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Two Years

GlutenWrangler

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GlutenWrangler Contributor
GlutenWrangler
Posted

I was thinking about how crazy it is that in two months from today, it will be two years since I've had anything to eat. That's 730 days with no food, and still no diagnosis. I'm not complaining about it though, because I'm much happier and healthier than I was when I was still able to eat. Although I did think that I would have a diagnosis by now. It's just strange for me because it was one of those instances where I had to step back and say "WOW", it has really been two years. Anyway the point of this is that I think I finally have an answer as to what is going on with my system. I came across an article in the paper about an 18 year old kid who has the same exact symptoms and problems as me. He was diagnosed with Eosinophilic Gastroenteritis. I brought the article to one of my doctors, who agrees that I probably have EG. So he is sending me to see the doctor who diagnosed the kid from the article. It's not a diagnosis that anyone would really want, but it's a diagnosis nonetheless. Anyway I was wondering, does anyone here have any personal experience with Eosinophilic disorders? It's supposedly very rare, but I figured that it is possible that someone here might have it, or know someone who does. Plus, it had been mentioned to me a few times in the past by a few members of this forum. Any information or personal stories would be greatly appreciated. Thanks!

-Brian

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GFinDC Veteran
GFinDC
Posted

Hi GlutenWrangler,

Nice to see you around the boards! 2 years without eating is quite a while for sure. I don't know much about that EG thing. Seems like a food intolerance caused condition though. Boy, just think of all the wear and tear you are saving on your teeth! :D

Jestgar Rising Star
Jestgar
Posted

Wow. Two years. Unfathomable.

Wow.

Takala Enthusiast
Takala
Posted

Did you see this site yet?

Open Original Shared Link

happygirl Collaborator
happygirl
Posted

www.apfed.org is a good resource.

I think there are a few members on here who have it or their children have it....mommida, I think?

msmini14 Enthusiast
msmini14
Posted

I wish you the best of luck, I hope they find out what is wrong with you. Get better soon!

ang1e0251 Contributor
ang1e0251
Posted

Hi, I was glad to see you back on the boards. I don't remember who was posting at the time but because of the comments, I looked up gastroperisis and I think my brother-in-law has it. I sent them a bunch of literature about it. He has severe diabetes and his was probably caused by his insulin levels too long elevated.

If I remember, one can have it for no apparent reason, too. You are probably in that category, right?

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GlutenWrangler Contributor
GlutenWrangler
Posted
  • Author

Thanks for the links. I've done a lot of research on Eosinophilic Disorders, but I've never really heard anyone's experiences with it. I think that my case is pretty severe, because I'm unable to eat anything at all. The kid from the article was still able to eat, although he definitely had a lot of problems with food.

I saw my doctor today, and she actually has a patient with Eosinophilic Esophagitis. So at least she has some experience with it. From what I've read, steroids like Prednisone are the main treatment for Eosinophilic Disorders. But I've tried Prednisone in the past and couldn't tolerate the side effects. So I don't know if there is anything that will help me to eat again.

Yes, gastroparesis has been an issue for me. It comes and goes though. Gastroparesis is one of the symptoms associated with Eosinophilic Gastroenteritis, which would explain why I have it. I truly believe that I've finally found the reason for all of my problems. Hopefully there is some way to treat it without steroids though. But yes, I'm definitely saving my teeth from a lot of wear and tear!

sickchick Community Regular
sickchick
Posted

Keep positive, Sweetheart! I always got your back! B)

You have no idea how excited I am to hear you found

that article...

lovelove

:):):)

GlutenWrangler Contributor
GlutenWrangler
Posted
  • Author

Thank you so much, C! You're the best! (But you already knew that) :D

gabby Enthusiast
gabby
Posted

Hi,

Your story is heartbreaking. Your attitude is incredibly upbeat and positive. I wish I had info that could help you uncover what the heck is going on...so you can get a proper diagnosis, and more importantly so you can get the proper treatment and then get on with doing all the incredible things that are waiting for you in your future (including possibly being a motivational speaker?)

I'm going to make a suggestion that might sound wonky, but here goes: contact the Dr. Phil show. Get the attention of the show producers who are looking for stories just like yours. Get on the show. And let them put some of the best medical minds available on your case.

I'm not associated with the show (except I watch it). But a few years ago, I went on their website and responded to an online form they had where they were asking people if they'd like to be on the show to have their recurring dreams examined. I wrote in, and the next day a producer e-mailed me back with a bunch of questions. I had to send in some pictures of myself, more details on my dreams, etc. In the end things didn't work out for me because I was in Canada at the time and couldn't travel.

So I know this could possibly work for you too because they have a section on their website asking people to write in with their MEDICAL MYSTERY. Just from watching the show, I know they have a real soft spot for young, inspirational, motivated people who need a hand in removing a medical problem. And they love it when they can help out, then revisit you a few months down the road to report on your progress.

Check it out:

Open Original Shared Link

Scroll down to the section called: General Medicine. Then go to the 4th question from the bottom that says: suffer from a rare disorder or medical mystery?

Click on that section. Fill in the form, tell them you are a bright, ambitious, smart, enthusiastic 24 year old guy with big dreams for his life, except that you haven't been able to eat FOR TWO YEARS. And nobody can figure out what's medically going on.

Tell them how much weight you've lost. Tell them how you get your bit of nutrition right now. Tell them that the doctors are baffled. Tell them you've gone wheat free, then gluten free, then you've gone food-free. And that you're living on Gatorade. And then tell them that it isn't getting better. And you are 24 years old.....and you'd really really really like to be 25, then 26, then 30, then 107.

That's it. Make sure you tell them you are willing to appear on the show.

Then cross your fingers. I hope it works for you, because they can then pull together lots of resources to solve this mystery.

Hope this helps!

If you have some really big dream that can't be accomplished until this is solved...include that big dream in your letter. They can probably help with that too.

GlutenWrangler Contributor
GlutenWrangler
Posted
  • Author

Gabby,

Thank you for your reply. I appreciate it very much. I try to keep a positive attitude. After all, as bad as it seems, it could be much worse. I just try to be grateful for all of the positive things in my life, so it doesn't really get to me too much. I don't know if I'd be a good motivational speaker! But I would like to help people who find themselves in situations like mine.

But anyway, I never really thought about it, but contacting Dr. Phil is a great idea! Thank you for suggesting that to me. I can definitely imagine them being seriously interested in my case. And I'm sure that they would be able to help me if I was to make it onto the show. The only issue that might be a problem is travel. I live in Massachusetts, and the show is taped in Hollywood. I'm not sure if I would be able to take all of my IV Nutrition and supplies with me across the country, because IV Nutrition has to be refrigerated. But I

WW340 Rookie
WW340
Posted

Eosinophilic gastroenteritis is one thing my GI thinks I may have. I will be getting scoped again in the near future, as I am still having abdominal problems and malabsorption. I cannot keep my vitamin and mineral levels up without mega doses.

When I had my EGD 2 years ago, the biopsy came back positive for lots of eosinophils. I also have high blood eosinophils. My doctor told me to avoid all NSAIDS and stay gluten free. He said it was possible that I have the eosinophilic gastroenteritis, but that it might clear up on the gluten free diet.

I got a great deal of relief on the gluten free diet, but have continued to have some problems, with symptoms getting worse the last few months. I have had a CT to rule out lymphoma, and I am having a lot of specialized tests for causes of my extreme bone loss, and inability to absorb vitamins.

Recently it has dawned on me that I think part of my symptoms are gastroparesis. I felt better after dental surgery that required several weeks on a liquid diet. As soon as I went back on regular food, the symptoms returned. I don't have many problems with diarrhea, but I have problems with abdominal discomfort and vomiting.

My osteoporosis doctor thinks there is a possibility it is "burned out crohn's", or MALT lymphoma. He says it is for sure that my bone loss and wacky vitamin levels are more than celiac, especially since I have been gluten free for more that 2 years. Once I get my test results back, I am supposed to go back to my GI doctor.

gabby Enthusiast
gabby
Posted

Why not run both options in parallel...see your doc, and try and get on Dr. Phil. Even if your doc ends up giving you a diagnosis...it is still a rare disorder, and quite a medical mystery.

Best of luck in whatever you do...and keep us all up to date on how things go...

GlutenWrangler Contributor
GlutenWrangler
Posted
  • Author

WW340,

My vitamin and mineral levels have been low too. I also have a lot of problems with my electrolyte levels. I have to have mega doses of sodium and potassium in my IV Nutrition to keep my levels up, and they still dip below normal. My symptoms include abdominal pain, bloating, gastroparesis, malabsorption, diarrhea, fatigue, and skin manifestations. My fingers get really itchy and I have extremely dry skin on my hands. Skin problems are associated with Eosinophilic Gastroenteritis

It sounds like Eosinophilic Gastroenteritis is definitely a strong possibility for you. Your test results are definitely indicative of it. I don't know if I have been properly tested for it. From what I've read, it can be easily overlooked if a doctor isn't experienced with it. My doctor is having me do a stool test for eosinophils. Then hopefully I will see the doctor who diagnosed the kid from the article. Hopefully then I will get the blood test and biopsy to see if I have it.

I also had some relief when I started the gluten-free diet. Things got better for about 3 months, and then I started reacting to just about everything I ate. I lost a ton of weight, and I was literally starving to death. That's when I was hospitalized. I was put on a liquid diet, and then IV nutrition. Like you, I felt much better on the liquid diet. I even had normal stools for a month after I got out of the hospital. I also attribute that to the fact that I had to clear my system out for a colonoscopy. But it only lasted a month.

I've never heard of "burned out Crohn's" or MALT lymphoma...But when I was in the hospital, Crohn's and cancer were both ruled out for me. I was even tested for HIV because they couldn't figure out anything intestinally. But my doctors also agree that I definitely have more than Celiac Disease.

Our cases are remarkably similar. I feel pretty much certain that I have Eosinophilic Gastroenteritis, and I'd be willing to bet that you do too, especially with your test results. Hopefully our doctors can do something to help us. I appreciate you sharing your experiences with me. It helps to know I'm not the only one dealing with this. Good luck with everything. Take care

-Brian

Gabby,

That's a good idea. I should run both options parallel. At least I can get the process started by contacting the show to see what they have to say. Do you know how long it usually takes to get on the show? It would be great if they could help me out. Thanks,

-Brian

gabby Enthusiast
gabby
Posted

Not sure how long it takes to get on the show.....I'm guessing that the only way to find out is to actually write in, and see what happens, then take it from there.

Hope that helps a bit more....

And again, hope you get the answers you seek....whichever way you end up getting them!

GlutenWrangler Contributor
GlutenWrangler
Posted
  • Author

Ok, well thanks again. I'm going to write in and see what they have to say. I'll have to report back when I get a response.

-Brian

WW340 Rookie
WW340
Posted

I hope you are able to get some answers, and will someday be able to eat again. I feel thankful for that at least.

It does sound like we have some similiarities for sure. I also have to take potassium supplements. I have salt cravings, so I guess I eat enough salt to keep from going low on that. I have been tested twice for HIV, as they didn't believe the first result, because my stomach and esophagus was covered with candida.

I just saw the eye doctor and found out I now have shingles on the cornea of my right eye. This is my 4th episode of shingles in a year. The first episode on my eye. I had the shingles vaccine in December, but I guess it didn't work. They tell me I will now be on life long suppression therapy with acyclovir.

I just got the results of my electrophoresis for blood cancer, which was negative. That was a real relief, so it seems that cancer has been ruled out, except for the MALT cancer which I think will require another biopsy.

It sounds like we need Dr. House, lol.

Stay in touch, and let me know what you find out. Good luck with the Dr. Phil show.

  • 6 months later...
danikins90 Newbie
danikins90
Posted

I am very sorry to hear this about you but very glad to see that you are upbeat about it! I know you posted this many months ago and I sincerely hope that you have found the answer, in the event you have not I hope I can be of help. I was diagnosed with eosinophilic gastroenteritis five years ago... it is so rare that it had NEVER been seen before by any provider of mine. At the time I was 14. Since, I have learned to deal with it... I am one of the most stubbern, up beat, optimistic girls out there.. my disease will not get me down. I was hospitalized for this just last week. (I returned to college the day after I was released... prime example I am stubborn!) I have not had real food in over a month, but cannot get IV nutrition. Some days my diagnosis scares the living daylights out of me.. they can treat it with prednisone but it has taken five years for this to happen.. I just started Prednisone today. If you feel that you may have eosinophilic gastroenteritis I would love to help you. I would also like to tell you about something else, it is called Churg-Strauss Syndrome. CSS and EG are commonly confused with one another. Currently the doctors are investigating as to which I may have.. I have been hit again with the rare diagnosis.. Trust me, you can find humor in this.. walk into the hospital and say "HI, I'm Dani.. I haven't ate in weeks, I can't keep down water.. everything about me feels awful.. yes I am back due to failure to thrive.. OH by the way.. I have eosinophilic gastroenteritis or Churg-stauss syndrome" The looks you get are priceless. In some instances I know more about the disorders than the doctors do. If you have questions or anything please do ask.. And please, remember to always be positive and upbeat! Life is better when you look on the bright side of things :D

Dani D.

ravenwoodglass Mentor
ravenwoodglass
Posted
I am very sorry to hear this about you but very glad to see that you are upbeat about it! I know you posted this many months ago and I sincerely hope that you have found the answer, in the event you have not I hope I can be of help. I was diagnosed with eosinophilic gastroenteritis five years ago... it is so rare that it had NEVER been seen before by any provider of mine. At the time I was 14. Since, I have learned to deal with it... I am one of the most stubbern, up beat, optimistic girls out there.. my disease will not get me down. I was hospitalized for this just last week. (I returned to college the day after I was released... prime example I am stubborn!) I have not had real food in over a month, but cannot get IV nutrition. Some days my diagnosis scares the living daylights out of me.. they can treat it with prednisone but it has taken five years for this to happen.. I just started Prednisone today. If you feel that you may have eosinophilic gastroenteritis I would love to help you. I would also like to tell you about something else, it is called Churg-Strauss Syndrome. CSS and EG are commonly confused with one another. Currently the doctors are investigating as to which I may have.. I have been hit again with the rare diagnosis.. Trust me, you can find humor in this.. walk into the hospital and say "HI, I'm Dani.. I haven't ate in weeks, I can't keep down water.. everything about me feels awful.. yes I am back due to failure to thrive.. OH by the way.. I have eosinophilic gastroenteritis or Churg-stauss syndrome" The looks you get are priceless. In some instances I know more about the disorders than the doctors do. If you have questions or anything please do ask.. And please, remember to always be positive and upbeat! Life is better when you look on the bright side of things :D

Dani D.

Hi Dani, Welcome to the board and thank you for the very upbeat post. I just wanted to ask if they have tested you for celiac. EE is not a rare occurance here on the board. It is sometimes found in folks with celiac. They have tested fully tested you for celiac right? Including a trial of the gluten-free diet at some point.

positivenrgfairy Apprentice
positivenrgfairy
Posted

I don't understand.

you mean you haven't eaten ANYTHING in 2 years?

what are you doing to sustain your life?

I'm not being a smart ass I really don't get it.

soulcurrent Explorer
soulcurrent
Posted
I don't understand.

you mean you haven't eaten ANYTHING in 2 years?

what are you doing to sustain your life?

I'm not being a smart ass I really don't get it.

You and me both lady.. :blink:

Lisa Mentor
Lisa
Posted

Brian takes IV nourishment.

psawyer Proficient
psawyer
Posted

Brian has not eaten food in a long time, but takes nourishment intravenously. That is what keeps him alive.

danikins90 Newbie
danikins90
Posted

I have been tested numerous times for Celiac and come back negative every time. I have tried gluten free diets as well, no help. Thank you for the advise though! When I am able to eat again I intend on trying a gluten free diet again.

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