Issues with my dad

[cardine45]

My dad and I have always been pretty close, but he's never entirely understood me and my independence even though he raised me to be independent. Anyhow, I called him after my barium enema yesterday, and he mentioned that he had a similar procedure done recently. He actually had to drink a barium shake (which I think is completely different), and it was because he's been dealing with constant gas and air in his stomach. He's one of those people who doesn't have an overweight body, but more of just an overweight stomach. He has a whole host of other problems including diabetes (controlled with medicine currently), sleep apnea (sleeps with a cpap), and high cholesterol. I don't know if he has any other issues that he hasn't told me about, and I know those things don't necessarily point to CD, but it's possible. I'm not out to diagnose the world and believe everyone has it, but I know that it can be genetic, so I suggested that he have the blood test done. I don't remember what he said to my suggestion, but I can tell you that he meant he won't do it. He said something about not having any stomach issues except for the gas, and even that wasn't that bad. I think if it's bad enough to make a specific doctors appointment over it and go through additional testing, it has to be pretty bad.

My problem isn't that he won't get tested, but it's more that he won't believe me that I have it. I spoke with him again last night so I could give him more details about my appointment, and he said, "well I hope they finally figure out what's wrong with you." WHAT?!?!?!? They already know it's CD, they're doing the additional tests to make sure there aren't any other issues. I had the colonoscopy to make sure there wasn't intestinal cancer or anything like that. The colonoscopy was incomplete due to a stricture which resulted in the barium enema. After I explained this, he said that if they're doing additional testing, they must think the initial diagnosis was wrong. I began to think I was speaking another language. I took a deep breath and a step back, and decided to try another approach. I told him that even if I didn't have a medical diagnosis, wasn't it proof enough that changing my diet made me feel so much better? I thought this would finally prove my point, but I was soooo wrong. He completely went off on a tangent that I was only feeling better because I don't drink anymore. He said he knows I'm not an alcoholic, but alcohol can cause a lot of problems. I've explained before that when I do get out, I have between 1-3 drinks. To top that off, that only happened 1-3 times per month. Even if I was always at the high end of that, and I had 3 drinks 3 times, that means I had 9 drinks per month. How does that make me sick? Again, he said that alcohol causes a lot of issues. I told him that I've been sick since high school, and he knows as well as I do that I didn't drink in high school. His response was that he doesn't think it got bad until I did start drinking. That was when I gave up trying.

I know he cares about me and doesn't want anything bad to ever happen to me, but he's not helping be denying reality. I know most of the people on this forum have dealt with at least one family member who was incredibly difficult with the whole situation, so I'm looking for some tips on how to deal with this. If I can't get him to understand this, then trips to Minnesota are going to be horrible because I'll have to get all of my own food and not trust anything anyone makes. I think my entire family has a hard time understanding allergies because my mother was a hypochondriac and was constantly seeking attention with the new thing she couldn't eat. I remember her eating the same things that she told everyone would make her deathly ill in private when she didn't think anyone was watching or didn't think a small child would notice. Everyone knew she was lying, and I think it put a bad taste in everyone's mouth about the whole thing, and now I'm being punished for it. Before this, I had a nut allergy and I was lactose intolerant, and family meals were horrible because I would ask if there were any ingredients in the food that I couldn't have, and I would get the typical "a little bit won't hurt you." No one else has any allergies except for my sister who is allergic to shellfish and everyone is extremely careful about that one and we rarely eat shellfish anyway.

I love my family to death, but I'm scared to go back to visit. It would be different if I lived close to them, but I live in Michigan, and EVERYONE else is in Minnesota, so trips are always days long and I'm afraid I'll starve to death while I'm there.

I'm sorry this is so long, I just really needed to vent and I need advice on what to do. I've considered a mass e-mail to the entire family with information on what it is, how it works, and what they'll need to do for me, but I'm really afraid they're going to think I'm another version of my mother (who is completely out of the picture, and I'm referring entirely to my dad and his side of the family). Would I be better off just eating my own food for a few days to show them I'm well and then purposely glutening myself by eating their food that they want to give me, and spending my last days in their bathrooms to prove how wrong they are? Grr...

[voix]

I have had my own problems with needing my family to change their behavior for the sake of my health. (My case initially had to do with common chemicals, like cleaning supplies, perfume, hair and body products, candles and air fresheners--they are all actually toxic, but most people don't get an immediate physical response to it. Since being poisoned, I cannot tolerate even minuscule amounts, with enough of it, I could have brain damage. . . so, not unlike gluten in some regards. Now, add gluten on top of that.) Anyway, my family unfortunately made me choose, which is no choice, of course. It was a tragic experience.

However, if your family is otherwise loving and you want to be around them, I would take a pragmatic attitude. You've explained your situation. They've listened and responded. Unfortunately, it wasn't what you wanted to hear.

From a distance and not knowing anyone involved, here is my guess. I would just take care of yourself and not expect anyone to cater to your needs or take any precautions. I wouldn't address it again, and I wouldn't show an attitude. That means, go visit, but when you get there, go to the store and get your own food for the time that you are there and other requirements. When it is meal time, safely prepare your own safe food. Just be very independent about it and matter of fact about it. Almost, like "how weird that people are pretending that you having this disease doesn't exist."

If they ask, just give minimal and friendly answers. Like, if they ask why you are cooking your own meal, then just say, "Oh, my body doesn't break down flour, so I have to eat food without it. I love it, but my body doesn't." End of discussion--next pleasant topic.

I think that as this becomes a matter-of-fact, unchanging behavior (with which you are not seeking attention) then others will eventually come around and accept it and support you. [And if they don't and make snotty comments or contaminate your food or work space--a well-placed, matter-of-fact, "are-you-mentally-ill?" look always give good mileage, as it puts the responsibility back on them, as there is no other interpretation than you have a disease and you need to take care of it.]

You probably want more than that, more support, but changes like these--especially when they involve minute portions--are really hard for some people to accept. Bottom line, you need to take care of yourself, and then probably others will follow suit.

BTW: I happen to think that moderate drinking solves more problems than it creates. Being less uptight, for one. lol. Since my chemical problem, having a couple of drinks is hard because alcohol is initially broken down into acetaldehyde and acetic acid. I was poisoned with formaldehyde, so my body struggles if I have more than one small cocktail. But a nice, fat margarita or a bottle of champagne would have been welcome on many occasions these past few years.

[ostrich]

[Fifi]

I am still having the same issue with my family. Mostly my mother and my husband. I did send e-mails to my whole family with links to articles and NOT 1 person in my family took it seriously. I was trying to protect them, but they wouldn't listen. All I can say is one day when they get sick and find out they have it, Will I say "told you so" probably not, but I sure will be thinking it. When I go to my Mom's house for the weekend, I always bring my own food. then I cook and let her eat my food. she has liked most of it so far. But they just don't want to change. Just be patient and do what you have to do. Some of your family may never get it. I know the comments are hard but you just need to let them slide off you. As long as you feel better thats all that matters.