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GlutenWrangler

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GlutenWrangler Contributor
GlutenWrangler
Posted

Hello Everyone,

I'm not sure if anyone remembers me. I haven't posted in months, but the last time I was on here I was having some serious problems with eating because of my GI issues, including celiac disease. So I ended up in the hospital in June because I couldn't eat anymore. I was down to 100 pounds. Because I couldn't eat, the doctors set me up with TPN, which is IV nutrition. IV nutrition is a complete replacement for food. So I get all of the vitamins, minerals, calories, protein, fat...etc, and I don't have to eat anything. I haven't eaten anything in over six months. My allergist thinks I have severe celiac disease with continued inflammation. So every night at 11:00 I hook up my IV and that's how I survive nutritionally. I never believed that it could go this far. When I got into the hospital, the doctor told me that my condition was life-threatening.

It's difficult watching people eat, and I do get hungry, but my quality of life is vastly improved. Prior to being hospitalized, I couldn't even leave the house. My life was pretty much over at 23. But now I'm living a more normal life. It's not a permanent solution, but it saved my life.

I was wondering, has anyone else experienced such a severe case? Is there anyone on here who has been on TPN? If so, I'd love to hear your experiences. Thanks for listening,

-Brian

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Gentleheart Enthusiast
Gentleheart
Posted
Hello Everyone,

I'm not sure if anyone remembers me. I haven't posted in months, but the last time I was on here I was having some serious problems with eating because of my GI issues, including celiac disease. So I ended up in the hospital in June because I couldn't eat anymore. I was down to 100 pounds. Because I couldn't eat, the doctors set me up with TPN, which is IV nutrition. IV nutrition is a complete replacement for food. So I get all of the vitamins, minerals, calories, protein, fat...etc, and I don't have to eat anything. I haven't eaten anything in over six months. My allergist thinks I have severe celiac disease with continued inflammation. So every night at 11:00 I hook up my IV and that's how I survive nutritionally. I never believed that it could go this far. When I got into the hospital, the doctor told me that my condition was life-threatening.

It's difficult watching people eat, and I do get hungry, but my quality of life is vastly improved. Prior to being hospitalized, I couldn't even leave the house. My life was pretty much over at 23. But now I'm living a more normal life. It's not a permanent solution, but it saved my life.

I was wondering, has anyone else experienced such a severe case? Is there anyone on here who has been on TPN? If so, I'd love to hear your experiences. Thanks for listening,

-Brian

Do they say you have refractory sprue? Does a gluten free diet not work for you?

melrobsings Contributor
melrobsings
Posted
Do they say you have refractory sprue? Does a gluten free diet not work for you?

My uncle had something similar. He refused to admit that he had Spru and kept eating the wrong things and not paying attention to his body. He got down to about 95 pounds at the end and then he died. I think he checked out but he was VERY stubborn (and I think stupid) and refused to admit that something was wrong with him....funny enough he was one of the most brilliant people I have ever known in my life. PLEASE get a new doctor and I hope things improve for you. You are in my prayers....sorry to tell depressing stories but it should be known I guess.

happygirl Collaborator
happygirl
Posted

Were you ever tested for the eosinophillic disorders? Many with Eos. related disorders have food allergies/issues and go on TPN.

www.apfed.org is the best resource out there. Even if you don't have eos., it deals with people who can't eat, so maybe you can find some help/comfort/resources from them.

Best of luck, Brian.

nikki-uk Enthusiast
nikki-uk
Posted

I would have thought 23 yrs old was way too young to have Refractory celiac disease :blink:

Have you had repeated biopsies???

As you say, things have to be pretty bad before docs consider a TPN line - I'm glad that's enabling you to live a better quality of life - but I'm curious as to why your gut is still so inflammed.

Good Luck :)

cruelshoes Enthusiast
cruelshoes
Posted
I was wondering, has anyone else experienced such a severe case? Is there anyone on here who has been on TPN? If so, I'd love to hear your experiences. Thanks for listening,

-Brian

Hi, Brian. I have been where you are. In 1987, I was diagnosed with abdominal cancer at age 16. I had 2 years of chemo and radiation. What we didn't know at the time was that the treatments triggered my celiac disease. I was going #2 50x/day and got down to 85 pounds (I am 5'6"). I did daily TPN for 2 years with a groshong catheter (tube that hangs out of your chest). Back in those days they didn't have the portable pumps, so I was stuck at home with an IV pole the whole time I was hooked up. You also had to mix your own TPN in those days. So I would pick up boxes of vials and needles and the glucose bags from the pharmacy and mix it up on our kitchen table. :huh: I was also on doctor's orders to not take anything by mouth, but I only did that for 2 months. I have to say those were 2 of the hardest months of my life. I couldn't even turn on the TV without being bombarded with ads for fast food. High school a non-stop food parade, too. It is really hard, so I know what you are going through. You just have to power through it and not think about food if you can. My symptoms kind of calmed down until I was in my 20's.

Then when I was 23, everything was back with a vengance and I was near death again. I looked like those pictures of orphans in some far-off African country that you see on TV. Skinny leggs and a big pot belly. The doctors put in a central line (a port-a-cath in the chest that time) I liked that kind better because it was under the skin and only needed to have something hooked to it when it was being used. I did TPN for another year. It was great that time, though, because they had the portable backpack pumps. That was great freedom. Things calmed down again until I was in my 30's. My symptoms never went away completely, but they were manageable.

All the symptoms were back, worse than ever, in January of 2005. It tooks me 6 months to go down hill far enough for the doctors to start the TPN again. I finally got hooked up with a doctor that looked at my symptoms with a new set of eyes and diagnosed me with celiac disease. I only had to do TPN for a month that time with a PICC line. That one was nice because it left a very small scar, and the home health nurse came to my house weekly to change the dressing. The pumps have gotten even smaller and easier to use.

That is my experience with TPN - sorry I wrote so much. :) Have the doctors given you any indication as to why your symptoms are not going away? I hope they figure it out soon so you can get off the TPN. Let me know if I can give you any more info. It will probalby be wordy just like this post. :lol:

Hang in there!

neesee Apprentice
neesee
Posted

Brian,

If I recall this correctly aren't you Enterolab diagnosed, and aren't you the one who does not have celiac genes?

I don't understand your drs. letting you run down like this. Hopefully they are checking for other things as well as celiac.

I'm very concerned for you.

Denise

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bluejeangirl Contributor
bluejeangirl
Posted

I remember you Brian, you thought your grill was cc'ing your food in some way. I'm praying you can get the help of an expirenced doctor who knows alittle more then an allergist. Don't give up. Hopefully it will be only for a short time.

Gail

GlutenWrangler Contributor
GlutenWrangler
Posted
  • Author

Wow I appreciate all the responses. Yes I am the one who doesn't have the genes, but I was diagnosed by my gastroenterologist. Enterolab just confirmed it for me. So yes, my allergist thinks that I have refractory sprue. No biopsys have been done since June when I was hospitalized. My allergist said that even though I don't have the genes, it really doesn't matter and refractory sprue is most likely what is causing my GI issues. He gave me Prednisone to try to calm down the inflammation, but I couldn't handle the side effects. Unfortunately he is kind of at a loss as to how to treat my condition at this point. It's hard because I know that TPN isn't a permanent solution, but I dread going back to the hell and suffering that I went through prior to TPN. I kind of feel like staying on TPN is my best chance to live a "normal" life.

To answer some of your questions...I have pretty much been chacked for everything, and all my tests have come out negative. The celiac disease was already a given, so they tried to see if anything else was going on. I had abdominal pain, and I knew it was my gallbladder. But all the tests came out negative for that too. But I decided to have it out anyway, and it turned out that it was diseased, and I had chronic cholecystitis. But after I had it out on October 9th, my abdominal pain actually has worsened. Celiac disease is just one part of a bigger situation, but the doctors can't find the other part of the story. So a lot of them have given up. I have a few good doctors who are still trying to help me. When I was 100 pounds, I begged my doctor to admit me to a hospital in Boston. He said I didn't look that bad. I was eating every other day, literally starving to death. I ended up just going to the ER at Beth Israel Deaconess Medical Center, and thankfully they recognized how sick I was, and admitted me. I went to Beth Israel because they have a Celiac Center. But I was amazed that it was so difficult to find someone to care enough to admit me into a hospital.

I'm not sure if I was ever tested for eosinophillic disorders, but I'll definitely check it out.

Cruelshoes, I appreciate you sharing your experience with TPN. I'm glad you are doing better now. I get my TPN through a picc line. The only thing I have to mix in is the multi-vitamin. Not too bad though.

But anyway I really appreciate your support. If anyone has any more input I'd love to hear it. Thanks again,

-Brian

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

I was only on TPN for a couple of weeks when I couldn't keep anything down when I was pregnant.

That's no help at all to you--I'm sorry.

I wish I could come up with answers for you. The only thing I can think is to ask yet more questions.

Could this possibly be vaccine-related? Did you get the flu shot, for example? I ask only because I have read that many babies seem to have normal digestion until the 18-month mark--then they get the MMR and some other vaccines, and things take an immediate turn for the worse. You are so young, maybe you recently had either the MMR, or else some of the vaccines they "require" for college, like Menactra?

It's such a long shot (sorry, no pun intended), it's not likely to be the cause of your problems, I know. But it just might be a factor.

Other, more likely things to consider are:

mercury toxicity (did you have dental work done during this time period? Vaccines are a factor here, too, as many used to contain mercury and the flu shot still does)

Lyme Disease (40% of patients with confirmed Lyme don't remember EVERY having been bitten by a tick and never had the "bull's-eye" rash)

Please pm rachel_24 or visit the "Lyme Disease" thread and the "OMG--I might be on to something" thread on this board, but skip to the last hundred pages or so! They discuss Lyme disease and mercury toxicity in a lot of detail, as SEVERAL celiacs on this board have been diagnosed with one, or the other, or both. Too many for it to be a coincidence, that's for sure.

Best of luck to you, and I hope you recover very soon!

GlutenWrangler Contributor
GlutenWrangler
Posted
  • Author

Fiddle Faddle, the last vaccine I had was about 5 years ago. It was the meningitis vaccine for college. So I doubt it's anything to do with that. I haven't had any dental work recently either. But Lyme disease is a possibility. I have 4 dogs who go out for walks in the woods. One of our dogs actually had Lyme disease. I don't know if I have been tested or not. But I was watching "Mystery Dianosis" on the Discovery Health Channel about a year ago and a guy on the show ended up having Lyme disease for his final diagnosis. I remember the doctor saying that it is incredibly hard to test for, and unless you go to a doctor with experience with Lyme disease, it is very difficult to get a correct diagnosis. But I will definitely investigate this a little further. It's definitely worth a try. Thanks,

-Brian

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