How Do You Leviate Your Symptoms When Glutened?

[kari]

so here's my dilemna.... I've recently discovered that I had celiac disease, and have been gluten free for 3 weeks now. The only people who really know about this are my mom and sister, since we are very close; my roomates; and some of my coworkers, since i work in a restaurant and food is a huge topic of conversation with us. I don't think I was hugely sensitive to gluten before being diagnosed, just general feeling tired and run down all the time for a few years that got much worse at times and a bit better at others, and had nagging stomach aches that i never even realized I had as much as I did until after going gluten free realized it was the first time in about a year i wasn't downing mylanta up to three times a day... i also had major brain fog, etc. to the point where i'm thinking that my add diagnosis was really just another symptom of my celiac disease. so - in a week and a half, i'm going away for a week to visit a close relative who is very very ill. i'll also be staying with my grandfather, who is 90 years old, and so to make a long story short, that whole branch of my family doesn't know yet about the celiac disease and now seems hardly the time or the place to start educating them about it, when there are going to be a lot of other life or death issues going on, and the last thing i want to do is be a burden in any way - i'm going down there to help out, certainly not to have people fuss over me, and even if i did try to explain the condition, my grandfather, amazing as he is, would just not understand. it took me most of my life to get the point accross that i was a vegetarian and they've only all just rececently caught on. so being totally gluten free is not really a debatable option at all, and i'm going to just have to deal with it. Of course I don't plan on purposely overloading on bread, etc., and will try to choose the lowest or gluten free options when available, but i'm sure there will be a time at least once over the week when i will be in a bind and will just have to eat what i am given and not cause a fuss over it. Does anyone out there have any specific OTC remedies that they keep on hand for when they are accidentally glutened, coping strategies, etc. that I could stock up on to prepare myself for my trip and try to have the most pleasant time possible? has any one else been in this situation soon after your diagnosis and how did you approach the situation?

[penguin]

I know exactly what you mean! On day 2 of being gluten free, I had to travel 8 hours to see my sick grandfather. My family didn't have a clue until I got there, but I told them, but didn't make a big deal out of it. We were all in the hospital so I lived on mashed potatoes and bananas for a few days. Just stick to plain foods and you won't be a burden to anyone. It's a disease, they should be able to understand.

And for heaven's sake, be completely gluten-free or you'll be sick too, and you'll be more of a burden, not a help.

Sorry about the family situation, hang in there!

[Mango04]

Can you bring food with you? Maybe pack a cooler with lots of gluten-free food, or bring stuff like Tinkyada pasta and sauce and cook it for yourself and your relatives. I bet nobody will know the difference. You could also find a good grocery store or health food store when you get there and stock up on safe food for the week. If you tell them you're gluten-free, but have lots of tasty gluten-free food with you to share with them, they might not think it's that big of a deal...you might not even have to tell them it's gluten-free. They might not know the difference. You could just tell them you want to provide the food and cook while you're there. My biggest coping strategy is to be armed at all times with food that is safe for me. I agree with ChelsE - if you stay healthy while you are there you'll be much more helpful to everyone. Hope it works out okay for you.

[kari]

Can you bring food with you? Maybe pack a cooler with lots of gluten-free food, or bring stuff like Tinkyada pasta and sauce and cook it for yourself and your relatives. I bet nobody will know the difference. You could also find a good grocery store or health food store when you get there and stock up on safe food for the week. If you tell them you're gluten-free, but have lots of tasty gluten-free food with you to share with them, they might not think it's that big of a deal...you might not even have to tell them it's gluten-free. They might not know the difference. You could just tell them you want to provide the food and cook while you're there. My biggest coping strategy is to be armed at all times with food that is safe for me. I agree with ChelsE - if you stay healthy while you are there you'll be much more helpful to everyone. Hope it works out okay for you.

thanks for the replies!!! basically i guess the issue is a)'announce to everyone that i have celiac disease and answer countless questions and puzzled faces and can you have this or can't you, etc. etc.' or b)just not mention it and try to self remedy myself.. i figured i lived with celiac disease for years not knowing i had it, so 5 days with some glutened food won't be the end of the world, but maybe some people had some suggestions for things i could take/do that they use when they are accidentally glutened, so that i could feel more like my more high functioning healthy gluten free self who i just discovered in the past few weeks... there is still the option of telling everyone, but it would certainly be a big ordeal, which was what i was trying to avoid, and it would certainly come up if i were to come with a bunch of packed food just for me. the only thing i could think of is to send a big long email to my dad (it's his family) explaining that i was finally diagnosed, with some informational attachments.. (he had done some preliminary research a year ago when i was told that i may have the disease, so it wouldn't be a big shot in the dark), and then kind of take the 50/50 chance that he had mentioned it to my other family members, since he knows that i will be visiting them... and see if they ask me about it, in which case i would tell them that i can't have any gluten? on the other hand, i feel like i should wait until after my trip to tell my dad and the rest of my family so they aren't scrambling, worrying, and wondering before i even get off the plane. we all know when people have visitors come from out of town we go out of our way to make them comfortable in every way possible, but like i said, the people i will be staying with shouldn't have to do any extra anything for me, since my biggest concern is being in the way and adding extra stress to an already stressful and confusing situation that i will be walking in on and i don't want them to worry or do anything extra for me. i guess this is the kind of stuff that one will go through quite a few times after their diagnosis with celiac disease. so... how did/would you do it? keep the replies comin!

[Ursa Major]

The e-mail to your dad is a good idea. But instead of hoping that he'll mention and explain it to his family, ASK him to PLEASE explain it to them before you get there, and to tell them not to worry about it, since you'll be bringing your own, safe food. That way they'll know, but won't make a huge fuss over it, and you won't have to do much explaining. And, most importantly, you won't have to deal with feeling ill, and knowing you are damaging your villi again, when they have just started to heal. You don't need that setback!

As for remedies when your stomach aches, I find that a homeopathic remedy called Sepia (you find it in health food stores) is a real live saver for me. I dissolve six little pills under my tongue and it helps my stomach to feel better in a few minutes. If its really bad, I may have to repeat that after a few hours. Sepia is totally safe without any side effects.

[aikiducky]

The best option really would be to stay gluten free on your trip. Thing is, there's a good chance that now that your body has started to get used to being gluten free, you'll have a stronger reaction to it than you used to. You could get really sick, and cause exactly the hassle you want to avoid!

Pauliina

[jthomas88]

I would definitely take my own food. It might make things with your relatives a little easier if you tell them The Doctor has given you a list of foods you can have (along with ways of preparing those foods) and you HAVE to stick to The Doctor's instructions.

In my family, that has made it easier for the more-distant, non-Celiac relatives to accept my DD's condition and help me out with her dining issues the few times we're all together.

(And make sure any food prep/cooking surfaces are really non-gluteny clean before you use them. Doctor's orders, right?)

[plantime]

When I travel to relative's houses, I ALWAYS take my own food. The longer I am without gluten, the more severe my reactions are. 5 days on gluten is a very big deal, and a long time to suffer, not to mention the 6 weeks after of being sick and psychotic. Tell everyone about it, they just might see some of their own illnesses in it!

[watkinson]

It's extremely important that a Celiac stay gluten-free.

Untreated celiacs are prone to getting other autoimune diseases as well as cancer. I have found that the easiest way to tell people is to be completely serious and straight forward. Don't tell them somthing like "I am allergic to wheat" sometimes that feels easier but they just won't get it otherwise.

Stretch the truth about your stomach aches. Tell them that you were having severe stomach pain and nausea for quite awhile, that you saw your doctor, and by a blood test and intestinal biopsy, they determined you have a genetic autoimmune disease called Celiacs. Tell them what Gluten is (a protien in wheat, rye, barley, and oats) and what happens to you if you eat it. Explain that with any autoimmune disease, that the immune system gets screwed up.

In a normal immune system, the antibodies are supposed to attack and kill any bad bacteria, virus or poison that enters the body. When the immune system gets screwed up, the antibodies start to attack our bodies own healthy cells. Like with Multiple sclerosis, the antibodies think that the nervous system is the enemy and start to kill the bodies healthy nerve cells. over a period of years, the hands and feet go numb, then the legs and you end up in a wheel chair, then the vision, hearing , and eventually the brain and death. there is no cure for any anutoimmune disease. They all result in an early death. Except with celiacs!

All we have to do (yes...I said all we have to do) is stay completely gluten-free. The anitbodies in a person with celiacs attack the gluten which looks like the cells of our intestines, so they try to "kill" those too. As long as we stay gluten-free there is not Gluten for the antibodies to come out and attack, therefore the immune system stays normal. If we get one crumb of Gluten the process starts and we get physicl damage along with illness.

When you tell people in this matter, not only do they understand and want to help you, but they usually find it fascinating. I have never had any problem with anyone not understanding, or thinking it's weird, or some fad diet I am on.

Good luck, Wendy

[McDougall]

It's extremely important that a Celiac stay gluten-free.

Untreated celiacs are prone to getting other autoimune diseases as well as cancer. I have found that the easiest way to tell people is to be completely serious and straight forward. Don't tell them somthing like "I am allergic to wheat" sometimes that feels easier but they just won't get it otherwise.

Stretch the truth about your stomach aches. Tell them that you were having severe stomach pain and nausea for quite awhile, that you saw your doctor, and by a blood test and intestinal biopsy, they determined you have a genetic autoimmune disease called Celiacs. Tell them what Gluten is (a protien in wheat, rye, barley, and oats) and what happens to you if you eat it. Explain that with any autoimmune disease, that the immune system gets screwed up.

In a normal immune system, the antibodies are supposed to attack and kill any bad bacteria, virus or poison that enters the body. When the immune system gets screwed up, the antibodies start to attack our bodies own healthy cells. Like with Multiple sclerosis, the antibodies think that the nervous system is the enemy and start to kill the bodies healthy nerve cells. over a period of years, the hands and feet go numb, then the legs and you end up in a wheel chair, then the vision, hearing , and eventually the brain and death. there is no cure for any anutoimmune disease. They all result in an early death. Except with celiacs!

All we have to do (yes...I said all we have to do) is stay completely gluten-free. The anitbodies in a person with celiacs attack the gluten which looks like the cells of our intestines, so they try to "kill" those too. As long as we stay gluten-free there is not Gluten for the antibodies to come out and attack, therefore the immune system stays normal. If we get one crumb of Gluten the process starts and we get physicl damage along with illness.

When you tell people in this matter, not only do they understand and want to help you, but they usually find it fascinating. I have never had any problem with anyone not understanding, or thinking it's weird, or some fad diet I am on.

Good luck, Wendy

I trust my Sister and roomate with my life but not with my food. I prepare all my own food, I don't believe a non celiac could ever understand how careful they must be. Evertime my Sister or Roomate or Outback with their "celiac free" menu cook for me I get sick and it just isn't worth it. Prepare all your own food is my only suggestion.