What Happened To Me? Could Celiacs Have Caused All Of This?

[JoyMurphy]

Sometimes, I am surprised I am still alive. I don't understand what happened to me.

My low points? My dad rushing me to the ER bc he thought I was dying. I was grey, eyes sunken, emaciated, dehydrated and babbling. The ER doc looked at me and said, I dont understand what you are doing hear or what you want me to do for you!

Or upon waking from a colonoscopy and the nurse cheerfully informed me everything was great! I burst into tears, told her I wanted to go to Boston and I wanted to get better. She told me, maybe I should talk to someone b/c I was depressed. I was sure she was telling me this was all in my head and I was making it all up.

My hell started in December (but can be traced back further) I became alarmed with memory loss. I would forget intense detailed conversations. I had poor word recall and name recall. Not normal stuff, I'm talking severe, people looked at me strangely. My fatigue worse than I had ever felt, 100x worse than pregnancy. Reflux and heartburn went through the roof and I was always nauseas. Distention and diarhea that more resembled urine. My psoriasis exasorbated, joint pain got to the pint where I couldn't walk down the stairs in the am, I slid down the wall. I was up 5 x a night to pee (not much) and had frequent night sweats, enlarged lymph nodes in front and back of the neck

I went to the dr. He suggested I could be diabetic or just depressed. He ran blood tests, called me a few days later w ith the good news I was just fine! Really?

I saw a homeopath for hormone testing to see if my mood swings and night sweats were early peri menopause. She told me she though the real problem was in my gut and I wouldn't feel better until I healed it. She thought I definitely had some food allergies, which made since bc, whenever I ate I got severely congested. She suggested I get off gluten and dairy and see if I felt any better. is take #1.... I got off gluten without a celiac screen. The good news, I started to feel better than I ever felt in my life, my color was better, swelling was down, only woke 2x a night..could now sleep on both sides of my body, reflux was better.

Then, it was like stepping on a hornets nest. I was getting sick all the time. I was blaming it on being cross contaminated everywhere. I was getting weaker and weaker. The homeopath did more allergy testing. I tested possitive for 35 + foods, and reacted to countless more. I was put on an elimination and rotation diet. I realized things I had felt for years and passed off, we're actual allergic reactions.

My body started to reject almost every food I put into it. I was losing a lb a day. In a month I had lost about 25 lbs. I couldn't get off the couch. I could barely walk to the bathroom or shower without passing out. When I walked it felt as if I was sinking into the floor. I needed to be supported when walking a longer distance. I could no longer drive or take care of my kids. That was the end of April.

I went back to my pcp...said something is not right please help me. My BP was through the roof, more blood tests revealed I had a high ANA, 640. My pcp sent me too a rheumatologist. Another week past. They thought I had lupus, the testing took 2 weeks, but the rhuemy told me it had nothing to do with my stomach issues. I burst into tears. No one was helping me. I called pcp, crying, demanding him to do something, he hadn't even ran an X-ray. So he told me to try to get in with a gi... Who thank god took pity on me and saw me. He said.."omg, you are a walking autoimmune disease!!!". Thought my neg celiac screen was high, especially for being off gluten for 3 months. He scheduled a colonoscopy and endoscopy. Then an upper gi and lower bowel series. Again everything looked great and I'm thinking everyone things I'm nuts!!!!!!! The gi wanted me to go to Beth Israel which was where I wanted to be. I was getting worse. I though, and my family thought I was dying. The drs all said I was fine.

I couldn't hold a coherent conversation. I would talk to someone on the phone and hang up mid sentence. My voice was weak and unrecognisable.

Within a week of getting to beth Israel my celiacs was confirmed, I was diagnosed with a neuroendocrine tumor on my pancreas. No one could understand my wide span of symptoms, the neurologist, hematologist, and rheumatologist thought I'd be better after the tumor was removed. Still not sure if anything else was wrong. Why was my Ana so high????

What laid me out for months where I couldn't get off the couch, screamed in pain if my legs were touched. Had a low grade fever everyday. Can only tolerate rice cakes, plain beef, pork, rice, steamed carrots, rice or white sweet potato, salt and pepper. Anything else I have reactions to.

After the surgery I can walk 6 driveways. I had a setback the other day that landed me in the hospital with pains as bad as the first day of surgery. No one can explain.

I have missed my spring and my summer. What happened to me?

The past few days I have been sick and exhausted from being glutened on Friday night. No one believes me that I could still be reacting to something that many days ago.

I just want to cry. Please help me

Joy

[Razzle Dazzle Brazell]

Sometimes, I am surprised I am still alive. I don't understand what happened to me.

My low points? My dad rushing me to the ER bc he thought I was dying. I was grey, eyes sunken, emaciated, dehydrated and babbling. The ER doc looked at me and said, I dont understand what you are doing hear or what you want me to do for you!

Or upon waking from a colonoscopy and the nurse cheerfully informed me everything was great! I burst into tears, told her I wanted to go to Boston and I wanted to get better. She told me, maybe I should talk to someone b/c I was depressed. I was sure she was telling me this was all in my head and I was making it all up.

My hell started in December (but can be traced back further) I became alarmed with memory loss. I would forget intense detailed conversations. I had poor word recall and name recall. Not normal stuff, I'm talking severe, people looked at me strangely. My fatigue worse than I had ever felt, 100x worse than pregnancy. Reflux and heartburn went through the roof and I was always nauseas. Distention and diarhea that more resembled urine. My psoriasis exasorbated, joint pain got to the pint where I couldn't walk down the stairs in the am, I slid down the wall. I was up 5 x a night to pee (not much) and had frequent night sweats, enlarged lymph nodes in front and back of the neck

I went to the dr. He suggested I could be diabetic or just depressed. He ran blood tests, called me a few days later w ith the good news I was just fine! Really?

I saw a homeopath for hormone testing to see if my mood swings and night sweats were early peri menopause. She told me she though the real problem was in my gut and I wouldn't feel better until I healed it. She thought I definitely had some food allergies, which made since bc, whenever I ate I got severely congested. She suggested I get off gluten and dairy and see if I felt any better. is take #1.... I got off gluten without a celiac screen. The good news, I started to feel better than I ever felt in my life, my color was better, swelling was down, only woke 2x a night..could now sleep on both sides of my body, reflux was better.

Then, it was like stepping on a hornets nest. I was getting sick all the time. I was blaming it on being cross contaminated everywhere. I was getting weaker and weaker. The homeopath did more allergy testing. I tested possitive for 35 + foods, and reacted to countless more. I was put on an elimination and rotation diet. I realized things I had felt for years and passed off, we're actual allergic reactions.

My body started to reject almost every food I put into it. I was losing a lb a day. In a month I had lost about 25 lbs. I couldn't get off the couch. I could barely walk to the bathroom or shower without passing out. When I walked it felt as if I was sinking into the floor. I needed to be supported when walking a longer distance. I could no longer drive or take care of my kids. That was the end of April.

I went back to my pcp...said something is not right please help me. My BP was through the roof, more blood tests revealed I had a high ANA, 640. My pcp sent me too a rheumatologist. Another week past. They thought I had lupus, the testing took 2 weeks, but the rhuemy told me it had nothing to do with my stomach issues. I burst into tears. No one was helping me. I called pcp, crying, demanding him to do something, he hadn't even ran an X-ray. So he told me to try to get in with a gi... Who thank god took pity on me and saw me. He said.."omg, you are a walking autoimmune disease!!!". Thought my neg celiac screen was high, especially for being off gluten for 3 months. He scheduled a colonoscopy and endoscopy. Then an upper gi and lower bowel series. Again everything looked great and I'm thinking everyone things I'm nuts!!!!!!! The gi wanted me to go to Beth Israel which was where I wanted to be. I was getting worse. I though, and my family thought I was dying. The drs all said I was fine.

I couldn't hold a coherent conversation. I would talk to someone on the phone and hang up mid sentence. My voice was weak and unrecognisable.

Within a week of getting to beth Israel my celiacs was confirmed, I was diagnosed with a neuroendocrine tumor on my pancreas. No one could understand my wide span of symptoms, the neurologist, hematologist, and rheumatologist thought I'd be better after the tumor was removed. Still not sure if anything else was wrong. Why was my Ana so high????

What laid me out for months where I couldn't get off the couch, screamed in pain if my legs were touched. Had a low grade fever everyday. Can only tolerate rice cakes, plain beef, pork, rice, steamed carrots, rice or white sweet potato, salt and pepper. Anything else I have reactions to.

After the surgery I can walk 6 driveways. I had a setback the other day that landed me in the hospital with pains as bad as the first day of surgery. No one can explain.

I have missed my spring and my summer. What happened to me?

The past few days I have been sick and exhausted from being glutened on Friday night. No one believes me that I could still be reacting to something that many days ago.

I just want to cry. Please help me

Joy

Hi sweety. I feel much empathy for all that you have endured! I was wondering whether you could see a specialist and find someone who will put you on an immune system surpressor if that is safe for you. As I'll as you are it seems you need something to counteract you immune system for a while. Don't give up! If you try your best to remain gluten free I am sure it will get better. As your horribly damaged gut (sounds like yours is one of the worst I have heard), your leaky gut will begin to heal itself and many of those allergies may just disappear. It may take a while but things will change I am sure. Many people on here were very I'll as you have been and claim they almost died. Please do not worry about what others think. I did for a while but I realized when i felt better, it was very evident I was a different person off gluten.

I, myself, was treated like my illness was in my head, simply because they couldn't figure out what was wrong. I was only 17 when I had my first trip to the ER and was treated like I was too young to be ill. I imagine i could have avoided a lot of pain and frustration if I had been diagnosed earlier. I can't imagine how bad it must be to have suffered so long with no diagnosis. There is hope!

Perhaps if your family doesn't understand delayed reactions you can find some similar posts on here about delayed and prolonged reactions, both.

[Mateto]

Your post got me emotional

I know what it's like. The doctor thinks you're looney, but you're not. You are SICK.

I wasn't as bad as you, but my doctor thought I was anorexic and depressed and everything thrown in. No, I was sick...I think a lot of doctors just want to keep us going for a while. It's ridiculous, NO ONE is too young to be ill.

[GottaSki]

I too have lost my Spring and Summer - it sucks!

I know all to well how hard it is to have your life highjacked by a malfunctioning body - the only thing I can suggest is be very kind to yourself, you have been through a lot -- you may still be healing from surgery and it often takes a long time to heal from undiagnosed celiac disease.

Take it an hour at a time - hang in there!

[ciamarie]

A lot of us are on pretty restricted diets, I'm still trying to figure out what I can eat due to being sensitive to msg, sulfites and soy as well as gluten. Eat the few foods you can eat, until you get some healing. Then you might want to look at something like the SCD or the 'fail-safe' diet. (SCD = specific carbohydrate diet). Due to malabsorption of nutrients, celiac can lead to all sorts of issues, as you found out. I hope you're on the mend soon, and you'll find lots of support here too.

[rosetapper23]

Sometimes when you've been undiagnosed for a long time, your body ends up suffering from many nutritional deficiencies--and those deficiencies can cause all (and more) of the symptoms that you're experiencing. You might try adding magnesium, manganese, and a B vitamin complex. Magnesium runs all of the systems in your body, and when you're deficient, your symptoms can be all over the place. Manganese deficiency can cause painful, weak muscles. A deficiency in the B vitamins can cause many symptoms, but they can also be responsible for a number of neurological symptoms.

Give it time....eat well....and take the above supplements. You'll start feeling better soon!

[nvsmom]

Oh gee... You've had an awful awful time of it. (((HUGS)) How unfair. We know it's not in your head. It's just your doctors' way to reassure themselves when they can't solve your problem.

I hope you start seeing relief soon after eliminating the common problem causing foods and taking lots of high quality vitamins (sublingual or injections might be best if a nutritionist agrees).

Hang in there. You probably have a tonne of damage done and it will take quite a while to heal, but it will heal.

Best wishes!

[GlutenFree-MLDub]

I really needed to read this post right now. I was going to write a post, but never know where to start. I can't tell you how to deal with what you're dealing with because I'm looking for the same guidance. I'm not going to be an inspiration right now, but knowing there are other people out there like me is helping. I have lost the past year and a half of my life to similar circumstances. Prior to that, things weren't good, but things just crashed severely in 2/2011. I had not had gut symptoms since 10 years ago and had not responded to the gluten free diet for some reason when I was first diagnosed. Because my gut damage was questionable in 3 of my 4 biopsies, many doctors told me not to worry and I was in denial because there was another cause for my gut symptoms when I was first diagnosed (a trip to Mexico). So last year, one night I was working late with a colleague and I started having trouble speaking. I had suffered from long periods of dizziness prior to that for a couple years. When I stood up from the speech issues to go get some juice, I was weaving and wobbling down the hallway. I recovered and went home, but suddenly my cognitive abilities were off and I was having trouble getting whole thoughts out. I was word searching and even began stuttering a few days later. Two trips to the ER and 15 doctors later, no one expressed concern about Celiac. Most doctors told me it was in my head. My MRIs showed UBOs which I've found research that indicates these can happen due to gluten antibodies showing up in the brain. My system continued to decline over the next few months. I could hardly move half the time. I dropped things. My legs would go tingly below the knee. There were times I couldn't lift my arms or keep my eyelids open. My vision was blurry, my eyes were 'saucy'. My 3-day ambulatory EEG showed seizure activity which explained why I would lose minutes at a time. Most of all, my cognitive state was a mess. I couldn't remember things. I couldn't finish sentences at times without asking what I was talking about. My blood sugar was crashing if I had the slightest bit of sugar/carb. I had times of severe orthostatic hypotension (and still do). Half the time when I stood up I'd have to hold on to something until I'm not dizzy. They thought I had MS, Myasthenia Gravis, hyperventilation issues leading to hypocapnia (low carbon dioxide in the blood), adrenal fatigue, lyme disease, lupus, etc. The list goes on.

When no one could figure out what was wrong with me, the disability insurance turned down my short term claims after missing 3 months of work saying that I didn't have any indication of a 'severity of symptoms' that showed the need to be out of work. So, I went back to work, sick, after being not paid for 3 mos. Two months later, I ended up in the hospital and the next 3 months of disability WAS approved.

I recovered some, but not all the way and while back at work for 4 months, I was still very depressed, brain foggy and having anxiety attacks often. I still needed 10 hours of sleep to have a half decent day. So with all those things still going on, 2 months ago, I went back to the Celiac diagnosis with my ND and stopping gluten made me feel like a human again. Brain fog, depression, pressure in the chest, fatigue... ALL GONE>

The problem now is that the glorious feeling of quitting gluten is GONE. Now, if I encounter gluten by mistake or stupidity, I lose days. I have been sick in bed since Friday night's HUGE mistake. A grill we thought was cleaned was not. We heated it to over 600 degrees for more than 30 minutes, but it still got me sick when I ate off it.

I don't know what to do... I need a support mechanism locally and I just don't have it. I'm so lost. I can't take this anymore...

[Kirstie]

I really needed to read this post right now. I was going to write a post, but never know where to start. I can't tell you how to deal with what you're dealing with because I'm looking for the same guidance. I'm not going to be an inspiration right now, but knowing there are other people out there like me is helping. I have lost the past year and a half of my life to similar circumstances. Prior to that, things weren't good, but things just crashed severely in 2/2011. I had not had gut symptoms since 10 years ago and had not responded to the gluten free diet for some reason when I was first diagnosed. Because my gut damage was questionable in 3 of my 4 biopsies, many doctors told me not to worry and I was in denial because there was another cause for my gut symptoms when I was first diagnosed (a trip to Mexico). So last year, one night I was working late with a colleague and I started having trouble speaking. I had suffered from long periods of dizziness prior to that for a couple years. When I stood up from the speech issues to go get some juice, I was weaving and wobbling down the hallway. I recovered and went home, but suddenly my cognitive abilities were off and I was having trouble getting whole thoughts out. I was word searching and even began stuttering a few days later. Two trips to the ER and 15 doctors later, no one expressed concern about Celiac. Most doctors told me it was in my head. My MRIs showed UBOs which I've found research that indicates these can happen due to gluten antibodies showing up in the brain. My system continued to decline over the next few months. I could hardly move half the time. I dropped things. My legs would go tingly below the knee. There were times I couldn't lift my arms or keep my eyelids open. My vision was blurry, my eyes were 'saucy'. My 3-day ambulatory EEG showed seizure activity which explained why I would lose minutes at a time. Most of all, my cognitive state was a mess. I couldn't remember things. I couldn't finish sentences at times without asking what I was talking about. My blood sugar was crashing if I had the slightest bit of sugar/carb. I had times of severe orthostatic hypotension (and still do). Half the time when I stood up I'd have to hold on to something until I'm not dizzy. They thought I had MS, Myasthenia Gravis, hyperventilation issues leading to hypocapnia (low carbon dioxide in the blood), adrenal fatigue, lyme disease, lupus, etc. The list goes on.

When no one could figure out what was wrong with me, the disability insurance turned down my short term claims after missing 3 months of work saying that I didn't have any indication of a 'severity of symptoms' that showed the need to be out of work. So, I went back to work, sick, after being not paid for 3 mos. Two months later, I ended up in the hospital and the next 3 months of disability WAS approved.

I recovered some, but not all the way and while back at work for 4 months, I was still very depressed, brain foggy and having anxiety attacks often. I still needed 10 hours of sleep to have a half decent day. So with all those things still going on, 2 months ago, I went back to the Celiac diagnosis with my ND and stopping gluten made me feel like a human again. Brain fog, depression, pressure in the chest, fatigue... ALL GONE>

The problem now is that the glorious feeling of quitting gluten is GONE. Now, if I encounter gluten by mistake or stupidity, I lose days. I have been sick in bed since Friday night's HUGE mistake. A grill we thought was cleaned was not. We heated it to over 600 degrees for more than 30 minutes, but it still got me sick when I ate off it.

I don't know what to do... I need a support mechanism locally and I just don't have it. I'm so lost. I can't take this anymore...

I feel so sad reading all of these and seeing how so many people have needlessly suffered due to so many uneducated doctors who do not understand!

I think the really really important thing is to not fall out with your body. It's difficult and I often find myself in tears of anger and frustration, blaming my body and hating it! When really that's no help at all.

Also, talking to people who understand. The confirmation that I WASN'T crazy was such a relief. Being a young woman, every doctor I saw blamed my periods! (Which were agonising, sure) But they also accused me of being anorexic (once in front of a few medical student's watching, very embarrassing and unsympathetic!) I've been told I'm depressed, brushed aside with IBS, doctor's have laughed saying "If I didn't know any better I'd say you were pregnant!" Great thing to say to a scared, alone, 16 year old girl! But the worst of all was being told I was FINE.

Since when was chronic constipation, fatigue, brain fog, memory loss, reoccurring mouth ulcers, constant nausea and painful vomiting, fainting and general weakness fine!?

You need to talk about your symptoms, to people who understand, and have patience with yourself and your body. Remember that you WILL get better.

[cavernio]

Hang in there, I know you can! Don't let people, especially doctors, get to you! No one really knows how badly you feel except for you, so next time a doctor tells you 'you're fine', insist that they just keep looking for other reasons why you're not fine. Your family loves and cares for you, even if they don't understand. It's unfortunately perfectly normal for celiacs to have reactions to gluten last for days or much longer. That gluten you ate on Friday might have consequences that last months.

I can't imagine how awful it must be to be so sick, having a pancreas tumor as well as celiac disease symptoms at the same time, but keep on being very, very careful with what you eat. Don't you dare eat anything that you're not 100% certain is gluten free! (FYI, I've seen black pepper that has wheat as an indredient, so double check yours.) And don't risk other foods that you know don't agree with you either. Its bland and its boring but healthy and boring is better than tasty and sick. And yes, all this stuff could be celiac disease bothering you, even with your tumor gone. Nutritional deficiencies and inflammation can cause all sorts of weird and awful problems.

I really hope you will start to feel better soon, and I hope that your surgery went alright and that there's no further complications with it. And it's alright to cry, I do and I'm not half as sick as you.

[JoyMurphy]

I really needed to read this post right now. I was going to write a post, but never know where to start. I can't tell you how to deal with what you're dealing with because I'm looking for the same guidance. I'm not going to be an inspiration right now, but knowing there are other people out there like me is helping. I have lost the past year and a half of my life to similar circumstances. Prior to that, things weren't good, but things just crashed severely in 2/2011. I had not had gut symptoms since 10 years ago and had not responded to the gluten free diet for some reason when I was first diagnosed. Because my gut damage was questionable in 3 of my 4 biopsies, many doctors told me not to worry and I was in denial because there was another cause for my gut symptoms when I was first diagnosed (a trip to Mexico). So last year, one night I was working late with a colleague and I started having trouble speaking. I had suffered from long periods of dizziness prior to that for a couple years. When I stood up from the speech issues to go get some juice, I was weaving and wobbling down the hallway. I recovered and went home, but suddenly my cognitive abilities were off and I was having trouble getting whole thoughts out. I was word searching and even began stuttering a few days later. Two trips to the ER and 15 doctors later, no one expressed concern about Celiac. Most doctors told me it was in my head. My MRIs showed UBOs which I've found research that indicates these can happen due to gluten antibodies showing up in the brain. My system continued to decline over the next few months. I could hardly move half the time. I dropped things. My legs would go tingly below the knee. There were times I couldn't lift my arms or keep my eyelids open. My vision was blurry, my eyes were 'saucy'. My 3-day ambulatory EEG showed seizure activity which explained why I would lose minutes at a time. Most of all, my cognitive state was a mess. I couldn't remember things. I couldn't finish sentences at times without asking what I was talking about. My blood sugar was crashing if I had the slightest bit of sugar/carb. I had times of severe orthostatic hypotension (and still do). Half the time when I stood up I'd have to hold on to something until I'm not dizzy. They thought I had MS, Myasthenia Gravis, hyperventilation issues leading to hypocapnia (low carbon dioxide in the blood), adrenal fatigue, lyme disease, lupus, etc. The list goes on.

When no one could figure out what was wrong with me, the disability insurance turned down my short term claims after missing 3 months of work saying that I didn't have any indication of a 'severity of symptoms' that showed the need to be out of work. So, I went back to work, sick, after being not paid for 3 mos. Two months later, I ended up in the hospital and the next 3 months of disability WAS approved.

I recovered some, but not all the way and while back at work for 4 months, I was still very depressed, brain foggy and having anxiety attacks often. I still needed 10 hours of sleep to have a half decent day. So with all those things still going on, 2 months ago, I went back to the Celiac diagnosis with my ND and stopping gluten made me feel like a human again. Brain fog, depression, pressure in the chest, fatigue... ALL GONE>

The problem now is that the glorious feeling of quitting gluten is GONE. Now, if I encounter gluten by mistake or stupidity, I lose days. I have been sick in bed since Friday night's HUGE mistake. A grill we thought was cleaned was not. We heated it to over 600 degrees for more than 30 minutes, but it still got me sick when I ate off it.

I don't know what to do... I need a support mechanism locally and I just don't have it. I'm so lost. I can't take this anymore...

I have had the same problems, my knee would buckle out for no reason, fingers and toes would tingle and go numb. STUTTTERING!!!!!! All the time!!!!!!!! Can't concentrate, have lost my witty comebacks......I used to be pretty funny (well, at least I thought so)... My brain would shutter and flutter. I had weird optical illusions like my daughters being out of focus and shaking up and down like on the old tvs with rabbit ears that needed to be adjusted. Conversations were so embarrassing, I would sometimes stop and cry. It is so nice to hear I am not alone. The only ones that get it are other celiacs. I was so glad to hear your story. I am so sad to hear it as well. I don't know how you were able to work! I couldn't even focus to read a book. Thank you for making me feel ok.

[JoyMurphy]

I tried to write a response, and I lost it....

I wanted to write to allof you, but I don't have that much stamina. You have all moved me to tears. It is nice not to feel so alone. I have felt so isolated. Laying on my couch for months, not being able to move, watching my friends drive by, water their plants, and no one stopped to visit. They all thought I was faking it, or it was in my head, i was depressed, stressed or unhappy in my marraige. I think even my husband believed that it was stress. He never denounced it. My dad never doubted me. He knew there was something wrong.

One friend texted me when she heard the diagnosis, " I heard the good news!!". I said, " what was that? That I have celiac disease? That I have the same rare tumor Steve jobs had? Or that im not just stressed??"

The next week my cat had to be put to sleep, it was sick and old, and I will spare the gross details. This friend responded with so much concern over the dead cat, and asked " what really happened?". I told her, I'm not sure, I think it was stress!"

The only people that got it were my friends that were nurses and those with celiacs.

I am so glad to be here.

I t amazes me how long a glistening can last. I was bad the last few days, today is up and down. It's hard for others to understand it. I know bc I used to be one of those others who thought, " what's the big deal.". Oh, I get it now, and I am so ashamed I ever thought that before.

Thank you all

[justlisa]

I cried like a baby...still am truth be told.

I know, firsthand, what you feel... I'm there...

I've been "dying" for the last few years. Can't tell you how many times I've said, "I probably won't 'be here'"..."I just want...blah blah blah...while I still can...", etc, etc. And, of course, I'd get the obligatory "you'll be fine"..."you're not going to die"...yada yada yada.

I would just want to SCREAM at people (more often than not, I didn't scream, though...),"I'm not looking for sympathy, you morons"...or the rest of that crap! I really think I'm dying here! Nobody really "got it". How could they, really? All I really wanted was to make sure my son was going to be "okay". I wasn't looking for a pity party. In fact, it wasn't the fact that I felt like I was dying that made me want to scream...it was all the people who were poo-pooing me...not helping me...making me feel like a crazy person. Even those who were watching me deteriorate a little more every day.

When you are that sick...getting worse EVERY DAMN DAY...and NO ONE can figure out what's wrong with you? When you can't do the simplest things anymore? How can you not feel like you're dying???

While I'm still sick, I have found HOPE that I could get better.

With all that commiserative-ranting aside...I agree about, perhaps, looking into an immune suppressor. I believe you need to mitigate some of your autoimmune responses while you heal. You're too sick to wait

hat out, imo.

We are here for you...and we "get it"...

[JoyMurphy]

I've heard a lot of mention of immune suppressors. What exactly do they do? How will they help me? I'm willing to do anything.

[justlisa]

Joy...

First concern would be where you are in your recovery from the tumor... Your doc can advise you on that.

My thinking (and I'm certainly not a doctor...just someone who went the immuno-suppressant road for my supposed RA (rheumatoid arthritis) for the past 4 years...is that you are possibly (probably?) having such a monsoon of autoimmune symptoms that your body (and let's face it, emotions) just can't handle it all right now. And, it will take time for you to heal your body (celiac). It's not going to happen quickly, from what I've learned...the more severe/progressed we are, the harder/longer it takes... You don't just have to remove the gluten...you have to heal your gut...but, the most important piece for both of us is that our bodies "get the signal" and stops attacking itself. Get our immune systems to relax... And, this will take time.

So, I'm just thinking that an immune suppressor (humira, enbrel, etc) might help take some of your autoimmune symptoms down a notch (or 20) while you heal... Just a thought...I think it's something you can at least talk over with your doc...

[Gemini]

What jumped out at me, Joy, was the statement you made about losing 1 pound per day. That was me, at the end, and I ended up being diagnosed when I hit 97 pounds. So, I really can relate to this and how scary it is. Being patient is of the utmost importance and it may very well take a year before you notice marked improvement but it will happen. I do not advocate taking any kind of immune-suppresant but then again, I am not in your shoes or anyone else's on that. You have to do what's best for you but recovery can and will happen, long term. There is no magic pill for recovery with Celiac, unfortunately.

And don't worry about what other people think! I know it hurts when family become doubtful about how careful you have to be....I have received my share of eye rolls over CC issues, believe me! Screw 'em! Concentrate on you!

[Razzle Dazzle Brazell]

I've heard a lot of mention of immune suppressors. What exactly do they do? How will they help me? I'm willing to do anything.

They essentially just block the subjects immune system. Care has to be given because it also means it can lower your ability to fight common colds and germs and whatever else. Stopping your immune system from beating itself up is pretty important. I think it is much more of a threat than a common cold.

Here is a link:

Open Original Shared Link

It has a good example and talks about celiac crisis. I skimmed a bit to get to the useful parts. It may be helpful to you to see sometimes it can be necessary.

[justlisa]

They essentially just block the subjects immune system. Care has to be given because it also means it can lower your ability to fight common colds and germs and whatever else. Stopping your immune system from beating itself up is pretty important. I think it is much more of a threat than a common cold.

Here is a link:

Open Original Shared Link

It has a good example and talks about celiac crisis. I skimmed a bit to get to the useful parts. It may be helpful to you to see sometimes it can be necessary.

Excellent...relevant and informative!

[RuskitD]

Wow. I have to tell you that you are not alone. Your story is so close to mine in details and time line.... It refreshed my memory of all I felt and have been through, and made my heart ache!

I couldn't hold a coherent conversation, didn't have a logical thought. The BM looking like urine, coming more often than peeing. The lymph nodes... mine came with boils, the poison trying to get out of my body. Hair and lashes falling out in clumps. Could only stand or be awake long enough to make another trip to the bathroom and then I was asleep again. Bloating and heartburn. Feeling like you are losing your mind!!!!!!

I, too, am amazed each day I am alive. I feel glorious about it! Even if I have a bad day, I find euphoria in the fact I am still here.

I am a person who doesn't cry. I take what life gives me and meets it head on. I cried when the medical tests done all came back good! I never was one to go to the doctor, so here I was, so sick and weak, in the hands of medical professionals with trust they would help me, I'm feeling as if I was dying, and they tell me ALL IS WELL!

My husband freaked out to see the tears because he never saw me so weak and defenseless. I needed to know my enemy so I could fight it. The tests showed no enemy.

Dr suggested a trip to MN Mayo. It would take 3 months to get in, he said. Go home, wait, and Don't change anything in your life so that symptoms remain the same. I went home thinking I would be dead in 3 months. I had the change something, change everything! I wanted to live!

That is what I did. I found I could eat boiled chicken, green beans and eggs with no reaction. That is all I ate, until I began to get stronger and my mind cleared so I could actually think logically. No it wasn't nutritionally balanced, but who knew how much food was actually being absorbed anyhow? My body was starving, but in my case I was 'overweight'. I knew I needed to calm and heal my digestive system (thanks to this site), I had to stop the reactions and calm the inflammation before I could heal.

I studied here, finding others who had already suffered and were full of compassion and good advice. One by one I added a food to my diet, and recorded the reaction and my weight in a diary. Any changes in my body over a couple days and I knew whether my body was going to allow that food.

I didn't have testing for food insensitivities. I did it myself. My body told me with a vengeance what it could not tolerate.

In about 3 months, I quit trying new foods. It was a personal choice. I do not eat a well balanced diet yet, but I also quit having setbacks in my healing. Each new food was a risk of setback to my healing. Each new supplement was a risk my body would not accept it. My reactions are not just neurological, but physical, and mental... and also will shoot the scales up by 5 lbs overnight with an inflammatory reaction.

Its been 6 months and I am so much better over what I have been in years. The lymph nodes still swell, but they do not stay swelled for months on end. I have boils still, but I embrace them now, knowing its a way my body uses trying to get the remaining poisons out of me to get me better. I have lost 20 lbs of fluid off my body, so I know my body is less inflamed than it was. My lashes are growing back. Most days I can think so clearly I almost scare myself with the logical, coherent thoughts!!!

I am not at my full health yet, I know it! But I also know the human body will repair most damage given enough time and chance to do so. As much as it bugged me to read here over and over PATIENCE is the key, it is true.

I suddenly live in fear. I have never feared much in my life. But I live in fear of gluten/soy/corn/dairy. I live as though it will kill me. Maybe that is drastic, but its how I live. I prepare my own 'fresh only' food, I will NOT eat what someone else has prepared! I cannot chance it. I don't think its someone else's responsibility to have to be so careful in food prep. It is hassle enough for me to have to do it. But I have never once been accidentally glutened.

I never looked at my diet sadly thinking about what I can't have. I look at it that I am thankful I have found a few items I CAN safely eat and never have reactions to. I know I get more food choices than some people here.

I truly do believe I dodged a bullet and have a second chance at life. I look at it as a blessing, not a curse. I honestly think had I gone through the medical procedures and testings and let a dr dictate my care, i would be dead or nearly there right now. I WAS offered treatment, a bunch of medicines. I declined that as sick as I was. I am thankful I did!!! Because I know I would still be poisoning my body AND be taking a bunch of meds to try to alleviate the symptoms. It scares me to think where I would be if I had done that.

I no longer smooch the faces of my grand babies, for fear of a gluten crumb getting on my lips. I kiss the tops of their heads. I don't let them run around with a cookie in their hand, for fear they will gluten the arm of a chair that I might later touch.

I act paranoid wiping their hands and faces. The exact opposite of the free spirit grandma used to be, of letting the kids run amok and not worrying about finger prints or crumbs in the house.

I want to warn you, to make sure you go to just sea salt. I and others have found that processed salt can cause a reaction. Who would have thought?

Continue to do everything with your health in mind. Eat the few things you know you don't react to, rest when you need it, take as good of care of yourself as you can. Trust that as your body heals, you will get better and stronger. But the body was VERY damaged. It will first need to adjust to not being poisoned, then it will begin to heal. It IS a slow process, and wanting to feel better NOW can be frustrating and depressing! I know my diary was a saving grace many times. I can look back and see the progress and when it began. Sometimes it hadn't been as long as I thought it had. Having it in the diary helps me immensely.

Trust that when you continue to do what your body needs, it will respond and reward you!

Some days I look in the mirror and see how much I aged in an 8 month period before my crash, and I don't know who she is. In 6 months healing time I don't resemble the woman who I was. I am looking younger every day, and acting it. My health is improving and my mind is amazingly clear. I keep dreaming about a year from now.... who will I be, what will I look like. Its exciting for me!

I know I hated to read it, but its the best advice out there.... consistency and patience. You didn't get here overnight, and it won't go away overnight.... but it will continue to get better.

Hugs to you !!!

[justlisa]

Wow, RuskitD... Very compelling...thanks so much for sharing that! Truly great advice...