[ronapa]

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

[aldociao]

ronapa, on Feb 1 2004, 09:54 PM, said:

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

[jen-schall]

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.

[micky]

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

[YankeeDB]

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!

[armymom3]

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

[charlotte_cat]

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.

[charlotte_cat]

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.

[Karina]

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.

[Rikki Tikki]

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.

[Carriefaith]

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.

[jmengert]

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).

[lcmcafee2]

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

[megzmc3611]

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...