Upset And Worried - Family Doesn't Understand

[TownieHeather]

I'm 25 and I justed diagnosed myself with Gluten Intolerance in August. Since then I've slowly but surely been getting better - but it's one of those you-don't-realize-it-till-you-look-back kind of things. So I've still got some symptoms and can't necessarily tell if I eat a tiny amount of gluten (like crumbs) or if it's something else. Or at least I suspect I can't tell (the last time I clearly reacted to gluten was when I ate a pretty significant amount of it - maybe the equivalent to a few pieces of bread).

In short, I'm healing, and so I'm trying to be super vigilant. However, I'm also jobless and recently moved home with my mom and older brother (who is mildly disabled). I was also never verified as GI or Celiac by an MD because a.) it's obvious to me and b.) if I were I probably wouldn't be able to get health insurance.

But things have been hard here. Mostly due to my older brother our kitchen is almost constantly coated in crumbs - both he and my mother are in the habit of just making food on the counter - especially sandwiches and pizza. My mother has, thankfully, been pretty good about things, even being tolerant in allowing me to go grocery shopping with her, etc. But nonetheless, it's like I have to figure out some way to eat in a kitchen where poisen is drifting around everwhere (we put our clean large pots and pans in the sink which is right next to the bread area, it's hard for me to maintain my own sponge, cutting board, etc .)

I've been trying to slowly explain this to my family, but my brother and I just got into a big argument where he was insisting that I "couldn't be that sensitive - it's just crumbs" because I wouldn't eat the chili my mom made (she had cut the veggies on the same board as the bread). My grandparents and the rest of my family have much the same attitude - "that's stupid - oh, and who diagnosed you? No one? Riiiiiiight"

It makes me so mad. I suffered for a year and have had increasing health problems for years and yet this is how they treat me. This from a man who's been to every kind of psychiatrist and psychologist and still can't figure out what's wrong with him - and my grandparents who have diabetes and digestive problems respectively and thus have their own specific nutrition needs. I've gotten more considerate treatment from friends who have no idea what it is - yet my own family won't even look up information on it on the internet! And then they won't believe me about how serious it is - and how much more serious it could be if it goes untreated!

All this and of course at least of couple of them are probably also GI or celiac.

I just feel like I can't win. I can't get healthy - I can even be respected in their eyes, evidently I'm some kind of nut. I can't eat like a normal person, can't go out and live like a normal person, I'm limited in what kind of job I apply for (I still have orthostatic hyptension so whenever I stand up for too long I don't function well) - and how can I ever expect to find someone to love? If my own family is too annoyed to "put up with" this condition, who in their right mind would marry someone who had it?

Makes me wanna join a convent....

[nmlove]

Wow, a lot's going on with this post. I'm sorry you're having to go through all this. A part of me can understand - to an extent - where your family is coming from. As far as not understanding that even a crumb is too much and just not getting it. But not wanting to learn or be considerate, that's totally wrong in my book. As for cross contamination, my son's dietician put it to us like this: take a piece of bread and cut it into 500 pieces. Just one of those pieces is the max that's safe (based on what level of gluten they can test today because there's no test that goes to zero when testing products). But just that image is amazing to me. As for not getting it completely, I can relate. Before my son was diagnosed my SIL was having a lot of GI issues and eventually went off gluten. When she'd come over she wouldn't eat. I was slightly offended because I was thinking chicken - how's that gluten? But of course now I know to ask what's on the chicken, how's it cooked, etc. I didn't know her that well then so maybe it made it more difficult for her to be upfront about it? Because I wouldn't have minded being educated.

I wish I could give you ideas on how to handle your family but all I can offer is support.

[jststric]

I'm so sorry. I truly think unless people live with it themselves, they simply cannot understand. Since you live there and are unemployed at the moment, why not take it upon yourself to totally reorganize the kitchen? Move pans away from the bread area. Take it upon yourself to clean cabinets and cutting boards before you use them. Better yet, find a place for them in your room! I just had to buy myself a toaster. Fortunately, my husband and son have lived with me long enough to know it's something I need. My inlaws were here and I caught them looking at each other with the slight eye-roll when they saw I had my own toaster. I think the older generation simply don't get it....it wasn't something that was as common in their time and it was probably diagnosed as other things in their day. I suspect your lingering symptoms are caused by cross contamination or glutens in things you simply would never suspect and you aren't thinking to read those ingredients because you think there's no way it would have that sort of thing in it. I have found it in the strangest places. And then the products you are used to need to be checked each time also!! I have had several items move facilities where they are made to one they make other things and suddenly the label will say, "processed in facilities that also handles......", or suddenly the recipe is tweeked and suddenly something is there that wasn't before. If none of those things are discovered........then start looking at other food groups that are common allergens. a MAJORITY of gluten-intolerant folks are also intolerant of other things......milk, or casein, being the most popular probably. Best wishes!!

[nmlove]

I think the older generation simply don't get it....it wasn't something that was as common in their time and it was probably diagnosed as other things in their day.

Yes, so true! Even with my in-laws who are trying to understand for the sake of my son, keep asking "can he have this? Well, what about sugar? I just don't get this."

[tarnalberry]

Not everyone is like this. My inlaws are awesome about it - in their home or mine. (I make my father in law eat his shredded wheat on a tray that is dedicated solely to him, even though they only visit twice a year.) My friends are pretty good about it - at the least understanding, and when they feel they can do it, try cooking for me. My husband may be more cognizant of it then I am! Even my former coworkers, while they might have expressed surprise at the level of concern over cross contamination, respected my decision, even if they thought it was silly. They all know that I'm firm and confident in my decision, and don't care about their input. (Ok, maybe my husband's. But he just makes sure I know about contamination risks I wasn't aware of in new situations. )

I don't expect this is universal, of course, but a big part of it, I think, is that I'm not trying to get people to understand me, believe me, or cooperate with me. I just say "it's how I choose to eat, period", and I do it. I will most definitely NOT eat something that I'm uncertain about, if it's provided by a host, I will express my apologies for the refusal, and generally end with "I just can't risk it."

[mushroom]

I agree with Tiffany. If you can somehow explain to them that every time you put something in your mouth that might have been in contact with gluten (and yes, they will express surprise at this, but be firm about it) you are risking getting sick, then they might begin to understand. Ask them if they would put something in their mouths, knowing there was a 90% chance they were going to catch swine flu from eating it. Do you think they would do it??? Tell them this is how it is for you, except that if you eat gluten you will not only get swine flu but risk getting pneumonia and life-threatening illnesses besides. Then they might begin to understand. Try to explain to them how many other autoimmune diseases flow on from celiac (like diabetes!!! for example, rheumatoid arthritis, lupus, thyroid problems, etc.) and tell them you are not prepared to take that risk because you have the rest of your life ahead of you and you intend to live it to the fullest whether they cooperate with you or not. That is the approach I would take. And then I would also be proactive as Tiffany advocated and make it easy for them to respect your needs. It seems overwhelming at first, but if you show them a way to work with you I think it can be done. You just must be positive and assertive (I know, it's not easy when dealing with one's elders) but if you do it right I believe they will respect you for it. I wish you good luck in finding a way to cope with the situation you find yourself in. But remember, there is always a path through the forest, even if there are no breadcrumbs

[ang1e0251]

I'm sorry you have to live with people that are insensitive but you are going to meet a lot of those in your life. Just keep on with your resolve and ignore them. They put you down because if they recognized how exactly your illness works, they might have to do something about their own health problems. You will meet the right person and he won't care that you are different than other persons, he will love you for it.