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Unsupportive Family B/c No Diagnoses

BrittLoves2Run

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BrittLoves2Run Apprentice
BrittLoves2Run
Posted

For those of you out there that have not yet been diagnosed, or know you have it but can

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pricklypear1971 Community Regular
pricklypear1971
Posted

Well, I've had great support from my husband. My son is coming around (he's 9) especially since he's starting to realize this could include him, too.

My parents are supportive but refuse testing. That said, my mother fiddles with gluten-free.

I did tell one cousin and one aunt about my dx after they were scheduled for gallbladder surgery. One didn't even reply to my email, the other replied and said shed keep it in mind (her sister has Crohn's).

I haven't really "come out" more than that. I'm pretty removed from my extended family now, though. That does make a difference. My FIL lives near us and he's supportive but clueless. My uncle is supportive but lives in another state.

I don't walk around saying "I may be Celiac" or "I may have a problem with gluten". I just state it outright. If you figure out gluten is a problem, you can, too.

BrittLoves2Run Apprentice
BrittLoves2Run
Posted
  • Author

Well, I've had great support from my husband. My son is coming around (he's 9) especially since he's starting to realize this could include him, too.

My parents are supportive but refuse testing. That said, my mother fiddles with gluten-free.

I did tell one cousin and one aunt about my dx after they were scheduled for gallbladder surgery. One didn't even reply to my email, the other replied and said shed keep it in mind (her sister has Crohn's).

I haven't really "come out" more than that. I'm pretty removed from my extended family now, though. That does make a difference. My FIL lives near us and he's supportive but clueless. My uncle is supportive but lives in another state.

I don't walk around saying "I may be Celiac" or "I may have a problem with gluten". I just state it outright. If you figure out gluten is a problem, you can, too.

It's good to hear that you have a husband who supports you. I think the most frustrating thing to me is that I think my mom could have Celiac too. She has a lot of the symptoms and her response was "well if gluten free works for you, i'll give it a shot" but she is always playing down how I always feel like crap and making it out like i'm crazy, and frankly, i'm starting to feel that way. My boyfriend is pretty good. He even goes to the appointments with me when he can. Other than that, the rest of my family might not get it at all except my step dad who is a newly diagnosed with diabetes. He had to change what he was eating and his lifestyle. My work people just seem irritated that I keep having doctor appointment after appointment. I just want to know I have it, then I feel like I don't need to defend myself to others.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

For those of you out there that have not yet been diagnosed, or know you have it but can

butterfl8 Rookie
butterfl8
Posted

I was dx'ed 2.5 years ago. My sister was dx'ed after that, and my mom's testing was messed up so they don't think she has it. She knew better however, and went gluten free. That said, I am the most sensitive person in my family. It took (what felt like) forever for my family to accept that. Things they could eat, like various resturants or from shared cookware, hit me everytime. They just didn't want to see/accept/believe that we weren't all identical. Now they do realize that I have to be more strict, and they don't bother me about it.

So for you, why does your family need to know that you weren't dx'ed? Just tell them you were so that they take it seriously. I have only been asked once if I was dx'ed, by a new GP. She didn't ask for any proof, either. I think when you feel and ARE better after eating gluten-free, those who care will notice. And if they are sceptical before, maybe the results will change their minds. But it still make take a couple of years--both for you to feel better, and for them to realize the change. Hang in there!

-Daisy

grayangel Newbie
grayangel
Posted

Definitely know that you are not alone. I didn't feel the need to have the testing. I had already been through years of being poked and prodded and told that there was nothing wrong with me, that it was just "nerves." After eliminating gluten, I had no doubts whatsoever, and I certainly wasn't going to feel miserable again just so I could have confirmation on a piece of paper from doctors who told me I was fine all along.

My fiance has been wonderful, but beyond that, I can almost always feel the eyes roll when I talk about my "diet" with my parents and my extended family, so I basically stopped talking about it. I'm sure that my mom and my sister are both celiac or intolerant. My mom refuses to change and my sister won't try it because she doesn't think she'll have the support of her fiance. We can only lead the horses to water, but we'll drive ourselves crazy trying to make them drink!

When I find myself feeling more isolated (I even skipped out on holidays this year because I didn't want to deal with it, especially the inquiries about putting my kindergartener on the diet, which has eliminated her asthma btw!) I read this forum, and I take comfort in knowing the person who knows me best, who lives with me every day and has seen the suffering I have endured, is 100% supportive -- and I can't really ask for more than that.

But yes, it does get old, and it does hurt, but we're lucky to have a place to go where so many others understand exactly what we're going through. :)

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