Sad, Frustrated, Need Support

[argybargy]

I went to my doctor for my usual annual checkup, and he said that my liver enzymes were elevated, which could have been about 40 different things, so we started testing for all of them. At test #5 or 6, he hit gluten antibodies, so he sent me for a biopsy. Biopsy came up positive.

 

But all either my GP or the GE could tell me was that I "might" get really sick years down the road.

 

I have a question.....

 

If you had no visible symptoms....why were you tested for Celiac? From everything I've read and what I've gone through personally this isn't a random test that doctors just throw in to see if you have it.

Were there other things that you were experiencing at the time that made the doctor question the possibility of you having it? Not everyone has digestive issues. I'm just curious as to the reason behind the testing in the first place.

 

 

[argybargy]

I can't do this. I simply can't. I have a full time job. I would basically have to not eat in our house. 

 

I mean, I guess I *can* not eat in our house, but how depressing.

 

 

 

I am sorry you are getting no support and there is so much risk of cc for you. If your family isn't being careful, you mught have to make the house gluten-free, and do all the grocery shopping. Get rid of all contaminated spices and cooking/baking supplies, soups and boullions that hav gluten, replace bread and past with gluten-free varieties (Udi's and Silverhills isn't bad), and stock up on yams, potatoes, and rice.  There is no reason in the world that your family needs to eat processed carbs anyways - it is not required for life - so if they won't be careful to keep you healthy, then take all gluten away.

[argybargy]

No actual symptoms. A liver enzyme test result. That's part of why this is so hard to deal with. It's all numbers on charts.

 

Why did a doc test you for Celiac? What symptoms or other illness caused you to be tested?

[argybargy]

Thanks. This is really helpful. I think probably I need to go to the GI guy again and find out how to present this so that she takes it seriously. Also, I think she is now convinced the gluten free diet is making me sick, because all of these symptoms have only appeared after I went on it! But as another one of my friends said, it's the whole digestive process that's freaking out.

 

Our kitchen is a giant explosion of crumbs.

 

Re: Squeeze ... Yeah, and I have all of their albums Especially the old stuff! I guess you could say I feel like I'm really up the junction ...

 

argybargy?  another squeeze fan????!!!!  yay!  it's cool to be a cat-at-at-at    now i must dig through my compact disks....

 

(starving to death, husband whips out a sandwich my brother bought  "sreee hours l8tere"  my grilled cheese is still too hot to cut   what the french.  vanilla....)

 

ok.  we have a shared household - it was touch and go there for a minute.  plenty of explaining about cc <o, my gosh.  you should have seen everybody's jaw drop and the eyes rolling when i told them they had to take out their sandwich meat before they came in contact with any gluten bread!!  they were like YOU HAVE GOT TO BE KIDDING.  nope..  dead serious.  we worked around it, (doesn't work to share, too much forgetting and worrying 'is it good?  arghhhh!!' )   and figured out that i just should have MY OWN packages of meats and cheeses.  i am 3 years in, i don't know how i would have been able to keep trying without my husband's help.  even when i forget, he reminds me:  you should take some (whatever) out for yourself before we put it out for everybody to cc.  

[bartfull]

You CAN do this. And you HAVE TO. If your family won't cooperate you need to get a plastic tote to keep your own dishes and pans in. That way they won't use them. And if you have to get a small one for the fridge to keep your butter, condiments and other foods in, then do it. MAYBE if they see how hard they are making it for you they will get an attack of conscience and stop trying to sabotage you.

[mommy2krj]

I went to my doctor for my usual annual checkup, and he said that my liver enzymes were elevated, which could have been about 40 different things, so we started testing for all of them. At test #5 or 6, he hit gluten antibodies, so he sent me for a biopsy. Biopsy came up positive.

 

But all either my GP or the GE could tell me was that I "might" get really sick years down the road.

Thank you for the explanation. We started on this road because my 6 year old had a stomach ache. A stomach ache that's lasted for over 6 months! Celiac was not on my radar either.

We went gluten free as a household. My husband will eat any gluteny food he wants when he's at work....though I think he would benefit greatly if he went gluten free wholly. My 18 year old daughter has turned up her nose at anything that is normally full of gluten that I have tried making gluten-free. My 15 year old, extremely picky son? He has almost fully embraced it! Just not the veggies. Can't get him to eat veggies for nothing! Gah!

I am finding I have a lot more energy and ability to focus without the gluten. We all were tested with blood work (though not full panels) and we all tested negative except the little guy.

I told everyone we were going gluten-free as a house hold because I couldn't wrap my brain around trying to keep the 6 year old from cross contamination issues. Still having problems with NEIGHBOR kids giving him food. And his sister (who is typically a smart girl and who has a friend that has a sibling with the same issues!) took him to Taco Bell AND McD's yesterday (though he did at least eat a cheeseburger without the bun) and now I have a weepy, crabby 6 year old on my hands that did nothing but cry at swimming lessons today. *sigh*

 

Hugs to you. Maybe go to the library and check out some good books on Celiac (wish I could think of the good ones off the top of my head but I was a bit overwhelmed when I did all my reading) and ask your wife to read them?

 

How old are the kids? Are they more willing to understand that you have an illness to take care of? Old enough to explain to them that leaving this unchecked leads to higher instances of cancer (my teens would understand...but it would scare the crap out of my 6 yr old).

How very frustrating. Maybe have your wife come here and read the Newbie thread?

[notme]

Thanks. This is really helpful. I think probably I need to go to the GI guy again and find out how to present this so that she takes it seriously. Also, I think she is now convinced the gluten free diet is making me sick, because all of these symptoms have only appeared after I went on it! But as another one of my friends said, it's the whole digestive process that's freaking out.

 

Our kitchen is a giant explosion of crumbs.

 

Re: Squeeze ... Yeah, and I have all of their albums Especially the old stuff! I guess you could say I feel like I'm really up the junction ...

yep, it's probably your digestive tract adjusting to your new 'normal' - hopefully it will settle down soon.  in the beginning, you can have gluten withdrawal, and most of us 'grieve' for our old/"illegal" foods and lifestyle.  i'm so sorry you're having such a rough time  try not to let the big picture overwhelm you.  when it comes to living gluten free, this is probably your best resource.  when i was first diagnosed, they said:  congratulations, you have celiac, eat a gluten-free diet, and have a good life.  i kept asking to see a dietician or a nutritionist but i couldn't get an appt for like 3 wks, so my husband found this site and i was able, with the experience and advice of all the people on this forum, to get my act together.  one day at a time, and that's hard to do when you're panicked, but it's true.  you can do it, your family will adjust.  we did it by flying by the seat of our pants at times - YES, I KNOW ABOUT THE CRUMB EXPLOSIONS lolz my grandboys were staying with us at the time and i was constantly "DID YOU TOUCH THIS??"  i don't know why i even ever asked them because i didn't believe them anyway hahahaaa  

 

re:  squeeze - I AM SO JELLY i love all the old stuff, too - i used to have a pretty good collection of their music - on cassette lolz.  now i only have a few songs - def not enough!     i stole them off the interwebs before you could get arrested for it.  i am glad you posted i should look for some stuff on itunes.  (so thanks for being sick, it works out so well for ME <JUST KIDDING!!  trying to make you giggle)  

seriously, we can help you walk through this, hopefully - it may not feel like it now, but it does get easier.  celiac is systemic, which means it affects your whole body.  you may be amazed at what clears up  hang in there, buddy  

 

don't pull that trigger!  don't shooot that singer..............

[1desperateladysaved]

If my kitchen had "gluten crumbs everywhere," I would set up a gluten free kitchen somewhere else in the house or outside. A table works as a countertop.  A huge pot is my sink.  Then, all it takes is an electric plug in skillet and some utensils.   The skillet functions best as a fry pan, but on occasion I have baked potatoes in there. To do that I cover the pan with a lid and put the potatoes on a small cooling rack A crock pot can also be used.  You can get it ready before leaving for work and come home to a cooked dinner.  I also use this quick set up arrangement if I travel.  I keep wanting to take a picture of this, because it really is easy to do. 

[AlwaysLearning]

I felt worse after going gluten free as well, and I am certain I'm not being cross contaminated. For me, it was vitamin deficiencies that were to blame. Get those tested ASAP (easy from just a blood test). Just getting some of them partially back on track has made me feel much better.

When it comes to the family, I think it is time for THEM to make some changes as well. There is absolutely nothing stopping your wife and kids from eating a gluten-free meal every once in a while. And any meal that contains rice or potatoes for starches is a great starting point.

Though it still may take you some time to figure out which brands of premade foods are tasty enough to keep them from balking, they are out there. For instance, you could start only having gluten-free pasta in the house. I personally like bionaturae brand pasta, and I doubt they'd pass up a gluten-free brownie if it were put in front of them. If you're making foods for yourself that are more tempting than what they are eating, they are sure to start to get a little jealous and want to join you.

All of that said, I'll admit that since going gluten free, my mood isn't all that great. Where other people say that it makes them feel more calm, I would use the word "dulled". I think more exercise may be the solution for that for me.

It does sound as if this is going to be tough going for you, at least in the short term until things have settled into a routine. Perhaps some more knowledge about the horrible problems that can be caused by malabsorption and the autoimmune attacks can help motivate you and your wife. And being here on the forum is a great place to start. I swear I learn something new every time I stop by!

[mommy2krj]

Oh yes...the brownies! My goodness...I made a batch of brownies from a gluten free mix for my little guy for at his sister's graduation party. They were gone in a flash...I never even got to try one! So, while I, personally, can't tell you if they're any good....my brother and several teenagers and other people at the graduation party said the brownies were awesome! So, I agree...make them jealous. When they taste the brownies and they're just as good as the "real" thing....maybe they'll realize it isn't so bad. Now...I need to make brownies again so I can have one!

 

I had over half a cake left from the graduation party. From our local bakery that everyone loves. They ate my brownies instead. Hmmm....I made the night for a couple teenage boys when I sent them home with all the extra cake and cupcakes.

[cyclinglady]

Oh yes...the brownies! My goodness...I made a batch of brownies from a gluten free mix for my little guy for at his sister's graduation party. They were gone in a flash...I never even got to try one! So, while I, personally, can't tell you if they're any good....my brother and several teenagers and other people at the graduation party said the brownies were awesome! So, I agree...make them jealous. When they taste the brownies and they're just as good as the "real" thing....maybe they'll realize it isn't so bad. Now...I need to make brownies again so I can have one!

 

I had over half a cake left from the graduation party. From our local bakery that everyone loves. They ate my brownies instead. Hmmm....I made the night for a couple teenage boys when I sent them home with all the extra cake and cupcakes.

Hey, Betty Crocker gluten-free Mix was rated #1 over all mixes here:

 

Open Original Shared Link

 

After I read this article in July on Yahoo, there was a run on this Betty Crocker Mix.  It's really good and handy to be able to get it at a regular grocery store and perfect for those who aren't into serious baking!

[mommy2krj]

Hey, Betty Crocker gluten-free Mix was rated #1 over all mixes here:

 

Open Original Shared Link

 

After I read this article in July on Yahoo, there was a run on this Betty Crocker Mix.  It's really good and handy to be able to get it at a regular grocery store and perfect for those who aren't into serious baking!

Good to know, thanks! I believe the one I used was the Namaste brand. Even the licking of the mixer/bowl was wonderful! Which is all I got. I'm curious to know what the end product tasted like so I will have to get some more. I will also have to try the Betty Crocker one...it's probably cheaper.

[bartfull]

It's been my experience that anything chocolate works better than other flavors, not because it's chocolate, but for some reason the texture comes out better.

[dotsdots]

Lots of good comments.

 

So sorry that you are having a hard time. But the good news is, you are preventing more damage by going gluten free whether you can see it or not. You are preventing cancer, kidney failure, etc., etc. You are giving yourself a chance to live a normal life span.

 

Your kidney stones could conceivably continue to exit your body for a while. They are already in your kidneys from when your body was still taking in gluten and couldn't expel the calcium properly through your stools so it crystallized in your kidneys. But you won't be making any more. Just getting rid of the ones that are already there and haven't moved out yet. So even though it doesn't look like progress, it is. There's more going on than meets the eye.

 

I'm praying your wife will take a look at the literature and realize how dangerous this disease can be if gluten is still consumed. Good luck to you and don't give up!!!