Severe Muscle Wasting

[totoro]

Hello Everyone, 

I have never heard of Celiac disease before but recently someone referred to me about and I was wondering if my symptoms are worth getting tested for.

 

I just read right now that it is genetics but I have never had these severe symptoms until recently so can this disease come later in your life?

 

Over the past few months I seem to get major stomach pains, sometimes as if knives are stabbing me after eating my sandwich and my stomach would portrude out so much my back hurt. My parents wondered asked if I was pregnant or something.

I started to lose weight but I was trying to lose some weight anyways by controlling my portions and exercising a little. So I thought it was expected, but somehow, deep in the back of my head, I felt I was losing weight a little too quickly and easily. I started to dread going on the treadmill after eating because I felt so weak and tired that I decided I would literally run right after my lunch even though I knew I would get cramps and stuff because I literally had no energy. But I would feel soooo much more hungry after eating and feel even weaker.

 

I lost 40 pounds in like 3 months and decided somthing was wrong because I now lost too much weight, I feel like my muscles are deteriorating no matter how much light weight training I do. Although I started eating more, I starting feeling so much more tired, I would sleep all day long. Now that school has started, I go to class come home and sleep all day. I can't even exercise anymore.

 

Lately, so much of my hair has fallen out I have bald spots, I feel like I am going to faint when I stand, I am so cold, I am underweight, and so depressed. My stomach hurts so much at times, I used to have diarrhea and constipation back and forth once a day but now it is just constipation and I have so much gas in my stomach.

 

The thing is it just happened all of a sudden but the symptoms wont go away. Now when I eat, it hurts so bad I have chest pains and bradycardia at 31 bp that I had to go to the ER for iv. My blood tests came out normal except I have low rbc and wbc and my lymphocites are high. I didn't get the immune blood test done yet. 

 

The abdominal pain is so bad, some days, I get so hungry but don't want to eat because my stomach hurts. When I sleep my arms feel like energy is draining from it ( is that what muscle catabolism is supposed to feel like?) Is this dangerous if prolonged too much.

 

I think I will get tested but,

In the meantime, for those who lost weight before dx, did you guys still force yourself to eat a required amount and then still lose weight or did you avoid eating and lost weight as a consequence? I hear some ate like a horse and still lost weight and felt hungry; were you eating through the pain in your stomach? Because I have stomach pains and I still try to force myself to eat more to avoid losing anymore I wanted to know if others do the same or if they just starve themselves to avoid the pain, because I don't know if eating more will cause more damage or if not eating will, although I am starving all the time.

 

 

[WinterSong]

Hi there! Welcome to the board. Good for you for taking your health into your own hands. To answer your questions:

 

Yes, if you have the gene for Celiac it can "turn on" at any time in your life. I didn't start having symptoms until college and was diagnosed several years later. (Side note: I was also the first in my family to get diagnosed, so even if you think it doesn't run in your family you could be wrong.)

 

Exhaustion, unexplained weight loss, bloating, C, and D, and stomach pains are all symptoms of Celiac (all of which were my most prominent symptoms, too). In the weeks leading up my diagnosis, I had a series of very bad attacks that left me miserable and barely able to function. I would just sit all the time because I could hardly bring myself to walk with my stomach pains.

 

Definitely get yourself tested. 

 

As for eating, you NEED to keep eating gluten before getting tested, otherwise it could alter your results and give you a false negative. So yes, unfortunately you will have to force yourself to eat. 

 

Hope you feel better!

[JoyMurphy]

I had a 55 lb weight loss in about 2+ months.  I was losing a lb a day.  Previously I had to be on weight watchers to loose anything.  I was fit, did zumba and weight training almost every day.  At my worst I couldn't lift the brush to brush my daughters hair.  

I would force myself to eat every day.  All I could manage was a rice cake w/ PB, a small piece of meat and maybe a bite of sweet potato or rice.....These were foods I wouldn't react to.  Otherwise, food went through me like water, or came back up accompanied by doublling over pain.  I also felt like I was going to faint when I stood.  At my worst I was in a wheel chair to get around.   Get the tests done.

Good luck...

Have them check your ANA too.  Those are nuclear antibodies...just to be sure it's not a rheumatological issue....

[GF Lover]

You might ask to have your thyroid tested also.

 

Colleen

[totoro]

Thank you all for your helpful replies. It is just that when I went to the doctors for a blood test, the doctors wanted to diagnose me with anorexia nervosa because I was a 20 year old college student and was underweight. I am put on a high calorie meal plan to gain weight, but recently the pain in my stomach has doubled yet I feel even more tired with more food and somehow, since I don't have diarrhea problems only constipation and extreme bloating I am in so much pain that I want to just crawl in a corner and cry all day. 

I was wondering if any of you would eat and eat and eat through this pain and find that you still lost weight because then my doctors would be able to see that I am indeed not starving myself and can be put off with this food intake until I get some testing done.

Thank you so much!

[GFinDC]

Hi Totoro!  Welcome to the forum!

 

I suggest you print this thread out and give it to your doctors to read.  They probably don't understand your symptoms are as severe as they sound.  Seeing it in writing might help them get the picture.  Maybe your parents should read it too.

 

Ok, weight loss with celiac disease is caused by damage to the villi that line the intestine.  Those villi are what absorb nutrients into the bloodstream.  When they are damaged they can't do that job effectively.  If you have celiac disease eating more gluten will just make you sicker.  Even if you eat a ton of it you will only get sicker.  You do need to keep eating gluten until your celiac testing is completed though, or the tests may fail.  The normal tests are a full celiac disease antibody panel and then an endoscopy of the small intestine.  In the endoscopy they take multiple biopsy samples to have a lab check them for villi damage.

 

Your doctors should also test your blood for nutrient levels, vitamins and minerals.  Celiac makes it hard to absorb nutrients so we can become low on some vitamins.   That's another clue.

 

It is important to get the testing done and get a diagnosis.  Celiac disease is a serious autoimmune condition and should not be treated lightly.  You can recover and be just fine on the gluten free diet but you do need to spend some time reading and learning about how to eat gluten-free.  Cross contamination (cc) is a real problem and needs to be avoided.

 

Helpful threads:

 

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

 

Newbie Info 101

https://www.celiac.com/forums/topic/91878-newbie-info-101/

[JoyMurphy]

hi,

you don't have diarrhea, just constipation?  That still can be a sign.  I had diarrhea, bad...but my daughters, both of them had severe constipation.  The one with the less severe symptoms tested high on the blood test and had a lot of damage in the endoscopy.  The one with the worse stomach problems tested fine on both, but has the gene.  They told me to test her every year.  I hated seeing her in pain, so I pulled her off gluten completely.  It is never good to stop gluten before testing.  I did and my diagnosis took a while.  My daughters odds of having a possitive test result in the future are pretty high...I couldn't take her screaming in pain on the toilet, and not being able to walk down the street bc the pain was so intense.  That was it, no more.  I looked at her in the hotel room one day, in pain and said, that's it!  She agreed.

Another thing my other daughter had, was warts.  Those went away after her dx and going gluten-free.  Warts are an infection that the celiacs allowed to take part of her body.  When the gluten was removed, her body was able to fight off the warts.  Not many people talk about that...but I did read it somewhere, and then I watched it in my own daughter.

good luck!