A Note To My Non-Celiac Dad

[breavenewworld]

Hey Dad-

How was your flight?

Hey I was wondering if I could explain something to you a little more thoroughly than I have...

1. My first thing is: the reason I ask you to please be careful how you phrase things regarding my healing process. For instance, asking for (or making) estimations about my progress - it's tricky because from what I am reading I may be in for a loooooong process, and I hope we can have patience as my body takes as long as it needs to to get back to health. I have no idea what the time frame may be. If God doesn't heal me instantly (which He most certainly could!!) then I'm guessing 3 years - maybe not perfectly healthy at that time, but hopefully way better. So you can see why it would be too hard for me to estimate progress or give accurate observations this early, or at short increments like one week or one month. it's not a straight line- sometimes it doesn't even seem to be directional! haha But I know God is healing me, nonetheless. Anyway, would it be possible not to ask as many questions about rating my progress? Let me know what you think about that idea.

2. Also, it sort of hurts my feelings when mom and you mention things about me eating many other foods than what i'm eating now. The reason being, is it may be a super long time (years and years) and maybe never. A few times it has sounded like you guys assume I'll be able to eat many new foods in a few months. In reality people with food intolerances as severe as mine have to be very careful and some foods never come back. For example, I MIGHT be able to eat a tablespoon of homemade yogurt in April or May, maybe once every few days or so, but maybe not for a year or two. I'm so sorry I didn't explain this very well at the beginning and gave you the impression things would be faster. But I know I'll get there no matter how long it takes! So, I was thinking it could help me out if you could refrain from referring to that "far off day" when I'll be able to eat more variety, because it almost comes across like you may not understand the correct time table (not that there is an exact one, but I guess I just hope you can make similar estimations as I do, instead of much shorter). I know you're not meaning it to sound that way, and you're only being hopeful and you have an intense desire to see your daughter get well, but it almost comes across as insensitive to my feelings about food. It just doesn't help my heart to jump ahead too much - it's best to take it one day at a time and have lots of patience for however long things take.

3. About the "cross contamination" issue with gluten - again I probably didn't explain this very well and I apologize. The reason I have gotten frustrated a few times at your suggestion that maybe in the future I will be less sensitive to gluten is that from what i understand that is not the case for most to all celiacs. I understand that you hope God will alter my condition in that way, and I hope so too!! He certainly could and that's not beyond His Character or ability. But I hope you will also consider what if He doesn't choose to - meaning, this probably isn't just temporary. Like, I may have to remember about door handles and utensils for the rest of my days on earth. since you have never had to avoid a certain microscopic molecule, I can understand that you may not know how it makes someone feel when it's suggested to them that it could be temporary. It makes me feel like it belittles my situation, or like the person just doesn't really understand. it also makes me a little nervous that the person will do something with bread on their hands or touch one of my cooking things thinking it won't be a big deal, or that "the chances are so slim." I've gotten really sick when people take that approach, so I hope you can continue and learn to be "super paranoid" like me about even the smallest gluten. [it was interesting to me that while you were saying that you were making a sandwich and touching trash, fridge, and cubbord handles without noticing, hehe - It's totally fine because I don't touch those when i eat, but it was kind of ironic.] The reason I'd prefer you not say things about one day me not having to be so meticulous is that I need to be ok with the complications of avoiding gluten. I need to know that you're totally on board, not just riding it out until some day when things go back to the old normal - because it's very likely that this is the new normal. sometimes I miss the ease of life that has gone and it's kind of painful when you bring it up like it will happen again. Don't get me wrong, I'm fine with you hoping it will subside, I'm hoping that too so feel free! But I've had to embrace my new way of cooking/eating completely, so I don't get bitter or disdain it. If it changes some day great! but that would be YEARS down the line because of how the immune system works, so right now let's just take one day at a time and be patient while my body's healing.

thanks for hearing me on all this; I hope your trip goes well!

love you SO MUCH

(name removed)

[Gemini]

Hey Dad-

How was your flight?

Hey I was wondering if I could explain something to you a little more thoroughly than I have...

1. My first thing is: the reason I ask you to please be careful how you phrase things regarding my healing process. For instance, asking for (or making) estimations about my progress - it's tricky because from what I am reading I may be in for a loooooong process, and I hope we can have patience as my body takes as long as it needs to to get back to health. I have no idea what the time frame may be. If God doesn't heal me instantly (which He most certainly could!!) then I'm guessing 3 years - maybe not perfectly healthy at that time, but hopefully way better. So you can see why it would be too hard for me to estimate progress or give accurate observations this early, or at short increments like one week or one month. it's not a straight line- sometimes it doesn't even seem to be directional! haha But I know God is healing me, nonetheless. Anyway, would it be possible not to ask as many questions about rating my progress? Let me know what you think about that idea.

2. Also, it sort of hurts my feelings when mom and you mention things about me eating many other foods than what i'm eating now. The reason being, is it may be a super long time (years and years) and maybe never. A few times it has sounded like you guys assume I'll be able to eat many new foods in a few months. In reality people with food intolerances as severe as mine have to be very careful and some foods never come back. For example, I MIGHT be able to eat a tablespoon of homemade yogurt in April or May, maybe once every few days or so, but maybe not for a year or two. I'm so sorry I didn't explain this very well at the beginning and gave you the impression things would be faster. But I know I'll get there no matter how long it takes! So, I was thinking it could help me out if you could refrain from referring to that "far off day" when I'll be able to eat more variety, because it almost comes across like you may not understand the correct time table (not that there is an exact one, but I guess I just hope you can make similar estimations as I do, instead of much shorter). I know you're not meaning it to sound that way, and you're only being hopeful and you have an intense desire to see your daughter get well, but it almost comes across as insensitive to my feelings about food. It just doesn't help my heart to jump ahead too much - it's best to take it one day at a time and have lots of patience for however long things take.

3. About the "cross contamination" issue with gluten - again I probably didn't explain this very well and I apologize. The reason I have gotten frustrated a few times at your suggestion that maybe in the future I will be less sensitive to gluten is that from what i understand that is not the case for most to all celiacs. I understand that you hope God will alter my condition in that way, and I hope so too!! He certainly could and that's not beyond His Character or ability. But I hope you will also consider what if He doesn't choose to - meaning, this probably isn't just temporary. Like, I may have to remember about door handles and utensils for the rest of my days on earth. since you have never had to avoid a certain microscopic molecule, I can understand that you may not know how it makes someone feel when it's suggested to them that it could be temporary. It makes me feel like it belittles my situation, or like the person just doesn't really understand. it also makes me a little nervous that the person will do something with bread on their hands or touch one of my cooking things thinking it won't be a big deal, or that "the chances are so slim." I've gotten really sick when people take that approach, so I hope you can continue and learn to be "super paranoid" like me about even the smallest gluten. [it was interesting to me that while you were saying that you were making a sandwich and touching trash, fridge, and cubbord handles without noticing, hehe - It's totally fine because I don't touch those when i eat, but it was kind of ironic.] The reason I'd prefer you not say things about one day me not having to be so meticulous is that I need to be ok with the complications of avoiding gluten. I need to know that you're totally on board, not just riding it out until some day when things go back to the old normal - because it's very likely that this is the new normal. sometimes I miss the ease of life that has gone and it's kind of painful when you bring it up like it will happen again. Don't get me wrong, I'm fine with you hoping it will subside, I'm hoping that too so feel free! But I've had to embrace my new way of cooking/eating completely, so I don't get bitter or disdain it. If it changes some day great! but that would be YEARS down the line because of how the immune system works, so right now let's just take one day at a time and be patient while my body's healing.

thanks for hearing me on all this; I hope your trip goes well!

love you SO MUCH

(name removed)

The only fault I could find with this letter is that you apologize too much for the way you live your life. I, too, have written letters to my father but mine were about his alcoholism and it's effects on me. I will tell you that letters are a good thing....they allow you to communicate your feelings without making people uncomfortable by addressing the issue face to face. I had tremendous results with my letter to my father about his drinking so I believe this will be good for your relationship with your parents. You did a nice job on this but don't keep apologizing to people with regards to making the diet clear to them. Anyone who loves you will make the effort to learn what is right or wrong concerning living life gluten-free. And, yes, my family are pig-headed and in denial about how many of them actually have Celiac also but they now respect, to a certain degree, what I have to do.....I don't give them any choice. It's one of the hardest things a Celiac has to deal with...the reaction from one's own family can be annoying and disheartening.

Good luck with everything....it sounds like you'll do fine with this....you have a good attitude!

[tarnalberry]

The only fault I could find with this letter is that you apologize too much for the way you live your life. I, too, have written letters to my father but mine were about his alcoholism and it's effects on me. I will tell you that letters are a good thing....they allow you to communicate your feelings without making people uncomfortable by addressing the issue face to face. I had tremendous results with my letter to my father about his drinking so I believe this will be good for your relationship with your parents. You did a nice job on this but don't keep apologizing to people with regards to making the diet clear to them. Anyone who loves you will make the effort to learn what is right or wrong concerning living life gluten-free. And, yes, my family are pig-headed and in denial about how many of them actually have Celiac also but they now respect, to a certain degree, what I have to do.....I don't give them any choice. It's one of the hardest things a Celiac has to deal with...the reaction from one's own family can be annoying and disheartening.

Good luck with everything....it sounds like you'll do fine with this....you have a good attitude!

Same thing. Love the general idea, but "if that's ok with you" and the tone of apology make you sound like you're trying to find a solution that he's good with. You need a solution that YOU are good with. Clearly, I would probably be a little more straightforward (*cough*b%$@#y*cough*) than you, but that's my style. You can be less apologetic, less wishywashy, but still be very polite. A fabulous first draft, though!

[breavenewworld]

hehe

you guys are awesome

thanks i needed to hear that.

[jackay]

I may copy your letter and give it to a few people to read if that is O.K. with you.

What exactly can you eat? I am having such a tough time determining what sits well with me and what is bothering me. I had food intolerance blood tests done and am wondering how accurate they are because many of the foods that are suppose to be acceptable seem to bother me. I feel about the only guaranteed safe thing for me now is water. At least I'm hoping that isn't cc.

[breavenewworld]

yes that's fine to copy it!

i think the IgG panel tests are ok to give you a guideline, but honestly i didn't know what all i react to until i started the specific carb diet and tried things one at a time.

[cleanfreak73]

I think you're going out of your way to explain yourself, you shouldn't have to with your parents but I think it all boils down to ignorance. If people close to you don't bother to research celiac, then it's shame on them. If they would educate themselves (maybe print some articles for them)it would be so much easier for them and you. I think knowledge is power and I feel so much better researching this disease in order to help my daughter cope with it.That's just me though, I try to become an expert on whatever disease I or a loved one may have, it seems to help me a lot.