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

I Feel Better But Still Lost More Weight!


notme

Recommended Posts

notme Experienced

still feel like I have the flu but my 'guts' are behaving. I haven't got a gluten free vitamin supplement yet. just tylenol and sublingual b-12. my sense of smell (wow) seems to be coming back and today I went a very long time before I felt like I needed to have a cigarette. food is tasting awesome and I am munching gluten-free deliciousness. but I am so disappointed I have not gained but *lost* more weight in the past 2 wks. I am on this boat for the whole 3 hour tour, so any advice/experience please do tell. appreciate you all more than you could ever know!

thanx

arlene


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



Celiac.com Sponsor (A8-M):



rosyrear1 Newbie

I wish I could lose weight! I found out I have Celiac disease about a year and a half ago and was already large then (250). I now weigh 320 and it just doesn't matter what diet I do. I even did the HCG diet, followed it exactly, and still gained weight. I am still eating healthy and exercising when I can but still gain weight. I have 5 young kids and I work full time. I am in the process of getting divorced, he didn't support me going gluten free so that made it very hard. That wasn't the reason for the divorce though. Even with all the stress I am eating less but still gaining and I just want to feel good about myself. I do think it sucks that I had to get the fat version of this disease. Sorry I will stop complaining. I know it is bad that you continue to lose weight. I am very willing to donate weight to you! :P

T.H. Community Regular

Wel, first, I would really try to find the gluten-free vitamins, because if you have non gluten-free vitamins, you are still not healing all the way, ya know?

I lost weight for QUITE a while after going gluten free. The only thing that helped me some was to eat like a mad woman for a while, lots of carbs/high calorie stuff. I honestly don't know, but my assumption on what might be happening is that you are healing, but a big source of high calorie foods - all the gluten stuff - is now out of your diet. So if you haven't healed yet, but you aren't eating high calorie stuff, that might account for the weight loss. Keeping your calorie intake higher might help.

Wouldn't swear to it, but that's what made a bit of a difference to me. :-)

still feel like I have the flu but my 'guts' are behaving. I haven't got a gluten free vitamin supplement yet. just tylenol and sublingual b-12. my sense of smell (wow) seems to be coming back and today I went a very long time before I felt like I needed to have a cigarette. food is tasting awesome and I am munching gluten-free deliciousness. but I am so disappointed I have not gained but *lost* more weight in the past 2 wks. I am on this boat for the whole 3 hour tour, so any advice/experience please do tell. appreciate you all more than you could ever know!

thanx

arlene

notme Experienced

I wish I could lose weight! I found out I have Celiac disease about a year and a half ago and was already large then (250). I now weigh 320 and it just doesn't matter what diet I do. I even did the HCG diet, followed it exactly, and still gained weight. I am still eating healthy and exercising when I can but still gain weight. I have 5 young kids and I work full time. I am in the process of getting divorced, he didn't support me going gluten free so that made it very hard. That wasn't the reason for the divorce though. Even with all the stress I am eating less but still gaining and I just want to feel good about myself. I do think it sucks that I had to get the fat version of this disease. Sorry I will stop complaining. I know it is bad that you continue to lose weight. I am very willing to donate weight to you! :P

goodness you have a lot going on! 5 kids - you are one crazier than me :) we have 4 but they are grown. 2 still live here plus 2 grandbabies (6 & 2) but I always tell them 'im kicking you out and burning the house down' lol

I hope your divorce is as painless as possible - been there, done that. plus, our daughter's should be final this month so she can get on with her life :) I don't know how to act if the house is quiet :P

and I will take you up on that extra weight - put it on my boobs ! :D

notme Experienced

Wel, first, I would really try to find the gluten-free vitamins, because if you have non gluten-free vitamins, you are still not healing all the way, ya know?

I lost weight for QUITE a while after going gluten free. The only thing that helped me some was to eat like a mad woman for a while, lots of carbs/high calorie stuff. I honestly don't know, but my assumption on what might be happening is that you are healing, but a big source of high calorie foods - all the gluten stuff - is now out of your diet. So if you haven't healed yet, but you aren't eating high calorie stuff, that might account for the weight loss. Keeping your calorie intake higher might help.

Wouldn't swear to it, but that's what made a bit of a difference to me. :-)

right now I am not taking any vitamins except b-12. I thought maybe since my body was actually absorbing nutrients maybe I would get enough from a balanced diet. but, yeah, I stay away from high calorie/carbs normally (except bread!) so I am going to add a lot more and also get my hands in some gluten-free multi-vitamins. thanx :)

sahm-i-am Apprentice

I was told to gain weight when I was diagnosed with Celiac in April. It took a few months for me to gain 10 lbs. It was alot of work - I had to consume 3000 calories a day and it finally started happening. I couldn't eat like that forever and had to stop - I felt sick, not GI sick, but full-never-want-to-eat-again sick. And I didn't eat junk food - wanted to gain it the healthy way. It just takes time. I kept up with exercise too. I have since started losing the weight again, know GI doc isn't going to be happy - but maybe other things are going on. Go back to dr. next week. Just can't continue to eat so much.

Hey, maybe try eating smaller meals all day - munch through the day? I might try that, too.

Marz Enthusiast

Hi notme :) I'm in the same boat, and I'm *slooowly* gaining weight, but at least it's happening. I managed to start gaining weight about 2 weeks or so after going gluten free, but then the damage in my SI might have been light.

How long have you been gluten-free? Some people mentioned gluten causes fluid retention, so it might be the case that as you're gaining tissue weight you're losing water weight at the same time from being gluten-free? Not sure how much that would affect you.

And how are you feeling? Do you feel like you're still having GI issues? Gluten contamination? Some people have issues with soy and casein protein from milk, and in some cases that could still be damaging your intestine or stopping it from healing?

You can try get some gluten-free digestive enzymes. I read a study about kids with celiac disease - digestive enzymes helped a lot with weight gain in the first month, thereafter the benefit wasn't as pronounced, so I'd definately suggest trying this short term to see if it helps?

I snack on stuff the whole day - fruit, dried fruit, nuts, rice cakes with peanut butter or jam, rolls of ham... I pack myself a lunch box full of stuff for work, and I also take a proper "lunch" with me for noon that I heat up - usually mince/bacon, rice and veges. I tried using powder shakes, but just figured out I'm soy intolerant and the stuff makes me ill, I'm going to have to find a gluten-free, soy-free substitute. I also pack the occasional chocolate, it's not "healthy" but it contains a crap-load of sugar, and really whether it comes from a chocolate or a fruit it's still energy ;)

If you're already eating like the bomb, and not putting on weight, then it can only be damage to your intestine being slow to heal - find out if you're intolerant to any other foods, and definately try the enzymes :)

Good luck!


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



Celiac.com Sponsor (A8-M):



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. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    2. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

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

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748

    KABoston
    Newest Member
    KABoston
    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

    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.