Living Gluten Free

Posts tagged ‘Living with Celiac Disease’

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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Do you have a plan if you have been glutened? I do


So if you have Celiac Disease or you are gluten intolerant or sensitive and eating gluten by accident makes you ill you need to have a plan on what to do when and if this happens. Why? Well because anyone who has gone through this (ME) will tell you it hurts and it ruins your day or can ruin a couple of days. It’s physically exhausting and mentally draining because you don’t know how long it will last.

The first time I accidentally ate gluten after being gluten-free I thought I was going to die, the pain was horrible (spasms) not to mention the bathroom issues also. My husband called the doctor and I was told to go to the emergency room, why? First because I was newly diagnosed and he wanted to make sure there were not any other issues and second the pain was so bad they had to give me something stronger and something faster than a pill. Now I have only been glutened 3 times since 2010. The first time because I read a label wrong and the other 2 were because a restaurant said it was gluten-free and they didn’t take proper precautions and I had cross contamination issues.

So after the third time my Gastrologist  and I got together and came up with a plan. The first thing he did was give me a medication that works by decreasing the motion of the stomach and intestines along with the secretion of stomach fluids, including acid. Now everyone’s doctor is different and I am not going to put the medication I use in this blog. You should talk to your doctor about it if you think you need to have one on hand. I take this medication as soon as I feel that feeling I get when I know I have eaten something that has had gluten in it. These pills dissolve under the tongue and are easy to take. I also take something for the diarrhea, which unfortunately happens when you have ingested gluten accidentally. The other thing that we talked about was that I need to drink water during this time and a lot of it to flush it all out of my system. I don’t me a glass here and there I mean bottles here an there, drink, drink, drink until you think you can’t drink anymore and then drink some more.

Now there are some other natural remedies that you can find at a health food store and there are some that feel juicing or a cleansing can help as well. I have not tried any of these. I personally and it’s just me feel better talking to my doctor and taking his recommendations. I am very sensitive when it comes to gluten and I can get very sick with cross contamination issues. Everyone is different and everyone reacts differently. Check with your doctor please before you take anything over the counter especially if you are on other medications. You don’t want to have a medication react to something you take over the counter.

 

Vitamin D Deficiencies and Celaic Disease


So this is what I have gathered so far from my doctors and what I have read. Because I have Celiacs Disease I do not absorb nutrients, so I do not absorb vitamins. They are too hard on my system and a little know fact but most vitamins also have gluten in them which I cannot have. There are vitamins out there that are gluten-free but you have to look for them and really check and do your homework.

Calcium and Vitamin D deficiency due to malabsorption increase the risk of osteoporosis in those with celiac disease. Now I never show any vitamin D in my system ever, so I usually have to go on 50,000 units once a week for 1 month to bring my vitamin D level to normal. What happens is 6 to 8 month later when I go back in to have it checked its back to either being extremely low or not showing up at all in my blood work. So now I try to eat more food that is higher in vitamin D.

Foods High in Vitamin D

  • Fish, Sardines, Salmon and Tuna (Love fish so I”m good)
  • Soy (If I have to)
  • Eggs (Love them)
  • Shiitake & Button Mushroom (Love them)
  • Dairy (Cant have)

The other best way to get vitamin D is sunshine, which I love to get and when its warm out I do a lot of swimming in our pool but I do not lay out in the sun any more (for obvious reason) but I do use a great Gluten Free Sunscreen

There are conditions that develop when vitamin D deficiency is ongoing. Muscle weakness, pain and lack of energy. Hyperparathyroidism, Rickets can occur in children, Osteoarthritis and bone fractures can also occur.

I had to have a bone scan done because of my lack of vitamin D and because I am no longer 5 ft 8 I am now 5 ft 7 (I argued with the nurse when she measured me) so they thought I was having bone issues but were surprised to see that my bones are in really good shape considering I don’t keep vitamin D in my system. I still want to know where that inch went, I’ve been 5ft 8 since kindergarten.

Life, gotta just laugh at it sometimes

By George I Think They Got It :)


This holiday weekend our house was the house. we had guests everyday. Saturday we had my husbands manager and his family over. We have had them over before and they are great people to hang out with, this time they insisted in bringing the main course. They were so concerned about what they were making because they know I have Celiac Disease. They didn’t even season any of the items until they got to my home to make sure the ingredients were ok for me. Now this guy make the best Ceaser Salad ever and he made sure that the dressing was ok and that croutons were not added and put on the side. It was wonderful, one day down and nothing but fun and swimming in the sun. No stomach ache, nothing YEAH.

Day two Sunday, my turn to cook, two of our children came home, the one that didn’t was here the night before . So burgers and hotdogs, chips and dips your basic things. YEAH another day and nothing but fun and swimming in the sun. Could I do it for a third day ? Yes I can.  Monday came and my in-laws and friends and number 2 son (who spent the night) and his girlfriend and her cute little girl came by. My father in law brought the food (Filets his favorite), my friends called a head of time and asked what they could bring that I could eat. It was another day of fun and swimming in the sun.

So finally after a year and a half most of my friends and family have figured out what I can eat and can’t eat, but alas my dear husband sat after everyone was gone Monday and as he is eating a doughnut he turned to me and said “Want a bi…. shit, I’m sorry baby. Yikes, really, you have got to be kidding me. LOL

Are you the only one in the family with Celiac Disease? I am, lucky me :)


My mother, me and one of my sisters and of course my two handsome son's

So I will give you a little background, I come from an Italian family. Pasta and bread is what I grew up on. I have always had some type of issue with my stomach for as long as I could remember. So I am the only one in my family with Celiac Disease, how can that be? There are some family members that have issues with their stomachs but they will not get tested. I didn’t have that option, I got so sick and lost so much weight so fast even my new doctors were baffled. Luckily for me they sent me to a Gastrologist and he found out, they figure by the amount of damage I have had this maybe 25 years.

Oh when I told my mother it was hereditary she asked her doctor and this is what he said, ready for this “Well she needs someone to blame doesn’t she” Ok you can all close your mouths now, yes that came out of a doctors mouth. All I can say is that he is lucky I wasn’t there.   Badda Bing Badda Boom