Went To My First Family Get Together Since Dx

[Bubba's Mom]

Yesterday I went to my first family get together since DX last July. It was for my Niece's daughter's first Birthday.

I thought "no big deal" I can handle being around cake and ice cream. I'll just take a Krispy Treat to eat. I am gluten, soy, and dairy free.

We got there and found out it was a much bigger party than we thought. There were 80 people invited and there was a buffet for lunch. Croisants with chicken salad, macaroni salad, taco salad, Cheeseball and crackers, mac and cheese, heavenly hash, cupcakes, cake balls, big chocolate chip cookie with icing, and beer keg.

There was a plate with a few pickles, and a few grapes and strawberries used mainly as a garnish.

I ate 3 strawberries, 4 grapes ( I don't like grapes..it's a texture thing) and a pickle. ..and my Krispy Treat. A guest that arrived after the food had been set out brought a jug of sangria. She insisted I try it. I don't usually drink alcohol, or eat citrus, but I poured about an inch or so of it it my Solo cup and sipped on it.

By that time I was ready to gnaw my own arm off I was so hungry and there was food everywhere around me. Little kids carrying around half eaten cupcakes with frosting and crumbs being spread everywhere. People all around me were pigging out on foods I couldn't touch with a ten foot pole. It was really hard to handle, and once I got home I started feeling ill. Of couse my mind went to how I might have gotten gluten.

The fruit may have been handled after the croisant sandwiches were made? The citrus in the sangria was probably sliced on a cutting board that had cc? Rookie move! I got D, which is the opposite of what I usually have. I'm wondering if it was the alcohol or citris that might have "got' me rather than gluten because I don't feel too bad today?

I guess next time I should just pack food and have it in the car if needed?

I taked with my niece who was half heartedly watching her 2.5 year old daughter who was just diagnosed with PICA and anemia. She had been eating toilet paper and stones, which is why she was taken to the Dr. The little one was put on a strong iron supplement, and her Mom was told not to give her milk.

Right after our conversation the little one came up to the patio table with several stones in her hand. My neice took them away and gave her a piece of cheese. I asked about it, since she was told not to give her daughter milk. She said they just told her to not give her milk. It seemed to me like all dairy should be taken away if they're suspecting villi damage?

I asked if they tested for Celiac and my neice said she didn't know what tests they ran. She hadn't gotten the results back yet. She acted like it was no big deal at all. I hope once the tests come back they educate her better or that poor child is going to be in trouble?

[sandsurfgirl]

I have a cooler bag that looks like a cute purse. It's Rachel Ray brand. They sell them at Target and I've seen them at Costco occasionally.

I also have stainless steel food containers that can hold hot food and be wrapped in a little towel.

Bring your own food in a cute bag and nobody will know the difference. People aren't usually watching what's on your plate, especially at a big party.

If you just sneak off to a corner with a plate and fork, you can transfer the food to your own plate discreetly and then join the party to eat it.

I always keep Betty Crocker and Gluten Free Pantry cake mixes in my cupboard so I can whip up cupcakes if I need to. There is a little cupcake holder at Bed Bath and Beyond that is shaped like a cupcake and holds one of them neatly in your purse. I have to plan ahead for parties because my 7 year old has celiac too and I don't want him left out.

I've brought hot pizza to a pizza party wrapped in foil in my cute cooler bag plenty of times. People don't care and most of them don't notice.

[sandsurfgirl]

Another thing I do is ask what they're serving so I can match it. If they're doing croissant sandwiches I make my own gluten free version and bring it so my food looks like what they're having and I can enjoy an eating experience.

[IrishHeart]

By that time I was ready to gnaw my own arm off I was so hungry and there was food everywhere around me.

I guess next time I should just pack food and have it in the car if needed?

Hon, I would never, ever go to something like that and not bring my own food. Or eat before I went. Or both.

Huge CC factor--and all you had left to eat was some fruit and alcohol?

Time to assemble a "to go" kit!!

[rosetapper23]

I just wanted to add that you also need to be careful about kissing Aunt Marge, Grandma, and any and all nieces and nephews because they're sure to have gluten on their lips, cheeks (where they've been kissed by others), and hands. People will understand if you air-kiss or hug tightly rather than give a big smooch. Be sure to carry wipes with you to clean off those well-intentioned, loving kisses on your cheeks, too, because if you touch your cheek and then your lips, you'll be sorry. Big parties can present huge challenges to very sensitive celiacs.

Regarding your niece, good luck there! I've been trying to get my brother to see that both of his kids show symptoms of celiac, but he and his wife have no interest in discovering that they have children who might have to eat restricted diets. My sister's oldest daughter had to wait until she was 18 and out on her own before she could start eating a gluten-free diet because her mom just couldn't accept that her daughter was anything but perfect (and, of course, she's perfect anyway!). Perhaps parents nowadays are so extremely busy, they cringe at the thought of experiencing yet another challenge in their lives. Keep advocating for your niece, though, because who knows? She might get lucky and end up on a gluten-free diet, thanks to you!

[sandsurfgirl]

I just wanted to add that you also need to be careful about kissing Aunt Marge, Grandma, and any and all nieces and nephews because they're sure to have gluten on their lips, cheeks (where they've been kissed by others), and hands. People will understand if you air-kiss or hug tightly rather than give a big smooch. Be sure to carry wipes with you to clean off those well-intentioned, loving kisses on your cheeks, too, because if you touch your cheek and then your lips, you'll be sorry. Big parties can present huge challenges to very sensitive celiacs.

You must have a very kissy family! LOL My family would look at me like I was nuts if I kissed them. We hug but that's as far as it goes.

Now my children, I kiss them all the time and my 4 year old knows not to gluten me. She washes her face after eating gluten. We are a totally gluten free house, so it's only when we are out that she eats it.

[rosetapper23]

Ha ha! Yeah, you're right--I do have a rather kissy family! Point well taken...

[Bubba's Mom]

Hon, I would never, ever go to something like that and not bring my own food. Or eat before I went. Or both.

Huge CC factor--and all you had left to eat was some fruit and alcohol?

Time to assemble a "to go" kit!!

I had NO idea it was going to be such a big party. Usually in our family we just get together to celebrate the kids' birthdays by having ice cream and cake, a few gifts, a little chatting and we're off on our way.

A get-together like this has perils I hadn't thought of...like "safe" fruit that may have been handled by gluteny hands, and cc cutting boards didn't even come to mind until after I got home.

This was a learning experience for me, that's for sure. I couldn't believe how scary it was to be surrounded by people eating so many gluten foods.

My Brother-in-law is from a kissy family. When we went to leave there he stood with his beer in hand..and said "give us a kiss". I turned my head just in time or he would have gotten me! LOL

While we were sitting around the patio table, one of my nieces who's a nurse said "so..you can only eat white bread now"? It's scary that people in the medical field don't know about gluten.

[sandsurfgirl]

Ha ha! Yeah, you're right--I do have a rather kissy family! Point well taken...

LOL!! I'm a bit of a germaphobe and I shudder at the thought of all those people kissing me. Yikes!

When the pastor stands at the door after church I wash my hands if I shake his hand. He shook hands with all those people and who knows who is sick, who didn't wash after the bathroom, etc. It grosses me out so bad! I make my DH and kids wash their hands after too. Honestly I don't like shaking people's hands.

It's from years of being so sick all the time. I had many sinus infections and bronchitis from celiac and it made me freaky about germs. I never got over it.

[sandsurfgirl]

I was going to put links to the items I have that are great for taking your food and keeping it hot but I forgot we can't link to that site where you buy things online because it was banned.

I use a few different things.

I have a small thermos for soup or pasta, etc.

Small stainless steel containers. If you search for them on a certain site there are a whole bunch of different ones.

Tiffins are great little stainless steel bento box type containers in one or two layers. I just ordered some of those.

Mr. Bento or Ms. Bento keeps food hot or cold for hours and hours.

All those containers aren't cheap but they will last forever. You don't want to carry hot food in plastic. Dangerous with the leaching chemicals. We don't use plastic at all in our house for food storage.

There is a microwave gel pack you can put in the cooler to keep hot food hot. Coolers are not only for cold food.

The BEST thing I've used for hot food is to heat bricks wrapped in foil in the oven, put them on a towel in the cooler and then the food on top in stainless steel or foil if its' solid like pizza. Then put towels over all of it and seal up the cooler. Keeps it smoking hot for hours. I put pizza in that contraption out of the oven and took it to a party. 2 hours later it was steaming when I unwrapped it and tasted so great nice and hot. I'm going to try breaking up a brick into smaller pieces for small meals and see if it works. Must heat in the oven, not in microwave!!!!

[Bubba's Mom]

You know, I guess I never thought of the cooler being used to keep things hot? It's insulated so should work great? A heated brick is really clever!

I'm going to look into the stainless steel containers. You make a good point about not putting hot foods in plastic. I don't use plastic to heat things in the microwave bcause of the chemicals, yet never thought about the effect of putting hot fods in plastic thermoses. I guess that's why the good ones have a liner?

[IrishHeart]

Celiacs actually have immune systems that work on "high". We ward off more germs than the average joe.

A peck on the cheek should not be an issue, hugging should not cause you harm, but if brother-in-law or Uncle Bob comes at you with a slobbering tongue after a beer, well, that's a whole 'nuther issue and not just because of the gluten.

As for the medical community not knowing about celiac and gluten, well, that doesn't surprise me much. Hope you took the opportunity to educate her.

You definitely want to make up a "to-go" cooler next time.

I have snacks with me all the time now. You only need to be caught hungry once or twice to drive that home.

Next family gathering--you'll be fine!

[sandsurfgirl]

You know, I guess I never thought of the cooler being used to keep things hot? It's insulated so should work great? A heated brick is really clever!

I'm going to look into the stainless steel containers. You make a good point about not putting hot foods in plastic. I don't use plastic to heat things in the microwave bcause of the chemicals, yet never thought about the effect of putting hot fods in plastic thermoses. I guess that's why the good ones have a liner?

It works very well for keeping things hot. I have different sizes of coolers depending on where we are going and how much food we are bringing.

[beachbirdie]

When the pastor stands at the door after church I wash my hands if I shake his hand. He shook hands with all those people and who knows who is sick, who didn't wash after the bathroom, etc. It grosses me out so bad! I make my DH and kids wash their hands after too. Honestly I don't like shaking people's hands.

It's from years of being so sick all the time. I had many sinus infections and bronchitis from celiac and it made me freaky about germs. I never got over it.

I hear you! I got a norovirus a few short years ago because of shaking hands in church with a lady who told me how sick she'd been during the week and that Sunday in church was her first day out of bed. My intestines haven't been the same since.

[Juliebove]

Yikes! I would say most likely she should not have given the girl any cheese but... I don't really know why she was not to have milk.

[sandsurfgirl]

Celiacs actually have immune systems that work on "high". We ward off more germs than the average joe.

Our immune system works on high but it attacks our own bodies, so I'm not sure it that's really true. Before diagnosis I was sick all the time and that's pretty much what I hear from other celiacs. I became paranoid about germs because I caught every single cold, had chronic sinus infections, and was just sick every other month. Now I'm far better but still I get my fair share of germy type illnesses like colds, etc.

[Bubba's Mom]

Our immune system works on high but it attacks our own bodies, so I'm not sure it that's really true. Before diagnosis I was sick all the time and that's pretty much what I hear from other celiacs. I became paranoid about germs because I caught every single cold, had chronic sinus infections, and was just sick every other month. Now I'm far better but still I get my fair share of germy type illnesses like colds, etc.

There's another thing that enters into this. You may not have normal IGG levels in your blood? I kept getting pnuemonia over and over..and I've had chicken pox twice. When I went for allergy testing they ran a panel that tests your overall IGG in three areas so they know if the allergy tests are acurate. I was low in one area. I was told that's why I was vulnerable to pnuemonia.

It's possible you are low in the area that defends against colds and sinus infections? keep hand sanitizer handy?

[sandsurfgirl]

There's another thing that enters into this. You may not have normal IGG levels in your blood? I kept getting pnuemonia over and over..and I've had chicken pox twice. When I went for allergy testing they ran a panel that tests your overall IGG in three areas so they know if the allergy tests are acurate. I was low in one area. I was told that's why I was vulnerable to pnuemonia.

It's possible you are low in the area that defends against colds and sinus infections? keep hand sanitizer handy?

That was before I got diagnosed celiac and I'm 2 1/2 years out, but that is a good thing for people to know. I do use sanitizer sometimes and I wash my hands a lot.

[IrishHeart]

Our immune system works on high but it attacks our own bodies, so I'm not sure it that's really true. Before diagnosis I was sick all the time and that's pretty much what I hear from other celiacs. I became paranoid about germs because I caught every single cold, had chronic sinus infections, and was just sick every other month. Now I'm far better but still I get my fair share of germy type illnesses like colds, etc.

I'm not disputing you got sick all the time and I am not saying that celiacs do not catch colds or have sinus infections. Not at all. I am not suggesting that people not take precautions when around people who are sick.

I am just relaying something I have read many times in medical articles and books--that our immune systems are not compromised and we are no more susceptible to illness or germs than anyone else except when the spleen is functioning inadequately.

Our immune systems, in fact, work hard to fight off the "bad guys".

For example:

"Patients with celiac disease are initially more susceptible to pneumococcal pneumonia due to hyposplenism, which is common in active celiac disease, and the spleen is important in fighting bacterial infections caused by pneumococcal bacteria. They advise people over 50 to have the vaccine.

It is a common misconception that celiacs are immunocompromised or more prone than the rest of the populations to infection.

This is not medically accurate.

The immune system is not compromised, it is in fact overactive.

Patients with celiac disease are only at risk for conditions based on specific encapsulated organisms such as pneumoccoal pneumonia or meningococcal infections that require the spleen to combat them."

[JNBunnie1]

It is a common misconception that celiacs are immunocompromised or more prone than the rest of the populations to infection.

This is not medically accurate.

The immune system is not compromised, it is in fact overactive.

Anecdotally, I would have to agree with this. I used to get sick (before gluten free) all the time, bad. Minor colds for other people would be horrible for me. Now, it's the other way around. A bad cold could wipe out my office over a three week period, and I'd be sitting in my little corner sniffling lightly and feeling smug. Go figure?

[pricklypear1971]

Anecdotally, I would have to agree with this. I used to get sick (before gluten free) all the time, bad. Minor colds for other people would be horrible for me. Now, it's the other way around. A bad cold could wipe out my office over a three week period, and I'd be sitting in my little corner sniffling lightly and feeling smug. Go figure?

I was sick all the time before starting thyroid supplaments. Then, I seemed to never get sick or if I did it was very mild in comparison. Last time I was sick (first flu since gluten-free) i was the last one to get it and it was worse than others , but I also didn't catch the previous 2 bugs everyone else got. That's more typical of how I was as a young adult. I didn't get it, but if I did it was pretty yucky.

[Ninja]

I also used to get sick a lot. However, I've only gotten sick once since going gluten-free and it was early into the process. I so hope this is permanent!

IGA deficiency and common variable immune deficiency are both listed as symptoms (related disorders) of Celiac Disease. With Celiac being a malfunction of the immune system

[scaredblossom]

I'm not disputing you got sick all the time and I am not saying that celiacs do not catch colds or have sinus infections. Not at all. I am not suggesting that people not take precautions when around people who are sick.

I am just relaying something I have read many times in medical articles and books--that our immune systems are not compromised and we are no more susceptible to illness or germs than anyone else except when the spleen is functioning inadequately.

Our immune systems, in fact, work hard to fight off the "bad guys".

For example:

"Patients with celiac disease are initially more susceptible to pneumococcal pneumonia due to hyposplenism, which is common in active celiac disease, and the spleen is important in fighting bacterial infections caused by pneumococcal bacteria. They advise people over 50 to have the vaccine.

It is a common misconception that celiacs are immunocompromised or more prone than the rest of the populations to infection.

This is not medically accurate.

The immune system is not compromised, it is in fact overactive.

Patients with celiac disease are only at risk for conditions based on specific encapsulated organisms such as pneumoccoal pneumonia or meningococcal infections that require the spleen to combat them."

Ok question when I was in high school I had epsten barr and had to be taken to the hosp with severe stomach pains, they said my spleen was ready to rupture...does any of this have anything to do with Celiac?? Is it something my GI Dr should know? Never though about it till I read this, they didn't opperate and it eventually resolved with antibiotics and IV fluid I think

[IrishHeart]

I have no clue whether all of our various maladies and illnesses are related to celiac, but it sure seems as if they could be.

I had something my doctor called "virus X" in high school (which means he had no idea what it was ) I missed a month of school. I was covered in red itchy blotches, I was exhausted and had bouts of nausea, vomiting, a hacking cough, etc.

Had my gallbladder out and then, I had viral pneumonia and was sidelined for a month in my 30's and 6 months later had the first miscarriage in a series of them.

Then, I started having bone and muscle pain...etc. blah blah blah.

They all could be related, IMHO.

The odd thing is, as sick as I was from celiac (before DX) from 2007-2010, I never got colds or the flu. I had everything else, believe me, but not those. Go figure.

It's crazy sometimes, don't you all think?