Share this:

celiac disease: coping with change

Posted by @livetolearn in Digestive Health, May 17, 2012

Symptoms that have followed my diagnosis have been disturbing and confusing.I expected to feel better for sacrificing the foods I ate for the first 50 years of my life , not falling into a pit of illness. It has been 5 months and I am struggling to get my iron up, and feeling at a loss after a bone scan that suggests I have he bones of a 70 yr old. Menopause seemed to be triggered by my change of diet or it was bad timing, so I don't really know what is causing what.


Posted by @roxie43, May 17, 2012

Welcome to Mayo. Have you thought of consulting with a nutritionist? Supposedly, we are getting the proper nutrients in our diet but this is not always the case.
I take fish oil, vitamin B, Calcium chews, and three times per week a multivitamin.
Talk with your doctor to see if these things would help.
Take care and best of luck.


Posted by @shopgirl, Jun 9, 2012

What are the symptoms of Celiac disease? I have upper right quadrant pain and also seems to radiate towards my right kidney and my right shoulder blade when it's really bad. I've had ultrasound and blood work which shows nothing. I took myself to a Gastroenterologist who ordered more blood work for Celiac and IBS which hasn't come back yet. Also scheduled for tow MRI's. I've had this for two months now.

Any help would be appreciated.


Posted by @livetolearn, Jun 9, 2012

Celiac disease has a lot of symptoms that vary from one person to another. My blood work came back negative which got me off track for a while. Years later I ended up seeing a Gastroenterologist who explained the only true test to know if you have it is the endoscopy. After the test results showed blunted villi and along with my symptoms it was most probable that I have it. For years I have been having stomach pain,fatigue, dizziness, unable to concentrate, sore muscles , shortness of breath and more.I always say it's like living a half life or like a tv that needs the fine tuning adjusted.Some of the symptoms sounded like nutritional deficiencies,which ended up being true because I wasn't absorbing the nutrients.Now I am still working on correcting my years of malabsorbtion and hoping for success. Some problems are not fixable,like the calcium loss in my bones.My iron is starting to go up though. Not sure if this is any help ,but good luck to you.


Posted by @shopgirl, Jun 9, 2012

Thank you - I have a lot of those same symptoms.It certainly is a puzzle.


Posted by @judy67, Aug 10, 2012

I have Celiac disease and have been in the hospital with what the Drs thought was IBS. It had been going on for almost 10 years. Now I am going on 17 years and was finally diagnosed 2 years ago with what it really was. The only problems that I have with it now is the diet. It is very hard to stay gluten free. There is gas and bloating and all kinds of different things that will go with this disease. TRYING to stay on the diet will help a lot if you can do it. You really have to just put your mind to it and hopefully you will feel a lot better.


Posted by @salledell, Aug 10, 2012

Hi livetolearn,
My story is similar to yours. However, I disagree that the calcium loss is not fixable. I was diagnosed with severe osteoporosis, much to my surprise, before I was diagnosed with celiac disease. I went on HRT for a couple of years, and had gotten to a diagnosis of osteopenia. I then went on Fosamax for a couple more years, and my last bone scan, maybe five years ago, showed my bones to be normal for my age, according to my doctor. I had always taken a calcium supplement containing magnesium, vitamin C and vitamin D, and I think that helped in restoring my bone health. Once I gave up the gluten, I could absorb all the nutrients I was taking in. In fact, I gained 20 pounds within a few months after going gluten-free. And I'm still trying to get rid of them!


Posted by @paula50, Aug 10, 2012

hi to everyone....i am new here and just started a gluten free diet yesterday....can anyone give me tips....i have had stomach issues for a number of years now,had my GB out 2 yrs ago,helped for a ahwile,now i am back to all the bloating at night,all over sick feeling,sore joints,deppression....the only thing i dont have is weight middle seems to be expanding!!.....i hate feeling this way,icky all the i took it upon myself to start with the gluten free diet....if there is another thread with just this topic please steer me in the right direction.....thanks


Posted by @salledell, Aug 10, 2012

Hi Paula,
You might try for tips on gluten-free diet. I've been gluten-free for nearly ten years and there is very little that I miss from the gluten world we live in. Just had a big bowl of Greek yogurt and fresh fruit salad for breakfast.
I went breadless for several years until I found Rudi's bread--I love their cinnamon raisin toasted with crunchy peanut butter for breakfast. Then there is Udi's--they have a whole grain bread that's very good for toasted cheese sandwiches, they also have hamburg and hotdog buns. Trader Joe's carries them at a reasonable price.
Both Rudi's and Udi's are from Denver area, I believe.
And there is lots of pasta made with brown rice or corn. My family can't tell the difference, once the sauces are on. There is even a lasagna, and you don't have to cook the noodles separately---just layer 'em in with all the other ingredients and let it bake till done.
Having been born and raised on a farm, I have always loved fruits and vegetables, so that is the basis of my diet, along with dairy, meat, brown rice, and beans and legumes. I've seen the gluten-free diet called low in fiber, but with all those fruits & veggies, beans and brown rice, I think it's higher in fiber than the typical American diet of processed foods.
You have to read the labels on everything and get informed on hidden sources of gluten. Who knew that soy sauce is wheat based? Or that root beer is made with a barley enzyme? And nearly all cereals have barley malt or just malt flavoring. Things like licorice sticks are basically wheat flour with color and flavoring added.
I'd suggest joining a support group locally. It's a help in comparing notes and experiences with others, and in finding new gluten-free products and restaurants.
Welcome to the gluten-free world, and I hope you will enjoy the ride!

Please login or become a member to post a comment.