Why Can't People Understand?

[RideAllWays]

My first venting session...bear with me please!

I've been gluten-free since february after being diagnosed with celiac, and I believe I've had it my whole life. I was always, always sick and nobody could figure out why. I was feeling better after finally figuring out the diet change in about april-may, but now I've been feeling really sick again lately. Especially at this very moment. I've been dairy-free for three years and I'm wondering if I'm also reacting to corn...I just ate a corn tortilla about an hour ago, and I threw up after eating corn flakes (a gluten-free brand) two days ago. Hm.

My parents just don't understand. They think that "only a little bit can't hurt", and that cc isn't really an issue. They think I'm being anti-social when I am wary about going to restaurants, and I can tell that they are embarrassed by me when I have to make special orders to have my food as safe as possible. It's not like I WANT to do this! I went out and bough my own knives, toaster, cutting board and strainer, and they think I'm being OCD about it. They just don't understand how sick I feel when I do come in contact with gluten. Is it all in my head? Do I really need to be this careful?

My mom also thinks that my only symptoms should be either throwing up or D, which is what I always get with a reaction. But I also get intense headaches, I have passed out a few times, and I feel extremely lethargic and fatigued. How do you guys explain to people what's going on? I'm especially nervous about university in september, and explain the importance of celiac to my room mates.

Sorry for the novel. I'd love to hear your stories as well.

[MySuicidalTurtle]

I always react to corn tortilla/taco shells. Maybe you had cross-contaminated ones?

ALWAYS be careful at restaurants if you are eating. It is only socially awkward when people around you treat you like an oddball for being having an auto-immune disorder. I wouldn't eat around those types.

When I was in college, I would just say, "I have a genetic auto-immune disorder. If I eat wheat, gluten, barley, rye, oats (I include dairy since I can't have casein) I have an auto-immune reaction. In order to be healthy, I have to eat special foods and make sure that my food is separate and never touches that with gluten in it."

You could tell them that you are not being picky, controlling, or obsessive and compulsive. You need your food separate for medical reasons but that it doesn't mean you can't partake in food-related fun. If you know ahead of time, you can make your own in a gluten-free option or have it all gluten-free.

About headache, my Mom would have the worst migraines before being gluten-free.

Good luck!

[ravenwoodglass]

They don't understand because they haven't learned enough about it. You being their child makes it hard for you to teach them, just like teens don't always listen to the wisdom of the words of their elders, it works both ways. If you can get them to come here and read some posts on CC issues, the hassle and danger of restaurants, the different symptoms and how to cope it might help. Could your parents go with you to the doctor that diagnosed you? If the doctor is knowledgeable (not all are many are clueless beyond 'the bloodwork/biopsy were postive) perhaps he/she could help. You could also try printing out some good info and see if they will read it. Here is a link to the NIH's celiac awareness campaign site as a start.

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[darlindeb25]

It also is very difficult for most people to understnad that which does not effect them personally. When a person looks perfectly normal, and yet has neuropathy, which can be very painful, or total numbness...others do not understand, because they can't see anything wrong. Once they suffer it, then it's another thing.

This is still new to them too. It is good advice to get them to come here, yet if they won't, maybe get them some books to read on the subject. A book written by Dr. Stephen Wangen, called "Healthier Without Wheat" is very good, and it may help them to understand.

[jststric]

I would agree with the statement that if they don't live it themselves, they simply cannot understand. My husband, try as he might, DOES get it, but every so often even he lapses, lol. I'm 50 and only had my issues about 3 yrs now and I had to go tend to my father while he was dying and my mother simply could not understand either. She thought I was making some of it up. Then she would tell anyone that invited me out for dinner that I couldn't go to restaurants at all. I must have explained 100x's that I could, if I was picky about which ones, what I ordered and that I needed to usually make special requests. That was too embarrassing for her, I guess. In the end, be as OCD as you need to be, lol!!! YOU are the one that has to live with the consequences and even if no one can see your consequences, you feel it. I do believe we need to keep trying to educate people though because when 1:100 or so people suffer (and it seems more and more people are being affected) then its not an unusual problem anymore!! We just need to get the word out and demanding options of restaurants and the food industries as a whole!!

[ranger]

My family was sceptical at first but I think it was my determination to stick to the diet and refuse to be budged by what anyone thaught. They are now very supportive. When I think about it, I was scepyical at first. It took several months of going on and off the diet to convince me that I had to go gluten free, so I guess I can't blame them. Just stick to your guns - they'll come around.

[Googles]

As to dealing with family I found it very hard at first and I'm living across the country from them (I just turned 26). My dad especially always wants to be right about everything. He wanted to be able to be right about this too. He did the whole "but a little bit will be okay". I had to be like, "well since I am the one reading about it this is what I'm finding." The next time I talked to him he had gone out a read a lot about it and had all these facts he wanted to share with me about it. Is it possible you could get your parents a book about it for them to read or send them to a medical website that has information about cross contamination and the strictness of the diet? I sent my dad to the Mayo Clinic Website as I felt it would be reputable in his eyes and goes over issues of lifestyle change and cross contamination. My mom was the other way. She was like, whatever you need is fine but I don't want to take the energy to know everything about it. If you can provide them with a source that isn't you (like other posters said it is hard for parents to hear this thing from their child) they might take it more seriously. Also, they may be in denial about your diagnosis. While changing the diet has (until recently) made you feel better, they might be in denial that their "little baby" has this disease that you will have to deal with for the rest of your life. Since it is genetic they might be feeling guilty also. (my family has a number of genetic disorders and I know my parents feel bad to a certain extent that they passed them on even though they can't help it). Good luck with your parents and university in the fall.

[jensey]

Until I had symptoms I didn't get it COMPLETELY either but I learned about it because my job is in a bakery. I "UNDERSTOOD" that people couldn't eat gluten and that if it wasn't prepared in a gluten free environment it wasn't TRULY gluten free. A friend of mine has a mother who has been diagnosed W/celiac disease for over 20 years and she still has a hard time accepting the stringent way her Mom/Celiacs should have their food prepared. When I was diagnosed she wondered how strict I would have to be. I have found that I have to be EXTREMELY STRICT. I hope to talk to her soon to explain what I have learned and help her grasp the importance of being that strict. I believe if we who have celiac disease want to avoid more and likely progressively worse health issues for ourselves we have to be OCD strict when it comes to what we put into our bodies, no if's and's or but's. The most important thing I discovered and that I think most should understand is that EVERY TIME a person with celiac disease eats gluten they do DAMAGE to their digestive system.

My Dad had symptoms for years and I only found that out while I was trying to determine what was causing me to have constant D, besides dairy...dairy was an easy one to figure out, and I am pretty certain that was caused because I ignored my celiac disease symptoms as long as I did. Pops was diagnosed awhile before me. The week I got my blood results confirming I have Celiac, my Dad got the results of a gene test that showed he has BOTH genes that are associated with the disease, he also found out that along with a dairy allergy he has developed an allergy to soy as well. Do either of your parents have any digestive issues?

It sounds like you have developed yet another allergy which, from what I have read is very common. Do your best to vary your diet as much as possible and really try to prep all your food yourself. I used to eat out all the time and have concluded that with this disease it really is not a good idea overall, once in awhile maybe, but I try not to. It's been quite a change for me.

I think when you go off to school it may actually be a little easier to SOME extent, you will have the chance to educate people and I bet you will find some folks who know someone afflicted with the disease. If you will be staying in a dorm the kitchen staff will likely have to be educated and make proper arrangements for your dietary needs. If you are going to be living with roommates in an apartment do your best to screen possible roommates, heck maybe you can find someone who is majoring in nutrition and you can give them an inside edge to the Celiac world, hehe.

I agree with one of the other folks who replied who said you should tell your parents to read some forums on here or the other site they mentioned. I learned so much from reading here that even if I didn't have it myself I would have a much better understanding of what Celiacs go through.

Sorry for MY novel. I am sorry that you are not getting the kind of support one hopes for from their family, I hope that changes. I wish you well! Good luck!