Weight Gain Advice Needed, Please (Newbie Near Death)

[lastevns]

Hello all,

 

I have been suffering for some time now and just learned I am severly malnourished and have Celiac Disease (confirmed Monday).

 

The GI specialist said (in from of my boyfriend who has now become a mental basket case) that this is a last-ditch effort treament. He expects 100% cooperation YET I still haven't seen a dietician (only a student who is studying to be one when she grows up). He has given me a supplement plan including a peg for home IV but I- don't know yet how much of that is covered.

 

Any way, I have a medical app that allows me to set the number of carbs, protein, fats and SO much as my goals so I can measure them when my blood tests come back.

 

Does anyone know of a place to help figure these goals?

 

Thank you,

Laurie

[kareng]

I think the goal calories will depend....... If you haven't been eating anything for a long time, you might have to go slowly. You might look at eating disorder treatments? They have to start slowly or they can't handle/ digest well.

When my mom was very bad, the dietician said to eat every 2 hours a hundred calorie snack - some nuts, peanut butter, smoothie, etc. and eat 3 meals, too. I don't know that you can do dairy right now, but we added full cream to things like baked potatoes and cereal. You could add oil to many foods - like veggies. Add protein powder to smoothies and suck on them all day? Look for high calorie foods like coconut, nuts, avocado, nut butters, etc.

[cyclinglady]

Welcome!

Please read the "Newbie 101" thread under our "Coping section". It contains valuable information on avoiding gluten in processed foods or avoiding cross contamination. Even kissing your BF after he consumes something with gluten will make you sick.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

You can get better! We did! Sounds like you have a nice supportive BF. I would make the house got gluten free (we did). My kid gets her gluten fix outside the house.

Karen is right. Start with foods like homemade soups, broths, cooked veggies anything that is easily digestible.

[Gemini]

I was in your shoes 10 years ago and was suffering from severe malnutrition. I was 20 pounds underweight.  Doctors have a tendency to fear monger.  I did as Kareng's mother did....I ate a snack or some food every 2 hours and concentrated on nutritionally/calorie dense foods that I could tolerate.  Over the next 6 months, I started to gain weight and get my life back.  I found those 20 pounds eventually and am healthy now.  Don't worry......you don't need IV nutrition and you will recover.  The human body can take a lot of abuse and still come out well on the other side.

 

Hang in there, Newbie! 

[notme]

i use an app on my phone called 'my fitness pal' and it will keep track of all that.  it's easy to use if you can get it (and, it's free  ) i didn't even know it was keeping track of how much iron, carbs, vitamins, etc until it kept congratulating me for choosing healthy things (plus, it's nice and encouraging, lolz) and if you plug in your weight and your goal weight, it will tell you how many calories you need for healthy weight gain.  

 

they told me to see a dietitian/nutritionist in the beginning, too.  then i couldn't get an appointment for 2 weeks!  well, i had to eat before then!!  i was all like:  what am i supposed to eat in between....?  so i came here (and then i cancelled my appointment)  good luck & welcome

[1desperateladysaved]

I do 27 carbs to 2-3 oz of protein as well as 1 TBSP fat per meal at least 3 times a day.  These numbers were recommended by my chiropractor that has been trained in nutrition.  You can eat more than that, but the proportions should stay the same.  I also suggest that digestive enzymes can help break down your food until your body can heal.

 

Dee

[sunny2012]

The "a last-ditch effort treatment" comment seems totally inappropriate to me! A gluten free diet is the proper treatment for Celiac. Perhaps he does this to emphasize the critical nature of a diet as a cure. There are so many people these days who think it is a fad!

 

Just eat gluten free! I was so close to death when DX'd they could only draw a single vial of blood to type and cross match while I was in I.C.U. with all the other unconscious patients. They had to give me 4 days care BEFORE they could safely run any tests to see why I was so close to death.

 

It is impossible to tell what is actually being digested since your intestines are damaged. Eat a variety of NON processed gluten free foods - veggies, meat and eat small meals. As your intestines heal and you start absorbing the nutrition from these foods, you will naturally put on weight. And feel better.

 

If something bothers your stomach, don't eat it. I could not digest complex carbs - I guess cause that part was damaged. It left me in terrible pain. After a couple months that went away.

 

The best part is that you have total control over what you choose to put in your mouth. Unlike other diseases where medications with side effects can make life even more miserable, we get to decide if we feel well or not.

[rockymtntapper]

Hi Laurie, one very nourishing food that is easy to eat (drink, actually) is bone broth. It's extremely healing for your gut because it's high in gelatin and will probably taste good to you, too. To make your own, just take a carcass from a chicken you made (or you can use bones leftover from chicken legs, sometimes that's easier), stick it in a crock pot with water and about a tablespoon of vinegar and let it cook for about 5-12 hours. If you're too sick to cook, Pacific brand makes a bone broth that you can buy (it's definitely cheaper to make it yourself, though).

 

Also, you might want to look into the GAPS diet. It not only eliminates gluten but also other foods that can be irritating to your gut, and that way you have a chance to heal. 

[cap6]

Please, please stay away from processed foods.  The added ingredients in those food products will only help to slow down your return to health.  Bone broth, as mentioned, is very high in the nutrients you need and healing to the gut.  For a little added flavor you can throw in some carrots & celery tops while it simmers away.  Sip on that throughout the day.   There is an excellent book, Practical Paleo by Diane Sanfilippo that covers ways (and foods) to heal your gut.  It is a recipe book, but as a noncook I will say that most are excellent and very easy to follow.  There is a section on healing the gut and it deals with highly nutritious and healing foods.  You will heal, just remember that it takes time to undo all the harm that has been done. Some people take much longer to heal than others.   So glad that you have been diagnosed and on your way!

[musickep]

I dont know the answer to your question, but I have had celiac disease for 23 years and suddenly got very ill, and have malabsorption, have lost weight, etc. But have studied online with what to do, because we dont have insurance yet, and I found the SCD diet very helpful and easy.  It helps your gut to heal, and yes it keeps you off all grains, starches but its for a committed time 6 mos I hope! But I make coconut milk (easy) and coconut milk yogurt, grape jello, I eat grass fed meat, wild caught fish, I juice organic veggies, and squash is my "starch" even though its not a starch. (i bake one acorn or butternut squash and cut it into four pieces, stick in fridge). I also buy good antibiotic free single pkg chicken breasts, cook a few at a time and keep in fridge to have on salads. I make bone broth weekly in the crock pot (wellness mama recipe) and sip that daily. I also take L-glutamine to help heal my leaky gut (dr. axe leaky gut stuff). I can also have almond flour and banana pancakes that are made with banana and an egg, YUM. So there are new recipes like almond flour crackers im going to try, and an apple cake etc. I am pretty sure this diet will help you and me heal and get well enough to get out of malabsorption. I have to take b-12 (methyl) daily and d3/k2 drops daily as well as magnesium/calcium and some fish oil and other supps too. (b vitamins, curcumin, vit c) If I veer off this diet and try to eat any gluten-free starch or grain then i have increased stool, loose another lb etc..  I can't say Im healed yet but I have seen improvement and am sticking to it. I may ck out the GAPS diet too but I could not handle blending raw eggs but I suppose one can leave that part out. I also add collegen protein to my juicing.   It is frustrating when a GI doesn't give you a diet plan to follow. Western Medicine is like that. Please google SCD diet and ck it out. I know it seems overwhelming but it has stages and you only stay on the first stage 3 days, then move on. and within a few weeks youll have a myraid of things you can eat.   Prayers for yoU!   I may ck out that paleo cookbook the other person told of !

 

[lastevns]

On 1/29/2015 at 5:11 AM, lastevns said:

Hello all,

 

I have been suffering for some time now and just learned I am severly malnourished and have Celiac Disease (confirmed Monday).

 

The GI specialist said (in from of my boyfriend who has now become a mental basket case) that this is a last-ditch effort treament. He expects 100% cooperation YET I still haven't seen a dietician (only a student who is studying to be one when she grows up). He has given me a supplement plan including a peg for home IV but I- don't know yet how much of that is covered.

 

Any way, I have a medical app that allows me to set the number of carbs, protein, fats and SO much as my goals so I can measure them when my blood tests come back.

 

Does anyone know of a place to help figure these goals?

 

Thank you,

Laurie

I just wanted to thank everyone who responded to this initial post. I didn't respond because I ended up back in the hospital and did just barely survive. After 2 months in the hospital I spent another 8 months with a PICC line and TPN. But that did the trick and I healed for some time. Now, I don't know why, symptoms are creeping back (mostly hair loss) and this is scary as can be. I have to recommit to some serious self care.

[Ennis-TX]

1 hour ago, lastevns said:

I just wanted to thank everyone who responded to this initial post. I didn't respond because I ended up back in the hospital and did just barely survive. After 2 months in the hospital I spent another 8 months with a PICC line and TPN. But that did the trick and I healed for some time. Now, I don't know why, symptoms are creeping back (mostly hair loss) and this is scary as can be. I have to recommit to some serious self care.

Nice to know your doing better and good to see oldies check in, ugg, that story. Yeah I have to eat all the time a very strict diet myself and consume food every 4-6hours just to keep weight on. Keto/Paleo diet of no grains, dairy, and a ton of other No foods that make me sick.

[lastevns]

23 hours ago, Ennis_TX said:

Nice to know your doing better and good to see oldies check in, ugg, that story. Yeah I have to eat all the time a very strict diet myself and consume food every 4-6hours just to keep weight on. Keto/Paleo diet of no grains, dairy, and a ton of other No foods that make me sick.

Wow. I guess I got lucky. No issues with dairy, here. So thankful for that. Though, when I first came out of the hospital, the doc told me many celiac sufferers are also dairy intolerant so I had the vegan dairy and it wasn't the worst ever. Sorry to hear your way hasn't been as easy. Like you, when I was sick (and still undiagnosed), I couldn't gain weight (friends were jealous). But, they were never jealous of my hair. It should have been the giveaway to doctors all along. It's amazing how much you find doctors don't know.

You mentioned you have long hair. Mine has grown long again. And it's very curly so, it knots a lot. Do you have issues with your hair being long? Does it tangle and knot easily? Does it pull out easily? Or did it? Or has it just always been strong? Also, do you have a regular doctor you see? Is there a reason they haven't been able to figure out how to help you gain? I know my own doctor thinks I'm vain. So it's hard to talk to him about much of anything -- especially weight loss. He just tells me I'm lucky to be alive and acts as though I should leave it at that. I only ever went on a diet once before in my life. It was ketogenic. I lost 18 pounds in a couple of months. This time around, it's terribly slow going. Not certain why. I don't suppose you'd know since you have the opposite problem. But, I do wonder if the disease has affected my ability to lose weight now.

[Ennis-TX]

21 minutes ago, lastevns said:

Wow. I guess I got lucky. No issues with dairy, here. So thankful for that. Though, when I first came out of the hospital, the doc told me many celiac sufferers are also dairy intolerant so I had the vegan dairy and it wasn't the worst ever. Sorry to hear your way hasn't been as easy. Like you, when I was sick (and still undiagnosed), I couldn't gain weight (friends were jealous). But, they were never jealous of my hair. It should have been the giveaway to doctors all along. It's amazing how much you find doctors don't know.

You mentioned you have long hair. Mine has grown long again. And it's very curly so, it knots a lot. Do you have issues with your hair being long? Does it tangle and knot easily? Does it pull out easily? Or did it? Or has it just always been strong? Also, do you have a regular doctor you see? Is there a reason they haven't been able to figure out how to help you gain? I know my own doctor thinks I'm vain. So it's hard to talk to him about much of anything -- especially weight loss. He just tells me I'm lucky to be alive and acts as though I should leave it at that. I only ever went on a diet once before in my life. It was ketogenic. I lost 18 pounds in a couple of months. This time around, it's terribly slow going. Not certain why. I don't suppose you'd know since you have the opposite problem. But, I do wonder if the disease has affected my ability to lose weight now.

You can look at my profile for a summary of food issues, few not mentioned as they seem to come and go....like this past few months I got a intolerance to iceberg lettuce, cabbage, romaine....yeah I am actually laughing at this. Spinach and kale seem fine, right now it is funny.

My hair is SUPER fine, breaks easy but not at the root. Humidity here in Texas makes it curl in on itself at the ends a lot. I have to brush it daily and if I do not use EO shampoo AND CONDITIONER it knots like crazy. I wash and condition it twice a week (I was told daily washing it was bad for the natural oils in the hair) then blow dry it straight while brushing down til dry. I use a straightening iron on it before heading out....yeah this from a guy lol. I do cosplay as a hobby so my hair is important in this regard.

My initial symptoms with the disease was sleeping all day and like 5-11 days of constipation...this led to me being over 200lbs in HS with a 38" waist. In college I started eating less gluten and having more soups (saving money I found HUGE pots of stew, rice, and grilling chicken in mass, and living off it for a week was the cheapest way to live and no cooking during the week.). Around this time I did something stupid and shocked my immune system to hell and should have died (26 shots in a short time frame) after which my symptoms changed to more neurological and the weight loss hit like 60lbs in under 4 months starting thinking I was going to die and was running a bucket list before getting my dia. Sorta been a whole another story from there.  

Currently I found a diet very high in fats, protein, fiber works best. Seeds high in zinc, iron, etc. and making sure I get plenty of foods providing different nutrients in each meals helps to put on weight. Working out daily different muscles groups and body building right now. I am 5'11" 129lbs now with a 28-30" waist.