the 50 million of our friends, family, and co-workers who suffer every day with one or more of the 100+ autoimmune diseases and introduce you to the “We are 50 Million” campaign.

“We are 50 Million” will spotlight autoimmune patient stories from around the country answering the question, “How Many of the 50 Million Does Your Family Represent?”  The answers to this question highlight important facts about autoimmune diseases which everyone should be aware of.  Supporters of this mission are also encouraged to text A-A-R-D-A to 20222 to donate $5 for the benefit of AARDA research by the Mobile Giving Foundation in order to help future research.

Here are some facts we should be discussing with our loved ones:

  1. 50 million Americans have an autoimmune disease comprising a major U.S. health crisis
  2. There are 100+ autoimmune diseases, celiac as we know being one of them.  Other diseases include: lupus, Crohn’s disease, Addison’s disease, vasculitis, vitiligo, rheumatoid arthritis (RA), and ulcerative colitis.
  3. Autoimmune diseases tend to “cluster” in families, for example, if your grandmother had rheumatoid arthritis (RA) or lupus, you could be at greater risk for developing an autoimmune disease.
  4. Less than 13 percent of American’s can name an autoimmune disease and yet it ranks as deadly as Cancer and Heart Disease.
  5. Autoimmune diseases target women 75 percent more often than men and they are one of the top ten killers of women under the age of 64.

For more information visit the official website at www.aarda.org or find AARDA on Facebook.

You can also visit http://www.westglen.com/online/18812.html to watch a special announcement from AARDA.

Do autoimmune diseases run in your family?


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Comments

  1. glutenfreeforgood says
    March 21, 2011 at 2:05 pm

    Great post, Heidi-girl. And so full of good information. You're on a roll!

  2. Stacy says
    March 21, 2011 at 2:23 pm

    I was just diagnosed with Hashimoto's Disease after being misdiagnosed for 11 years as only hypothyroid and now my thyroid TSH is too low (indicative of Graves' Disease) Can a gluten-free diet improve this type of autoimmune disease, or is it just for the diseases that wreak havoc on the bowels? Thanks!

    • Adventuresgfmom says
      March 21, 2011 at 3:02 pm

      Hi Stacy!

      No, gluten-free diets are not just for people with bowel disease, this is a major historical misconception. I happen to be an atypical celiac, meaning that I do not exhibit the "classic" symptoms of diarrhea, constipation, cramping, bloating, malabsorption, etc., in fact, most people with celiac disease do not present with the symptoms that are most often talked about (the GI issues).

      That being said, I found the following on the National Foundation for Celiac Awareness website (you can read the full article here):

      According to the University of Chicago Celiac Disease Program, introducing a gluten-free diet in patients with celiac disease, with subclinical thyroiditis (only increased autoantibodies but no disease yet) is effective in most cases in bringing autoantibodies down to normal within two years. According to the study, if a patient with celiac disease already has diagnosed thyroiditis, then the gluten-free diet might not be effective.

      I was diagnosed with Graves' and Hashimoto's (I had my thyroid ablated for the Graves') before I was diagnosed with celiac disease and going gluten-free did not reverse my thyroid disease because it was already too late (I wrote a post about part of my thyroid journey here. Had I known I had gluten sensitivity long before the autoimmune thyroid autoantibodies appeared (and went on a strict gluten free-diet), I believe there is a very good chance that I would still have my thyroid today. Early detection is crucial.

  3. Nicole says
    March 21, 2011 at 4:37 pm

    Hi Heidi,

    I was diagnosed with 3 autoimmune diseases in 2010- type 1 diabetes, grave's disease and celiac disease. Each has it's own unique challenges. I understand your concern about being diagnosed with an additional AI disease. I now follow a very strict, anti-inflammatory diet, manage stress and try to stay positive! Hang in there, you aren't alone. If I can find a blessing in any of this, it's that this journey has made me more empathetic towards those who are affected by disease and difficulties. I have a better understanding of their plight and the difficulties they face. It's changed my thinking.

    I'm grateful for your blog, thanks for sharing your story and for all the useful information you pass on to us regularly!

  4. Danielle says
    March 22, 2011 at 1:21 am

    Thank you!!

  5. Jeri says
    March 22, 2011 at 5:46 am

    Yes, I have Celiac and Hashimoto's. Several members of my immediate family have hypothyroidism. I have a sister with Lupus and my dd18 has lived with type one diabetes since she was 9.

    I am as you Heidi. I have no GI symptoms/pain associated with Celiac. However, I'm surprised that given I've done everything I've been told to do by doctors, taken the supplements they recommend, been gf since last summer and I still don't feel better. Chronic fatigue, insomnia, unexplained pain, etc still plague my every day.

  6. Nikki says
    March 22, 2011 at 4:21 pm

    Thank you for all the valuable information you have on your blogs!! I am fairly new to Celiac and Gluten Sensitivity so all the research and previous blogs are a big help.

    For the last 6-9 months my two year old son has been having stomach issues, extremely smelly poops, occasional fevers, swollen lymph nodes. He has always been a really fussy eater but he has lost 3.5 lbs in last 3 months. His doctor was very receptive to doing a test for Celiac; his blood work showed elevated levels for the following: lgG, Sed Rate, Monocytes. Pediatrician suggested we put him on gluten free diet right away. Last week he again ran temps of 103 for a couple of days. We saw the GI specialist yesterday (3/20) and he scheduled a biopsy right away for 3/23, also asked us to put the little man back on Gluten till then. He is obviously concerned about something and did not want to wait any longer to do the biopsy. In your experience is it ok that he has been off of Gluten for a short while, given that he is being put under anesthesia I'd hate to have a false result due to the short hiatus from gluten. Of course we are also anxious to know what is causing him to lose the weight.

    My apologies for such a long post, any thoughts/feedback on this situation would be much appreciated.

  7. Pat @ Elegantly, Glu says
    March 28, 2011 at 3:47 am

    Eleven years ago when I was diagnosed celiac, the symptoms most often described were intestinal- and bowel-related. Of course, there was a very long list of other possible symptoms, but mostly the impetus to follow the diet was for bowel health. Now I realize that my long-term issues with aching joints, sinusitis, memory and balance problems, not to mention neuropathy and vision concerns, are quite possibly also related to the celiac disease. I am so glad to see more research being done!

    Thank you, Heidi, for once again helping to make some complex info more understandable! You really encourage me to follow through when I have questions instead of just putting up with no answers!

    Hugs —

    Pat