Desperate For Any Advice.

[SleepyMommy]

Hi. I'm new to the forum, and unfortunately, I have a long story. I'll try to make it short---er.

I have always, always been sick. From the day I was born, I've had problems. I've always dealt with scoliosis (curvature of the spine) and bladder pain. I've never been able to run very well, despite being thin and having plenty of food. I was never able to exercise like other kids, but I DID move around a lot, and appeared healthy. However, I did show signs of OCD as a child, which got worse during college.

Anyway, I got married and moved to Korea, where I immediately became VERY sick. It was beyond the normal adjustment people make with new food. I was diagnosed with IBS, an ulcer, and acid reflux. I went back and forth between severe diarrhea and constipation. It got so bad, I couldn't ride in a car or feel even the slightest anxiety---especially in relation to traveling a long distance. (There aren't bathrooms everywhere like in the USA.) During my time there, we had no car, so I walked a lot. Add the stomach issues and I lost about 30 pounds. (I also had a hernia operation while I was there!)

Came back to the USA, gained some of the weight back. My stomach kind of got better. I was so used to the 'extreme' that normal had a new definition for me. As long as I 'went' sometimes, I was happy.

Skip ahead 2 years. I'm a very energetic preschool teacher. I couldn't sit down! I adored my job, and would even work during my lunch break. It was a very happy time for me. However, that extra 20 pounds wasn't going anywhere, no matter what I did. Anyway, after feeling strange and falling asleep constantly, I found out I was pregnant. This started a chain of events that I could've never predicted.

10 months after my son was born, an MRI showed that I had a large brain tumor that had to be removed immediately. It was not cancerous, thankfully, but I walked in feeling a little off-balance, and after surgery, I couldn't walk at all. In fact, I couldn't see, walk, write, eat.....etc. I had to relearn to walk because I was now deaf on the right side and blinded, too. No sense of balance. I couldn't swallow even my own saliva, so I had to have a peg tube. My short term memory was/is a wreck. I lost my singing voice, too, because...oh yeah, the whole right side of my face was paralyzed. It looked as if I'd had a stroke. I don't even remember my 30th birthday because I was in NICU and totally knocked out. It's been a long road, but I'm trying to cope with that.

Of course, with that trauma, I found myself in the midst of depression and with a generalized anxiety disorder. Well earned! My baby son could not be with me, I was still relearning how to live, and basically my entire world was upside down. Then came the Wellbutrin and Xanax. I'm still on those today.

About a year after my surgery in 2006, I was still so sick and tired, barely able to move around and completely unable to stay awake for any length of time. Something was wrong. I knew it wasn't just medication, so I researched until I figured it out. After going to a neurologist, I found out I have narcolepsy. If you're not familiar with it, look it up. It is extremely debilitating---way worse than the stupid brain tumor!

I've tried everything to stay awake, and finally I found something linking an intolerance to gluten with some narcolepsy 'attacks' in certain people. I'd already gone organic and vegetarian, now this. I've been gluten-free for a couple of weeks now, and I think it's helping some. I'm not having random sleep attacks---AKA I know the cause. (Anxiety, shock, etc.) I have not been tested by a doctor because I am SICK of doctors and their tests! SICK SICK SICK! I find that I'm never helped, and the whole thing causes me anxiety, which makes me fall asleep. Then, nothing comes of the tests except a big bill in the mail.

I'd like to run my vast array of symptoms by you guys, and if anyone has advice, I'd truly appreciate it.

-Extremely constipated. I can't use the bathroom without going to ridiculous measures. UNLESS I'm in the worst situation possible, like traveling, then I get diarrhea. *ugh*

-Allergic to latex

-All the symptoms of narcolepsy: memory loss, foggy brain, hallucinations, sleep paralysis, double vision, confusion, extreme sleepiness---coffee makes me fall asleep!

-Leftover brain tumor stuff: completely deaf on one side, mostly paralyzed on that side of my face, right eye can't blink, sinus doesn't work on that side, balance issues

-Depression

-Anxiety/Panic attacks

-Joint pain

-Stiffness

-Joints that 'crack' when being moved---like my knees make LOUD sounds when I bend them

-Back pain

-Heart palpitations

-Horrible menstrual cycles! I've almost asked my husband to take me to the ER! (All hormone tests come back 'normal'---WHATEVER!)

-Little sex drive

-Can't take any type of birth control, not even the ring. I've had very severe reactions. With the ring, I was itching all over my body.

-Infertility. Married 7 years, no BC, no baby.

-Can't lose weight to save my life!!! I thought I was dropping weight with the gluten-free thing, but it halted after about 5 pounds.

There's more, but I can't write a book here. I'm 33 with a 3-year-old son. I used to be SO energetic, and now I can barely take care of him. Does this sound like a gluten issue? Is anything related? Today, I've been almost suicidal thinking about all the things that have been taken away from me, and I feel useless. I have no motivation to do anything except find help. It's becoming an obsession, but provides me no happiness. Help?

[mushroom]

Hi. I'm new to the forum, and unfortunately, I have a long story. I'll try to make it short---er.

I have always, always been sick. From the day I was born, I've had problems. I've always dealt with scoliosis (curvature of the spine) and bladder pain. I've never been able to run very well, despite being thin and having plenty of food. I was never able to exercise like other kids, but I DID move around a lot, and appeared healthy. However, I did show signs of OCD as a child, which got worse during college.

Anyway, I got married and moved to Korea, where I immediately became VERY sick. It was beyond the normal adjustment people make with new food. I was diagnosed with IBS, an ulcer, and acid reflux. I went back and forth between severe diarrhea and constipation. It got so bad, I couldn't ride in a car or feel even the slightest anxiety---especially in relation to traveling a long distance. (There aren't bathrooms everywhere like in the USA.) During my time there, we had no car, so I walked a lot. Add the stomach issues and I lost about 30 pounds. (I also had a hernia operation while I was there!)

Came back to the USA, gained some of the weight back. My stomach kind of got better. I was so used to the 'extreme' that normal had a new definition for me. As long as I 'went' sometimes, I was happy.

Skip ahead 2 years. I'm a very energetic preschool teacher. I couldn't sit down! I adored my job, and would even work during my lunch break. It was a very happy time for me. However, that extra 20 pounds wasn't going anywhere, no matter what I did. Anyway, after feeling strange and falling asleep constantly, I found out I was pregnant. This started a chain of events that I could've never predicted.

10 months after my son was born, an MRI showed that I had a large brain tumor that had to be removed immediately. It was not cancerous, thankfully, but I walked in feeling a little off-balance, and after surgery, I couldn't walk at all. In fact, I couldn't see, walk, write, eat.....etc. I had to relearn to walk because I was now deaf on the right side and blinded, too. No sense of balance. I couldn't swallow even my own saliva, so I had to have a peg tube. My short term memory was/is a wreck. I lost my singing voice, too, because...oh yeah, the whole right side of my face was paralyzed. It looked as if I'd had a stroke. I don't even remember my 30th birthday because I was in NICU and totally knocked out. It's been a long road, but I'm trying to cope with that.

Of course, with that trauma, I found myself in the midst of depression and with a generalized anxiety disorder. Well earned! My baby son could not be with me, I was still relearning how to live, and basically my entire world was upside down. Then came the Wellbutrin and Xanax. I'm still on those today.

About a year after my surgery in 2006, I was still so sick and tired, barely able to move around and completely unable to stay awake for any length of time. Something was wrong. I knew it wasn't just medication, so I researched until I figured it out. After going to a neurologist, I found out I have narcolepsy. If you're not familiar with it, look it up. It is extremely debilitating---way worse than the stupid brain tumor!

I've tried everything to stay awake, and finally I found something linking an intolerance to gluten with some narcolepsy 'attacks' in certain people. I'd already gone organic and vegetarian, now this. I've been gluten-free for a couple of weeks now, and I think it's helping some. I'm not having random sleep attacks---AKA I know the cause. (Anxiety, shock, etc.) I have not been tested by a doctor because I am SICK of doctors and their tests! SICK SICK SICK! I find that I'm never helped, and the whole thing causes me anxiety, which makes me fall asleep. Then, nothing comes of the tests except a big bill in the mail.

I'd like to run my vast array of symptoms by you guys, and if anyone has advice, I'd truly appreciate it.

-Extremely constipated. I can't use the bathroom without going to ridiculous measures. UNLESS I'm in the worst situation possible, like traveling, then I get diarrhea. *ugh*

-Allergic to latex

-All the symptoms of narcolepsy: memory loss, foggy brain, hallucinations, sleep paralysis, double vision, confusion, extreme sleepiness---coffee makes me fall asleep!

-Leftover brain tumor stuff: completely deaf on one side, mostly paralyzed on that side of my face, right eye can't blink, sinus doesn't work on that side, balance issues

-Depression

-Anxiety/Panic attacks

-Joint pain

-Stiffness

-Joints that 'crack' when being moved---like my knees make LOUD sounds when I bend them

-Back pain

-Heart palpitations

-Horrible menstrual cycles! I've almost asked my husband to take me to the ER! (All hormone tests come back 'normal'---WHATEVER!)

-Little sex drive

-Can't take any type of birth control, not even the ring. I've had very severe reactions. With the ring, I was itching all over my body.

-Infertility. Married 7 years, no BC, no baby.

-Can't lose weight to save my life!!! I thought I was dropping weight with the gluten-free thing, but it halted after about 5 pounds.

There's more, but I can't write a book here. I'm 33 with a 3-year-old son. I used to be SO energetic, and now I can barely take care of him. Does this sound like a gluten issue? Is anything related? Today, I've been almost suicidal thinking about all the things that have been taken away from me, and I feel useless. I have no motivation to do anything except find help. It's becoming an obsession, but provides me no happiness. Help?

Oh my, I felt so sad reading your story. What a miserable time you have had and are having. Makes a lot of the tales of woe on here sound like happy fairy tales.

First of all, welcome to the forum. Let's hope that the combined wisdom of our members can provide you with some help. I will state right off that I am not one of the most knowledgeable on here; I am 18 months into my gluten free journey, after a lifetime of unhappy gluten consumption. Those are my only qualifications, plus the information I have gleaned from this site and elsewhere on the internet,. I am self-diagnosed.

I can't even begin to address your brain tumor issues; that must have been an extremely frightening time, and the ongoing struggle to recover takes a lot of your strength.

There are some here on the forum who have had narcolepsy; I am sure they will post to you.

I can imagine how you must be so sick of doctors, so you will probably not like what I am going to say. From reading your symptoms you could very well be celiac. The only way to find out for sure is to continue eating gluten and have a celiac blood panel run, and a small intestine endoscopy, both ordered by doctors. There are times when no matter how resistant we feel, that is the way we have to go, like with your brain tumor. Doctors are our access to these tests. There are other non-doctor tests but they are not considered as reliable if you want a definitive diagnosis.

Of your symptoms, constipation and diarrhea, joint problems of all sorts, heart palpitations, menstrual problems, infertility, anxiety and panic attacks, depression, all are familiar symptoms here.. Not to say you are a celiac, but they are suggestive. Do you have a PCP you could go to and ask to run the celiac panel of blood tests? These test for the presence of antibodies to gluten in the blood. I do think this should be your first step. I guess the reason you ended up here is that you figured this out for yourself. The next step is an endoscopy to take tissue samples from the small intestine to check for gluten damage. If you cannot get any positive results from either of these tests, then you should try the totally gluten free diet and see if your symptoms clear up. I note you say you have been gluten free for a couple of weeks. If you want to have an accurate test, you must continue to consume gluten, as painful as it may be, until your testing is complete, otherwise the validity of your tests will be affected.. It is also possible that you have not been entirely gluten free because it hides in the damnedest places.

I wish you much luck on your diagnostic journey, and continued recovery from your brain tumor. Do keep on posting; the folks on here are very helpful.

Hugs.

[Amy Joe]

So sorry to hear of your struggles. So much of what you wrote sounded like my daughter. She to is so sick of dr.'s. I am closing in on 7 months recovery from brain surgery myself, nothing such as yours....WOW!

My question is this:

Have you had your Thyroid tested

Vitamin D tested

B12 tested

All of these can cause a lot of your symptoms.

I am new here myself. After putting so much effort into my own recovery, the fatigue has just gotten worse, with my Endocrinologist we have discovered I was Positive with blood work for Celiac, had the biopsy and the reports states positive as well.

What I tell my daughter about her continues health issues is........we find the Dr's that understand and we just grind through it. She has such panic attacks with her appointments. She is 22 and married. She was nearly killed by a cowboy surgeon for an obstructed small bowel, this left her very disfigured in her stomach, no belly button. She spent nearly 2 years recovering...it was horrid. Her wound is compared to a war time gut shot!

My point is, you need a good health advocate that will help you find the right GI / Endo dr's. Someone who will be with you during appointments. Help you in getting the right treatment while protecting YOUR comfort. Some of the symptoms you talk about CAN be controlled......first comes the advocate to help YOU sort out what you want taken care of......

Trust is a big deal when you have had bad experiences. I can feel this in your post!

Be Blessed

Amy Joe

[SleepyMommy]

Thanks for the advice. I appreciate any support you guys will give me.

I've had a zillion blood tests run, so one would think this should've been tested. However, with my luck, it has not. I had a horrible experience in Korea where I had to swallow a rather large endoscope FULLY CONSCIOUS and watch it on TV! That was when I had an ulcer. It scraped the back of my throat and I kept gagging----to no avail. So, I have anxiety about doing that, as you can imagine. (I know it's done differently here, and I'll be 'put out.') Also, my vocal cords were permanently damaged after the brain surgery and I had a feeding tube down my throat. There you go---more fear. Still, if I must, I must. *crying* Also, something like this, the anxiety of it, would most definitely cause a narcoleptic attack. The fun never ends.

I think I accidentally ate gluten the other night, and after being gluten-free for about a week, something happened. I HOPE you guys can answer this question. By the time I got home, it felt like I had swallowed a rock. Literally, a rock. You could feel the food in my stomach by touching my belly, and it wasn't going anywhere! I was up all night with it in my stomach, as if my body had no intention of trying to digest it. I don't remember ever feeling this way. My food ALWAYS feels 'stuck' in my body, but not in my stomach. Does this sound familiar? Does the stuck-in-the-body feeling sound familiar? The food all feels concentrated in the middle somewhere, and would stay there if I didn't drink laxative tea or take Miralax.

On another note, the reason I'm mad at doctors is this---They WILL NOT LISTEN TO ME! They all act as if I have no idea what's going on in my body. After doing extensive research on different things, I'll suggest to them, "Well, I've looked into it, and it might be..." That's where I'm cut off. They all become offended by my audacity! How could I (little ol' me) know ANYTHING?! I've diagnosed myself so many times, it's not funny. I've even gone to the doc several times to say, "I have a UTI." The test comes out normal. "No, Dr. X, I KNOW I have a UTI. It may not be very strong right now, but..." Then, I get the ego again. So, all of those times, I've had to go back 2 days later with a severe infection, pay another co-pay, and act like nothing has happened. This has not been ONE doc, but many. I also had a PCP get angry with me for believing in the quackery of my chiropracter! I went to him for pain meds because, although the C had fixed my problem, I couldn't bear the pain leftover anymore. He was furious and said it was 'impossible' for my pain to be muscle pain (what the chiro said), then he made me have x-rays to prove it! "Something might be wrong with your internal organs." I knew this to be untrue, because my chiro actually does help me every time I see him. Anyway, the doc came back with a different attitude. He stuck his head in and said, "Uh, uh, it must be muscle pain. I'll send the nurse back here with a prescription." Ah-ha! Then, I saw my x-rays on the way out of the room and wouldn't you know it, my severe scoliosis wasn't so severe! The chiro is no quack. ---I think I've started ranting. Sorry!---

As I mentioned before, I'm completely consumed with my obsession to figure ME out. I have a little boy and a great husband, but the stress on our family is ruining everything.

[maile]

Hi Sleepymommy and welcome to the forum, your journey certainly has been a tough one!

there are a few people with narcolepsy that is affected by gluten on this forum, caek-is-a-lie is one and she has a thread about it Here