Hi Everyone,

Just wondering if anyone else's family starting acting weird after diagnosis?

My daughter was diagnosed 1 1/2 years ago. She was 2 at the time, malnourished, vommiting etc. Once diagnosed I read every book on celiac that I could find. As soon as I started reading I thought I had it. Not the same symptoms as my daughter, but headaches, depression, rashes that never go away, hair falling out etc. Last summer I had the genetic test for my husband, my son and me. Well it turns out I am DQ2 and DQ8. In December I decided to try Entrolab after a negative blood tests. My results are posted below. My doctor had concerns about one number in the celiac panel so she referred me to a GI doctor. He decided to do a scope ( even though he didn't think I had it), sure enough, he was able to tell at the time of the scope and took several biopsies ,complete villi damage.

Anyway, all of a sudden my mother who couldn't call me enough, barely calls and I can tell my sister thinks I am out to lunch. I haven't talked alot to them about my symptoms and I haven't pushed the celiac on them. I can't believe that I feel more supported by friends then family. Why are they acting so strange. They seem to think I shouldn't have gotten the scope. Even with the doctor's results, they don't seem to take it seriously.

Any thoughts?

Natalie

Sorry to hear you are going through that. Glad to hear you got the scope done though Keep yourself and your family healthy and don't worry about the sister and mom issues.

As for family...it is impossible to understnad what they are thinking. Sometimes I think that they think Celiacs is contagious. Other times it seems like the parents feel guilty that they never knew or did more to see that their child was sick, and now as an adult you find out you have this disease and they think they are bad parents or something.

My family reacted similarly. Mine meant well, but they just don't get it. The fun part is they get VERY UPSET when you point out symptoms in family members alive or dead. Its kind of a "How dare you same that diseae came from my side of the family!" approach. The part that is hurtful is that my family probably would have reacted better if I announced I had some terrible disease or cancer (not making light of cancer). Even now, almost 4 years later, they still bring food into my house that is not allowed due to severe peanut/treenut allergies, I still have to get what food they have on them when they get off the plane and make them throw out the nuts and wash their hands and face. They never understand or ask questions about what I can or can't eat or why. It's like they are scared.

As for friends, sometimes friends make the best and most loving family any of us could ask for....

Try not to be too upset with your family, they will eventually come around and things will get back to normal, or you will know that your health and the health of your family is more important.

Thank you gfgypsyqueen,

I agree about the cancer comment. I said the same thing to my husband, I would get more support if I had that. You are right about keeping my family healthy. That is the most important thing. I guess I just have to be patient and maybe they will come around.

Natalie

I agree that family members act strange. My mother recently discovered that she carries the Celiac gene. She called me and appologized, saying it was all her fault. My grandmother keeps telling me that no one else in her family is sick and she's never heard of these diseases (autoimmune diseases).
During a conversation about my childhood, I discovered that a cousin of my grandfather's had MS. Grandmother feels better because the autoimmune diseases that I, my daughter, and uncle suffer with are not her "fault".
My sister still doesn't understand why I'm horrified at her messy kitchen with cereal and crumbs everwhere (she has 3 kids). I know she thinks I'm nuts. I don't go to her house anymore.
I have a friend who refuses to accept my diagnosis. We used to go out to eat about once a week. It's too much of a hassle for her now, so we don't go out.
Most people, though, are very understanding and go out of their way to make food I can eat. I've had to tell them to just let me bring my own food. I can't trust that they will remember things like: don't cut my veggies on the cutting board they use for cutting bread, don't stir my noodles with the spoon they stirred the wheat noodles with, etc.
I tried pointing out some symptoms that my family have, and got ignored. Now, I just say that autoimmune diseases run in the family and they should let their Dr. know.
Your not alone with getting weird reactions.
Keep yourself and your family well, and ignor the unbelievers.

I have been gluten free for 7 yrs next month. I am the oldest of 3 kids. If I had been diagnosed first, then my mom would not have believed me, yet my sister was diagnosed first, so then, when I went gluten-free, I probably wasn't nuts. My oldest son did think it was stupid to have marked margarine, peanut butter, salad dressing--etc for a while. He still doesn't understand it well, but at least gets the basics. My brother doesn't want to understand. He thinks all we need is a good bowl of his homemade barley soup! My sister has been gluten-free 7 yrs this last march, our dad will be 3 yrs in November. So, if the family doesn't understand, they live it anyways.

I have so many intolerances now and since my sister doesn't, then my mom thinks it is all in my head. I just have to get pass their attitudes and realize only I live in this body and only I know it.

There is only one person at work that totally understands me, the doctor's wife, Stacey. She was once tested for celiac disease, yet lives dairy free. Her husband, the doctor I work for, doesn't really understand. The other 3 in the office pretend they get it, but they don't. I have to deal with crumbs on my invoices, crumbs on the optician's lab counters, sometimes I even have to make them get away from my desk with food.

I guess, the only thing you can really do, just go on with your daily life the way you must and hope one day they will understand.

There's a lot of fear and ignorance. I remember my Dad getting defensive when it was suggested that my brother might have inherieted his tendency to alcoholism. He seemed to feel we were blaming him somehow. Although, I suppose parents can't help but feel responsible for the things that happen to their children, so perhaps it is just a defensive mechanism.

I bet there are few celiacs out there that haven't had to deal with weirdness from family or friends. I've read some heart breaking stories here. Even worse are the ones that have unsupportive spouses.

I've got company coming this week and I have to explain to them my "no bread" rule. Wish me luck!

Did you ask them why they've been distant and ignoring you lately? There could be a good reason why that you can work through. Maybe you mother does feel guilty because she "gave" it to you, maybe they think the diet is too hard for them to deal with and you're going to ruin every get-together you have. It doesn't sound like they're being downright hostile and are unable to understand. Maybe a long talk about why they're cutting you out and how hurtful it is plus some education about celiac from your end would help?

I think my husbands family just needs an education on wheat. They think "wheat" means "whole weat". So they think I can have white bread, white pasta and pizza. I tried explaning at least 10 times in the last couple months but they just don't get it. They invited us for supper last week and when we got there, they had made spaghetti and meat balls. They were all excited cause the meatballs had white bread crumbs and the pasta was white.
My husband lost it with them and we left. I think they may have gotten the point.

I totally understand. My family has been semi supportive but that's only because a few of them don't have ANY dairy and one is gluten light. My friends were the least supportive though mainly because I was so sick for such a long time and still am that I think they got annoyed and thought I was a hypochondriac. One day I was looking at a product and I had my list of forbidden foods (from this site) and they were amazed at all the things I couldn't have. It also helped educate them casually without forcing them to learn. Good luck!

Kassandra

I totally understand. My family has been semi supportive but that's only because a few of them don't have ANY dairy and one is gluten light. My friends were the least supportive though mainly because I was so sick for such a long time and still am that I think they got annoyed and thought I was a hypochondriac. One day I was looking at a product and I had my list of forbidden foods (from this site) and they were amazed at all the things I couldn't have. It also helped educate them casually without forcing them to learn. Good luck!

Kassandra

First, let me say that my side of the family is very supportive. My husband looks out for me with a vengeance. My mom is very careful what she prepares when she has dinner and always has something she knows I can eat. Sometimes she does make an honest mistake b/c something hasn't occurred to her, like when she had a birthday dinner for my dad and me, she didn't think about the Dairy Queen's ice cream cake cookie layer. She felt really bad about it. My husband's family, on the other hand, is another story. His mom insists on offering me gluten laden food b/c she says it's rude not to, even though we've told her that it's not rude. Now she will say, I know you WON'T eat this, instead of you CAN'T. His aunt and uncle were here the other night and he was telling them how much trouble it is to eat at a restaurant. When mentioning me being served croutons on a salad, she said, "Well, you can just pick them off." You can tell with his family that they think we're exaggerating the severity of the situation to get attention or something. I can feel the annoyance in the air, if you know what I mean.

I don't get why there are so many "family" issues with this disease. Take my father (please!): he says things to me like, "get a life" (he thinks this is a diet phase), "a bite isn't going to kill you" (we've all heard that one before) and my personal favorite "there's something wrong with you if you won't eat (fill in the blank)" (meaning how stupid am I not to eat pizza?). I go through this routine with him nearly every time I see him. He has been provided pages and pages of information on this disease and I know what he hasn't read (probably all of it) has been drilled into him by my mother, who is well-meaning but doesn't quite "get" it, either. What's frustrating is that I'm 36 years old! I've been "out of the house" and married for 13 years and yet this disease has created some serious control issues in my family. Believe me, my father does his best to get me to eat what will hurt me, if only so he can "prove" it won't hurt me.

It's twisted and backwards and totally the opposite of what "family" is supposed to mean. And I know I'm far from the only one out there who is dealing with this sort of thing. There have been times where I've considered moving out of state just so that I won't have to deal with my father on this issue. Move out of state! How ridiculous is that?

I think it would be a lot easier for families if the diagnoses were definitive in all cases. One simple test, positive or negative. No ifs ands or buts. Here's the test result, leave me alone. I don't know.

Anyway, hang in there. You are ultimately in control of your own health; the family issues should become less stressful with time.

A.Q.

Marlene,

I have an OT question for you. I noticed in your siggy that you were first diagnosed with Hidradenitis Superativa. My son has that and is on Tetracycline for it. Do you believe that to be celiac related?

I wonder sometimes if my husband and family are afraid to learm much about it because they feel then they would have to take it more seriously. I try to explain how serious it is but always give up because it just doesn't seem to get through. I've tried asking for them to read about it but they never care enough to get past the first few pages. They have admitted they think a lot of it is in my head, maybe because bone pain and bowel problems dont show on the outside? I'm not sure why they act that way but it sure hurts sometimes. Hopefully it will pass with time.

I think Celiac brings up all of those pressures to make sure your family is "just like everyone else". Particularly for those in the family that feel responsible for the genes handed down (parents) or those that want to "fit in" and not be different.

For me, I didn't care that much about fitting in when I was a teen and my brother thought that was extremely uncool. Now, he's in his 50s and I'm in my late 40s and he's still convinced after 4 years that I just need to teach my body who is boss and eat gluten until my body adjusts to it. Kind of like running into the brick wall until it (or you) falls down instead of stepping around the wall.

What really kills me are the number of people who think your refusal to eat gluten is all about them. Those people are worse than the clueless people who will never get it because any refusal is a statement on them personally. Call me cantankerous but I've actually told someone "However good your cake may be, it's not worth the equivalent of having stomach flu for the next week or two -- sorry!"

Wow! Thank you everyone. I don't feel alone anymore.
I did sort of confront ( in a nice way) my mom. I think she is in denial about possibly having it herself. I also explained about the aches and pains I have that I now realize are due to Celiac. She was pretty good about it.
My sister is my sister. She is a police officer , and has that tough skin. I think she worries about having it as well. She did mention that she may get the scope one day for the sake of her one year old daughter.

It was nice to hear everyone's stories.

Natalie

[size="3"][/size]Hi,
No, I never thought of it as being related to Celiac. I have found Hydrenitis Suppurativa on some "suspected" autoimmune lists. I believe that it is autoimmune as it does "flare up" and causes fatigue and inflamation. It's also one of those diseases that not all Dr.s know about. The first time I asked about it, I was told it was from being dirty. I was so horrified, I didn't ask again for about 5 years.
Does the Tetracycline help your son? I have found nothing that helps. Stress does aggrevate mine and will cause it to flare.
Going Gluten free didn't help it at all.
Good luck to your son, I hope it's not real bad and doesn't get worse.

Marlene