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

Trying To Gain Weight After Diagnosis


gfreegirl0125

Recommended Posts

gfreegirl0125 Newbie

I was recently diagnosed with "undiagnosable" Celiac Disease/Gluten Intolerance. My primary doctor had started me on a G/free diet prior to the testing so they were unable to get a positive with the blood work or the biopsy. Because I had reponded so well to the G/free diet they are confident with the diagnosis.

For years I had been from doctor to doctor, speacialist to specialist. They all said it was IBS-C - Eat more Fiber - Exercise - I tried everything - I basically was ready to throw my hands up - I knew it was more than "IBS" - I was in pain, always tired, thirsty, depressed, I would ravish food almost on the verge of binge eating - I was never satisfied - I was always hungry. I didn't understand.- and then I had lost so much weight - I had always been small but I lost 11 pounds in a month and a half - so I knew there was something wrong and that there had to be an answer out there and so as a last resort I switched primary doctors. She did the routine physical and blood tests - My vitamin D levels were really low - but it wasn't my kidneys, wasn't diabetes, and then she asked if I has ever been tested for Celiac Sprue? I was like what is that? So she explained t ome what is was and she has a GI doctor that works in the same office and scheduled an appointment for me. In the meantime she said to try eating a g/free diet - well I FINALLY felt like myself for the first time in years. I had energy, I was moving my bowels more frequently -

When I went to the GI doctor she said that a lot of times doctors will not test patients for Celiac when the main symptom is constipation - and this leads to a lot of mis-diagnosed patients - Then she continued to tell me that she probably couldn't get a positive on me because I hadn't been eating Gluten but she still wanted to do the blood test, and the endoscopy. But regardless if she could get the positive she was sure that we were on to something - I was in tears in her office! For the first time I had answers! It was a blessing - All these years I would have done anything to feel better - And to think all that I had to do was change my diet -

I have not lost anymore weight since starting the g/free diet and my diagnosis - I am 27, 5'0 and 80 pounds - It is frustrating to not see the scale move - I fight for that 1 pound - I gain a pound - I lose a pound - the doctor tells me not to obsess over the scale that the weight will come - BUT - I am so unhappy with how I look - I don't fit into my clothes and that is frustrating!

I try to stay as positive as possible - The doctors say I should see the scale start to move in the next few months as my body heals and starts absorbing nutrients again -

I just wanted to share my story - if there is one person going through what I am going through - I just want to let them know I understand - It is frustrating, and there is so much information out there that it can be overwhelming - But feeling better and healing is worth all of it -

Does anyone have any advise on how to put the weight on faster or is it a matter of patience at this point?


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



Celiac.com Sponsor (A8-M):



ang1e0251 Contributor

First, make sure you are eating enough protein. You need protein with each meal and it wouldn't hurt to have some with snacks too. Then add more good fats to your diet as much as you want. Good fats are dairy fat, you can add a slurp of cream every time you have your whole milk. Add coconut milk to foods and drinks. Eat nuts and avocados. These are all good rescources.

Your body has been starved for a long time. It's using all those nutrients your giving it. Your doctors are right, it will eventually be able to gain but it's replacing its reserves right now.

Be patient and eat well!! Let us know how you're doing. I'm so glad you are finally on the mend.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - lil-oly replied to Jmartes71's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten tester

    2. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    3. - JudyLou replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

    4. - knitty kitty replied to JudyLou's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Seeking advice on potential gluten challenge

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,155
    • Most Online (within 30 mins)
      7,748

    Beccad611
    Newest Member
    Beccad611
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • 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/
    • JudyLou
      Thank you so much for the clarification! Yes to these questions: Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, or vitamins? I’m within healthy range for nutritional tests, thyroid and am not anemic. I do have osteopenia. I don’t take any medications, and the dietician was actually a nutritionist (not sure if that is the same thing) recommended by my physician at the time to better understand gluten free eating.    I almost wish the gluten exposure had triggered something, so at least I’d know what’s going on. So confusing!    Many thanks! 
    • knitty kitty
      @JudyLou,  I have dermatitis herpetiformis, too!  And...big drum roll... Niacin improves dermatitis herpetiformis!   Niacin is very important to skin health and intestinal health.   You're correct.  dermatitis herpetiformis usually occurs on extensor muscles, but dermatitis herpetiformis is also pressure sensitive, so blisters can form where clothing puts pressure on the skin. Elastic waist bands, bulky seams on clothing, watch bands, hats.  Rolled up sleeves or my purse hanging on my arm would make me break out on the insides of my elbows.  I have had a blister on my finger where my pen rested as I write.  Foods high in Iodine can cause an outbreak and exacerbate dermatitis herpetiformis. You've been on the gluten free diet for a long time.  Our gluten free diet can be low in vitamins and minerals, especially if processed gluten free foods are consumed.  Those aren't fortified with vitamins like gluten containing products are.  Have you consulted dietician?  Have you been checked for nutritional deficiencies?  Osteoporosis? Thyroid? Anemia?  Do you take any supplements, medicine, or vitamins? Niacin deficiency is connected to anemia.  Anemia can cause false negatives on tTg IgA tests.  A person can be on that borderline where symptoms wax and wane for years, surviving, but not thriving.  We have a higher metabolic need for more nutrients when we're sick or emotionally stressed which can deplete the small amount of vitamins we can store in our bodies and symptoms reappear.   Exposure to gluten (and casein in those sensitive to it) can cause an increased immune response and inflammation for months afterwards. The immune cells that make tTg IgA antibodies which are triggered today are going to live for about two years. During that time, inflammation is heightened.  Those immune cells only replicate when triggered.  If those immune cells don't get triggered again for about two years, they die without leaving any descendents programmed to trigger on gluten and casein.  The immune system forgets gluten and casein need to be attacked.  The Celiac genes turn off.  This is remission.    Some people in remission report being able to consume gluten again without consequence.   However, another triggering event can turn the Celiac genes on again.   Celiac genes are turned on by a triggering event (physical or emotional stress).  There's some evidence that thiamine insufficiency contributes to the turning on of autoimmune genes.  There is an increased biological need for thiamine when we are physically or emotionally stressed.  Thiamine cannot be stored for more than twenty-one days and may be depleted in as little as three during physical and emotional stresses. Mitochondria without sufficient thiamine become damaged and don't function properly.  This gets relayed to the genes and autoimmune disease genes turn on.  Thiamine and other B vitamins, minerals, and other nutrients are needed to replace the dysfunctional mitochondria and repair the damage to the body.   I recommend getting checked for vitamin and mineral deficiencies.  More than just Vitamin D and B12.  A gluten challenge would definitely be a stressor capable of precipitating further vitamin deficiencies and health consequences.   Best wishes!    
×
×
  • 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.