Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Invisible Disease: You Look Healthy
0

14 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

1

Share this post


Link to post
Share on other sites

:(

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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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"?
0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,651
    • Total Posts
      921,611
  • Topics

  • Posts

    • How about reaching out to your local celiac disease support group? http://www.houstonceliacs.org
    • Yes, I am in Houston, TX. Can anyone recommend a good GI in Houston, lots of experience with celiac?  
    • I am sorry to hear about your mother.   It is not so hard to get a medical doctor to order a celiac panel -- especially if your father was diagnosed with celiac disease.  Our family GP did not blink an eye when I first asked my daughter to be tested.    If you think your doctor will disregard your legitimate request, you can either fire him or put the request in writing and send it certified (attorneys love documentation!)  I agree that our doctors should support us.  I have a great GI, but my GP  is pretty clueless when it comes to celiac disease, but she admits it.    She does always order all the lab tests I request.  Perhaps it is because I come in with supporting medical documentation and evidence.  If she was not supportive to my satisfaction, I would find a new doctor.   Again, you can go gluten free in your own.   Chance are you have celiac disease.    But it is hard.  Really hard if you do not have the support of your family.  That is my concern.   Are you in the US?  
    • I've just read SO MUCH about the long, arduous process of getting a positive diagnosis through traditional medicine - I'm not sure I want to put myself through all that. Since my father WAS positively diagnosed - I carry the celiac gene and another gene that predisposes me to gluten sensitivity - and my fecal tests for gliadin were SO elevated - there are enough reasons for me to go to a gluten free diet. The true medical diagnosis would just make it easier for my family/friends to believe the necessity of it. My children are adults and not particularly health care nuts. I doubt they would take their own risk seriously without a medical diagnosis. I'm afraid my husband, while he is trying to be supportive at this point, will grow weary of all the things I no longer serve at meals and all the places we will no longer go to because there are not gluten free alternatives on the menu. A medical diagnosis would make it easier for him, long term, I think.  I don't have much faith in general in our western health care system. My mother died 6 months ago at age 82 after 4-5 years of many different health issues. She had given up the keys to her car in her late 70's after getting lost several times. I became her designated driver to all doctor appointments, procedures, hospital stays, etc. The incompetence and disregard I saw blew me away. I'm surprised any elderly people survive our health care system once they get on that revolving door. The reason I started seeing a naturopath is that I am looking for an alternative to medical doctors for most of my health issues as I age. I know there are some things I still have to see them for - and of course, they are essential in trauma and emergency situations. But I am on a quest to follow a more holistic approach to my health care. If this is the path I am choosing, then I have to follow my gut (no pun intended) in situations like this. I think the only reason I would go through the medical testing would be for other people - not me. It seems to me, that with so many people being gluten intolerant these days, a decent M.D. would listen to a patient that was adamant about their intent to live gluten free - positive celiac diagnosis or not (and especially with the gene and stool test results). I mean, they don't tell vegetarians they have to eat meat ... and vegetarianism is a personal choice. Sorry if I seem to be rambling ... this is all so new, and I'm trying to find my way.    
    • This subject is often raised on this site, especially by women.  I am prompted to raise it again today, having spoken to my doctor who has said that she has noticed that celiacs often have thin hair, especially in later years.   Rather than just accept what she thinks is just the inevitable I would really like to hear from anyone who really has seen great improvement in their own hair and what they did. There are lots of tips on line but I am particularly interested in hearing from someone who has actually been there, done that, and now has better hair!  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,653
    • Most Online
      3,093

    Newest Member
    KerryO
    Joined