Question For Any Really Underweight Celiac's?

[lele123]

I understand that recent studies have shown that as many people with Celiac are overweight as underweight but I have a question for underweight people.

I'm a middle aged man who has always been very underweight no matter how much I ate. After coming to this site I'm beginning to wonder if I may have Celiac and am considering testing. I have some of the syptoms-many trips to the bathroom (4-5 times a day is normal) but only occasional diarrhea-but food does seem to go right through me.

I was wondering if any of you have had a hard time gaining weight until you were finally diagnosed, then after you went glutten free were you able to gain weight?

thanks, Ron

[lele123]

I sympathize as I have always been underweight even though I eat fine. I am now 47 and still underweight after being on a strict gluten free diet for 12 years. I have to take enzymes everytime I eat so the food will digest. I also have food allergies and can only have a small amouont of dairy, sugar and oil. So all the things that make one gain weight I cannot have much of. The practitioners have all told me I have a week spleen and I attribute that as to why my arms and legs are twigs. Underweight runs in my family but I am the skinniest.

Well....I'm just happy for the days when I feel good and have energy.

[ranger]

I am 5'4"" and got down to 86 lbs. A walking skelatin. Been gluten free for 7 months and have slowly gained 10 lbs. I'm going to add some exercise now that I'm feeling stronger. My dumb doc saw nothing wrong with a thin woman losing 25 lbs. in a few months! I don't have any faith in the medical community anymore.

[Gemini]

I understand that recent studies have shown that as many people with Celiac are overweight as underweight but I have a question for underweight people.

I'm a middle aged man who has always been very underweight no matter how much I ate. After coming to this site I'm beginning to wonder if I may have Celiac and am considering testing. I have some of the syptoms-many trips to the bathroom (4-5 times a day is normal) but only occasional diarrhea-but food does seem to go right through me.

I was wondering if any of you have had a hard time gaining weight until you were finally diagnosed, then after you went glutten free were you able to gain weight?

thanks, Ron

Hi Ron,

I am 5'4" tall and my weight was down to 97 pounds at time of diagnosis. I started to gain weight around the 6 month mark and today, 4 years later, I am a healthy 112 pounds and holding. I am 50 years old so have to watch what I eat now. If you have celiac disease and stay on a strict gluten-free diet so healing will occur, you should be able to gain weight. FYI, pre-diagnosis I was able to eat 3,000 calories a day and never got my weight over 105 pounds....ever.

[ScottyB]

i am tall and skinny. always have been my whole life and just thought it was a high metabolism. no matter how much i ate, i couldn't put on any weight, period. i'm 6 foot and right around 133-136. to put it lightly, i'm a freaking stick!!! i also have pectus excavatum (not that bad, but still noticeable), but all this has added up to a 'bad' body image complex that i had problems dealing with throughout high school. when i got to college, i matured and made great friends. now, i couldnt careless what other people think, its a waste of time and emotions to let that stuff bother you.

after about 3-4 weeks of 99% gluten free diet and some good rock climbing trips, i've noticed some weight gain around my core, arms, and shoulders. i've always been active and never let my low body weight hold me back, so i'm gonna stick with the diet (duh) and just try to increase my caloric intake to 3000+ a day in hopes that i get some meat on my bones!!

i just found this site and plan on keeping my diet and progress updated. any other young men that have a similar experience?

[spent]

i am tall and skinny. always have been my whole life and just thought it was a high metabolism. no matter how much i ate, i couldn't put on any weight, period. i'm 6 foot and right around 133-136. to put it lightly, i'm a freaking stick!!! i also have pectus excavatum (not that bad, but still noticeable), but all this has added up to a 'bad' body image complex that i had problems dealing with throughout high school. when i got to college, i matured and made great friends. now, i couldnt careless what other people think, its a waste of time and emotions to let that stuff bother you.

after about 3-4 weeks of 99% gluten free diet and some good rock climbing trips, i've noticed some weight gain around my core, arms, and shoulders. i've always been active and never let my low body weight hold me back, so i'm gonna stick with the diet (duh) and just try to increase my caloric intake to 3000+ a day in hopes that i get some meat on my bones!!

i just found this site and plan on keeping my diet and progress updated. any other young men that have a similar experience?

Scott

Sounds just like me. I am a 6 ft 3 in male and weight 150lbs. I am just now 20 so it was easy to dismiss my lack of girth as "still growing". Over the last couple years, I have put forth several efforts to gain weight by both consuming several thousand calories daily and rigorously lifting weights. My end results netted me achy joints and constant gas/bloating/etc but no weight gain. Well, suprise suprise, after nearly 8 months of back and forth trips to the doctor, it was discovered that I have elevated gliadin antibodies. I just had a biopsy last Monday and have been gluten free now for a week and a half. While of course I don't expect anything dramatic right away, I have noticed some obvious added muscle on my forearms so hopefully that is a sign of good things to come. I am making sure that I am eating graciously but my bowel movements still are infrequent and my stool is abnormal which, to me, are a good indications that my digestive system is still a long way from a full recovery. Once those two things normalize, I will probably head back to the gym and start a 3000+ diet. I figure my calories are best spent for recovery right now.

I'll keep you informed on my progress and I will be interested on updates from you as well.

Shane

[Chuck8268]

I am new to all this and it is so good to read that there are others! I am 5'8" and am just now getting up to 114 pounds. Most of my teen/adult life I have had to struggle to maintain 100 pounds (I am 46) In the last few years I would add weight then lose it, so at any given time I would weigh either 140 pounds or less. When I would lose it, it would be quickly. In hind-sight I now realize it was probably symptoms of Celiac and something I would be eating. This last time I went down to 107, that was three weeks after the doctor told me to eat gluten-free! I lost 10 pounds in three weeks. It is very frustrating I agree with the others, and the is little "sympathy" for underweight folks. I cannot tell you hao many times I have hear "I'll give you some of my extra weight", "wish I had your problem" "be happy your not like me...." Even my mom says ... "you would look so much better if you put on more weight" Good thing I have a good sence of humor or I would be crazy. I love this site and am anxious to continue "talking" with folks that "are there and trying that"

Laura in Ohio

I was the same way all my life a 6 ft 165 pound man.I would go thru tiny gain/loss spurts which people always noticed. As I got older my symtoms worsened to a point at age 39, I had constant diarrea.Went to docs,did 6 weeks worht of testing, couldnt find anything.Put me on sterioids which helped for awhile,off and on steriods for 6 yrs til he died.Went to ned doc,she diagnosed me right away.The next 6 months I went from 136 to 190.And weight gain just stopped/.I ride a bike alot,so I`ll probably maintain that weight.People now say,wow you look so much better

Chuck

[spent]

I was the same way all my life a 6 ft 165 pound man.I would go thru tiny gain/loss spurts which people always noticed. As I got older my symtoms worsened to a point at age 39, I had constant diarrea.Went to docs,did 6 weeks worht of testing, couldnt find anything.Put me on sterioids which helped for awhile,off and on steriods for 6 yrs til he died.Went to ned doc,she diagnosed me right away.The next 6 months I went from 136 to 190.And weight gain just stopped/.I ride a bike alot,so I`ll probably maintain that weight.People now say,wow you look so much better

Chuck

Wow, nearly 60 pounds. I would be happy to gain half of that!!

Did you put forth any extra effort to put on the weight? I am also interested about your timeline. You said 6 months; how soon did you really start noticing the extra pounds? Was it a pretty steady gain over the 6 months?

Thanks

Shane

[JAMR]

I am a 52 year old male and have probably unknowingly had gluten issues all my life. I was a skinny kid, worked hard to gain weight as an adult and managed somewhat altho at 6ft 3, maximum weight was 180lbs/82kg. Went on gluten-free diet 1 year ago, after losing 5kg in 6 months, and 5 kg before that over a couple of years. Weight is now 74kg/163lb after a low of 72kg.

For me I only began to recover weight around 8 months into the gluten-free diet, tho I am sure I made some mistakes along the way. Had a definite problem with some other foods and probably food contaminated with gluten, which knocked me back for a few months.

So it looks like my intestines took 6 months plus to recover enough to reabsorb food and gain weight, also assisted by enzymes, glutamine, and some gut flora supplements. Being healthier also allowed me to exercise (weights, swimming etc) which boosted my appetite. Even at this rate of quite normal exercise and diet routines (plus the enzymes etc) my weight gain has only been 1 or 2 kg per month.

I have assumed that there has been some damage to my gut that is recoverable (my iridologist tells me I have no permanent gut damage at this stage), but at my age it probably takes a while to regain all that has been lost over the years.

Also find that after gluten mistakes my sensitivity is far higher than before. Also complicated by other food reactions, milk, cashews, soy and some unknowns.

[Wolicki]

I was down to 97 pounds (at 6 ft tall) and nearly dead before I finally got diagnosed. What worked for me was peanut butter! It will put some weight on rather quickly. I got in hte bad habit of dipping a spoon in to the jar many times per day. Like a big cereal spoon

Now PB is my evil nemesis- I can't stay away from it, but I don't want to get fat either, so I only buy crunchy PB for my kids (I don't care for the chunks). Hope that helps!

[Candice4]

Wow, is all I can say after reading this post. Just to know that I am not alone.

[Chuck8268]

Wow, nearly 60 pounds. I would be happy to gain half of that!!

Did you put forth any extra effort to put on the weight? I am also interested about your timeline. You said 6 months; how soon did you really start noticing the extra pounds? Was it a pretty steady gain over the 6 months?

Thanks

Shane

Shane

I kinda did put in extra effort to gain.Lots of potatoes,rice,etc.But we are all different in healing.My theory anyways.All I know my gain just stopped,like a light switch when I got to that certain weight.Hope this helps you

Chuck

[mamies8]

I also am VERY thin. I have been gluten-free now 2 1/2 years and while I have managed to gain 15 lbs. since then it still isn't enough. Our society says it''s "rude" to comment on someone who is over weight, yet it's open season on those who are thin. If I hear one more person say "do you ever eat?" or "you're skinny as a twig!" I'm gonna crack! It hurts my feelings:( I am very blessed to have a husband who loves me no matter what, but when I look in the mirror and wish my body matched a womans form and not a girls, it feels hopeless. I will say that as time has gone on I have found that eating foods high in the "good" fat like avacodos help. Meats, cheese(if dairy is on your ok list), and gluten-free pasta help with weight gain!

[DougE]

I was underweight my whole life. Then when I went GL at the age of 50, I gained 15 to 20 lbs and have been stable at that. I have been lucky as I am now at a good weight. A friend of mine who was underweight before going gluten-free, gained too much weight afterwards and had to work at taking the extra weight off. I suspect everyone is a bit different.

[chatycady]

I've been gluten free for about 3 years. I wasn't heavy before, 5'4" and 135 lbs. Since going gluten free and having to eliminate lots of food (dairy, grains, sugar etc.) I am under 120. I too get rude comments. I don't like how I look at all. My legs are like tooth picks. I eat a lot! Or I think I do. I have a lot of trouble with carbs - so stick with fruits, veggies and meat and yogurt.

Can't do nuts. Here's what I usually eat

3 eggs scrambled in butter

piece of fruit and yogurt.

double serving of meat with veggies, 1+ cup of yogurt (lactose free)

more fruit

1/3 hamburger with onions, veggies with butter

1+ cup yogurt

dill pickels

olives

carrot sticks, celery, cauliflower for crunch snacks.

And I keep loosing weight - although much slower now. I pray I stop soon.

I am active and have tons of energy. I just would like some padding. My tail bone started hurting a couple weeks ago and I think it's because of the weight loss.

Life goes on!

[DreamWalker]

I've had two pre-gluten free eras. The first one I don't remember well yet I was 65lbs and around 5ft.

The second time I was in the mid-to-high eighties at 5ft 2in. (I think. The weight loss disturbed me so I quit stepping on the scale.) And the most bizarre thing about it was my appetite was absurd. I would eat entire jars of nut butter in one sitting. Once I calculated how many calories I was eating on average per day and it was around 4,000. This was never abnormal for me yet I was usually around 110 to 115 lbs. I was diagnosed with Celiac Disease yet I recently found out that during my EGD they didn't take any biopsies. Now I'm just confused but given how sick I become from mere cross contamination, I doubt the diagnosis was wrong.

Plus, I went from ~87lbs to 107 lbs on the gluten free diet.

Now, I'm dropping weight again yet it's due to ongoing non-celiac related GI issues.

Anyway, sunflower butter was my life saver. Although, to this day, I can't keep nut butter in the house - I'll eat the whole jar. (I'm perpetually hungry.)

Sunflower butter is delicious on just about everything - corn or rice cakes, bananas.

Almond butter mixed with maple syrup on gluten-free pancakes or waffles is heavenly.

Check out Enjoy Life Foods - they have the most amazing gluten, soy, dairy, free foods that are rather high in calories.

[jackay]

I also am concerned about the weight issue. I lost 30 pounds in about two months. I got extremely depressed. Antidepressants did nothing for me. I was put on an antipsychotic drug. I gained weight back very fast. The medication did nothing for my depression so I quit taking it.

The weight stayed on until about a year and a half ago. I started eating healthy and rotated my foods. I lost the thirty pound weight gain over a six month period. I wasn't noticing stomach issues until about about six months ago. Since then I have lost a little more weight. I know I am not getting enough calories but when I eat more my stomach issues get worse.

I hope my doctor will be willing to run more tests because I know I have to be deficient in nutrients. I really don't want the expense of more supplements but I need to get on the healthy bandwagon. I never thought the day would come when I wanted to gain weight but it has.

[Katie B]

I also have had a terrible time gaining weight, however, I am just newly diagnosed so hopefully I can get the weight back soon!

I have 6 small meals a day. I drink avocado milkshakes (sounds gross I know but it actually tastes good!). I use 1 avocado, a bunch of almond milk (can't tolerate dairy or soy at the moment), a bit of sugar, vanilla and a few ice cubes. I've also been using almond butter on gluten-free toast and drink protein shakes (vegan whole protein supplement). I also add olive or flax oil to rice and make things like gluten-free chicken fingers and home fries.

I've been seeing a dietician and really it's all about the calories in and out. I used caloriecount.com to calculate how many calories I need per day in order to gain a pound a week - it's quite a lot of calories. I'm hoping that now my diarrhea has subsided I'll be able to gain the weight back.

As a word of warning regarding Ensure and other supplemental drinks - I drank these previously, however, now have pre-diabetes (I was also indulging in other sweets). I think for those of us who are underweight the spikes in blood sugar caused by such drinks are more dramatic and can lead to more complications. I would concentrate more on healthy fats rather than sugar and it's probably better to make your own shakes and avoid the preservatives and extra sugar.

Hope this helps!

[Mr. Oizo]

Currently I am 6" tall, and weigh 138. Since i was diagnosed in late November I've gained about 3 pounds. I hate being called "skeletor" and other nicknames, how can people say they envy me? (mostly chicks WHICH IS EVEN MORE EMBARRASSING). I am tired of all this crap, i just want to be healthy and fit. Just letting people know you have a fellow REALLY underweight celiac out there who's gonna fight back and pack on some pounds!

I'm about to start buying some 'ensure plus' and see how that goes, hopefully gain some weight for my birthday in march!

[evi]

I also am VERY thin. I have been gluten-free now 2 1/2 years and while I have managed to gain 15 lbs. since then it still isn't enough. Our society says it''s "rude" to comment on someone who is over weight, yet it's open season on those who are thin. If I hear one more person say "do you ever eat?" or "you're skinny as a twig!" I'm gonna crack! It hurts my feelings:( I am very blessed to have a husband who loves me no matter what, but when I look in the mirror and wish my body matched a womans form and not a girls, it feels hopeless. I will say that as time has gone on I have found that eating foods high in the "good" fat like avacodos help. Meats, cheese(if dairy is on your ok list), and gluten-free pasta help with weight gain!

I hate(!!) it when people say hurtful things like that. I'm so self conscious about my body and that doesn't help! I get people saying that theres something wrong with me, like i'm anorexic. Even my mom accused me of it. Its like not being able to gain weight is a flaw in your character. And they all try to "save" you by giving you the great wisdom of the world-- eat more. And your like "no really? havnt tried that one... oh wait."

[aggievets3]

Greetings, first I would like to say thank you to everyone. I started my gluten free "lifestyle" (cause lets be real...it is way more than just a diet) in October of 2009 and just recently discovered this website. In the 4-6 month time fame it took for a diagnosis I lost about 40 lbs. At 5'3 I am hovering at 103. I would really like to gain a little not because I care about numbers or pant sizes but I feel weak. I am a massage therapist so I burn a fair amount of calories on a daily basis working and my clients expect deep tissue work from me not just a soft rubdown and I just don't feel like my muscles can keep up with the demand. My largest frustration is that it will take me 2 wks to gain 3 pounds trying very very hard then all it takes is 1 day that I am really busy and I lose at least those 3 pounds and sometimes 5 in only 1 day, so I just can't keep up. I don't want to just gain belly fat so I don't shy from high fat foods but I try to keep them in very small portions. Eating lots of small meals does seem to help with the weight but when I have to think about what I'm gonna eat and preparing it 6 times a day really makes me hate food even more which I'm sure is part of my weight struggle. I'm just so mad at food and yes to the other string of comments I'm so sick of being "so lucky" to be thin or people telling me to just gain some weight like I'm not trying and I should just do it. I've always been on the thin side but not like this, I'm just tired of feeling so tired and weak. Any suggestions??

[Squirrelflight]

I have always been underwieght. I didn't break 100 lbs until in my twenties. Have never weighed enough to give blood, etc. Basically it has been normal all of my life to be too thin. I'm 5'3 and have generally weighed about 103 lbs.

I have gained 8 lbs since going gluten free about a month ago. So for me gluten has apparently been an issue with my low weight.

[Squirrelflight]

I also am VERY thin. I have been gluten-free now 2 1/2 years and while I have managed to gain 15 lbs. since then it still isn't enough. Our society says it''s "rude" to comment on someone who is over weight, yet it's open season on those who are thin. If I hear one more person say "do you ever eat?" or "you're skinny as a twig!" I'm gonna crack! It hurts my feelings:( I am very blessed to have a husband who loves me no matter what, but when I look in the mirror and wish my body matched a womans form and not a girls, it feels hopeless. I will say that as time has gone on I have found that eating foods high in the "good" fat like avacodos help. Meats, cheese(if dairy is on your ok list), and gluten-free pasta help with weight gain!

Totally agreed. This is an issue I have dealt with for decades. People just don't get it that very think people are also self conscious of their weight/size. That some of us cannot help and do not 'purposely' strive for it. Clothes shopping is also a nighmare at that size. I have also found it very hurtful and would not wear shorts, skirts, etc that show my legs bc of comments. Summer is hard bc less clothes and every 'notices' how thin I am. Very frustrating and rude if you ask me. At least my coworkers/family etc know I'm sensitive about and don't go there. LOL

Michelle

[ezgoindude]

I understand everyone on this thread is probably no longer active... But your words are comforting. My diagnosis is unknown, but changing what I eat has made gradual, positive improvements, except for my weight.

Similar to others, it can take weeks for me to gain a couple pounds, yet almost as fast to lose it all in one or two days.... Reintroducing food groups is rewarding but exhausting, can't wait to eat more than salads...

It's interesting that my fecal fat test came back normal, yet fat is the one thing my body doesn't have much of?!? Anyways thank you