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

Family: "what Health Problem."
0

9 posts in this topic

I had 30+ years of celiac disease symptoms.  My symptoms are mostly neurological.  Namely brain fog, fatigue, and numbness.

 

Now, I have been gluten free for 10 months.  My family is complying with most of my pleas for my diet to be right.  They have seen me eat in the car when they go to restaurants.  I have brought my own food when going to relatives. I am taking many supplements daily.   IS this just for fun?

 

Yesterday, my husband came up with the idea of having a prayer meeting for someone's health in our family.  None of my children 8-20 knew who in the family we would pray for.  They didn't see us having any problem so severe as to require one.  We had just attended a prayer meeting for someone with an Auto-Immune disease.  Now, that is severe enough to warrant it.

 

 

We have experienced this denial for quite a while.  My doctor wrote a letter to my family last summer.  She said that I had an illness (5 years back) that was severe enough to cause death or severe disability.  She also stated that I had been making progress, but still had a ways to go. 

 

All of the while (and still) my family doesn't know?!  I have a great family; I don't know how I got them.  But I just can't understand how come my severe illness is not acknowledged.  Do I hide it that well? Or do I just look like a complete jerk?

0

Share this post


Link to post
Share on other sites


Ads by Google:

Because people have the inability to see it. It is not like, say, loosing a limb. They can see that. Something like celiac disease doesn't fall into it. They just do not see it regardless of how cruddy you are feeling.

0

Share this post


Link to post
Share on other sites

You probably do hide it well. Most of my family had no clue that I had it...hang in there.

((Hug))

0

Share this post


Link to post
Share on other sites

Since it's not something they can "see", most people just don't get it. It's along the same lines as PTSD or any other mental illness. If a person isn't "visibly" ill, like coughing, bleeding, or anything like that, people just assume that it's not that big of a deal. Most people lack the ability to empathize already, but when it comes to something they don't even understand or see, it's even worse. I have been accused of over exaggerating my Celiac and my pituitary tumor. It sucks, but unfortunately that's  how most people work. They are even worse when they have never been ill themselves, so they don't understand the daily struggle of someone who is ill.

0

Share this post


Link to post
Share on other sites

Did you tell them that celiac disease IS an auto-immune disease?

0

Share this post


Link to post
Share on other sites




Did you tell them that celiac disease IS an auto-immune disease?

Yes, that is exactly what I said before I was shusshed.  We do have younger children that we do not want to upset.

0

Share this post


Link to post
Share on other sites

i think that we do hide it so well, we don't look sick.  i was glutened recently and it takes TWO WEEKS to recover from a hit for me.  after about 3 or 4 days, everybody forgets that my body is still so sore and sick and out of whack.  "what's the matter?  why are you so tired?  why don't you eat ______??  it's gluten-free.... "  PEOPLE.  IT TAKES TWO WEEKS FOR ME TO RECOVER.  seriously, i should wear a countdown clock on my head or something.  and i hate to keep saying, "remember TEN DAYS AGO when i told you i got gluten.  well, it's the gift that keeps on-a-giving  :(  even if *you* forgot about it, doesn't make me 'better' any faster.  

 

honestly, repeating myself about stupid gluten makes me feel/sound like a hypochondriac sometimes.  but here it is, day 15, and i am out of bed, dishes done, laundry put away, etc.  what a difference from even 2 days ago.  i am loading up on protein today, can't get enough of it :)  today.

 

don't feel alone, ((hugs)), and thank you GOD for this forum.  y'all have a blessed day!!

1

Share this post


Link to post
Share on other sites

Yes, that is exactly what I said before I was shusshed.  We do have younger children that we do not want to upset.

i call b.s. - my grandbabies all know meemo has celiac disease and has to eat gluten-free.  even when they pretend to cook with their play dishes, they make mine gluten-free.  ("don't worry, meemo, it's not on regular (pretend) bread - we make your samwiches from your freezer bread") and they are FOUR. they could care less about auto-immune and they pray for me anyway.  i never lied to my children about something like that - how will they ever learn coping skills?  eventually they have to go out into the harsh world.  i would rather have them learn things like that at home.  

1

Share this post


Link to post
Share on other sites

i call b.s. - my grandbabies all know meemo has celiac disease and has to eat gluten-free.  even when they pretend to cook with their play dishes, they make mine gluten-free.  ("don't worry, meemo, it's not on regular (pretend) bread - we make your samwiches from your freezer bread") and they are FOUR. they could care less about auto-immune and they pray for me anyway.  i never lied to my children about something like that - how will they ever learn coping skills?  eventually they have to go out into the harsh world.  i would rather have them learn things like that at home.  

Oh, the friend we were praying for has been in the spot of obvious coming death and did end up with what is thought to be permanent impairment.  His kidneys fail.  I have problems, but so far I can go on.  The children may have been confused if I kept up my comparison.  I am sure the older ones did catch it. 

 

I wasn't shusshed for what I said, but for what I might say next.

 

I wouldn't advocate lying either, they know I have celiac and the little ones are great helpers for me.  Yes, I have had pretend hamburgers on lettuce!  But they don't need to know yet, if the situation might not come to the resolution we desire:   Namely Life and energy restored in this world.  There would perhaps be a time to explain that when and if the situation gets worse.  I am hoping I can serve (better than now) as I heal.

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
      104,352
    • Total Posts
      920,503
  • Topics

  • Posts

    • I already did. Thats how i found the place. Its amazing to actually go to a restraunt again.
    • This is EXACTLY what happens to me. It has twice now and both times was after both glutening episodes but once it was the day after and the other time it was a week and a half. So I'm still not sure if it's related or strange bug bites...

      Did they stop happening when she stopped being glutened? Did you decide they were definitely related? I'm really confused by this and would love to know whether to insecticide my house or....
    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,416
    • Most Online
      1,763

    Newest Member
    djs2117
    Joined