29 replies to this topic

[darlindeb25]

i wanted to let everyone know about christmas with my kids --i fixed the meal sunday at my son, jeremy's--we had cornbread stuffing, turkey, ham, mashed potatoes, yams, corn, and 2 gluten items--green bean cassorole and rolls----jeremy used to say to his brothers and sister-- mom is just being stupid (at the time, i had MOM printed on top of my butter dish, jar of peanut butter, the likes)i told him then--you can use it, just dont double dip -----anyways--after 3 yrs--- i cant tell you how many times i was asked sunday, "which dish of butter is yours mom?" "which bowl of stuffing can we have?" (there was a bowl that had been baked in the turkey and one that was baked separately, so both were gluten-free)-- it was very refreshing to find that they all finally understand the importance of protecting me from gluten--they still dont all understand everything that gluten is in--jeremy called from the store and asked, "which rolls can mom have?" but he is getting there--- deb

[tarnalberry]

Congrats! That's great progress, and a big "thank you" to him for at least paying attention to it for you!

[celiac3270]

That's great! You are making headway--that must make you feel good!

[captain]

Hi -

I'm sympathetic to hear that your parents "don't beleive in celiac disease". My own general practitioner "doesn't beleive in celiac disease!". Luckily I have a gastro specialist who does. I've found that the hardest thing about being diagnosed is that people don't take my condition seriously, mostly because I can't come up with an appropirately horrifying answer to the question "well what happens if you eat wheat or dairy?" I feel like when I DON'T answer "I'll die", people get bored and assume it's not that serious. That's a cynical way to look at things, I'm sure - but I sometimes think about it that way.
I can't add much to the excellent suggestions others have made about supporting your daughter and helping her deal with her condition, but I do suggest that you tell people (as I do) that she has an allergy. In my experience, when you say allergy, people think about peanut and shellfish allgergies and take you much more seriously.

My two cents.

the captain

[tarnalberry]

captain, what if (in the case of someone with diahhreah as a symptom) you use the reply "let's just say that YOU wouldn't want to have to clean up the bathroom afterwards if I got contaminated in your house." (followed up with a "knowing grin"...)

[Maggie1956]

captain, what if (in the case of someone with diahhreah as a symptom) you use the reply "let's just say that YOU wouldn't want to have to clean up the bathroom afterwards if I got contaminated in your house." (followed up with a "knowing grin"...)

I just love your reply! What a brilliant come-back.

I haven't really got a fantastic answer for this problem with your parents, other than to say that they should be ashamed of themselves to treat their own granddaughter like this.

You are doing a great job in teaching your daughter to be sensible about her eating, and they should support you, AND HER, in this.


It makes me mad to think of what you have been through. I sure hope that the situation improves drastically and that they get a bit of sense in their heads.

If not for themselves, then certainly when it comes to your daughter...THEIR GRAND-DAUGHTER...sheeeesh!
Do they realise that eating glutenous food is life-threatening for her?

[darlindeb25]

love that answer tarnalberry-- just love it--the grin, especially---i tell people that gluten is not life threatening to me, but in time is deadly--i tell them the cancer scare part of celiacs and that sometimes is enough for them--sometimes i just stomp my foot and say, "I cant have it and that's it!" ---when my sis goes to a restuarant, she will tell the waiter or waitress that he/she doesnt want to see what happens if she gets glutened and neither will the other patrons ---sometimes we have to use scare tactics just to get our point across and that's too bad--people should just listen to us and believe us on face value ----really, come on --would anyone give up the foods we have if we didnt have too--- i would love to beable to pop anything in my mouth without worry--what a dream that is now --deb

[wclemens]

Hi,
Sadly, sometimes a Celiac's parents even refuse to acknowledge the problem! My grandson's mother decided that Dakota didn't really have Celiac, even though Enterolab confirmed his intolerance of grains and milk & dairy, after he was projectile vomiting his formula and having 12 diarrhea diapers a night when he was 3 weeks old.

I babysat him 5-6 days a week his first year of life, and taught his family what to feed him (I also have Celiac). When his mother decided he should go to daycare at one year old, she also decided that he didn't have Celiac. He was thriving by then, so she and his father have been feeding him every food under the sun for the past 6 months. A blood test they had done didn't show Celiac. I pray that he will be healthy and well throughout his life, but what can I do? I can only bring myself to feed him the foods I know are okay for Celiacs, so I do my part that way, and I love him endlessly. Welda

[wclemens]

Sorry that I hit the post button twice here. Welda

[celiac3270]

sometimes we have to use scare tactics just to get our point across and that's too bad--people should just listen to us and believe us on face value  ----really, come on  --would anyone give up the foods we have if we didnt have too---  i would love to beable to pop anything in my mouth without worry--what a dream that is now  --deb

I know.....good points...luckily, nobody important in my life is a disbeliever . The end of your post made me think back, too, to the days where I would pop anything in my mouth that I wanted or would order anything off a restaurant menu based on what tasted good, or when going to the grocery store with my mom, just browse and look for something new that looks good. Now I realize how little people appreciate that and how little I did, too.

[debmidge]

I am sure all of you will get this one. On Christmas day, I have to have dinner with in laws. My husband is celiac and we are at his sister's house, whom I think has undiagnosed celiac and refuses to get tested, anyway, she's peeling potates and at the same time eating Italian bread with butter; getting bread crumbs in the butter dish and there are bread crumbs strewn all over the table and where she's peeling potatoes. She says she's so hungry and had to eat something. That's when we arrived. Our eyes were popped open in shock and dismay! The crumbs are in the area of the peeled and sliced potatoes! So my husband, carefully says, my food can't be near those crumbs and they are on the potatoes. She replies angrily: Well they'll cook off when they are in the pot!


I think family members are the worst to get to understand what is and is not acceptable. We've always presented to her in a nice way how gluten cannot be around the gluten-free foods and no mixing and matching of utensils, etc. She seems to think that the gluten will go away by magic. I think friends understand and want to comply better than family. When we tell her the "rules" she feels we are being bossy and she gets her back up (she's really not accepting of cricitism in any form as she has no humility, but that's got nothing to do with celiac). She's his only sister and only relative so there's no getting out of going there for Christmas. We would have gotten there sooner & I would have peeled, but a pipe in our kitchen burst and it took up all of our time that morning. I cringe to think of all the times we weren't at her house and what the heck she did to the gluten-free food...

[cherylk]

Donna, I feel your pain. My four year old was just diagnosed with celiac disease through Enteroloab with the gene and stool test. Not only do I have the extended family not willing to admit the diagnosis, they feed her gluten and casein products just to spite me. My daughter comes home and the last time it took seven laxatives to make her go to the bathroom. (and days of sitting on the potty with severe cramps) If that is not enough, the pediatritian who is good friends with my ex and has misdiagnosed my childs breakouts as eczema since the time she was born, refuses to admit his mistake. The two hang together and do dinners while my daughter suffers in pain. Talk about being flushed down the toilet. I don't think it is possible to get any more frusterated. BUT I AM NOT GIVING UP.
Cheryl

[debmidge]

Cheryl

If they are doing that on purpose to spite you they are sick people.

[cdford]

Hi, guys. It's Donna again. I started this post in a fit of frustration one day. I must admit that I have truly enjoyed the bantering back and forth on the topic. While I am not always feeling well enough to answer, I have checked in regularly.

I had a much better Christmas this year. I suppose after seeing what can happen with one meal that is cross-contaminated (August 16...weeks of gastro symptoms, 3 hospital visits, another round of specialists, and now more neurological damage to recover from), my family at long last suggested that I might be safer to bring my own food than to trust their ability to feed me. When I voiced my concern over possibly angering my hosts (like that should be a problem), I was told not to worry about that...they had rather never see me go through this again. My daughter even went to the grandparents and was not fed biscuits and gravy. She has had only mild symptoms since returning home. Maybe, just maybe, they are finally convinced that she won't ever get as sick as I am if she learns to take care of her diet.

You know, those of you who have doctors who don't believe it are in the extreme, but my endocrinologist and neurologist are somewhat frustrated that many primary care doctors and gastro docs don't believe it is "celiac" until the damage is already done. When they see the symptoms building over several years, why wait for the biopsy to show that you are damaged and miserable. Humm...several family members with celiac, you have vomiting, diarrhea, and bloody stools...why on earth would you wait for a biopsy to become positive before you considered celiac and a gluten free diet??????? If the diet doesn't help, you have at least eliminated the most likely cause and can realistically look for others.

By the way, to the one with the ex and the pediatrician: I would be seeking a doctor who would pay attention to me and those lab results. Find someone who will be supportive. Doctors are not usually like family members that you cannot control.
I'll just bet that there are some folks on this site who might make a suggestion for a physician in your area.

Donna

[cdford]

By the way, if your four year old has a significant new breakout, consider taking him to a dermatologist to check for DH. Just make sure they know what you want to check before you get there since they often have to have either special equipment or have a special lab pickup for it. You shouldn't hurt anybody's feelings by taking a child with a skin rash to a dermatologist! The DH breakouts "itch" intensely. I put that in quotes because it is not a traditional itch like a mosquito bite, but more of a prickly needles attacking you from under your skin itch. I have had both a DH outbreak and poison ivy at the same time. Believe me, I'd take the poison ivy any day if given a choice.

Donna