Weight and BMI before feeding tube?

[RobinB29]

Okay, so I am trying to find out from CF folks what was your BMI and weight prior to getting a feeding tube and did you gain weight after placement and if so how much? I've lost quite a bit of weight since my Celiacs diagnosis and I was concerned cause my BMI is 19.32 right now and I weight 110lbs. I also can't have dairy products or anything with soy protein cause I have cross-reactivity issues due to the Celiac so this makes gaining weight difficult. I know, eat avocados, peanut butter (which I hate), nuts, olive oil, ect. but there's only so much of that stuff you can eat and I'm starting to feel completely uninterested in food. I just wish there was a pill I could take that would just give me my daily calories so I could not worry about food. I spent 28 years eating whatever I want, gluttonously and was always a healthy weight and since my diagnosis every meal is about substitutions, label reading, what pan am I cooking in, is that the right spatula for my GF stuff? An forget eating out. Sometimes I wonder if this is some type of weird anorexia, I don't have body image issues but the idea of dealing with food just makes me wish I didn't have to eat at all. And I was a person who loved food- I mean LOVED food. I loved cooking, I loved eating, I loved cooking and feeding my friends and family. Now I avoid it. I cook for my family but most of the time I just don't feel like eating it when I'm done. I downloaded a fitness app and I set a high calorie goal and I try to use that to nag myself into eating more and keeping up with my goal but I'm just so sick of food being such a big freaking deal in my life. My CF nutritionists seem to know less about Celiac diet than I do and all of their suggestions I am already doing anyway, my docs are just like "Try to gain some weight." Yeah, okay. I wish reverse liposuction was a thing.....if I could just have all he fat in Kim Kardasian's butt pumped into my body I think I'd be good.....
Anyway, sorry for the rant, I needed it and if anyone has any helpful tips besides the stuff I already mentioned I would love to hear them. And if anyone has any G-tube experience please share. I think it's only a matter of time before my docs start talking about that stuff and I like to be prepared. (Anyone know if their g-tube supplements are gluten-dairy-soy free?)

 

[jshet]

My son is similar to you. He has cf, and a host of other conditions including celiac disease, and allergies to milk, dairy, soy, and rice. I understand how limiting it is. He also has autism, and will only willingly eat certain foods. He is currently age 18, height 5'5, and weight is 75 lbs.
we struggled for 11 years trying to get his weight up, but we just could not do it. In January, it will be 2 years since he got his g tube, and his weight is still a big issue, but he has gained 11 lbs. in 2 years. His weight gain has been slow, but his doctor feels he may also have an underlying metabolic issue adding to the weight gain difficulty. He is no where near the growth chart for weight, and his height is below the third percentile, but his energy level has greatly increased though.
most people have better results with their g tube, but we will take the improvement that he has had.

there are medications that can increase your appetite. Have you tried any of those? A g tube may be in your best interest because of the weight gain issues, also for the vitamins and minerals you are not getting because of a limited diet. We began this diet 11 years ago, and the availability of products have increased greatly making it easier to find things. Restraunts, at least most, now have gluten free options which is nice. You have to play with it a little because of the other allergies, but it is doable. For instance, we went out a couple weeks ago, and my son was quite satisfied. He had a hamburger, ( no bun because of the rice allergy, but should be ok for you), with lettuce and tomato, a baked potato with salt snd pepper, and veggies. he also had stuff from the salad bar. He was content, and left full.

a g tube will take some of the pressure off of you. You could eat what you want during the day, and then do night feeds to compinsate for what you are not getting during the day. The only formula we can use is either neonate jr, or E028 Splash because of allergies. .Both are very expensive. you may want to check your insurance coverage first if they do not cover 100%. Co-pays can be crazy. If we only had my husbands insurance, and not the Medicade for him our out of pocket each month would be about $1,500.00. Luckily we do not have any out of pocket. Mery with your cf dietician, she may be better able to tell you if you see if you are a good candidate or not. Good luck.