Adventures In Er Land.....after My C'mon Carrots? Post

[chgomom]

I spent 6.5 hrs in the ER.

Seasoned or not seasoned vets....I need your ear and support here! So chime in...

I started shaking....had palps...and my head was spinning.

EKG was beautiful, caridiac labs were rock solid, blood counts (like white, red, your standards) were normal,

So......I had a really, really good doc. Different one than last time.

He said, bad news....because its protocol with your age, I have to do a nuclear lung scan, its known as a VQ scan to check for PE. He said good news, I don't think thats it....but I have to prove it in your chart.

Your electrolytes are off I think, and I think thats celiac related. So we'll replace some of that.

We're going to draw some other more specific labs as well....liver function etc. Id there anything you want drawn while you're being stuck 900 times.

I laugh.

He leaves, fast forward 1 hr watching football, nurse 1 comes looks at me confused and says I know you! he's five right...honey, you're too young to be this sick, It has to be frustating (I'm 28) She was there to put in the IV bag on (it took that long because they had a trauma) she says I have some bad news (I hate when people say that because I think the worst) and she saw the blood drain from my face, no no...it's not bad news about you....but they lost all the lab work we drew before beause the person that took it did'nt label it.

OK, no problem, at this point, I was just even more exhausted.

They took that, and I said to her....can you sk the doc about vitamin levels. Nobody has ever bothered to do that. He came in and said, he could compromise on B levels, because thats the only thing he could justify with the symptomology, I said ok.

Fast forward to shaking again, they bring me juice, it helped a little. Then a gluten free meal in the ER.

Nurse 2 comes in and says, he don't I,,,? I said yes, this was a male nurse that has seen me almost everytime I have been there. He gets me ready for my scan and chest x ray.

Fast forward another 2 hrs or so....scan done, labs except for the b vitamins are back.

Eveything normal, liver enzymes slightly higher than the last time being the only exception.

Doc says...I hate to be the probably 100th person to say this, but I think its celiac doing its magic.

In my opinion, I think you have malabsorption, because of the nausea, and yellowish stool.....the B's aren't back but your doc will have those in a few days....everything else is normal, for you. So you can go home.

Now that visit probably will cost the insurance about 10,000 or more. Luckily its not out of my pocket.

I am really nauseated, depressed, sad, worried, and exasperated today. I feel like I want to throw up but I can't I am munching on cold chicken which I made yesterday with a grill I scrubbed early in the am with scalding hot water and soap. Sipping apple juice and taking very small sips of 7 up because I am worried about the gas.

You want to know what I am worried about. I will tell you. I have a 5 yr old son, in the living room, laughing and playing and I am here analyzing every gas pain....lamenting and then what my body wants to do is crawl back in bed and beg my fiance to clean the house, because I have had no energy to do so for the last week.

I'm worried about the following medical issues:

1) Celiac wrecking my body

2) That the kiwi fruit sized cyst on my left ovary is something really bad

3) That I am just going to break down emotionally over all of this

Thats my story....and yes, I know it all sounds like celiac....and all I can say is oh my God.

And on that note, I am going to church this morning to pray, whether its the 9:15 or 10:45 service.

[chgomom]

I have to add.....that much of what goes in, unless I chew it 200 times, or it can melt.

Does not change much on the way out now....

[chgomom]

So to make a long story short..........I need hugs and stories....and a new immune system and intestines *lol*

[jerseyangel]

So to make a long story short..........I need hugs and stories....and a new immune system and intestines *lol*

Aw--a big hug coming your way And if I only knew how to trade in the old immune system and intestine...

Anyway, how long have you been gluten-free? I should know, but I get mixed up sometimes So many new people!

[chgomom]

OK....my long story put very shortly.

I have been so sick since last November, then my father died and it was like my immune system dropped out from underneath of me....and all these weird gi symptoms came out. For years though tummy aches all the time and weird crap on my face, and elbows even my rear end. Doc said no correlation...you need to lose weight....and see a derm. I was hopitalized in January for dehydration as a result of severe D...they said it was all stress to my father passing away. I knwo depression and I know stress....that wasn't it, in my mind. So needless to say...doc says eat lean cuisines....and get more excercise...did just that and got sicker, and sicker...and had numerous er vists...all usually within 3 to 4 hrs of a meal....which they said was gerd or ibs. Still...I said nu uh....don't by it and started researching. I found celiac...and started for march...going gluten free. Still wasn't feeling well./..so I second guessed myself...and end of April....was in the er again...same as before. Doc said its gastritis....your stool sultures are normal...take some pepcid...lose weight...get more excercise. By May...very sick....tired..blurry vision...still its the fat girl...over reacting (just reading into the blow offs) so....I referred myself out to a Rheumatologist, who listenined to me for over an hr. He said...1st....you're not crazy....2nd...I don't think its ra or anything...but I will run every lab test I can think of (27 different ones and 14 vials.) he calls a week later...says everything is back and normal except one, so just hold tight. He calls the next day...says some good news...and some bad news....something called a Celiac panel came back off the charts...and your complement levels and crp levels are extremely high. I want you to see a GI doc at one of the univeristy hospitals down town....and also look into a dermatologist to get a biopsy of the lesions on your face to rule out discoid lupus....

So in June I started....july I was doing great except for some minor indigestion...nothing major. August...after vacation (the 23rd to be exact) gi doc says try adding some gluten....you're going to have to have a biopsy and you don't want to skew anything. 5 days into that I was in the Er...temp,,,papls....nausea..dehydration. Needless to say....doc says its the gluten...and oh by the way you have a kiwi sized cyst on your left ovary.

So now I am back gluten free.....and still feeling REALLLLLLLY rough. like the er visit last night....what the heck.

Aomeone just IM'd me...so I will post it....

6 mos ago...I was 318....now I am 252

[jerseyangel]

I will never understand why doctors still have people do that innane gluten challenge for a biopsy--when the blood test and the dietary response are highly positive

I had a lot of the same symptoms as you did--and my doctors said and did pretty much the same thing. It wasn't until I heard about gluten intolerance and saw a GI on my own and asked him, point blank, if I could have a problem with it that a doctor even mentioned Celiac.

It's not unusual at all to feel good at first on the diet, and then seem to backslide. Since you had to go on the challenge, that complicated things, in my opinion. Also, as we heal, a lot of us become more sensitive to smaller amounts of gluten.

Myself, I did very well on the gluten-free diet for a few months. Then, my symptoms started coming back--I felt as sick as I did before my diagnosis! The D, nausea, anxiety, that feeling of being poisoned--it was back despite the fact that I was totally gluten-free.

It turned out that I have other food intolerances--probably because of leaky gut--as I was undiagnosed for many years. Once I determined what foods were causing the symptoms and cut them out, I began feeling better again. I'm 14+ months into it, and feel good most days now. It took more than a year, though, to get to this point. And note, I still have bad days, I'm not completely "there" yet.

The foods that I'm intolerant to are corn, soy, coconut, legumes, dairy, tapioca, and grains.

Would it be possible for you to get back to basics for a while until you are feeling better? Stick to meats, chicken, fish, eggs, cooked veggies, fruit, pure water--just whole, natural foods.

Sorry about your ER experience If there's anything else I can do to help, feel free to PM me anytime

[chgomom]

You know....I can rationalize all the symptomology at this point. As I am sure we all do....o that ache and pain is this...that dizzy spell was this....ya know? I just....I can't explain it.....

I'm sitting here while my son is playing.l...want to go back to the ER and say listen guys...run all the dreaking labs.....and figure this dang thing out.

I called the medical group the other day....ebacuse my doc...at my follow up after the last visit said to me..."I THINK YOU HAVE A WHOLE LOTTA NOTHING GOING ON" I wanted to cry as I walked out of the office. Then I said...but doc...I know losing weight isn't bad because I was 318 before...but I am 252 now....

he says "yeah....you got a long way to go" I was just flabbergasted.

You know....as I am sure we all do.....we just know when something isn't right. And we know the situations where we're upset and over reacting to something....but I just feel off. Thats the only way to put it. Off like 3 days over the expiration date on milk,....you look at it and it doesn't smell bad....but boy...you're certain something is wrong with it.....because you catch a mildly metallic scent on it.

Ugggggggggghhhh......

I just want to crawl in bed.....propped up...and do NOTHING....sad.

[Nooner]

My heart goes out to you! I hope you are feeling better soon!

I agree with jerseyangel about the gluten-challenge - totally useless, and potentially dangerous. Good for you for going gluten-free again. And good for you for reporting that doctor who IMO should lose his license! I swear, just because they don't know what's going on doesn't give them the right to be so disrespectful and unprofessional! I hope you don't ever go back to him.

I'm sure that gluten-free is the right thing for you to do. You may want to consider that you have other intolerances, since many of us do! Like jerseyangel said, they may show up any time. I thought I was home free after giving up gluten, but I'm starting to feel cruddy again in the last 2 weeks. I'm thinking soy or dairy may be the culprits, but am just starting to eliminate them so I can test them.

Also, if you haven't thoroughly checked your kitchen for cross contamination, please consider doing so. You might still be getting gluten from foods you thought were safe, or from cutting boards, pans, utensils, etc. Just a thought.

I'm so sorry you are going through this. Hugs!!!

~Li

[CarlaB]

Sorry you're still doing so badly. Many of us need more than just going gluten-free in the beginning in order to get better. Some find they have other food sensitivities. Have you cut out dairy? For me, I react to casein in the same way as gluten. Most celiacs are at least lactose itolerant in the beginning.

I also found that my adrenals were fatigued from being so sick and under so much stress. Google adrenal fatigue and adrenal burnout. The suggestions they give are good for anyone who is tired much of the time and has had a lot of stress on the body. I've been following the recommendations for a month now and am functioning much closer to normal than I have been in a long time. If what you're reading about it sounds like it would help you, I recommend a book called Tired of Being Tired by Jesse Lynn Hanley, MD.

I have found that I just need to get lots of rest and eat simply and often. I basically only eat meat, veggies (some potatoes and some rice), and eggs. I cook my veggies so they are soft, easier to chew and that way I don't see them a second time if you know what I'm saying. I discovered that my house was still dirty when I felt good enough to do some cleaning, so don't worry about it! You need rest. Your body needs to heal. Your "job" right now is getting better, don't feel like you should be doing something else.

[ravenwoodglass]

I just want to crawl in bed.....propped up...and do NOTHING....sad.

Then that is what you should do. Is there anyone that could take your son and give you a break for today? You are recovering from a glutening and it takes a while. At least the doctor in the ER recognized it was celiac related and didn't just send you home with a shrug of his shoulders and tell you to get more fiber. I also don't undrstand the need of these GI guys to insist someone do a challenge who has had a clearly positive blood panel. I hope you feel better soon, don't beat yourself up over being sick, you didn't ask to be so. If you can get any help over the next day or so take advantage of it.

(((((((((HUGS))))))))))

[chgomom]

I was also kind of amazed.....the ER liason called and said...nothing major..we just want you to come in and pick up a copy of your labs so you can be armed with all the information you need. She said I can't give you specifics due to liability over the phone...so come in and get them....the B panels came back....

[CarlaB]

Keep us posted!!

[Judyin Philly]

I will never understand why doctors still have people do that innane gluten challenge for a biopsy--when the blood test and the dietary response are highly positive

Sorry about your ER experience If there's anything else I can do to help, feel free to PM me anytime

I so agree--your panel says celiac...what's left to figure out--i know your scared of the cysts too..one think at a time and don't forget to BREATHE SLOWLY AND BE GOOD TO YOURSELF.

I WAS OBESE AND FOUGHT IT ALL THE TIME AND ONLY AFTER THE CELIAC PANEL CAME BACK INCONCLUSIVE..NOT HIGH ENOUGH NUMBERS (YOURS WERE OFF THE CHART) I STARTED THE gluten-free THING 15 MONTHS AGO AND THE WEIGHT I FOUGHT ALL THOSE YEARS IS COMING OFF...

THIS DISEASE IS INCEDIOUS AND CAN SHOW UP WITH EACH OF US HAVING DIFFERENT SYMPTOMS BUT YOU SEEM SO CELIAC TO ME ESP WITH THE DERM PROBLEMS TOO.

HUGS AND LOVE AND PM ME TOO IF I CAN HELP.

SO I TAKE IT YOUR NOT gluten-free AND YOUR EATING GLUTEN TO DO THE CHALLENGE FOR THE BIOPSY..PLEASE THINK ABOUT THIS..

I believe your body is trying very hard to talk to you

hugs love and blessings

judy in philly

[chgomom]

No...I have been gluten free since the ER visit two weeks ago......it was only 4 or 5 days of a gluten challange that landed me there.

OK...sooooooooooooo

Went to the ER and met with the liason. The B's were not actually not back yet....and she apologized, she thought they were.

So she gave me the other labs.

And she kinda pulls me over, shes an rn..and says ok....in my opinion and the other nurse last night, you are teetering on the brink of a deficiency in 3 areas...so I was like..um...ok show me....

My calcium (normal range 8.4 to 10.2) is 8.5

My Magnesium (normal range 1.6 to 2.4) is 1.7

My potassium (normal range 3.5 to 5.0) is 3.6

Sodium (normal range 135 to 145) Mine is 144...which she said is probably from all the bouts of D and rapid weight loss...

Then my red cell count was high 4 to 5.4 is normal, mine was 5.53

And my hematocrit was at the very high end of normal....which she said can signal malabsorption....

[Rikki Tikki]

That just sounds awful. I remember I went to the doctor a few years ago and told him I had lost 10 pounds in the past 2 weeks, he said lot's of my patients wish they had that problem. I went back in another 2 weeks and said, I have lost another 10 pounds and am really scared. Only then did he take me seriously and sent me to an internist who did a blood test (several) anyway, he said the blood work tested positive for a rare disease named celiac, but I don't think it's that because it's so rare! So fast forward a few years and I started losing weight again, thought I was just stressed but went to a GI doctor who took blood did a biopsy and told me I had celiac and I would know more about it in a year that he ever would! My thoughts a couple of years later is that if a person does better off gluten, why eat it? I don't understand the need for a biopsy, if my doctor had told me about the positive blood work I wouldn't have continued to eat gluten just so he could get the "gold standard" positive biopsy

Sometimes I think that if so many people have it why aren't the diagnosed, it would sure make our lives much easier, finding food etc. Anyway in the past year both my mother and brother also tested positive. But most of this thing has been a nightmare, I just console myself that there are so many worse things that I could have wrong.

The flip side of this is last year I was so ill, down to 116 pounds and my doctor treated me like I was crazy. It is so frustrating! Either way people tend to view us either with an eating disorder or like we are just a little off.

As far as the cyst, I thought there was medication to make it go away? Can they take it out?

Cyber hugs to you and I hope you feel better soon.

[CarlaB]

I had a hair analysis and had a high sodium to potassium ratio. In the explanation it said that there are a couple causes for loss of potassium and retention of sodium (it's not always because of eating too much salt and not enough bananas!). One reason is constant inflammation, which celiac causes. The other is consumption of too much sugar and refined carbs. Since you're fixing the inflammation problem, I'd suggest cutting out the sugar and refined carbs until you're feeling much better.

It sounds like your trouble is coming from the celiac disease. Be sure you're getting lots of rest!

[RiceGuy]

I hate to be the probably 100th person to say this, but I think its celiac doing its magic. In my opinion, I think you have malabsorption, because of the nausea, and yellowish stool.....the B's aren't back but your doc will have those in a few days....everything else is normal, for you. So you can go home.

How in the world can the doc say this yet refuse to do a full analysis of vitamins/minerals so you can find out what your deficiencies are?!? I think doctors are so reliant on the treatment of symptoms with drugs, that they have little or no knowledge of the nutrients our bodies need to prevent such symptoms from occurring in the first place. By now they should know prevention is infinitely more valuable than treatment after the fact. But because there are no Celiac drugs they don't know what to do.

I have to add.....that much of what goes in, unless I chew it 200 times, or it can melt.

Does not change much on the way out now....

I cook my veggies so they are soft, easier to chew and that way I don't see them a second time if you know what I'm saying.

I suspect this is more common than is discussed here, for obvious reasons

Anyway, you said the hummus you had recently is a new brand, so this is a top suspect. It doesn't matter what is or isn't on the label. Stuff used only during processing isn't so likely to get listed. I think the advice of making your own hummus is a good one.

[chgomom]

Well.....I love hearing from everyone.

it reallyhelps...

One of the things I am doing is going to Wild Oats Supermarket/health Food Store...and getting a gluten free, vegitarian multi vitamin.....with B's....

[CarlaB]

Well.....I love hearing from everyone.

it reallyhelps...

One of the things I am doing is going to Wild Oats Supermarket/health Food Store...and getting a gluten free, vegitarian multi vitamin.....with B's....

I'd add to your list a sublingual B-12 and an extra jar of B-Complex. I take both (among other things) in addition to my multiple. Most of the Wild Oats brand have a label right on the jar that says gluten-free.

[RiceGuy]

Well I'm glad to see at least the liaison has some sense. Malabsorption is basically what so many Celiac symptoms stem from anyway. It should be a given, so the doc should have all the valid reasoning to order tests for it.

Glad also that you're going to get some supplements. Shouldn't hurt, and could be just what the doctor hasn't the brains to order!

[chgomom]

OK...I just had well cooked zuchini with grilled chicken and I am burping.

WHAT the heck!!

[CarlaB]

What did you cook it in? Did you use old wooden spoons? Old cookware that's cast iron or teflon? Did you eat slowly? Did you not drink with your meal?

It could just be that your stomach is so upset that you need to treat it like you've just had the flu. Maybe some chicken broth, bananas, rice, applesauce, etc. would be more soothing. When my stomach is upset, I find a big pot of homemade soup is more soothing than regular food.

[Guest nini]

sometimes I have to go back to plain rice, bananas and applesauce for a few days until my tummy and esophagus start feeling better...

[chgomom]

I micor'd the zuchini and foreman'd the chicken (both of which were organic....with no preservsatives, and during cooking no kind of seasoning, oil or anything

[CarlaB]

I've heard of Foremans but never have seen one, is there a possibility that it's contaminated? If not, I'd say you need to eat even simpler foods till you're feeling better.