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Family: "what Health Problem."
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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?

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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.

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

((Hug))

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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.

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

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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.

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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!!

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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.  

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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.

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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