Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Can't Put On Weight


bakergirl90

Recommended Posts

bakergirl90 Apprentice

Hello Everyone, 

 

I am a Celiac and am still having issues keeping on weight after being gluten free since July. I have definitely been glutened multiple times between then and now. But the last couple months, I have been even more careful and don't go out to eat very often at all. I found out I also have a problem with all dairy products, milk, butter, cheese... I am assuming it is probably casein I am intolerant to? :( 

 

But the real problem here is that I can't seem to gain weight and keep it. When I was diagnosed in July I was around 115 lbs. but I should be closer to 120-125 lbs for my height of 5' 7". I gained a couple pounds for a while, but now I am back at 115.8 lbs. Could I still be healing and that's why I am not gaining weight? I love food, I eat 3 meals a day. And I am also a baker so I am always concocting something new that is dairy free and gluten free. I eat my baked goods instead of buying the expensive stuff at the store.

 

Or could I be losing weight because of another food intolerance I have and don't know about?? Or am I not eating enough? I can't figure it out!

I am really depressed that I can't gain weight, If I lose any more weight I will look like a skeleton. People think it is so funny that I want to gain weight and they just don't get it. I WANT to gain weight desperately!! 

 

I have an appointment with my gastroenterologist on January 27th, and I am definitely going to give him an earful. All I was told after my endoscopy was that I have Celiac disease and to be very careful. He didn't tell me anything else, like "oh you might have some food intolerances" or "oh you might have a hard time gaining weight" or "oh the healing process takes a while" or anything really. I am so mad because I feel like I get more help and better advice from this forum than I do from my doctor. I definitely do feel better than I did in the beginning, but I am still not feeling the greatest, my energy levels are still not that great, I have frequent stomach discomfort (and these crazy noises that come from my stomach), I am depressed a lot and I keep losing my weight!!!! 

 

Do any of you have trouble gaining weight? and if any of you gained it back how long did it take after diagnosis to start gaining it back and keeping it?? 

 

How do you figure out your food intolerances? It took me so long to figure out I can't have any milk products, I just stopped consuming milk, cheese, butter, etc. a couple weeks ago.. so maybe that is why I am still feeling crappy and not gaining weight? 

 

Sorry for all the damn questions, I just feel like I get better advice on here than anywhere else and I really need your help! Thanks in advance! 

So happy to have this forum.

 

Kayla


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Sorry that you are not able to gain weight.

It takes one to three years depending on the extent of your intestinal damage to heal. Six months in? Not enough time. Each glutening can set you back one to three days. celiac disease is not an allergy. It is an autoimmune response and when you get glutened, it can set you back a few weeks. Add them up and you can see that healing can really be delayed.

Chances are you have lactose intolerance and possibly casein. Lactose intolerance is due to damaged villi. The vill tips are the first to go and that is where the enzyme to digest lactose is released. Best to keep a food journal to determine other intolerances.

Since my hubby has been gluten free for 14 years, I continued to bake gluten-free goodies and started eating them. Hubby was long healed but not me. As a newbie, I found that I could not tolerant Xantham gum found in most gluten-free flour blends. Just something to think about.

Check out Newbie 101 found in our coping section. Lots of valuable tips there.

Take care and welcome!

Oh, I looked at your previous posting. Are you still working in a gluten-containing bakery?

notme Experienced

do you have any idea of how many calories you are consuming daily?  i have this same problem (not being able to keep weight on) and discovered i wasn't eating nearly enough calories to gain weight (plus, i have a very high metabolism)  i found this info out by plugging everything i ate into a phone app called 'my fitness pal' - most people use this when they are dieting, but i (and some others on here) found that it also works in "reverse" :)  also, useful to try to keep a food journal when you're on the go.  just whip out your phone and plug in your meal.  it also has a barcode scan function (that actually *works* lolz) which makes it that much easier.  

 

if you can, eat more healthy fats:  peanut butter, almond butter, avocados, etc.  i have also heard that coconut oil is good for gaining (but haven't tried a regimen of it yet)  some people just put a spoonful of it into their morning beverage (i keep forgetting!  ha, i'm sooooo not a morning person!!  ;)  )

gilligan Enthusiast

I agree with the above post.  I'm also struggling with weight gain.  The Fitness Pal helped me, also, in that I found out quickly that I wasn't eating enough calories.  Now that I'm taking in extra calories though, I'm still not gaining enough weight.  I actually got yelled out by a dr. last week who informed me that Audrey Hepburn only looks good in movies being as thin as she is.  If I was to see her in person, I would realize that she's too skinny, and that doesn't look good on her, or on me!  I had to explain the whole celiac, gluten and sugar intolerance.  He just stared at me and asked why I wasn't taking medium chain triglyceride oil.  Geesh!  Well, I had to order it through the pharmacy, but I'm now taking it.  Evidently, it's an oil that is easier to tolerate and allows for improved absorption.  I was told that it is in formula given to infants and children who are struggling to thrive.  Hopefully, it will help.  I see the g.i. dr. this week, so I'll ask him his opinion on it.  I read the list of ingredients and it's really just coconut and palm kernel oil.   

Panda811 Newbie

I am having the same problem. Glutenfree since June. I went from 143 to 120 and still struggle to stay there and keep my BMI in the normal range. I also cannot tolerate oats, coffee, soy, chocolate and many other things lately. Was feeling great the first 3 months now feel gross. I see fastro again on the 15 th and a nutritionist on the 21st. I know I am not getting the calories I need but am st

squirmingitch Veteran

Hi y'all!  :) As a southerner you might call me the queen of fattening foods. :D  :D Okay, I'll get serious now.

I was 103 lbs since I was around 13 yrs. old -- I'm 58 now. About 5 years before I found out I have celiac disease I began losing weight. I ended up at 93 lbs. when I began eating gluten-free. That was 3 years & 1 month ago. I eat a LOT. I'm 5'1" or a tad more. You want to talk about looking like a skeleton? Twiggy anyone? Did I mention I eat like a horse? No worries about getting enough calories here!!!! I probably eat enough for 2 people. I weighed myself & weighed myself & weighed myself & always the same thing....93 lbs. worse, on occasion I would be down to 91 lbs. :blink:  For 2 and a half years I weighed myself & got depressed every time the scale read the same. I knew I wouldn't gain at first but by the end of the first year I thought surely I could gain at least a pound. When the second year came & went with me stuck at 93 lbs. I couldn't take it anymore; it was too depressing. I quit weighing myself. It was about 4 months later when my jeans felt just a bit tighter than they had been. i stepped on the scale & surprise! I was up 10 lbs. to 103!!!!! I've held that 10 lbs. too.

This is just to let you know it takes time. It took me close to 3 years and I am rabid about not getting glutened. I haven't been glutened once since I went gluten-free and still it took me almost 3 years to gain.

cyclinglady Grand Master

do you have any idea of how many calories you are consuming daily? i have this same problem (not being able to keep weight on) and discovered i wasn't eating nearly enough calories to gain weight (plus, i have a very high metabolism) i found this info out by plugging everything i ate into a phone app called 'my fitness pal' - most people use this when they are dieting, but i (and some others on here) found that it also works in "reverse" :) also, useful to try to keep a food journal when you're on the go. just whip out your phone and plug in your meal. it also has a barcode scan function (that actually *works* lolz) which makes it that much easier.

if you can, eat more healthy fats: peanut butter, almond butter, avocados, etc. i have also heard that coconut oil is good for gaining (but haven't tried a regimen of it yet) some people just put a spoonful of it into their morning beverage (i keep forgetting! ha, i'm sooooo not a morning person!! ;) )

Put that jar of coconut oil by the coffee pot and then you will remember to use it! I use refined as i do not like a coconut-tasting coffee. I snack on fresh butter! I kid you not! Plus, I just poured whipping cream into my plain Greek yogurt and had a blob of peanut butter just before that. Like you said, fat really helps!

After two years, I am eating dairy. I think I am over the lactose intolerance. Casein could still be a slight issue (it is during moldy days) nothing that an antihistamine can not help. My brother is waiting for Spring to see how I fare during pollen season. We have shard the same allergies since we were kids. Still allergic to garlic though.


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



Celiac.com Sponsor (A8-M):



bakergirl90 Apprentice

Sorry that you are not able to gain weight.

It takes one to three years depending on the extent of your intestinal damage to heal. Six months in? Not enough time. Each glutening can set you back one to three days. celiac disease is not an allergy. It is an autoimmune response and when you get glutened, it can set you back a few weeks. Add them up and you can see that healing can really be delayed.

Chances are you have lactose intolerance and possibly casein. Lactose intolerance is due to damaged villi. The vill tips are the first to go and that is where the enzyme to digest lactose is released. Best to keep a food journal to determine other intolerances.

Since my hubby has been gluten free for 14 years, I continued to bake gluten-free goodies and started eating them. Hubby was long healed but not me. As a newbie, I found that I could not tolerant Xantham gum found in most gluten-free flour blends. Just something to think about.

Check out Newbie 101 found in our coping section. Lots of valuable tips there.

Take care and welcome!

Oh, I looked at your previous posting. Are you still working in a gluten-containing bakery?

 

Thanks!

 I don't think it is xanthan gum I am having a problem with. but I might just cut it out of some of my baking for a while just to see for sure. I can also use a couple of other things instead of xanthan gum. 

 

I think I just need be more careful when I do go out to eat. I am not as persistent about my food as I should be sometimes. But that's why I haven't eaten out for a while and I rarely do it now.. because it ends up being a hassle. I live in Warner Robins, GA, and I swear the south is the worst place to have Celiac disease.. there are barely any options to go out to eat. And a lot of people I talk to don't know what the hell Celiac is, and then I have to explain it and then they still don't get it... So I just say eff it and don't go out to eat unless we go to Atlanta where there are some safe places that get it!!! 

 

I am no longer working in the bakery. I had to quit, I noticed a difference only a couple days after I left. All that flour floating around in the air, I was breathing it in, and what you breath in you do end up swallowing.. It was really sad, because I have loved baking my whole life, my dream has always been to open a bakery and now I can no longer work in a regular gluteny bakery again. But my plan now is to open a Gluten free bakery in Georgia (probably Atlanta area) that also caters to all other allergies, intolerances, vegan diets and diabetes. :) No one should have to miss out on delicious baked goods!

bakergirl90 Apprentice

do you have any idea of how many calories you are consuming daily?  i have this same problem (not being able to keep weight on) and discovered i wasn't eating nearly enough calories to gain weight (plus, i have a very high metabolism)  i found this info out by plugging everything i ate into a phone app called 'my fitness pal' - most people use this when they are dieting, but i (and some others on here) found that it also works in "reverse" :)  also, useful to try to keep a food journal when you're on the go.  just whip out your phone and plug in your meal.  it also has a barcode scan function (that actually *works* lolz) which makes it that much easier.  

 

if you can, eat more healthy fats:  peanut butter, almond butter, avocados, etc.  i have also heard that coconut oil is good for gaining (but haven't tried a regimen of it yet)  some people just put a spoonful of it into their morning beverage (i keep forgetting!  ha, i'm sooooo not a morning person!!   ;)  )

Thanks so much! This is extremely helpful, I think you are right on the money, because after I read your post, I downloaded that app on my phone, and calculated how many calories I have eaten today and I have only had 1,200! That is not good :(  I eat all day!  but apparently not enough fat rich foods or foods with more calories, I have been eating a mostly whole foods diet and a lot of vegetables and what not do not have a lot of calories. which sucks! 

I didn't even think about that, so thank you! I am going to use that app and eat lots of peanut butter and stuff like that. Maybe whip up some awesome fatty baked goods. 

I actually have been putting a tablespoon of coconut oil and a little vanilla in my hot coffee and then blending that up in the morning and it tastes kind of like a latte. It's pretty amazing! It might make you a morning person? lol :)

bakergirl90 Apprentice

I agree with the above post.  I'm also struggling with weight gain.  The Fitness Pal helped me, also, in that I found out quickly that I wasn't eating enough calories.  Now that I'm taking in extra calories though, I'm still not gaining enough weight.  I actually got yelled out by a dr. last week who informed me that Audrey Hepburn only looks good in movies being as thin as she is.  If I was to see her in person, I would realize that she's too skinny, and that doesn't look good on her, or on me!  I had to explain the whole celiac, gluten and sugar intolerance.  He just stared at me and asked why I wasn't taking medium chain triglyceride oil.  Geesh!  Well, I had to order it through the pharmacy, but I'm now taking it.  Evidently, it's an oil that is easier to tolerate and allows for improved absorption.  I was told that it is in formula given to infants and children who are struggling to thrive.  Hopefully, it will help.  I see the g.i. dr. this week, so I'll ask him his opinion on it.  I read the list of ingredients and it's really just coconut and palm kernel oil.   

I might have to ask about that oil too! I hope it helps you!! Thanks for the info!! :) It is good to know I am not alone in this! This is the hardest time of my life and it makes me so upset to think about so many others that are struggling too. Having celiac is not for the faint of heart that's for sure. 

cyclinglady Grand Master

I get Georgia! I just shipped off the last of them home! It was nice having all my family for Christmas, though! We will be in Georgia this summer as usual.

But gluten-free restaurants (offering safe gluten-free food) are scarce in Los Angeles. We drive all the way to Tucson to go to the only 100% gluten-free restaurant we know (at least in the West). What a pleasure. No need to explain anything!

Good luck on the bakery. Start small by contacting local restaurants and colleges. It would be nice to see something other than Creme Brûlée!

icelandgirl Proficient

I had the issue of continually losing weight. I couldn't figure it out. I went on to my fitness pal too and it said I should be getting close to 1800 calories a day. When I calculated what I was actually getting it was around 1500...so there you go. I still struggle with getting enough eating only meats, fruits and veggies. I do put coconut oil in my coffee and blend it too (yum), avocados are also a good way to get calories. In the past week I've been trying to add in nuts. Eating a few cashews each day and so far so good. I do keep a food journal and I add up my calories. I don't want to lose any more weight.

It's hard, but it can be done.

squirmingitch Veteran

When your gut heals then you will be able to gain. It's pretty much just as simple as that. Be patient.

notme Experienced

Put that jar of coconut oil by the coffee pot and then you will remember to use it! I use refined as i do not like a coconut-tasting coffee. 

that is a great idea!!  i did just that - you can not taste it at all (i drink hot tea with milk/lactaid and sugar) if anything, it makes it taste more 'rich' :)  

notme Experienced

follow-up, y'all - that coconut oil is the real deal so far :)  just a teaspoon in my tea in the morning.  my digestion has improved yet again.  it's been consistent, so it's definitely the coconut oil.  going to the doc today, so i'm going to get my 'official' weight.....  wish me luck - i'm hoping for close to 115......?   ('fat' chance, right, lolz  ;) )

notme Experienced

114.8 :)  yessss......  it's a good start, finally, i am up 3 lbs (3.8 technically)  ;)

cyclinglady Grand Master

Congratulations!

squirmingitch Veteran

Good job! :)

notme Experienced

thanx, y'all!  :D

 

had to chuckle, when i asked the doc if there was any reason the coconut oil would help my digestion.  he says: i dunno  :)  well, alll righty, then!  i am now on an 'as needed' patient, being as i never had a positive blood test and am not going to do a gluten challenge, no sense in testing for antibodies (because there aren't any) my probiotic/digestive enzyme combo regimen seems to be successful.  so, if i have a problem, i just call (no referral  necessary) he said he might want to do an endoscopy after awhile, but it's not imperative or urgent.  

 

so, a good day friday :)  friday night went out to see one of my favorite bands - called ahead to see if i could bring my own beer (a few places will let me bring it in and i just tip the bartender to take them out of the cooler lolz) so, they shot me down.  o well, i tried to get their blessing.  happy winter, giant coat, i left all the empty bottles on the table hahahahaaa - beer drinkers' tip of the day  (i hate that cider crap)  hide it in plain sight   ^_^

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,161
    • Most Online (within 30 mins)
      7,748

    DAR girl
    Newest Member
    DAR girl
    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

    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • trents
      A lot to think about here. Does anyone have any recommendations for third party laboratories that will do full panel celiac screens private pay in the U.S.?
×
×
  • Create New...