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

Confused


Jessie2020

Recommended Posts

Jessie2020 Newbie

I am a 41 year old female and I was diagnosed a little over 3 months ago, after going undiagnosed for a year while I went from 168lbs down to 130, and kept on going. I now weigh 84lbs and have been following my diet to a tee, I will put on a few lbs but then lose the weight I put on plus 2 to 3 more lbs! I was told if I followed my diet I would start to get better and gain weight..I dont know how much more I can lose before there is nothing left of me. I'm worried, has this happened to anyone else? I


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



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

Are you sure your diet is 100% gluten-free? If you eat outside your home it likely isn’t.

Many celiacs have additional food intolerances, do you have issues with other foods like nightshades, soy, eggs, dairy, etc.?

GFinDC Veteran

Hi jessie,

That sounds awful!  Yes, some people have had severe weight loss with celiac disease.  It can be hard to gain weight back also.  Your diet is the key to success  with celiac disease.  The immune system is very sensitive and reacts to very small amounts of gluten.  Also, some of us react to oats.  Dairy is a common problem for new gluten-free dieters.

Are you seeing a doctor about your condition?  You should be at this point with weight loss like that.

 

knitty kitty Grand Master
(edited)

Jesse,

Welcome to the forum!  Hope we can direct you to answers here.

What do you include in your diet?  Do you include dairy or nightshades (tomatoes, potatoes,  peppers, eggplants)? Are you experiencing diarrhea or constipation?  Have you tried the Autoimmune Paleo Diet?  I found it very healing.

Have you been checked for vitamin and mineral deficiencies?  Checking for nutritional deficiencies is part of proper follow up care for Celiacs.

Before diagnosis, I became deficient in Thiamine (Vitamin B1) which caused a significant weight reduction without trying. I was also deficient in other vitamins and minerals.  My doctors did not recognize the symptoms of nutritional deficiencies.  I started taking  magnesium and Thiamine.  I saw improvements very quickly.  A B Complex supplement will help ensure you are getting sufficient B vitamins while your intestines are healing.  

Please discuss with your doctor or nutritionist about supplementing with vitamins and minerals.

"11 Silent Signs of a Thiamine Deficiency"

https://www.thehealthy.com/nutrition/silent-signs-thiamine-deficiency/

Edited by knitty kitty
Add more information
raspberryfirecracker Contributor

Jessie to me your post reads as a medical emergency. When you read these replies, immediately inform your doctor of what you just told us--call the office, schedule the next appointment asap, leave a message with the nurse, write them a message if they have an online portal, something. They need to know. They should've already at least talked to you about life-saving intervention, about gastric/feeding tube, and/or PPN, or TPN. I have to wonder if they haven't because they don't know. Are you having arrhythmia? Headaches? Blurred vision? Numbness? Shortness of breath? Please tell your doctor what you told us. Yes this happens to people, and they have to get help to recover.

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,160
    • Most Online (within 30 mins)
      7,748

    TashaCatt
    Newest Member
    TashaCatt
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Wheatwacked
      Vitamin D status in the UK is even worse than the US.  vitamin D is essential for fighting bone loss and dental health and resistance to infection.  Mental health and depression can also be affected by vitamin D deficiency.  Perhaps low D is the reason that some suffer from multiple autoimmune diseases.  In studies, low D is a factor in almost all of the autoimmune diseases that it has been studied in. Even while searching for your diagnosis, testing your 25(OH)D status and improving it my help your general wellness. Vitamin D Deficiency Affects 60% in Britain: How to Fix It?    
    • islaPorty
    • lil-oly
      Hey there, have you been tested for allergies? You may not only have celiac disease but be allergic. I have celiac disease and am allergic to Barley, wheat and rye. 
    • JudyLou
    • knitty kitty
      I have osteopenia and have cracked three vertebrae.  Niacin is connected to osteoporosis! Do talk to your nutritionist and doctor about supplementing with B vitamins.  Blood tests don't reveal the amount of vitamins stored inside cells.  The blood is a transportation system and can reflect vitamins absorbed from food eaten in the previous twenty-four to forty-eight hours.  Those "normal limits" are based on minimum amounts required to prevent disease, not levels for optimal health.   Keep us posted on your progress.   B Vitamins: Functions and Uses in Medicine https://pmc.ncbi.nlm.nih.gov/articles/PMC9662251/ Association of dietary niacin intake with osteoporosis in the postmenopausal women in the US: NHANES 2007–2018 https://pmc.ncbi.nlm.nih.gov/articles/PMC11835798/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/   Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://pmc.ncbi.nlm.nih.gov/articles/PMC8398893/ Nutritional Consequences of Celiac Disease and Gluten-Free Diet https://www.mdpi.com/2036-7422/15/4/61 Simplifying the B Complex: How Vitamins B6 and B9 Modulate One Carbon Metabolism in Cancer and Beyond https://pmc.ncbi.nlm.nih.gov/articles/PMC9609401/
×
×
  • 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.