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Spent The Morning In The Er!

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Posted 18 December 2004 - 02:05 PM

I spent half a day in the ER today hooked up to an IV getting fluids. I haven't been feeling right lately and a lot of other food intolerances have been making me really sick. I have felt myself getting weaker and weaker the past few days with more and more muscle pain and less sleeping at night. I've been waking up in a sweat with a rapid heart rate and the feeling that my legs would not hold me up. Needless to say, the muscle pain and fatigue has been debilitating and my body has been feeling malnourished. I have been ravenous and actually been eating very well these past 2 days with no diarhea or food reactions. I have been watching what I eat very closely but just eating more of the foods that are ok. I will say that my meals these past 2 days have been well rounded.
I felt like something was really wrong and thought I would pass out. My husband took me to the ER and of course they are clueless to gluten issues. They ran simple blood tests that of course were normal and gave me an IV in case I was dehydrated.
I'm home now not really feeling any better and just craving more and more food. Dinner is in the oven as we speak.
The dr who diagnosed the gluten intolerance is from out of this state and I spoke with him about a week ago. He mailed me some precriptions for specific blood work to be done. I had complained to him that I was feeling weaker and achy about that time. I have planned to do that blood work on monday. For insurance reasons they could not draw those bloods today. The tests that he wants me to have done are to check for nutrional and vitamin deficiencies as well as thyroid function. I will have to call him monday and inform him of today's scenario.
this is a very scary feeling...light headed and extremely weak. the hospital dr said it is probably chronic fatigue. Oh well........I've been told I have that but this feels different. I feel so exhausted and malnourished! The gluten dr siad that it's possible that I am not absorbing enough. Has anyone else had this problem or felt this way? and what did you do?
I actually came home for the hospital and had my hubby give me a B-12 injection.
Not sure if it will help but don't think it will hurt.
I'm praying that tomorrow will be a better day.
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10 years of abdominal problems, incorrectly diagnosed with Endometriosis / suffered 7 surgeries. Total hysterectomy 2 years ago!
Fibromyalgia, Chronic Fatigue, Interstitial Cystitis ,IBS, Migraines, Primary Immune Deficiency to name a few. Finally realizing that food intolerances make them all worse!

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#2 darlindeb25


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Posted 18 December 2004 - 02:22 PM

:( sorry to hear this mel--hope you start feeling better soon--i do believe you are on the right track, its just your body is in such bad shape that it will take a while to get it back to feeling better--i think you will see improvement soon--feel better sweetie :) deb
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Posted 18 December 2004 - 06:58 PM


Are you sure that your not getting gluten from a hidden source?
I ended up in the ER because of a medication that contained
wheat starch. I also had a rapid heartbeat and felt light-headed.
Be sure to check your meds, lotions, shampoo, etc. Hope you
feel better soon..
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The one resolution, which was in my mind long before it took the form of a resolution, is the key-note of my life. It is this,always to regard as mere impertinences of fate the handicaps which were placed on my life almost at the beginning. I resolved that they should not crush or dwarf my soul, but rather be made to blossom, like Aaron's rod, with flowers-Helen Keller

Judy- Gluten Intolerant



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Posted 18 December 2004 - 09:44 PM

Mela, I hope you are doing better now. That sounds rough. Make sure they check if you have some anemia causing problems, and monitor your blood sugar levels. Certainly low blood sugar can hit you that way, and anemia too. If its low blood sugar keep your protien high and eat small meals 5 times a day.(those are the only two things I can personally suggest from experience). Could you have eaten food with a lot of MSG? Just remember that even though it seems like an unbelievable mystery of what is causing this,there is a cause and it can be found. Make sure to keep a full food diary to try to help track that side of it. Good luck tomorrow. Dreamhouses
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Posted 19 December 2004 - 05:12 AM

Thanks for all the well wishes.
I do keep a food diary and have not had any gluten, soy, dairy, eggs or medications...definately no msg.. I felt as thougth my entire body was going to collpapse; dizzy, weak, uncoordinated, knees buckling and the worst aching muscles! i couldn't even get out of bed. this happened to me a year ago and I went to my dr who threw his hand up and said I don't know what to tell you. that was it. Gluten issues were never discussed with me even with me telling him of ALL my GI symptoms with diahrea.
Anway, while I was in the hospital I thought of a friend of mine who has Crohn's disease and had an experiece with the same crippling problem. he went to the ER a few times and they did not help. Finally, he went to the ER and said he was not leaving until they found out why he felt as though he were ging to pass out. They admitted him and ram more extensive tests and sure enough he was not absoribng B-12. He now takes the B-12 regularly or when he starts to feel a little weak and catches it before it gets that bad.
So, I thought maybe that was happening to me and that these drs are just clueless or because of ins reasons don't run certain tests. They already told me yesterday that they would only run tests in the ER that would bring them results back right away. Anything that needed a longer turn around time could not be done. Of course they were not going to admit me.
I came home and dug into my fridge and found a bottle of liquid B-12 from a year ago and made my husband give it to me(injection) . Afterwards, we saw that it was recently expired....that's how long it's been in the fridge but figured it couldn't hurt anyway. By evening I thought I was little better but the heart palpatations were still there. I had to take an inderal and ativan to get some rest. I can honestly say that this morning I feel better. I have less muscle pain and feel stronger. I don't feel that I am going to collapse. I had my husband give me another injection this morning and then tomorrow will call my dr in NJ and let him know what happened.
I looked up what the spcific blood tests were that he had written on the precription for me to have done tomorrow and it seems that he put some sort of screening for b-12 deficiency. Maybe when I gave him the syptoms he was thinking along those lines.
if this is it then I can't tell you how relieved and upset I am at the same time. I've had so many other incidents like this and no one took an interest in finding out what the heck was going on. My explanations of what I was feeling were always the same.
The B-12 vial was given to me by an old dr about 2 years ago just for the sake of having it to help build me up. The indications for it's use were never clearly stated to me and then again the Gliadin issue was never discussed. By the way, this is the same dr that ran the test for Gliadin AB....got the results (strong positive) and then never gave them to me. hhhmmmmmm
This new dr that is helping me now is very expensive and does not take insurance. I flew from Florida to NJ about 6 weeks ago to see him and it was the best money I ever spent! I feel that I am on the right track now.
i will have to call him tomorrow and let him know that I did these injections and that the blood test I take tomorrow will be reflective of that.
The bottom line.....follow your heart. I knew something was wrong....and I even told the ER dr...maye I am not explaining myself well enough but...."I feel crippled".."I feel that I am going to collapse"..."My legs won't hold me up"..."I feel malnoursihsed"....etc. just a few of the very accurate ways I articulated to him what I was feeling....so much for ER drs! In the end we have to be our own drs!
Hopefully this second shot will continue to give me strength. Let's see what happends!
Thanks again,
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10 years of abdominal problems, incorrectly diagnosed with Endometriosis / suffered 7 surgeries. Total hysterectomy 2 years ago!
Fibromyalgia, Chronic Fatigue, Interstitial Cystitis ,IBS, Migraines, Primary Immune Deficiency to name a few. Finally realizing that food intolerances make them all worse!



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Posted 19 December 2004 - 05:50 AM

Hi Mela, I'm only adding this because you said you have a doctor that is very responsive to you AND because what you're describing seems to be similar to what my father experienced many times at hospitals. It was so frustrating and heartbreaking! Anyway, here's a quote from an article written by M Hadjivassiliou, R A Grünewald and G A B Davies-Jones; Department of Neurology, The Royal Hallamshire Hospital, Glossop Road, Sheffield, S10 2JF, UK. The link for the entire article is: http://jnnp.bmjjourn...t/full/72/5/560 I was thinking you could ask your doctor to check for anti-Purkinje cell antibodies, though I've NO idea how this would be possible (they discovered them in my father after he died.) My father didn't start out with gluten ataxia, he started out with episodes that drove him to the emergency room similar to how you described.

We have also found antibodies against Purkinje cells in patients with gluten ataxia. Our research suggests that IgG antigliadin antibodies cross react with epitopes on Purkinje cells from human cerebellum.27 Characterisation of the anti-Purkinje cell antibodies by immunoblotting may provide a useful marker for the diagnosis of gluten ataxia in a manner analogous to the use of antiendomysium antibodies as a marker for coeliac disease or the anti-Yo antibody in paraneoplastic cerebellar degeneration.

Please take care!
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Posted 01 March 2005 - 02:12 PM

Hello, I have been that weak as well. I had no iron in my blood.You need to get your iron and ferratin checked thruogh blood. I have to have iron infusions. That help tremendously. It takes a week or so to feel it though. Please ask the dr to check your blood. Hope this helps. feel better soon

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Posted 01 March 2005 - 07:39 PM

I've been getting B12 shots for the last two months and they help a lot. I highly reccomend them.

Hang in there.

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Posted 04 March 2005 - 10:11 PM

Your symptoms sound similar to mine when I first started showing celiac symptoms - the ER, docs going "huh?", and so on. It went on for months. Finally I found an amazing traditional chinese doctor who restored my health partway, and I was able to semi-function in the world. 12 years later I was diagnosed celiac.

There have been some good suggestions from other folks. If you've been celiac for a long time, I'd like to throw out one more - which is anxiety and anxiety attacks, caused by damage to the central nervous system and sometimes triggered (and sometimes not) by gluten exposure.

Gluten can be in places as hidden as drywall and joint compound, which are major pollutants in the air (and inhaled and ingested consequently) if there is even minor construction in your house/apartment. Gluten can be in brown rice syrup (you have to call the food manufacturer to find out) and in many other things that are not obvious.

Take a good look at your kitchen appliances - someone mentioned pots and pans - also look at your microwave - it may be time to get a second one. If your dh cooks gluten, airborne particles could be an issue. I got a very very mild gluten reaction this week from a thorough cleaning of the kitchen cabinets which had some old wheat flour and dust on the top shelf.

Possibly consider going to a nutritionist. I got some digestive enzymes (all natural, food based ones) and they have made a world of difference in my digestion. She also offers ones especially to aid pancreatic function. She had to look through her products carefully, as many of them contained gluten.

Best of luck,
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