Celiac Support Group, Camano Island, Washington

May 31, 2016
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I recently started a support group for people dealing with Celiac disease, whether it be themselves with the disease or a family member.  Megan Bropleh is helping to get this group up and going.   I have an e-mail through the Celiac Institute’s website where people can  contact me, and this is how Megan got in touch with me to inquire about the group.  I’m so grateful she did.  She has a young son with Celiac disease and was looking for information and support, so she contacted me.  We connected, and I asked her if she’d be interested in helping facilitate the group.  She agreed and has been so helpful to me in starting things up.  This past month was our second meeting together, and we had another woman come who also was looking for information and support.  During our time together, we shared our stories about life with Celiac disease and the challenges we all face.  Our group plans also to have fun together with pot lucks, perhaps some outings, guest speakers, etc., all to help us to thrive instead of just survive this journey.

We talked about the complexity of the disease and how diverse the symptoms and problems are that come along with it.  I have found that if  the Celiac disease is diagnosed early before it does much damage, you can live a near normal life and things can heal.  But if you get diagnosed much later on in life and have had it all your life, you end up with a whole host of autoimmune issues and diseases.  There lies the problem!  Treating the other autoimmune issues, especially when there are more than one, can be very difficult.  I ended up with two others in addition to the Celiac disease–Hashimoto’s disease (thyroid autoimmune disease) and Sjogren’s disease (a rheumatoid condition that affects the eyes and mouth with severe dryness).   Sjogren’s is a disorder of the immune system that can be systemic, causing pain and inflammation. Difficulty in swallowing can also be a problem.  There is no cure, but it can be controlled.   The treatment is mainly focused on relieving symptoms.  Eye drops are given for the dry eyes.  If this is left untreated, it can lead to scarring on the corneas and even blindness if it progresses!  The dry mouth has to be addressed also, because that can lead to problems with tooth decay and loss and gum disease.  Regular dental visits and drinking a lot of water helps.  In my experience, avoiding sugar is also beneficial.

Virtually any autoimmune disease can come from having Celiac disease.  I have heard of it’s connection with multiple sclerosis (MS) and even lupus.  Celiac seems to manifest differently in each individual.   I have also heard it has over 300 symptoms that can occur, mostly while your still consuming gluten.  A lot of those symptoms disappear, however, when you get off the gluten.   And, people wonder why you don’t feel well.  Ugh!

So, these are some of the issues to be talked about in the group.  Becoming gluten-free is difficult all by itself (diagnosis and all), because you really have to be quite strict. Then, having these other autoimmune problems in addition can make it, not only complex but, frustrating and overwhelming to deal with at best.  I would encourage anyone struggling with this disease to get involved with a support group, either in person locally or online somehow.  It’s helpful to know your not alone.  There is a wealth of help and information out there.  The Celiac Disease Foundation a very informative website at: https://celiac.org where you can find a lot of help.
Remember, let’s try to thrive instead of just survive the journey. Be well my friends!

Iris

 

*For more Information on our Camano Island, Wa.  support group and times you can e-mail me at stanwood@celiac.org

 

Featured image is Megan, Mary and Iris

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