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Oh The Guilt...

luvs2eat

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luvs2eat Collaborator
luvs2eat
Posted

My middle daughter is having an endoscopy tomorrow... her bloodwork was inconclusive... altho from her symptoms, I'm certain she's a Celiac.

Of all the things to pass on to my kids!!

One got my acne and fibrocystic boobs, one got my tendency toward pilonidal cysts, and the one who loves to bake bread, just like her mother, gets the Celiac. I was really hoping the dilution of their father's Russian/Polish blood might spare them.

How is it that my symptoms didn't show themselves till I was 49 and my daughter is only 25??

I'm sort of going thru the same anguish I did when I was diagnosed 3 years ago!!

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Guest katzmeow21
Guest katzmeow21
Posted
My middle daughter is having an endoscopy tomorrow... her bloodwork was inconclusive... altho from her symptoms, I'm certain she's a Celiac.

Of all the things to pass on to my kids!!

One got my acne and fibrocystic boobs, one got my tendency toward pilonidal cysts, and the one who loves to bake bread, just like her mother, gets the Celiac. I was really hoping the dilution of their father's Russian/Polish blood might spare them.

How is it that my symptoms didn't show themselves till I was 49 and my daughter is only 25??

I'm sort of going thru the same anguish I did when I was diagnosed 3 years ago!!

<{POST_SNAPBACK}>

\

I hear where you are coming from on that one. I was just diagnosed 2 weeks ago and I am 50. My children (2 boys ) I believe they both may have it and will get tested as soon as I get back from vacation... They actually have had symptoms of diarhea, nausea on /off for years, especially the oldest. Actually since the age of 2. I had no clue all these years it could be celiac. I was told by docs IBS and we never looked back.... till now :unsure: I never had anything but constipation all my life with a lot of anxiety kind of stuff and fatigue and then I started getting this weird muscle twitching in my legs, arms, torso on/off and weakness in my legs and arms on/off with achiness in wrists and heals. Also kind of a burning on/off in hands and feet when rubbed the wrong way or too much pressure. Not long lasting and comes and goes. It feels inflamed.. anyway

but no doctor until recently delved down deep enough. I am curious as to what type of symptoms led to your diagnosis .

luvs2eat Collaborator
luvs2eat
Posted
  • Author

My only real symptom was diarrhea (foul smelling and with undigested fat...sorry to be graphic) ... unrelenting for 2 months and maybe occasionally before that. Also, after I ate, I'd sit and listen to what sounded like a tornado in my belly... no pain... just lots of noise.

(edited to add that when I saw my GI for the first time, he asked me if I had any acid reflux and I told him occasionally, but it was always self-induced... from eating too richly or too late in the evening... BUT after I went gluten-free... guess what never happened again??)

My doc treated me for giardia (parasites) while we waited for the bloodwork... that was SUPER positive!! I never even had the endoscopy... I just went gluten-free that day!!

My daughter has the same symptoms... recently unrelenting diarrhea and the other fun aspects. Her blood work was "inconclusive" which I now understand to be in the middle of 3 categories... the first being negative, the middle being inconclusive, and the last being positive... so inconclusive does NOT mean negative.... she has some elevated antibodies.

She's been pushing the gluten for this test (on my recommendation... her doc didn't say a word).

Tonight she's having "blue box mac and cheese" in what I'm certain will be a farewell to gluten!

skoki-mom Explorer
skoki-mom
Posted

I feel your pain. I was just Dx last week, I am 150% asymptomatic (family member has it, I got screened). Anyhow, now I'm paranoid my 4 year old has it. Frequent complaints of tummy aches and on/off diarrhea. I will be sick sick sick if I gave it to her. She goes for her annual check up in a week and I'll request testing then. Think I'll just get my 7 year old screened as well and get it over with. Should be a fun day at the lab with both of them screaming at the top of their lungs. Anyhow, I feel bad because I'm almost 36, I can deal with it....I grew up "normal", I've had 35 birthday cakes, Halloween, Christmas, pizza parties as a teen, you name it. She isn't even 5 yet. I know there are far worse illness you could have, but it is hard for a kid to be different.

Guest Viola
Guest Viola
Posted

I realize it's hard to see our children get this disease from us, however, I don't understand feeling guilty about something we could do nothing about. Most of us had never heard of the disease when we had children, but still suffered through it un-diagnosed.

Perhaps getting past the guilt and finding creative ways to make it easier for them would be more constructive. After all, it really is getting better constantly with new products coming on the market etc. And .. if the children are young enough when they are diagnosed they would simply grow up knowing the stuff they can have, rather than going through the mental stress of loosing all the favorite foods. No cronic disease is easy for anyone, but I think children can be a little more accepting sometimes than adults.

celiac3270 Collaborator
celiac3270
Posted
How is it that my symptoms didn't show themselves till I was 49 and my daughter is only 25??

<{POST_SNAPBACK}>

I an answer that one. Okay, so you had the gene all your life. And you triggered it at age 49 (or beforehand and you just didn't get symptoms and realize it until 49). Triggers can be any number of things. Great amounts of stress, surgery, other intestinal problems, etc.

Your daughter had the gene as well. She triggered it much earlier, though, probably for one of the same reasons... (keep in mind, there are more triggers than this, I just don't remember them all). And there's always a possibility that she developed celiac a few years ago and just started displaying symptoms around the age of 25.

luvs2eat Collaborator
luvs2eat
Posted
  • Author

Thanks for the info, celiac3270, and you're right, of course, Viola... it's just that I hate to see my kids go thru what I've gone thru... and on the other hand... I've said in other threads that, given the horrors that can happen to people on any given day ... this is nothing.

Her endoscopy looked negative. The biopsy will tell... or will it?? told her she should really come here and read the wealth of information. She'll have to choose to continue with the physical symptoms or go gluten-free. She's in a quandry at the moment, even knowing about the higher change of small bowel cancers.

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ianm Apprentice
ianm
Posted

There are many more, much, much worse genetic diseases you could have given them. They will be forced to eat a healthy gluten-free diet. Now why is that a bad thing?

Guest Viola
Guest Viola
Posted

:lol: It's not a bad thing Ianm. I think where most of us get frustrated is dealing with the gluten world and it's people.

And with children, it would be dealing with peer pressure, and there is more than enough of that now I'm sure.

But yes ... there are much worse things, and if more and more of us are diagnosed, but the time these children grow up, perhaps it will be a gluten free world, or at the very least ... equal :rolleyes:

Do we dare to dream?

  • 2 weeks later...
luvs2eat Collaborator
luvs2eat
Posted
  • Author

I dream!! I read an article recently about a restaurant in NYC that serves gluten-free pizza and beer!

Her diagnosis is definite. Luckily she loves to cook... I swear that was my saving grace... knowing how many foods are made and what to avoid at restaurants, etc. It's an ongoing education.

I told her to get herself in here ASAP as this is where the info and answers to questions are!

skoki-mom Explorer
skoki-mom
Posted
I dream!! I read an article recently about a restaurant in NYC that serves gluten-free pizza and beer!

Her diagnosis is definite. Luckily she loves to cook... I swear that was my saving grace... knowing how many foods are made and what to avoid at restaurants, etc. It's an ongoing education.

I told her to get herself in here ASAP as this is where the info and answers to questions are!

<{POST_SNAPBACK}>

Well, while I am sorry to hear your DD has celiac disease, I do hope that the gluten-free diet will help her feel better soon. I like cooking too, and I have seldom relied on packaged/processed type foods. I've always prepared fresh veggies at dinner and cook and season my own meats, so dinner is actually a snap for me because it has been mostly gluten-free for most of my life. I've found that you can leave the bread crumbs out of a lot of things and I just don't cook (obviously) the breaded type stuff anymore. Even my "regular" cookbooks are full of recipes that are just naturally gluten-free so I tend to stick with those so far instead of venturing into the unknown with gluten-free products. I also love baking, and I've had to do a lot of it this week with my DD's birthday on the 7th and back to school. I've made 1 batch of cookies, one regular cake, one gluten-free cake, and a batch of cupcakes! I'm really proud that I haven't cheated at all with all that baking, but I make my own icing and I admit I tasted and tested that quite liberally! (the icing is the best part anyway ;) ). Anyhow, I agree that both knowing how and enjoying cooking do make life easier! I just miss the convenience of throwing a frozen meat pie in the oven on those busy nights (kids activities after school and stuff), so I wind up eating nothing and then pigging out on popcorn later!

luvs2eat Collaborator
luvs2eat
Posted
  • Author

I sent her some Manna from Anna bread mixes... that's been my greatest find so far!!

Interestingly, her doctor told her she was LUCY to be diagnosed at 25 (I wondered if it wasn't like telling the bride it's good luck when it pours rain on her wedding day... ha) because she will avoid many problems in the future by going gluten-free now... like unexplained anemia and osteoporosis.

She's thrilled to hear too that more restaurants are offering gluten-free menus.

Like everyone's said... and I've said in the past... there are so many worse things... this is nothing.

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