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Invisible Disease: You Look Healthy


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13 replies to this topic

#1 1desperateladysaved

 
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Posted 22 October 2012 - 04:17 AM

I nearly died five years ago. Meanwhile I was trying to act normal. I tried to do my responsibilities. I dragged my feet through every day. One time I said, "I feel like I am drowning, but you are telling me to ignore the waves." I couldn't do that. I got no extra rest, no hospital stays, and no flowers. Wow! That was hard.

Family members discussed my bizarre behaviours, or thought perhaps I was angry with them. But I just couldn't see through the fog. They couldn't see the fog or fatigue. "You look good."

If my friends or family are suffering like this, I sure hope I will be able to do something for them.
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#2 ravenwoodglass

 
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Posted 22 October 2012 - 04:30 AM

I think many of us can identify with what you are saying. We fight so hard to take care of our families and ourselves through all the pain. Doctors tell us we are 'just depressed' (who wouldn't be in constant pain), your job is too stressful (of course it is I have to run to the bathroom wondering if I will make it all day long) and the real kicker 'you just want to be sick' (yea right!!!)
What was worse for me was the last 5 years when my health issues became obvious to all around me and the doctors still couldn't figure out what was going on. The most heartbreaking was the morning when after my usual 2 to 3 hours of agony in the middle of night my DD met me coming out of the bathroom. She had tears in her eyes and told me the family would understand if I committed suicide.
Then you finally get diagnosed and everyone expects you to be able to go back to a 'normal' life despite the fact that you still have problems they can't see.
I do hope someday stories like ours will be fewer and far between because people are getting diagnosed without the years and years of suffering that so many on this board have gone through.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 shadowicewolf

 
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Posted 22 October 2012 - 04:52 AM

People do not understand what they cannot see, thus to them you may look fine, but you are not.
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#4 karoyse

 
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Posted 22 October 2012 - 05:36 AM

I know exactly what you mean. I just got DX but for the last two years i have felt like the walking dead and most people just don't understand it isn't by choice that I feel this way.
I feel bad when I am in so much pain I can't get down on the floor and play with my grandkids. My husband was really getting mad at me until I got DX with Celiac's but now I think he starting to try and understand. He has just retired and is full of energy and life. He wants to go out danceing like we used to but I just am not up to it. I was always very active until this.
I am a Custodian at an elementary school with 500 kids. Its a hard job even when you feel good. It's all I can do somedays to just get my job done. I keep wondering how much longer I will be able to work.I know people are wondering why I am not the same person I used to be.
I am praying going gluten free will help. Since people can't see what is happening to us they just don't understand. Until I found out about Celiac's I really wondered what was happening to me and I had heard about Celiac's before this. Why isn't there more awareness?? I had heard on people not eating gluten but really didn't understand why. Now I do !!
Hope for better health
Kim
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#5 1desperateladysaved

 
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Posted 22 October 2012 - 06:28 AM

:(

I think many of us can identify with what you are saying. We fight so hard to take care of our families and ourselves through all the pain. Doctors tell us we are 'just depressed' (who wouldn't be in constant pain), your job is too stressful (of course it is I have to run to the bathroom wondering if I will make it all day long) and the real kicker 'you just want to be sick' (yea right!!!)
What was worse for me was the last 5 years when my health issues became obvious to all around me and the doctors still couldn't figure out what was going on. The most heartbreaking was the morning when after my usual 2 to 3 hours of agony in the middle of night my DD met me coming out of the bathroom. She had tears in her eyes and told me the family would understand if I committed suicide.
Then you finally get diagnosed and everyone expects you to be able to go back to a 'normal' life despite the fact that you still have problems they can't see.
I do hope someday stories like ours will be fewer and far between because people are getting diagnosed without the years and years of suffering that so many on this board have gone through.

:( Yeah, for sure there is hope for others. :( There is hope for us too, so hang on.
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#6 1desperateladysaved

 
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Posted 22 October 2012 - 06:32 AM

I know exactly what you mean. I just got DX but for the last two years i have felt like the walking dead and most people just don't understand it isn't by choice that I feel this way.
I feel bad when I am in so much pain I can't get down on the floor and play with my grandkids. My husband was really getting mad at me until I got DX with Celiac's but now I think he starting to try and understand. He has just retired and is full of energy and life. He wants to go out danceing like we used to but I just am not up to it. I was always very active until this.
I am a Custodian at an elementary school with 500 kids. Its a hard job even when you feel good. It's all I can do somedays to just get my job done. I keep wondering how much longer I will be able to work.I know people are wondering why I am not the same person I used to be.
I am praying going gluten free will help. Since people can't see what is happening to us they just don't understand. Until I found out about Celiac's I really wondered what was happening to me and I had heard about Celiac's before this. Why isn't there more awareness?? I had heard on people not eating gluten but really didn't understand why. Now I do !!
Hope for better health
Kim


Thanks, and I hope you will have the energy you need. How long have you been gluten free? I think we better be able to tell the next guy about celiac. Their loved ones, or they themselves may be suffering.
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#7 karoyse

 
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Posted 22 October 2012 - 07:40 AM

Thanks, and I hope you will have the energy you need. How long have you been gluten free? I think we better be able to tell the next guy about celiac. Their loved ones, or they themselves may be suffering.

Hi, I just got DX on Oct 1st and have been trying to be gluten free. it is so over whelming trying to figure out what you can eat. Going out to eat is nightmare. Just having the energy to get my kitchen gluten free and keep things away from the things that aren't is just too much at times. Not to mention the cost of the food you have to use for baking. Plus trying to make family and friends understand why you have to be so careful.
Sorry I needed to vent. At least here I know you understand.
Thanks
I am just looking for the light at the end of this tunnel.:)
Kim
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#8 1desperateladysaved

 
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Posted 22 October 2012 - 11:16 AM

Hi, I just got DX on Oct 1st and have been trying to be gluten free. it is so over whelming trying to figure out what you can eat. Going out to eat is nightmare. Just having the energy to get my kitchen gluten free and keep things away from the things that aren't is just too much at times. Not to mention the cost of the food you have to use for baking. Plus trying to make family and friends understand why you have to be so careful.
Sorry I needed to vent. At least here I know you understand.
Thanks
I am just looking for the light at the end of this tunnel.:)
Kim


Yeah, you really are new, but I was there 5 months back. You need some down time, but the bottom line is that you might not get it. Do your best and know that the body was made to recover.

Honestly, I haven't cleaned my whole kitchen yet, but gluten flour isn't used in it anymore. I would have liked for it to have a thorough cleaning, but atleast it has been cleaned several times. I don't order any bags of grain anymore and we ran out. I might still have a box of "gluten" in my pantry. I don't own a toaster and my plates and tools are mostly stainless steel. But I know better then to grab down my box of cookbooks or even look through them. Maybe next time I am really up I will dun my mask and gloves and get it all done.

None of you want to buy my cookbooks, nor would I sell them to you. Let's just say I really enjoyed my gluten and the splotches on the book reflect it.

I hope you don't have 30 years of symptoms behind you, just 2? I don't want anyone to go through 2 years of it, though. Gasp, okay, I just read your story in your other post. Regards, it sounds like you are in my boat. However, I don't really have much pain like you. I am numb, but that is part of the reason I didn't get diagnosed.

Diana
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#9 karoyse

 
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Posted 22 October 2012 - 12:10 PM

Diana
Yes the last two years have been the worst but I think I might have had it longer but because all the other medical issues I thought were the reason I felt so bad.
Now I am dealing with the meds and Doctor trying to see what kind of reflux meds I can take. The Dr called in a new one and now my insurance won't pay for it. I don't really want to take any but the Dr said with Barretts that could lead to cancer if I don't get the acids under control. Sometimes I feel like banging my head against a wall. Nothing is simple anymore.
Sorry I am done whinning now.
Have you been getting better since going gluten free? I have been reading so much trying to find if everything I eat or touch has gluten in that my eyes are crossed. I hope I can get to the point I can relax and enjoy eating again. Also just trying to find my way around these forums. I am not the best at computers.This brain is on over load.:)
Take care and Thanks
To better health
Kim

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#10 megsybeth

 
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Posted 22 October 2012 - 02:35 PM

I've only been diagnosed for two weeks but I think I've had the disease for almost thirty years (that's when I had mono and constant throat infections at six, then migraines, "psychosomatic" stomach pain and vomitting, late menstruation....). I'm a naturally open person so everyone around me knows that I'm diagnosed with celiac but I find this brings up some very frustrating comments. Some people even ask me how my "diet" is going. My first born son has severely delayed growth, speech and motor delays and low tone that started at about two months. In all likelihood this is because he is a celiac like me and responded to the antibodies in my breast milk and then in the wheat I gave him for years.

The bottom line is I may have inadvertently starved both my boys in utero, and myself, and then starved my older boy for four years without knowing it. Ya know, bikini season isn't really the biggest thing I'm dealing with!
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#11 1desperateladysaved

 
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Posted 28 October 2012 - 02:02 PM

Okay, this did get sad. Okay, it is really sad. All we can do is pick up the pieces and go on. Now we know what we can do. Now we can do something. I have promises that the Lord can restore the years the locusts have eaten. Sometimes that is the only thing that keeps me going. I do hope everyone who has suffered like this will have that promise for themself.

We can't know in the past what we know now. If we had known... we would have done what he have now done. All we can do is do the best we can now.

I didn't know I had celiac all those years, but the miracle is that it was revealed now and I can do something about it.
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#12 Sillyred

 
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Posted 20 November 2012 - 09:25 PM

Can't help but cry when I read this tread. I want to take away all your pain. My husband and I were just discussing this very thing. Why do people tell you you look good.?! Especially when you feel like crap! The first doctor DH saw told him that. Needless to say, we changed docs!

I wish you all well!
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#13 1desperateladysaved

 
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Posted 21 November 2012 - 05:20 AM

I can't say that I would want to be told I look awful, or could I?

I hope to send flowers to anyone in this spot.
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#14 frieze

 
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Posted 21 November 2012 - 06:34 AM

I can't say that I would want to be told I look awful, or could I?

I hope to send flowers to anyone in this spot.

I think the "you look good" is interpreted by the patient as a denial of ill health.....maybe turn it back on the doc and say "only on the outside"?
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