Living Gluten Free

Posts tagged ‘medical’

Autoimmune Diseases and Migraines


I’m writing this because I know a lot of people who suffer from migraines and I had mentioned to a friend on Facebook (that I have never met) about having Sjogren’s Syndrome and migraines, she also suffers from migraines and she mentioned it to her doctor and she found that she also has Sjogren’s Syndrome. So maybe this might help someone else bring this up to their doctor and ask about the possibility of having an autoimmune disease that isn’t often talked about. It doesn’t hurt to ask especially if your migraines are not getting better, it could be something else along with it.

It is estimated there are currently over 100 different autoimmune disease out there and that it is one of the top reasons why there is so much illness in the United States. As many of you that have followed me know I have 4 autoimmune diseases. One autoimmune disease that I have is Sjogren’s Syndrome, it is the most undiagnosed autoimmune disease out there. I should know, I have been tested for everything else but once they found I had Celiac Disease and Fibromyalgia they started to pay attention to the other symptoms I complained about and tested me for Sjogren’s Syndrome.

So briefly I will get into autoimmune diseases, the body’s immune system goes crazy. Normally it  protects the body against foreign invaders like viruses and bacteria.  When it becomes confused, the immune system begins to recognize organs and tissues as invaders and begins to attack the body and healthy organs.

In the case of Sjogren’s Syndrome, the antibodies go to  war on the moisture producing glands and mucus membranes.  Unfortunately the main targets are these moisture producing glands but the entire body is affected and systemic symptoms can be disabling for some patients. Think about this our bodies are water based so this really messes with your body.

Now with Migraine Disease there are more women than men who suffer from them and  90% of Sjogren’s patients are female. So is there a link? Sjogren’s Syndrome is characterized by periods of increased disease activity called a flare. Flares can be caused by many things, stress, physical injury, lack of sleep the list goes on.. So these flares can cause migraines and migraines can cause flares Also medication used for Sjogren’s Syndrome can also often act as triggers for migraines and migraine medication can also cause Sjogren’s Syndrome to flare.

My team of doctors explained it like this to me. My body is in constant fight mode. It never truly rests. Its like on high alert, fighting all the time. And there isn’t much I can do about it, now I’m by no means complaining. If you have read some of my post I have come a long way from 2 years ago. I used to be on 14- 15 med’s and now I’m down to 5. I’m up to 7 supplements but that’s ok. My blood pressure has been so good they finally have lowered my med’s that hasn’t happened in 10 years. I’m at a great weight, I eat healthy and I have had only 2 migraines in the last couple of months. Life is pretty good.

Here are a couple or sites to get more info on

http://www.sjogrens.org/

http://migraine.com/blog/migraine-triggers-and-comorbidities-sjogrens-syndrome/?uuid=5006bb9b82cc4162083477

http://www.sjogrensworld.org/tepper.htm#Headaches

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Anyone know where I might find a good wig?


Some time ago I saw a red spot on my head, my hairdresser who is my husband’s cousin thought it could be irritation from a hair color I used.  Well we found two more red patches on my head and no hair is growing in the red patches. Long story short I can now add Alopecia Areata to the list of issues I have. Alopecia Areata is a condition in which the immune system mistakenly attacks the hair follicles. Sound like my Sjögren’s syndrome which is another chronic autoimmune disease in which people’s white blood cells attack their moisture-producing glands. My body just doesn’t like me anymore.

Alopecia Areata usually starts with one or more small, round, smooth bald patches on the head and can eventually cause complete hair loss on the scalp or even on the entire body (a condition known as alopecia universalis). Now that might be Ok not to have to shave my legs anymore or under my arms, right? There is no cure for Alopecia Areata. Most, but not all, of the research reports that describe patients with alopecia and celiac disease also report that the patients’ hair grew back after they adopted a gluten-free diet. Hair can grow back in or fall out again at any time, and the disease course is different for each person. So if you all have been following me you know that over the years I have had my hair fall out and I have lost my eyelashes several times, but now I have the red spots with no hair.  I know I am going to fall into the group of not all instead of most that get their hair back. Life is a trip, everyday is a new adventure. Bring it !!!!! LOL

Is Celiac Disease the causes of other health issues?


There is a lot of personnel information in here and a lot of medical information that I have collected while trying to figure out things that happened health wise to me in the past and linking it to my diagnoses of Celiac Disease in February of 2010. I am not a medical doctor and I don’t pretend to play one. The information I am sharing is only to try to help someone else sitting there going through issues and thinking they are alone. I also don’t want to scare people who are newly diagnosed, again this is information I have collected and what I personally went through

Let me also start by saying that I don’t want anyone to feel bad for me. Things happen for a reason and I do truly believe that. I am exactly where I am supposed to be at this time in my life. Oh one more thing, throughout this blog you will see and read my little sarcastic remarks because well that’s just me.

Most people can just have Celiac Disease or are gluten sensitive and that’s it, some don’t even have symptoms. People who have Celiac Disease do tend to have other autoimmune diseases (Of course we do, why not!)  In which the immune system attacks the body’s healthy cells and tissues. They feel the connection to this may be genetic (Don’t tell my mother, she is still mad because I told her Celiac Disease is genetic. LOL) 14% of the celiac patients had thyroid disease, 6.4% of adults with type 1 diabetes can have celiac disease.

Some of the other autoimmune diseases are (Let me get this one out-of-the-way because YES I have it) is Sjögren’s syndrome, a condition in which the glands that produce tears and saliva are destroyed. Now I have been suffering from dry eyes and dry mouth forever but it wasn’t until I was diagnosed with Celiac Disease did they pay attention to all my other symptoms.  The other diseases they feel are connected to Celiac Disease are Type 1 diabetes, Autoimmune Thyroid Disease, (which I mentioned earlier) Autoimmune Liver Disease (My doctor is on the fence with this one, I must have liver scans every 6 months) Rheumatoid Arthritis and Addison’s disease, a condition in which the glands that produce critical hormones are damaged.

Gluten is also linked to many psychiatric and neurological diseases (OK ready, here we go) such as anxiety, schizophrenia, depression, dementia (My friends tell me I have the start of this), migraines (I have had them my whole life, not fun at all), epilepsy, and neuropathy (nerve damage). Now I do have Fibromyalgia which causes pain and tender points in joints, muscles, tendons, and other soft tissues. Is this related to Celiac Disease some say yes others say no.

There are many other health issues that some say are caused by Celiac Disease especially if untreated.  Cancer, miscarriages, infertility and early menopause are also linked to Celiac Disease. I had my first child at 21, a beautiful, healthy boy and delivered in several hours. No biggy, I can do this again. When he was 4 I got pregnant and lost that pregnancy around 4 months.  Over the next 2 1/2 years I lost 2 sons’ that were born premature. Now I wonder did it have anything to do with my undiagnosed celiac? Not sure, I don’t know or really want to know now because you can’t change the past you can only look to the future.  Finally after getting pregnant yet again, I had a surgery called a Cerclage (they suture the cervix shut) and it is usually performed between weeks 14-16 of pregnancy.  These sutures are removed between 36-38 weeks to prevent any problems when you go into labor and for extra care my doctors confined to bed rest after my surgery (That was not fun).  Unfortunately, I couldn’t keep anything down and had to drink Ensure shakes (The smell of them still makes me gag) to get some kind of nutrient in me. I gained 20 lbs and lost 18 of it before the delivery. By the heavens above my youngest and last child was born, a healthy baby boy.

So I can only imagine how overwhelming all this information is, I know it was for me at first. Again I don’t want to scare anyone. I was just giving information from my research over the last year and a half.

Now I was always or at least I thought I was very proactive when it came to my health and I would ask the doctors questions and question their test or medications that they gave me. I had never heard about Celiac Disease and it was never brought up in any conversation with any doctor over the years (25 at least). Since being diagnosed I find that I am not the only one who suffered for most of their lives. Most of us in are 50’s (Yes I will admit to my age) are finding out we were misdiagnosed.

I wrote this blog because I am getting articles from so many people about the diseases and issues it can cause. I have shared this information with the hope that maybe one person will read this and go to a doctor with a little more information than I did or ask one more question than I did or at least won’t feel all alone like I did.

Websites that can be helpful when newly diagnosed with Celiac Disease


You will find that I am a research junky, I have tons of information saved. I thought theses sites were helpful when I was first diagnosed.

University of Chicago, Celiac Center.

http://www.celiacdisease.net/

Celiac Disease

http://www.celiaccentral.org/Celiac-Disease/21/

What is Gluten?
http://www.quickcare.org/misc/what-is-gluten.html

Hidden Sources Of Gluten

You will find gluten in items you wouldn’t think of

http://www.celiacsolution.com/hidden-gluten.html

Gluten Free Diet:  Author:  Frank W. Jackson, M.D.

List foods that are safe and those that are questionable

http://gicare.com/Diets/Gluten-Free.aspx

Confirmed Gluten-Free Drugs and Medications

http://gfmedications.com/

Gluten Free Registry. Type in city and state and it will give you safe gluten-free restaurants

http://www.glutenfreeregistry.com/

 

A list of gluten free prescription medications

http://celiac-disease.com/medications/#c

 

My favorite social networks

These are the best networks I feel if you want information, ask questions and find people who can give support.

Don’t Eat That: This social site is run by a great lady named  Jayne Aston, she runs several blogs with great information. There are a number of groups you can join based on your needs. Articles and videos are also on site and you can design your page yourself.

http://donteatthat.ning.com/

The Celiac Diva: This is another site run by another great lady who has a Facebook page where you can get tons of help and or she has an internet show which is very informative and she blogs

https://www.facebook.com/TheCeliacDiva

http://theceliacdiva.com/

Gluten Free Networks: Here is another site where you can join all kinds of groups and meet new people with similar needs. This site is run by a gentleman named John Libonati. Lots of great articles and information

http://network.glutenfreeworks.com/

Simply…. Gluten Free:  This site is great, the beautiful lady that runs this site is a television chef, freelance writer and cookbook author, so not only do you get great recipes you also get a lot of information. She also has giveaways which is really nice.

http://simplygluten-free.com/

Gluten Free Gigi: This site is run by yet another great girl, tons of product information, great recipes and she is also a food writer and a contributor for Health Central, an online support and wellness community providing trusted information for a variety of conditions.

http://www.glutenfreegigi.com/about-gigi.html

 

How long did it take you to get diagnosed with Celiac Disease? Me, 25 years :(


Ever time I went to the doctor they had a reason for my symptoms. In my 20’s I had Colitis, 30’s Irritable bowel, 40’s Spastic Colon. At 49 it hit me and it hit me hard, I was sick all the time, lost my eyelashes, my hair was falling out and my doctor at the time said I had a bad sinus infection and put me on antibiotics. Thankfully for me he went skiing and the one day I felt well enough to go to work a colleague of mine was very concerned and suggested I see his doctor so I did. They could not  find any reason for all that was going on, they started by taking me off the antibiotics and sent me for test. When I still wasn’t getting better and made a trip to the emergency room they sent me to a Gastroenterologist. Then we got the news, so all these years did some heavy-duty damage. Tell me your story and how hard was it for you to get a doctor to help you, some times it helps to hear you are not the only one this happens to or that you aren’t crazy after all.  LOL