Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

extreme muscle wasting

carle

Recommended Posts

carle Rookie
carle
Posted

Im 49. Diagnosed with celiac  10 months ago (gluten free for ten months. I was 5'11 153 lbs. Stomach pain and weight loss before diagnosis. In 3 months I was 125 lbs. Allot of muscle loss. Two old tendon injurys in hip and jaw flared up during this time and couldent straighten or stand on leg (put me in wheelchair). Better now but still there. 

So Ive been gluten-free for 10 months. Im starting to gain a little weight but my legs are skin and bones. Im wanting to hear from others who had similar experience. Thanks  

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

You should make sure you are getting enough fats, proteins, carbs & calories.  

squirmingitch Veteran
squirmingitch
Posted

It takes time to heal and regain weight. I didn't gain an ounce for a solid year & 1/2 at least. I am 5'2" & celiac had me down to 91 lbs. Sometime between year 2 & 3, I got back up to 95 lbs. & then stayed there forever. I got so discouraged that I quit weighing myself at all because the scale never changed. Then one day I weighed myself around yr. 3.5 and I was 98 lbs.

I had horrid muscle wasting. If I bent over & pulled a weed my arm & back would make me pay for 5 days. Finally around year 3 I healed enough to be able to do light, very light gardening without injuring myself.

We are all different people & some take longer, some don't. Hang in there!

jillsville Newbie
jillsville
Posted

Hi Carle-I have had celiac's disease since I was 2 years old, diagnosed at 6, but I didn't have GI involvement until I was an adult. Make sure you are completely gluten free. Remember, this is an immune system sensitivity, and every time you eat gluten, it strengthens your immune systems reaction to it. Gluten has been related to dementia which is reversible as long as you avoid gluten. We have it easy, there are so many options now. I had a flare up 3 years ago when I was vegetarian and eating a soy-based product in bulk-I never got the ingredient list-2nd ingredient was gluten. I have always been well controlled, but that put me over the edge. I lost 20 pounds-ended up weighing less than 100 pounds. It took my GI a couple of months to heal and probably 6 months to be completely healed. It depends on how damaged your GI was before you were diagnosed. You will heal but must be vigilant about avoiding gluten. Good luck.

 

carle Rookie
carle
Posted
  • Author

Thanks for the response.  Im very carefull of what I eat now. Lots of meat, fish, veg, brown rice, yogurt and eggs.  Do you guys think there is a connection between celiacs and my tendon issues? Its really stopping me from exercising.

squirmingitch Veteran
squirmingitch
Posted

I do carle. I had unbelievable pain. Muscles, tendons, bones, joints. Bone pain not just in joints. For instance, in the middle between the elbow & the wrist. I thought I would be in a wheelchair within a years time. No painkillers could touch it, they did zilch. Body parts would swell and the nerves were screamingly sensitive. At times I would just about faint in pain if so much as a kleenex touched my hand. I got foot cramps all the time. I thought that was just a feature of the aging process. I was wrong. I haven't had a foot cramp in so long I don't even remember. All my pains went away. I haven't had a migraine in a couple years.

You just have to give it time. Try to be patient. Things WILL get better! I promise! The things you're talking about are going to take time though. Just stay the course. 

carle Rookie
carle
Posted
  • Author

You guys are the best! Just hearing encouraging words makes a huge difference! I have another question. Can malabsorption happen without GI symptoms?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted
25 minutes ago, carle said:

You guys are the best! Just hearing encouraging words makes a huge difference! I have another question. Can malabsorption happen without GI symptoms?

Yes.  When I was diagnosed,  anemia was my only known symptom caused by malabsporption.  I was shocked when my GI suggested testing me for celiac disease.  

Open Original Shared Link

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748
    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.