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Question For Any Really Underweight Celiac's?
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74 posts in this topic

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

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Hi Ron, before my diagnosis I lost 40lbs in a two month period. I was very sick but actually needed to lose weight, I just wanted to make sure I didn't loose anymore. I have been gluten-free since Sept 02 and have not gained / lost any weight, but I do not want to gain it back.

Maybe once you start a gluten-free diet and your gut begins to heal you will gain some weight.

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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?--Ron

Ron,

I guess I qualify as having lost a lot of weight and as having a hard time gaining it back, but since I'm self-diagnosed (soon to change once I receive the stool kit from Enterolab) I guess I don't exacty fit the picture you have described. But other than not yet being "officially" diagnosed, I do fit the celiac disease profile some have discussed on this board. I lost even more than Stacie, about 50lbs in 2 or 3 months in '85, done to 106lbs and felt so fatigued I had difficulty walking. I was misdiagnosed, I believe, with an incurable blood disorder, though I suppose I could have this along with celiac disease, but I doubt it, not having the typical symptoms. But enough of this--there's no sense in playing the blame game, and after 19 years it's time to move on.

It took a while before the weight started to come back after going on a mostly Ayurvedic regimen--the ancient East Indian approach to health and disease that is becoming popular thanks to Chopra, and his many books on the subject. Not knowing anything about celiac disease at that time, I nonetheless followed a mostly gluten free diet, based on rice and dal (kicheri), ghee, veggies and yogurt. A good gluten-free diet, but at the time of course I did not care about this, knowing nothing about celiac disease and knowing only that gluten is useful in making "good" bread. The diet did put on the weight, about 40lbs, and I remained pretty much at that weight for a number of years until this summer when I again started to lose weight. The reason is clear to me now: I went off a strict adherence to the Ayurvedic regimen and added pasta, bread, mostly the sprouted grain and lentil Ezekiel bread (a no-no for CDers I've since learned), whole wheat breads as well, and oats, practically every morning.

That's the background. Foreground is this: I quickly lost almost all the weight I put on these past few years, again in only a few months this past summer, down to

about 115lbs, not quite as bad as before, but at 6,' it's bad enough. The strange part for me to understand is that I was without the typical symptoms, except for the weight loss--no diarrhea, no constipation, no abdominal pain, no headaches during the time I went back to eating a more typical diet. When I decided that I must have celiac disease and stopped eating gluten, except for the occasional accident, it was then that the diarrhea started, the headaches, some mouth sores, some tenderness in the nostrils. When the diarrhea abated, luckily never worse than having to go after every meal, and that for no more than a week, I became constipated--neither of these conditions being experienced while on the

gluten containing diet. Some posters have stressed that it's not unusual for the body to become more sensitive to gluten once it starts to clean house. That's been my experience.

Finally, Ron, to wrap up this overly long (for which I apologize) response to your post, I have been gluten-free, with no intentional "glutenizing" since Nov. 23rd--a little over two months. And not a pound has come back--that's the discouraging news. The good news is that I haven't lost any, and there are no more headaches, stools are starting to resembe bananas, not pudding, and there are no more sores in either mouth or nose. There is a subtle but real sense that the body is more at ease than it has been in quite a while. I'm convinced that health will return, but I feel it will take more than just being gluten-free for the remainder of my life. I'm looking to make substantive changes not only with diet but in lifestyle. I'm now exploring what can be done, in addition to avoiding gluten, so that I can return to health as quickly as possible. My hope is that by doing this I will not only help myself but be able to share more effectively with others on the board, many of whom are already doing this. I know that without them, and others on other websites, I would not feel as confident that there will be a return to health, and even greater health than before celiac disease. --Aldo

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I could never gain weight until going gluten-free. the going is still slow (I've only been diagnosed about 4 months) but the change is starting to be significant. definitely get yourself checked out! are you fatigued all the time, too? my quality of life is just so much better now. I never would have believed it.

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It seems like it might be different for everyone from reading all the posts.

You say that food goes right through you all the time? I'd say to get tested if you can. Food went through me all my life, then it started to be where within 5minutes of eating everything would be evacuated from my body in a most unpleasant and painful manner. The extreme weightloss and malabsorption seemd to be the ONLY reason they decided to start really trying to find out what was wrong. I was down to 75lb's and they just couldn't ignore it anymore.

I've been Gluten free for about 8months now and I stay a 80lbs and can't seem to gain anymore. :(

It may depend on how damaged your intestines are (?), I know that mine were extremely damaged from 32 years of stumped doctors. Perhaps when they heal enough you will begin to gain weight. I'd like to be have some weight gain in the near future also :)

Good Luck

micky

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I recommend coconut oil for those trying to gain weight while their intestines heal. It is absorbed differently and more easily than most fats. An internet search will explain more about it and where to buy it. (I gained 10 pounds in 2-3 months eating this, although to be honest, I didn't want to--I was only trying to get more energy! Still, this may help the truly underweight.) Best wishes!

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Ron, Stacy and all the others who posted for Underweight Celiacs..

You have NO IDEA how strangely comforting it is to read these posts...I have not been diagnosed yet..doing the blood tests on Monday and the stool tests as soon as they get here..Ron-I too have had symptoms of Celiac all my life but never even knew of the disease until I was diagnosed a diabetic and began researching alternative eating it's taken me two years of different eating habits to come across Celiac disease. I have lost over 25 lbs in the last year and a half and am 5' 4" and weight in at 106. My bones ache, my muscles ache, I am either crying or irritable and I have no concentration. I have had so many tests that I feel like a research experiment but nothing has been conclusive except that I have mild osteoporosis (I am only 34) and that my blood sugars are still not normal although I keep them half way controlled. I feel, most times, like I have bone cancer - infact I am scheduled for a bone scan of my wrist and hand sometime this month due to the osteoporosis. I don't sleep well and am ALWAYS tired. I have been following a gluten free diet for only about a week and the first 4 days I did feel better but I must have gotten something contaminated because the last three days have been utter HELL! I have switched to Ezekiel bread but from your post I see that it's not a good choice, at which I cried...I am so frustrated right now and feel so bad...What kind of bread can I eat? The headaches are almost debilitating sometimes. I also have gall bladder problems to which they want to give me a hide a scan to see if it has porcenalized. Frankly, I feel like there is no light at the end of the tunnell and lately I have just been asking God to take me in my sleep because having to wake up and face the pain is getting to be almost too much but I have three children that need me so I guess I am glad that God hasn't listened to me on that one. Anyway, this is long winded but it feels good to get it off my mind. I'm glad to see other people out there who have the same symptoms.

Leslie :(

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Hi,

I am a recenty (last week) diagnosed celiac. I am scheduled for an endoscopy on the 28th, so I have not gone 100% gluten-free yet (so as to not skew results). I HAVE ALWAYS BEEN FAR TOO THIN, NO MATTER HOW MUCH I ATE. I am 37 years old, and the mother of 3 boys. I am 5'10, and my highest non pregnant weight in the last 10 years was 119lbs. After knee surgery in Aug, I became steadily more ill. Nausea, pain lethargy etc... I have lost 7 lbs. I am so anxious to go gluten-free because I truly believe it will help. It is so depressing to be painfully thin, to have other women tell you that you're so lucky to be thin, and to feel defensive about your appearance. Many people think I look great....they are crazy. MY NEW YEAR'S RESOLUTION IS TO BE gluten-free, HEALTHY, HAPPY AND TO GAIN AT LEAST 15 LBS.!!! I am so happy to have an answer, and a plan for recovery.

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ARMYMOM3....

IF YOU WANT TO CONTACT ME, WE CAN COMMISERATE. I FEEL A LOT LIKE YOU, BUT AFTER FINDING OUT I HAVE CELIAC I FEEL MORE OPTIMISITIC. I AM HERE IF YOU NEED ME.

SHARON

P.S. BUY A BREADMAKER AND GO TO THE HEALTH FOOD STORE FOR PRE PACKAGED gluten-free BREAD MIXES.

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I was diagnosed last May and have been gluten-free since. I was on birth control and that kept some weight on me as well as more frequent pain and constant bloating. That has improved since being off of birth control for approx. 3 months...BUT I am now down to 102lbs, and I am 5'4". My appetitite is not as great since being off the BC, but I eat. I need to eat more, and healthier food. I also have osteopenia so I need to start exercising, but I am afraid to lose more weight. I have always been thin. In HS I actually weighed 120 lbs for about a year or so. I felt much prettier at a "normal" weight. I loved being pregnant for this same reason.

I am thinking about getting a bread machine and I would like to know how to incorporated coconut oil into my diet. I need a good supplement to with calcium and Vit D (for bone loss). Does anyone know of one that is gluten-free? I suppose that is a different thread. I will keep checking this as I would love to gain some weight, although I am trying not to obsess about it as I have in the past.

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Thank-you so much for creating this post. I am 5'7" and weigh at the most 115 lbs. I am so tired of my appearance, it seems a lot of people are as hard on thin people as they are on people that are overweight. Initally I lost a lot of weight and have worked hard to put on more weight. It just isn't happening. People can be so rude, I told a co-worker that I had put on three pounds and she said, "don't say that out loud, becasue so many people here are trying to lose weight." I also see the way people look at me, and I won't go into the celiac disease etc. because to me it is very personal and most people seem to assume that it is just an allergy to wheat. I tried on a pair of pants yesterday and they were a size 3, and I wanted to fit in at least a 7. If anyone has any ideas I would appreciate it. I used to eat gravy, all kinds of bread, pasta etc.

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Hi!

When I was very sick with celiac (before diagnosis) I lost close to 15 pounds and found it very hard to gain weight. I was underweight, I'm 5"6 and 3/4 (almost 5"7) and I was hovering around 112/114 pounds at the time.

After being on the diet for almost 10 months I have gained some weight but not a noticable amount. I'm now about 119/120 pounds which is normal but borderline underweight.

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I, too, have posted about wanting ideas on how to gain weight (I'm about 5'5 and 102 pounds and really want to gain back 15-20 pounds). I've been gluten-free for about 2 and a half months, and I haven't gained back a pound. Here's my thought, though: I no longer eat out (and if I do, it's at Outback very occasionally) and I no longer eat a lot of fatty, preprocessed food like I did pre-diagnosis. I think that's what may be holding some of us back from regaining the weight--I feel like in some ways the gluten-free diet is healthier in that it rids our bodies of all this processed stuff that's in so much food.

I've also been told that Boost Plus and Ensure Plus (both of which are gluten-free and lactose free) are great to add on weight; I haven't tried them yet, though.

Good luck to everyone out there; I can certainly commiserate, as I repeatedly get people commenting on how thin I am (some have even told me they believe I have an eating disorder--sigh).

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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

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Viactiv Chews are a great way to get Calcium and Vit D....

They taste like candy and provide 500mg Cal per chew..

I have 2-3 a day...

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Hi everyone

My husband w/celiac disease lost 30 lbs upon first getting celiac but was misdiagosed for over 25 years. He was about 175 to start, lost the first 30 then slowly went down to 128 (he's 5' 10" tall and had a medium muscular build to start). Over the years he varied from 128 up to 155; finally his body gave out and he plunged back down to 128. He was finally diagnosed in 2003 and went 100% gluten-free. His symptoms did not totally go away until he was gluten-free for about 16 months. At the 16 month point, he finally gained 2 lbs and is now 130.

I do not have celiac disease and I really feel for him and others with this problem of not keeping their weight on. I have the opposite problem as I struggle to keep it off. I know how hard it is to be on a special diet and not get results - so I guess that's where the similarity is. He's frustrated because I outweigh him by a lot. I wish we could switch weights.

The Ensure and Boost products have soy and milk in them, and if you're sensitive to soy or milk you won't be able to tolerate it. That's my husband's problem with them. I try to get him to eat some gluten-free with butter with dinner but he's stubborn and doesn't want to eat unnecessary fat as he calls it. His cholesterol is under 180 so I know he's just being stubborn on this issue.

My hope for all is that you gain back health and stamina and that both will bring back some weight for you.

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I am 5'8" and around 115 to 120 pounds. I was diagnosed with celiac when I was 3 years old and I'm 36 now. I've always had an underweight problem. I can build muscle pretty quick, but lose it quick also. I would like to gain some weight if possible. Does anyone have any advise? Are there any weight gain drinks out there that are safe?

I have read many of you alls posts and can relate to all of you. Having this disease all of my life, I wish I had a dollar for every time I had someone tell me that I needed to gain weight, or make comments about my weight. People don't realize that to call a thin person "skinny" or make fun of them, is just like calling a larger person "fat". There are so many people out there that just don't know, or understand the disease. I was surprised to see that there are so many people that are having the same problem. Thanks.

Marty

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Ron, charlotte, and others who are thin,

I too am thin and I agree it's somewhat comforting to know that others have the same concern with this. I will be 50 on Easter and weigh about 110 at 5'7". I was down to 100 when I was diagnosed in 2003, but likely have had celiac most of my life. During this past summer, I was up to 114 and feeling better at that weight, but stress and stomach issues seem to go hand-in hand--so I'm down again. I went to a nutritionist--that helped alot, getting on a good meal plan, which required snacks, basically 6 small meals a day. That's hard for busy people. I'm a teacher so it's not like I can take a break when it's time for snack!

But what really annoys me is when people will say "Ew, you're really skinny!" When was the last time anyone walked up to someone they knew or a stranger and said, "Ew you're fat." THAT is socially unacceptable behavior. But skinny people seem to be fair game for criticism. We live in a society that is obsessed with weight-loss programs and we are the antithesis of that. We TRY to gain weight and that just seems wrong to the general population. I never wanted to be underweight as I am sure you did/do not. But the good thing is that overall I feel better on a gluten-free diet as I am sure you will too, but if my nutritionist is correct, it takes time and patience while healing. She said that I needed to be 115 before I was truly out of the malnourished zone, and I'm not there yet which undoubtedly accounts for the bouts of fatigue which I struggle to hide with minimal success.

My children are 18 and almost 21 now and fortunately have no symptoms (they do not want to be tested). They see what have gone through and are relieved that I am on the road to recovery. I spent decades in denial and hiding my problems--how pathetic! I only wish I had sought real help sooner! Don't delay testing if you have symptoms!!!!

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When I was younger (child) I never paid much attention to my weight. With 17 I competed for the first time in the 50 kg (110 lbs) class and those days I had 49.5 kg (109 lbs). My height is 5'3". With every year that passed I gained!!! weight, despite working out like a nutball. And soon I had slight problems to hold the 50 kg weigth. After three years or so I ran around with 50.5 (111 lbs) or 51 kg (112 lbs) all the time. (Short after that the pain started, too.) A view days prior to every tournament I had to really cut out any food, to "make weight". It hardly helped, I was so desperated. From my first competition in 1994 until 2004 I gained about 7 kg (about 16 lbs) which was the end of the world for me pretty much. Cause I didn't want to fight giants in my weight class.

And now, since my diagnosis 07/21/04, I practically shovel food into me and I'm back to about 111 lbs now. Awesome!!! Well, I can work out without restrictions and almost without pain again. So that's why, probably. No problem for me. One more pound less and I'm back in my old warrior class. Ha!

Hugs, Stef

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Wow I'm so glad to read these posts (not glad for you all, but just glad in general) :huh: I have been thin my entire life: I was a "failure to thrive" baby, and every doctor i've ever been to that I can remember has asked if I was/am anorexic/bulemic!!! No matter what I'd do, I simply couldn't gain weight. I remember when i was 10, NYS came out with a law that any child under 65 lbs needed to be in a booster seat in a car (or whatever it was) - i was 60 lbs!!!!!!! I'm still young-ish (21) but the most i've ever weighed was 120 (i'm 5'10"!!!) and that only lasted for about a week and was while I was glutening myself (before I knew about celiac disease and GI). I had to go back to the doctor's about 2 weeks ago since I was silly and expected a doctor to be able to help my stomach pains, and was told that (1) I lost more weight and was down under 115 again - the 2nd time in my life since I had reached that weight; and (2) that unless I have some unknown disease I was plain and simply anorexic! I couldn't get out of the office fast enough. Since then, I've been working on trying to find out what was wrong w/ me and to help me gain weight. I've been on the gluten-free diet since and have started to feel better, though the change is difficult sometimes. My boss says that I look like I'm feeling better - read, I don't look like the living dead - which is nice, but I've lost even MORE weight then gained it and now i'm just afraid to look at a scale lol. Hopefully after a few more weeks on this diet, I'll feel completely better (I've only had the pains associated w/ GI for the last few months, though I've always been thin and had food "go right through me") AND start gaining weight. EGGS HERE I COME!!

Shelby

Anchorage, AK

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Ron, Stacy and all the others who posted for Underweight Celiacs..

You have NO IDEA how strangely comforting it is to read these posts...I have not been diagnosed yet..doing the blood tests on Monday and the stool tests as soon as they get here..Ron-I too have had symptoms of Celiac all my life but never even knew of the disease until I was diagnosed a diabetic and began researching alternative eating it's taken me two years of different eating habits to come across Celiac disease.  I have lost over 25 lbs in the last year and a half and am 5' 4" and weight in at 106.  My bones ache, my muscles ache, I am either crying or irritable and I have no concentration.  I have had so many tests that I feel like a research experiment but nothing has been conclusive except that I have mild osteoporosis (I am only 34) and that my blood sugars are still not normal although I keep them half way controlled.  I feel, most times, like I have bone cancer - infact I am scheduled for a bone scan of my wrist and hand sometime this month due to the osteoporosis.  I don't sleep well and am ALWAYS tired.  I have been following a gluten free diet for only about a week and the first 4 days I did feel better but I must have gotten something contaminated because the last three days have been utter HELL!  I have switched to Ezekiel bread but from your post I see that it's not a good choice, at which I cried...I am so frustrated right now and feel so bad...What kind of bread can I eat?  The headaches are almost debilitating sometimes.  I also have gall bladder problems to which they want to give me a hide a scan to see if it has porcenalized.  Frankly, I feel like there is no light at the end of the tunnell and lately I have just been asking God to take me in my sleep because having to wake up and face the pain is getting to be almost too much but I have three children that need me so I guess I am glad that God hasn't listened to me on that one.  Anyway, this is long winded but it feels good to get it off my mind.  I'm glad to see other people out there who have the same symptoms.

Leslie :(

<{POST_SNAPBACK}>

for those of you who are underweight, I have a few questions. My two sons, ages 18 months and 4 years old, and myself, age 29, have all been diangosed with celiac disease. I am very thin, 5'3" and weighed 110 lbs when I started the diet one month ago. I have lost 5 pounds and do not feel better on the gluten-free diet. We have been very strict on the diet, and the ony gluten we have in the house is one loaf of bread for my husband. My 18-month old has only gained 1 pound, and my 4 year old has not gained any weight. I am just wondering how my kids can gain weight fast. My 4 year old only weighs 30 pounds!!! My kids have been eating more, but do not seem to be gaining any or much weight. Any suggestions would be greatly appreciated.

Angie

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I would love to know how I can gain weight. I am 5'2" and 100 lbs. I also have people telling me that I look like I am losing weight. I even have doctors telling me that I need to gain weight. I have been gluten-free for about a year and have not gained any weight. Like everyone else, I also lost a lot of weight when I first started my diet. I am afraid to get on a scale. I have been trying to gain weight all summer so far, but am not sure if I have been very successful. I think I may have gained only one pound, which I think will go once school starts, since I am a teacher.

I think part of my problem is that I have developed lots of allergies. I am allergic to eggs, dairy, yeast, some beans and some nuts. Oh, I am also being treated for TMJ and a pinched nerve in my neck, therefore, I have pain in my neck, head and back.

I am currently eating soy yogurt with meals and it is helping me feel better, stronger, like I am getting some nutrition. (I also had no bacteria whatsoever in my intestines.) I tried ensure and can only tolerate about an ounce of it at a time. I only take cal/mag/zinc, C and B vitamins because I have difficulty tolerating the multis. I don't know what's in them that I can't tolerate. To top all this off I am very, very chemically sensitive. So if anyone has any tips or ideas I would really appreciate it.

Aloha from Hawaii,

Susette B)

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I was diagnosed almost three years ago. At the time, I was about 160 pounds.

The first year after going on a gluten-free diet, I lost about 10 pounds, finally bottoming out at 149 to 150.

After about a year, I began to put on weight a little at a time. I managed to get up to 162. Unfortunately, I started a rather high-stress job and dropped 15 pounds in about 10 days.

The job is history, and so is my weight gain. At 5'11'', I just don't look good at 147 pounds. :(

An added problem are other food issues. I am lactose intolerant and albumen intolerant. That means steering clear of dairy and eggs. No problem at home, but eating out is a real chore.

I also am on medication that must be taken every eight hours on an empty stomach. This means no food two hours before or one hour after taking them. These medications also have the unhappy side effects of causing elevated blood lipids (cholesterol, triglycerides) and inducing hypercglycemia (sometimes called pre-diabetes.)

I would like to include more beans and peanut butter in my diet in an effort to regain my weight, but they cause really severe bloating. We're talking gas from the underworld here.

Has anyone else experienced this? I am running out of food options. Any suggestions?

Mark

Edited by hungryman
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Mark,

Have you tried using digestive enzymes to help lessen/eliminate excess gas?

Also, Ensure really helps me keep on much-needed weight.

Best wishes,

Gina

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Hi Mark,

I am also sensitive to beans and peanut butter. If you want to gain weight make sure you are in a positive energy balance (eat lots!). Maybe try to include more rice products, such as cream of rice (oatmeal) in the morning and rice bread for lunch. Also you may want to try almond butter. I have found that I am crazy sensitive to peanut butter, but can tolerate almond butter very well....it also is full of calories!

If you like smoothies, you could also look into meal replacement powders. Just mix some frozen berries, juice and a scoop of powder in a blender. It's an easy way of getting in a lot of energy.

Good luck!

Heather : )

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