Frustrated...i Dont' Care Anymore

[Natlay]

For the last few months my family has been bugging me that I need to gain back the weight I lost when I first got sick...and I have been trying so hard. I ate literally four or five jars of peanut butter in the last four days...I've been eating all the time for weeks and I still look like a skeleton. The only thing it has done is make me feel sick constantly. My husband says I should gain weight first then get my stomach back to feeling good but he doesn't understand how bad it feels sometimes. I am at the point where I don't even care how I look...I just want to feel better. I hate the looks that I get a lot of times, but feeling bad just isn't worth it. Is it really that bad to be really skinny?

Thanks for listening (or reading ) ...sometimes it's hard when no one really can understand how you feel. Most people take food for granted without worrying so much about reading every label so it's nice that all of you get it.

[jerseyangel]

I'm sorry that you're having such a hard time. A lot of people really just don't understand--I don't blame you at all, but you must not give up! We are all here behind you

I have never needed to gain weight, but I feel very strongly that you should do what you need to do to heal your system first--then you will be able to absorb the nutrients (including fat) that you need.

Instead of focusing on fattening foods like peanut butter (which is a legume, and can cause problems for those sensitive to them), try and find foods that you can digest--lean meat and chicken (if you eat meat), cooked veggies, eggs, fruits, olive oil, almonds, rice, sweet and white potatoes, winter squashes--I don't know if you do dairy.

Also, try and rotate your foods--get a variety every day. As your intestine heals, hopefully you will begin to put on the weight you need to gain.

This healing does not happen overnight--it would be so much easier if it did I know you're frustrated but I would suggest you take this day by day--meal by meal, even. Try (I know it's not easy!) not to listen to those who tell you to "hurry up and gain weight". You *will* heal--you just need to work with your body--and sometimes with us, that takes time to figure out

[queenofhearts]

I'm so sorry you're having a hard time of it. Battling illness is tough enough without the pressure from loved ones. Even if they think they are trying to help, it doesn't come off that way!

When I was younger I was like you; it seemed I could never eat enough to gain without getting sick. My mom & grandmothers tried stuffing me with one thing after another & it just made me more phobic about food. Now I know it was all related to celiac.

You won't be able to gain until your intestines heal, & they'll take longer to heal if they are constantly under stress. Tell your husband that patience now will result in greater health in the future. Eat wholesome foods that are appetizing to you & your appetite will slowly increase. Stuffing yourself with any one food may set you up for other intolerances.

Hang in there, & keep in touch with us-- I hope we can help you keep your spirits up.

Leah

[Kat-Kat]

You sound like you want to give up but don't do it fight, pray. I droped 30 pound in 2 months. My dr said at first well I needed to lose but not that fast. It is still coming off I think alittle to fast. I had got to the point I just did not want food it just hurt. I did not tell anyone what was going on my Husbadn worries. It can get better there are foods out there that don't hurt when you eat them. There are foods that will keep you from loseing weight to. Hold on. You can do it. Celiac gives me seizures. but I am going to fight.

[Natlay]

Thanks so much for your replies...it always helps to hear from people who understand. I've been eating a lot of peanut butter lately because I saw a magazine at the grocery store with Nicole Richie on the cover. I jokingly said to my husband that at least I don't look like that. He just didn't say anything for a second and then he said "well...you're not far off" I was shocked to hear that and I just get tired of people always trying to get me to eat fatty foods or saying I don't eat enough. I think I was trying to prove that I am trying to gain weight...sometimes it seems like people don't think I want to look better. Most people assume I have an eating disorder and try to stuff me with food. I just have to ignore all that and focus on what I know is right for me.

Thanks so much...this board has been the biggest help for both information on all this and support from people who know what it's like.

[Ursa Major]

You're right to give up on gaining weight at this point. I agree with the others. The first thing you need to do is concentrate on healing your digestive system. When your bowels will function again, and absorb the food properly, you'll start gaining weight without even trying. Patience and persistence is the key here.

Tell your family that their pressure is adding stress to your life, and stress can cause stomach issues all by itself. They need to back off and let you heal in your own time. What are they more concerned about, your health, or being embarrassed about how you look? They should try accepting you no matter what you look like right now. And personally, I don't think it can be that bad.

[Natlay]

Thank you all so much. I have been thinking the same things that you all said about letting my body heal first and worry about gaining weight later but it's hard to focus on that when people judge so much. People my husband works with or at church ask him if I'm ok. And my mom called my sister one night crying because she was worried about me being so thin. My husband seems to think that if I'm not eating fatty foods that I'm not trying to gain weight. I don't want them to sound bad and like they only care about my weight but I think they just don't understand yet but that I need to talk to them and make them understand.

Thank you all for your support. All these food problems make me feel a little crazy sometimes but then you all remind me that I'm not crazy...this is a real problem and my family needs to understand that too.

[queenofhearts]

I think there is sometimes an element of anxiety with those who love us that if they don't DO SOMETHING we will just waste away before their eyes. They feel helpless, & all they know how to do is tell us to eat more. They don't realize how counterproductive it is. Show your husband & mom the thread on Unexpected Positive Results-- they'll see that with patience, astonishing healing can happen.

Open Original Shared Link

It just takes patience & careful attention to the diet. But it's a hard adjustment for others as well as ourselves.

Leah

[aikiducky]

You could also explain to your husband that while the intestine isn't fully healed yet, it will be very difficult for your body to absorb fats. So eating fatty food really doesn't help! What would help the most I agree with others is eating easily digested food that you like. It's no good if eating becomes a chore either!

I think your mum is associating your thinness with being ill, and that's why she's so anxious about it. I don't know if you can do anything about that really, hopefully she'll start to notice that you feel better and have more energy and calm down eventually.

As to other people and stupid comments, just tell them "my intestines are full of holes, wanna change places with me?" and then ignore them while they stand and splutter...

Pauliina

[jerseyangel]

As to other people and stupid comments, just tell them "my intestines are full of holes, wanna change places with me?" and then ignore them while they stand and splutter...

Pauliina

Wow--good one, Paulina! I'm gonna remember that

[happygirl]

Natlay-I unfortunately don't have the time at the moment to write all that I want, but wanted to let you know I have been in the same boat ..... and unfortunately am again due to other undiagnosed/unidentified issues. It sucks and it hurts our feelings! I just wanted you to know that there are others who understand....xoxo

[megzmc3611]

Thank you all so much. I have been thinking the same things that you all said about letting my body heal first and worry about gaining weight later but it's hard to focus on that when people judge so much. People my husband works with or at church ask him if I'm ok. And my mom called my sister one night crying because she was worried about me being so thin. My husband seems to think that if I'm not eating fatty foods that I'm not trying to gain weight. I don't want them to sound bad and like they only care about my weight but I think they just don't understand yet but that I need to talk to them and make them understand.

Thank you all for your support. All these food problems make me feel a little crazy sometimes but then you all remind me that I'm not crazy...this is a real problem and my family needs to understand that too.

I too was very thin when I got diagnosed. I am 5.4 and I was down to about 97lbs. It took me almost two years to get better...(I had blood tests done every 6 months and each came back showing that I was still getting gluten in my diet somehow!). It took me watching everything I ate and being very careful about cross-contamination to finally, after two years, feel better. I am now about 107lbs. It is amazing what a difference ten pounds makes. Please hang in there. I do not know how long you have been following the gluten-free diet, but it can take months for your body to heal and for you to start absorbing nutrients from food again. If you are still consuming gluten, your body will not heal and you most likely won't gain the weight even if you ate 20 jars of peanut butter in one sitting! I too saw the picture of Nicole Richie and cringed. There are some pictures of me two years ago at my sister's wedding and you can see all the bones in my back!

[debmidge]

A about a week or so ago my husband has to go to Primary Care Dr. & his is on medical leave. The subsitute doctor is new to the practice. He's showing her the lump on the palm of his hand and she reads his blood pressure and weighs him. He mentions his celiac and she says "No wonder you're so skinny!"

He was upset because she said "skinny" and not "thin." He says it was the tone and it was embarassing for her to say it like that. I cringed for him. He's very sensitive and rightly so about his weight. If he was 300 lbs would she have said "You're so fat!"

I read these posts and almost started to cry. I can feel the frustration and god how I understand it for you. I know what my husband goes thru to stay at his very low weight and when he gains it isn't coming back on in even places - only around his waist.

So dont' worry so much about weight - just eat healthy, keep the nutrients in your body as best as you can and if you happen to gain weight back that's good. Don't force feed yourself.

[eKatherine]

If people at church ask if you're ok, your husband should say you've been sick, and you're under a doctor's care for it. How hard is that to understand?

[Guest nini]

when I was in high school I was so thin everyone (including me) thought I had an eating disorder... I guess in a way I did because food controlled my life but not in the typical way that eating disorders do. In my early 20's I started putting on weight and by my early 30's I was obese. My family was obsessed with both my skinny ness in high school and my weight gain later on. Once I was dx'ed with Celiac, in the beginning I would still get comments like "you need to do..." whatever... and it was usually something that was counter intuitive to what I was doing. I was finally able to eat food without getting ill, the last thing I was going to do was worry about dieting to lose weight. So whenever they'd start harping on me about my weight, I just started saying "not helping" it was kind of a code word to let them know that their advice, while well intentioned, was not helping me at all. Eventually the weight just started coming off naturally as my body started to regulate itself normally. I believe that if you just focus on feeling better and eating good nutritious food that you can tolerate, that your body will begin to normalize and you will be able to get to a healthy weight.

I've been at both ends of the spectrum, too thin and too fat, and neither feels good, and it's embarrasing and hurtful when loved ones feel the need to continually point out your "failings" to you. (even if they just think they are trying to help)

Anyway, I've been gluten-free for 3 1/2 years now and while I'm finally getting close to my ideal weight, I still have a little ways to go. My family knows better than to say anything to me now about it, because they've seen the positive changes that being gluten-free has made in my health. It just took time. Tell them to be patient and to trust you that you are doing the best you know how to take care of yourself and to heal. And tell them to keep their comments about your weight to themselves because it's just not helpful, and instead it's hurtful.

[rinne]

I'm sorry to hear that you are feeling this way, although I haven't lost as much weight as you have at one point no matter what I ate I continued to lose. I was consuming more calories than I was using but because of the damage I wasn't gaining.

I think this is difficult for people to understand, they keep asking what I am eating as if they are going to catch me not really eating.

[Jodele]

Natlay, I to know what you are going through. Atlest you know what you have that did this to you. As a child I was so small and skinny. I was made fun of all the time. When I was in High school the kids would say that I had a eating disorder. When I started high school I was 70lbs and when I graduated I was 90lbs soking wet. I ate all the time but unable to gain weight. Now i have the reverce effect now. I am losing weight now and hope not to get down to what i was in high school. Do not lisson to what they say and get your self better by eating right and you will start to gain weight.

Jodele

[Rikki Tikki]

Don't worry about what others say. Just let your body heal and the weight will eventually come back. I have finally started gaining weight after 3 years. The thought of fatty foods actually made me feel sick. Well, except for ice cream.

Oue whole culture is just so obsessed about weight, people are made fun of because they are too fat, too thin, as long as what you are eating is healthy, you are not making yourself sick then try to let it roll off your shoulders. It's hard but do the best you can

Hugs to you!

[Ursa Major]

What Nini said really made me think. When I was a kid, I looked like a scarecrow, with stick legs, I was so thin. My mother was constantly trying to fatten me up (with milk and flour products, of course, which made things worse), and always told me I was too skinny and needed to eat more (at 17 I was 5'6" and weighed about 95 lbs). Then, when I started to gain and was (at the age of 20 to 23) very slightly overweight, she was constantly telling me I was too fat and needed to lose weight!

She herself of course, was obese (due to undiagnosed celiac disease, I'm very, very sure), and was not exactly the expert on weight issues!

Then, with my first pregnancy 27 years ago, I started gaining, and gaining, and gaining and was never able to lose the weight again, no matter what I tried. I never ate a lot, tried all kinds of diets, to no avail.

My husband was constantly, over the years, putting me down for being overweight. I was once asking him for a new bathing suit, and he said, "Why don't you just wear your maternity bathing suit, you look like you're pregnant, anyway!" It still hurts. Every time he saw me eating, he'd ask me if I really needed that food, as I was obviously eating too much, since I was gaining weight. When I told him I wasn't eating too much, he'd say, "The evidence shows otherwise". Actually, the evidence showed I have celiac disease!

I am still 70 lbs overweight (I've lost 20 lbs). I am still healing, and I am far from well. It took 52 years to make me as sick as I was (I've had celiac disease symptoms from infancy, too bad doctors are too clueless to figure it out). It will take years to undo the damage (and I'm afraid not all of it CAN be undone).

But now, if my husband puts me down about my weight and what I eat, I just tell him to stay out of it and mind his own business. Who needs it. He should try being me and being on this extremely restricted diet I am on, and feeling ill much of the time.

Most people don't understand how hurtful their comments are, though. They need to be told that we're healing, that it takes time, and while we're better than we were, there is still a long way to go.

[Rikki Tikki]

But now, if my husband puts me down about my weight and what I eat, I just tell him to stay out of it and mind his own business. Who needs it. He should try being me and being on this extremely restricted diet I am on, and feeling ill much of the time.

Most people don't understand how hurtful their comments are, though. They need to be told that we're healing, that it takes time, and while we're better than we were, there is still a long way to go.

Ursula:

When I read your response to your husband I thought you Go Girl!!! There is no excuse for your husband to talk to you like that. I am glad you are standing up for yourself. Good for you on losing the 20 pounds for yourself!

And you are so right, people don't know how hurtful their comments are, but they should.

[mylady4]

Have you tried protein shakes? Protein in these are easier to digest then other forms but they do contain milk but they might help. There are so many of them out there that you are sure to find one you like. Myoplex by EAS is pretty good, especially frozen berries or bananas in it. I can tell by your postings that you just want to scream that you are not anorexic but have celiac disease.

Good luck

Nicole

[Daxin]

I lost a ton of weight before my dx as well. It's been 5 moths gluten free and I have maybe gained back a pound or tow. I have to agree with everyone and say that when the healing is done, the weight will come back.

My wife wishes she could trade places with me so she could lose a few pounds, which I dont think she needs to lose BTW, but she does not understand how frustrating it is NOT beig able to keep any weight on, or gain it back. And I eat like a horse.

Anyway...it will come. Get well first though.

[Rikki Tikki]

My wife wishes she could trade places with me so she could lose a few pounds, which I dont think she needs to lose

Anyway...it will come. Get well first though.

Just love those supportive husbands that say such sweet things, like you thinking she is just fine!

[seattlecdfriend]

If people at church ask if you're ok, your husband should say you've been sick, and you're under a doctor's care for it. How hard is that to understand?

Good response!

[Natlay]

I feel much better now that I have decided that I don't care about my weight anymore. People can think whatever they want to. I am going to eat or not eat whatever I want that will make me finally feel better. I talked to my husband and he understands better now, especially after watching me sit in the bathroom in pain for a whole night after eating. We went to a friend's cabin this weekend and were out on the lake boating and stuff so I had to wear a swimsuit. He asked if I was going to wear a bikini or a one-piece racing suit. For a minute I was worried about it and then I told him that I was going to wear whichever one I felt like and people could think whatever they wanted to. It felt really good