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

How On Earth Can I Gain Some Weight?

no7ang

By no7ang
in Coping with Celiac Disease

Recommended Posts

NateJ Contributor
NateJ
Posted

I guess i have some other issues going on that are preventing me from 'just eating more'. I've tried all these types of foods and diet plans and even went to see a RD who set me up on FODMAPS. The main issue is my stomach hurts. All the time. Constant aching and eating makes it worse. I feel bloated and nauseated after eating the smallest amount of food. I know I'm not getting enough calories but the pain is to much for me to try to eat more.

Doctors want to wait weeks or months to do anything and usually that is just a blood test that doesn't show anything they are looking for.

So there is that. Stuck in this rut of weight loss.

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

Celiac.com Sponsor (A8-M):


answerseeker Enthusiast
answerseeker
Posted

hey, eers :) it's not an allergy but an autoimmune response to gluten - your immune system, normally the good guys who fight germs, are mistaking gluten for the enemy so they basically do a drive-by on gluten but they don't care that little susie <your intestinal walls, yeah, susie's a looker lolz) is sitting on the porch minding her own business. so POW they attack the gluten but also your intestines because they are full on kill mode. our autoimmune system is confused and on crack, so if we keep gluten off the streets, little susie will be just fine :)

i also do the star trek version ;) don't forget to tip your bartender B)

Love this! Totally going to use it next time someone asks me about my condition.

IrishHeart Veteran
IrishHeart
Posted

 

I am a little lost on the comment regarding "we are not allergic to gluten".  I feel like I am.   I guess in simple terms, if its not an allergic response that causes my body to respond with antibodies that cause inflammation, then what is it?  Curious of your thoughts since I'm still very much a newbie and like to absorb as much as possible on this so I can help others.

 

All that aside...  How are you doing these days?  Always good to read your posts... :-)  

As I said to my cousins last month when I saw them for the first time in 5 years (they saw me when I looked like a walking celiac zombie)

"Look Guys, I'm not dead!"  :D whoohoo!

 

I was going to answer you with the medical definitions of the distinction between wheat allergy, gluten ntolerance and celiac, but I see Arlene has provided a rendition that will make my explanation sound stuffy and boorish -_- so er, um, I'll just point you to it and you can read it.

Open Original Shared Link

 

 

I did have to laugh tho when someone said I was like a bag of Antlers :o:D never heard that one before ,

 

 bag of antlers?! ...holycraponacracker, that's hilarious, kiddo.  :lol: hope you laughed it off. I looked like skinny zombie old bald lady. 

Bag of antlers would have been a compliment. Mostly, I heard gasps from people I knew and got looks like this

:blink:

 

 

i also do the star trek version ;)  don't forget to tip your bartender  B)

 

I have told you, young lady, stop begging for tips. I mean it. Don't make me come over there.

And THAT is an analogy that I can grasp!  Thanks for the follow-up.  You're funny!  I see what you're saying...

 

oh gawsh, please....Do NOT encourage her.  :lol: it goes right to her purty lil head.

IrishHeart Veteran
IrishHeart
Posted

 The main issue is my stomach hurts. All the time. Constant aching and eating makes it worse. I feel bloated and nauseated after eating the smallest amount of food.

 

Nate,

The gastroenterlogist should do an endoscopy to find out why. Something is not right, hon. IMHO

Sunny FL Newbie
Sunny FL
Posted

I'm in this same full boat!  I was diagnosed the end of April of this year, I lost 30 pounds. I'm 5'8 and am stalled at 115.  I am actually wearing kids shorts WITH adjustable waist so my pants stay up.  I'm in a lot of pain when I eat and everything just runs right through me.  I'm really tired of the doctor throwing all kinds of meds at me to stop the D, I want to know what is causing it.  I had blood drawn last Friday to check for any gluten in my system and then completed a 72 hour fecal collection.  That was NOT FUN!

 

I'm still trying to figure all of this out! I am so overwhelmed! And on days like this when I'm in pain and dehydrated, I just what to give up.  Put me in a box and be done with it.  Out of my entire family, I'm the only one with celiac.

 

Thanks for letting me vent!  At least reading on here, I know I'm not the only one living with this disease.

notme Experienced
notme
Posted

sunny - i am exactly the same size as you, (well, 5'8")  - are you taking probiotics?  have you been staying off dairy?  that was key for me in the beginning, and even now if i overdo it, here comes mr. Big D  :(   it's frustrating, i know, i gained back 20-25 lbs (now hanging right around 115-117)  the wierd thing is, i gained back the weight but stayed the same size, i guess my muscles just gained back weight.  my cheeks (both sets, lolz) came back, though, and things are still healing up.  hang in there, you are still pretty new - it's taken me 3 years to get to this point.  but i went undiagnosed for 25 years, so i figure if it took that much time and i have that much damage, i'm just going to have to keep moving forward and little by little i am healing.  i feel ya!  i do pretty well loading up with protein (yeah) and i'm trying to eat as much 'dessert' as i can handle.  <not a real big dessert eater)

 

what DOESN"T help is the blue jeans manufacturers who keep making sizes smaller and smaller.  i used to wear a size 5, now the same size pants are a 1-2.  come on......!  i guess they think it makes women feel better who are trying to lose weight.  it makes me feel like i'm ineffective at my health!  

Sunny FL Newbie
Sunny FL
Posted

sunny - i am exactly the same size as you, (well, 5'8")  - are you taking probiotics?  have you been staying off dairy?  that was key for me in the beginning, and even now if i overdo it, here comes mr. Big D   :(   it's frustrating, i know, i gained back 20-25 lbs (now hanging right around 115-117)  the wierd thing is, i gained back the weight but stayed the same size, i guess my muscles just gained back weight.  my cheeks (both sets, lolz) came back, though, and things are still healing up.  hang in there, you are still pretty new - it's taken me 3 years to get to this point.  but i went undiagnosed for 25 years, so i figure if it took that much time and i have that much damage, i'm just going to have to keep moving forward and little by little i am healing.  i feel ya!  i do pretty well loading up with protein (yeah) and i'm trying to eat as much 'dessert' as i can handle.  <not a real big dessert eater)

 

what DOESN"T help is the blue jeans manufacturers who keep making sizes smaller and smaller.  i used to wear a size 5, now the same size pants are a 1-2.  come on......!  i guess they think it makes women feel better who are trying to lose weight.  it makes me feel like i'm ineffective at my health!  

 

I have been misdiagnosis for 25+ years.  I was told it was IBS.  I'm not a big dessert person either. Patience is not something I have a lot of!

I'm tryin, I have two beautiful girls to live for and I need to function and live for them.  One personal question, does anyone think of suicide? I've gotten that low but it's the dehydration talking.

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

Celiac.com Sponsor (A8-M):


eers03 Explorer
eers03
Posted

As I said to my cousins last month when I saw them for the first time in 5 years (they saw me when I looked like a walking celiac zombie)

"Look Guys, I'm not dead!"  :D whoohoo!

 

I was going to answer you with the medical definitions of the distinction between wheat allergy, gluten ntolerance and celiac, but I see Arlene has provided a rendition that will make my explanation sound stuffy and boorish -_- so er, um, I'll just point you to it and you can read it.

Open Original Shared Link

 

 

 bag of antlers?! ...holycraponacracker, that's hilarious, kiddo.  :lol: hope you laughed it off. I looked like skinny zombie old bald lady. 

Bag of antlers would have been a compliment. Mostly, I heard gasps from people I knew and got looks like this

:blink:

 

 

I have told you, young lady, stop begging for tips. I mean it. Don't make me come over there.

 

oh gawsh, please....Do NOT encourage her.  :lol: it goes right to her purty lil head.

 

 

As I said to my cousins last month when I saw them for the first time in 5 years (they saw me when I looked like a walking celiac zombie)

"Look Guys, I'm not dead!"  :D whoohoo!

 

I was going to answer you with the medical definitions of the distinction between wheat allergy, gluten ntolerance and celiac, but I see Arlene has provided a rendition that will make my explanation sound stuffy and boorish -_- so er, um, I'll just point you to it and you can read it.

Open Original Shared Link

 

 

 bag of antlers?! ...holycraponacracker, that's hilarious, kiddo.  :lol: hope you laughed it off. I looked like skinny zombie old bald lady. 

Bag of antlers would have been a compliment. Mostly, I heard gasps from people I knew and got looks like this

:blink:

 

 

I have told you, young lady, stop begging for tips. I mean it. Don't make me come over there.

 

oh gawsh, please....Do NOT encourage her.  :lol: it goes right to her purty lil head.

I'm glad you're on the up!  I will do my best not to inflate any egos on here :-)

Chrisz1000 Newbie
Chrisz1000
Posted

My personal experience with being underweight has been perhaps a bit

unorthodox. I have found that the more junk food I eat, the more I lose

weight. When I stick to 95% organic meats, veg, fruits, and dairy, I am able

to maintain, and even gain a bit when I'm working out. If I overload on grains,

sugar, things like ice cream, cookies and cake, I lose weight. It's weird but

hey, everyone's different. The biggest things that have helped me maintain

are coconut products of all kinds, using digestive enzymes and a probiotic

that agrees with me, and avoiding grains and sugar. Right now I'm 122 lbs

at 5'7". That drops dramatically whenever I go off diet. Also, sleep! I miss

sleep and I lose weight, go figure.... Pretty much I'm the opposite of all the

conventional wisdom about weight gain lol....

 

I have just experienced this very thing myself this week... at the start of this thread I said my weight had

plateau'd but, inspired by this thread, I decided to see whether I could get a few pounds on. So... I excercised less this week whilst cramming my face with snacks, treats, carbs and larger portions at every opportunity.

 

I have lost weight! Creaking joints are back too and a general uncomfortable feeling in my body, work colleagues see the difference too... I have not had any gluten this week for sure.

 

The period of stability that I was used to was down to eating healthy, whole foods at the regular meal times with nothing in between. I'm with you on the sleep thing too, that definitely helps!

notme Experienced
notme
Posted

I have been misdiagnosis for 25+ years.  I was told it was IBS.  I'm not a big dessert person either. Patience is not something I have a lot of!

I'm tryin, I have two beautiful girls to live for and I need to function and live for them.  One personal question, does anyone think of suicide? I've gotten that low but it's the dehydration talking.

sunny, if you look in my sig line, you will see i was quite ready for death - i still have things set up to make sure my husband has the greatest of ease and that things are taken care of for him - he is all set.  so, i was pretty bad off, resigned to die, i guess.  but i would never do anything to harm myself intentionally - like you said - i have kids.  that would mess them up pretty bad.  i know this first hand - my son's ex's mom shot herself when her daughters were 18 & 16 (? right around that age) fast fwd 7 years - one is in an abusive relationship and one has narcissistic personality disorder <and she is on self-destruct at all times)  so, i wouldn't want to be the cause of pain for my (already grown) babies.  but, i had basically given up.  i had every test, nothing added up.  i was on pill after pill and wierd stuff kept happening to my body.  my confidence was shot.  i felt terrible and i would get up in the morning and start thinking i needed a nap!   this dx saved my life and gave me back my quality of life (but it took them long enough to figure it out!!   :angry: )  i managed, in the mean time, to raise 4 kids with a husband continually traveling for his work and also work a full time job.   recovery gets easier as time goes by, just take it one day at a time.  gaining back some more weight is something i am working on - tried the 'boost' chocolate drink - supposed to be mega-calories - but it gave me mega D  :o  - not much of a 'boost' there....  (it had soy in it soy is an issue for me, too.  yay...)  but i should have known better - too many of them five dollar words in the ingredients ;)

IrishHeart Veteran
IrishHeart
Posted

I have been misdiagnosis for 25+ years.  I was told it was IBS.  I'm not a big dessert person either. Patience is not something I have a lot of!

I'm tryin, I have two beautiful girls to live for and I need to function and live for them.  One personal question, does anyone think of suicide? 

 

No, never.

I did think death would be easier when i was in excruciating pain, but I refused to give into that thinking.

I do not have any children and it is the biggest sadness of my life  (celiac caused many miscarriages over several years and a lot of heartache) and even though I wrote my will in July 2010 when I was dying a slow death, I  kept pushing to live and find an answer to why I was so ill and to get well. For my rock of a hubs, for me, for us. And a mother who would have been devastated if I were to die so soon after my Dad's death in 2008. So, I HAD to get well!

 

If you are serious about this, consider it is "Gluten Head" talking and just talk to us and we'll tell you....do not go there in your mind!.

if you still cannot make it stop, you may need to see someone. But my guess it is vitamin deficiencies and malabsorption causing this

frustration, fatigue and depressive thinking. Just hang in there, It gets better.

nvsmom Community Regular
nvsmom
Posted

I have been misdiagnosis for 25+ years.  I was told it was IBS.  I'm not a big dessert person either. Patience is not something I have a lot of!

I'm tryin, I have two beautiful girls to live for and I need to function and live for them.  One personal question, does anyone think of suicide? I've gotten that low but it's the dehydration talking.

I have had my greatest personal highs in my life after crawling out of low, unhealthy spots. Life is so much sweeter when you've almost lost it or your quality of life. The hard part is just accepting things as the way it is for now, and working and waiting for things to improve. Not having control over your body is a tough one to master.... Hang in there.

Archived

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

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


  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748
    Patty6133
    Newest Member
    Patty6133
    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

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.