Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Invisible Disease: You Look Healthy

1desperateladysaved

Recommended Posts

1desperateladysaved Proficient
1desperateladysaved
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

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.

shadowicewolf Proficient
shadowicewolf
Posted

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

karoyse Newbie
karoyse
Posted

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

1desperateladysaved Proficient
1desperateladysaved
Posted
  • Author

:(

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.

1desperateladysaved Proficient
1desperateladysaved
Posted
  • Author

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.

karoyse Newbie
karoyse
Posted

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


1desperateladysaved Proficient
1desperateladysaved
Posted
  • Author

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

karoyse Newbie
karoyse
Posted

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

megsybeth Enthusiast
megsybeth
Posted

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!

1desperateladysaved Proficient
1desperateladysaved
Posted
  • Author

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.

  • 4 weeks later...
Sillyred Newbie
Sillyred
Posted

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!

1desperateladysaved Proficient
1desperateladysaved
Posted
  • Author

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.

frieze Community Regular
frieze
Posted

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"?

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Ginger38
      - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      4

      Shingles - Could It Be Related to Gluten/ Celiac

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away
    2. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      18

      My only proof

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of...
    3. Ginger38
      - Ginger38 replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this. He couldn’t guarantee me a negative biopsy meant ...
    4. Scott Adams
      - Scott Adams replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Challenges eating gluten before biopsy

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until...
    5. Scott Adams
      - Scott Adams replied to emzie's topic in Related Issues & Disorders
      2

      Stomach hurts with movement

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,472
    • Most Online (within 30 mins)
      7,748
    731049
    Newest Member
    731049
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      It has been the most terrible illness ever! Going on 3 weeks now… I had chicken pox as a kid… crazy how much havoc this dormant virus has caused after being reactivated! No idea what even caused it to fire back up. I’m scared this pain and sensitivity is just never going to improve or go away 
    • Mari
      My only proof

      By Mari · Posted

      OKJmartes. Skin and eyes. Also anxiety and frustration. I have read that Celiacs have more skin problems than people who do not have Celiacs. I take increased levels of Vit. D3, very high levels of B12 and an eating part of an avocado every day. KnittyKitty and others here can add what they take for skin health. A Dermatologist might identify the type of skin condition. By eyes you may mean eyesight problems not just irritated, red eyes. It is not very difficult to get a diagnosis of which eye condition is affecting your vision but much more difficult to find an effective remedy. The ophthalmologists I have seen have been only a little helpful. There seems to have been some advances in eye treatments that most of them are completely ignorant of or just won't add to their treatment plans.  Forcertain you may as well buy some remedy from a facebook ad but that is obviously risky and may actually damafe your eyes. However it is known that certain supplements , taken at the effectivelevels do help with eyesight. Two of them are Luten and zanthamin (spelling?)and certain anti-oxidants such as bilberry..    Hope this helps.
    • Ginger38
      Challenges eating gluten before biopsy

      By Ginger38 · Posted

      I refused to do the gluten challenge for a long time because I knew how sick I would be: I have always had and still have positive antibodies and have so many symptoms my  GI was 💯 sure I would have a positive biopsy. I didn’t want to make myself sick to get a negative biopsy and be more confused by all this.  He couldn’t guarantee me a negative biopsy meant no celiac bc there may not be damage yet or it’s possible to miss biopsies where there’s damage but he was so sure and convinced me I needed that biopsy I went back on gluten. It was a terrible experience! I took pictures of the bloating and swelling and weight gain during the challenge. I gained 9 pounds, looked pregnant, was in pain , couldn’t work or function without long naps and the brain fog was debilitating. And in the end he didn’t get a positive biopsy… so I wish I had never wasted my time or health going through it. I haven’t been truly straightened  out since and I am currently battling a shingles infection at 43 and I can’t help but wonder if the stress I put my body under to try and get an official diagnosis has caused all this. Best of luck to you - whatever you decide. It’s not a fun thing to go through and I still don’t have the answers I was looking for 
    • Scott Adams
      Challenges eating gluten before biopsy

      By Scott Adams · Posted

      It's completely understandable to struggle with the gluten challenge, especially when it impacts your health and studies so significantly. Your experience of feeling dramatically better without gluten is a powerful clue, whether it points to celiac disease or non-celiac gluten sensitivity. It's very wise of you and your doctor to pause the challenge until your holidays, prioritizing your immediate well-being and exams. To answer your questions, yes, it is possible for blood tests to be negative initially and become positive later as the disease progresses, which is why the biopsy remains the gold standard. Many, many people find the gluten challenge incredibly difficult due to the return of debilitating symptoms, so you are certainly not alone in that struggle. Wishing you the best for your exams and for obtaining clearer answers when you're able to proceed.
    • Scott Adams
      Stomach hurts with movement

      By Scott Adams · Posted

      It's smart that you're seeing the gastroenterologist tomorrow. While it's possible this is a severe and persistent inflammatory reaction to gluten, the fact that the pain is movement-dependent and localized with tenderness is important for your specialist to hear. It could indeed be significant inflammation, but it's also worth ruling out other overlapping issues that can affect those with celiac disease. Is it possible you got some gluten in your diet somehow? This could be a possible trigger. Hopefully, tomorrow's appointment will provide clearer answers and a path to relief so you can get back to your lectures and enjoy your weekend. Wishing you all the best for the consultation.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.