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Not Sure I Can Do Much More Of This...:(


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#1 a84c72

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Posted 22 November 2012 - 12:56 PM

As if I don't struggle enough with adjusting to this lifestyle and trying to figure this out (2 weeks out), today was a disaster for me. I, honestly, am ready to give this up because it causes too much grief for others, as well.

We always go to mom's on Thanksgiving and she is very "Type A" about life, in general, and doesn't really pay attention to details and doesn't always remember things I say, etc because her mind is always running a mile a minute.

With trying to be tactful, a few days ago, I asked about the ham and turkey she was planning on having. They are gluten-free. She said potatoes and vegtables, as well...and those gluten-free. I would bring my own gluten-free bread and desert (and choke it down since I don't care for it, as it is...)so i thought we were great.

The only thing gluten free was the ham. The potatoes were some special potatoes that were full of gluten. So as I am trying to hold back tears and find alternatives, my step-father procedes to swear at me as if I am just being "picky" and on some "fad" diet.

I was in awe. I was very upset. Needless to say, even when he "apologized" it was in a loud, insincere way, and I'm probably more hurt than I've ever been in my life. It upset my kids and made my husband frustrated......

And I just can't do much more of this. I still haven't found any gluten-free foods that I actually like but also am not sure how I can live solely on basic meat and vegtables ((I'm insulin resistance so I really have to watch the fruits and, honestly, the carbs, anyway)).

I am unsure how to balance both conditions without starving...

So while I am sitting here, foodless, I am watching everyone else eat pies and ice cream cakes, I'm wondering if this is really worth it. To just avoid a potential "higher risk" of lymphoma and the like? I still sleep numerous hours and a chef I spoke with yesterday told me it took him 6 years to heal.

I'm 40 years old. I want to LIVE my life....not live it frustrated and upset and constantly being ridiculed.

I just don't know how to do it otherwise.

Anyone successfully find happiness with this? I'm failing miserably at it.
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#2 txgal748

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Posted 22 November 2012 - 01:12 PM

Having celiac disease is not easy but it is probably the easiest autoimmune disease to have. You should visit Mark's Daily Apple.
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#3 bartfull

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Posted 22 November 2012 - 01:21 PM

Oh Honey, I am so sorry! Families are the sources of some of the greatest joy in life, but they can also be the sources of the greatest misery.

What you need to do next time, is put your foot down and insist that you are bringing your own food. Even people with the best of intentions can gluten us by accident, but when you are dealing with people who don't pay attention, it is not worth the risk.

It doesn't help that you are so new to this. You are most likely still suffering from gluten withdrawal. That can cause headaches, extreme hunger, and ragged emotions. Can you make yourself a sandwich with your gluten-free bread? If you can have cheese, put some on each side, put some ham in the middle, then pop the whole thing in the micro so the cheese melts.

Now, I'm not sure which gluten-free bread you have, but if you don't like it, try different brands. Canyon Bakehouse San Juan Seven Grain is HEAVENLY, and if you get Udi's, make sure you get the MULTI-GRAIN instead of the white. It has the taste and texture of french bread. Even my non-gluten-free friends love it. As time goes on you will find other gluten-free substitutes that you like. Some are lousy and some are VERY good. You'll just have to experiment.

Now, I'm going to preach at you a bit. NO ONE, I don't care if it is family, friends, spouses, or enemies, has a right to make you feel bad for trying to take care of your health. And YOU can't LET them! As hard as this is right now, it WILL get easier. And ruining your health in an attempt to please others is just plain foolish.

If it was just an elevated risk of lymphoma, well, it would be up to you. But there are so many other horrible conditions that eating gluten can lead to! Gluten ataxia, which mimics MS, rheumatoid arthritis which is SO painful, DH, which they call the suicide rash because the itching and pain are so bad. Continuing to eat gluten can lead to dementia. It can lead to other cancers. And so many other things!

Life is worth living when you feel good. Food is just one small part of enjoying life. You can still enjoy the people you love, sunsets, friendships, hobbies, and all the other things you like about being alive.

And you WILL learn to enjoy gluten-free foods. Meats, veggies, rice, gluten-free breads, gluten-free desserts, nuts, - there are TONS of good things to eat.

Now, go wrap your arms around yourself and give yourself a hug from me. As bad as today has been, I PROMISE, it will get better. And a year from now you will be typing a similar post of encouragment to a newbie here who is hurting and ready to give up.

You are going to be OK. :)
  • 4

gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#4 Celiac Mindwarp

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Posted 22 November 2012 - 02:14 PM

I'm so sorry you had this experience so soon into your diagnosis and gluten-free diet.

Bartfull has given you some great advice.

I am about your age, with family, and 3 months in. It does get easier. I decided a month ago that I could decide how to react to the situation. I will now happily take my own food (which I know I will like) and enjoy the company. I try not to draw attention to the fact what I am doing is different, answer questions politely and move the conversation on.

I am not saying it is easy, but at least I see my family and friends. I just don't make it optional, and say 'while I get used to this new way of eating and keeping myself healthy it is easier to do it like this'.

I sat with friends in a cafe today while they and all our kids had lunch. It was fine. Really. Just make sure you don't do it hungry.

You will find food you like. Some people do find they feel really hungry while they make the transition, even if they love the food.

It will be worth it. Many of us here are happy, honestly :)

The forum is a fantastic place to come to when you need to rant and scream, talk stuff through, get advice and, yes, one day, give advice to others. Probably sooner than you think.

Come back as often as you need to.

Good luck
  • 1
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#5 rosetapper23

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Posted 22 November 2012 - 02:19 PM

Oh, honey, we've ALL been there! I remember my first Thanksgiving after finding out I had celiac. My mom had made sure that the turkey was gluten free, and she'd prepared gluten-free dishes to go along with it. However, after the meal, I became extremely ill....and discovered that she had stuffed the turkey with regular stuffing. She forgot that the gravy would be made from a turkey stuffed with gluten--it just hadn't occurred to her. She felt really bad....but I felt worse. However, as it turned out, my mom was then diagnosed with celiac several months later, and our Thanksgivings are now always gluten-free affairs. Actually, ALL of our family gatherings--regardless of who hosts them--are gluten-free events. You see, my son also has celiac, and my sister's daughter ended up having it, too.

That said, I think your mom's personality sounds a little ADHD to me. That means she could very well have celiac, too. Has she ever considered this possibility? You got it either from your dad or your mom.....so??? If your mother ends up being diagnosed with celiac, I think your stepdad will eventually change his tune. He needs to be educated on this disease. Sometimes all it takes is a bit of education, and then they themselves wonder if they have it--LOL!

I know this diet seems hard now, and I do admit that it took me about two years before I stopped feeling bitter about not being able to eat my favorite things. However, this was in the "Dark Ages" when gluten-free pizzas and sourdough bread didn't exist. Nowadays there are so many more options! Have you tried the gluten-free chocolate chip cookies at Trader Joe's? They're wonderful and contain "real" ingredients. Against the Grain Gourmet baguettes are great, too, and can be found at Whole Foods and other stores. Because you have insulin resistance, you should definitely look into Mark's Daily Apple, as suggested above. The paleo/primal diet would be perfect for you. However, if you feel it's too restrictive, heck, there really are many options for eating like a normal person. I don't feel as though I'm missing out on anything....except for a few occasional rotten experiences at restaurants (who were run by people like your stepdad). Otherwise, I'm perfectly happy with my life and my diet. Believe me--you'll feel this way, too, one day. I agree that today was a disaster, but there will be fewer and fewer such disastrous days--just stand your ground and ensure your OWN happiness.
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#6 Juliebove

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Posted 22 November 2012 - 02:54 PM

Oh yeah. I got this too. My dad is in some sort of rehab and it is not the right place for him but that's another matter. We are waiting to get him into seniior assisted living...a family home but until then he is there because we can't do anything for him at home. He falls and he can't get up. Anyway... Because of this, the rest of my family decided to dine out for Thanksgiving. When I told my mom that we couldn't eat the meal (and I know this because I saw what they were serving), she snapped at me that she was just sick of our diet! So my daughter and I are having a simple and safe meal at home. But we are leaving soon to see the others at the rehab before we eat. and to complicate things, one of my van's healights went out on the way home last night. So just gah!
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#7 tarnalberry

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Posted 22 November 2012 - 03:32 PM

As if I don't struggle enough with adjusting to this lifestyle and trying to figure this out (2 weeks out), today was a disaster for me. I, honestly, am ready to give this up because it causes too much grief for others, as well.


Honestly, YOUR DIET isn't giving grief to others. Their inability to accept, respect, and move on is what is giving them grief. That's their own choice, their own problem. Your health is yours.

But you at at the very beginning of a very big learning curve, if you've not already been fairly used to cooking from scratch. Anything this big takes time to learn. And I don't mean a day or a week or even a month, but a year or more. You are UNLEARNING 40 years of a culture of food and relearning a new one all at the same time. That is a challenge, even if you don't already have a busy life on top of it. It's a really hard challenge if you have people who are trying to serve as roadblocks, or knock you back the other direction.

We always go to mom's on Thanksgiving and she is very "Type A" about life, in general, and doesn't really pay attention to details and doesn't always remember things I say, etc because her mind is always running a mile a minute.

With trying to be tactful, a few days ago, I asked about the ham and turkey she was planning on having. They are gluten-free. She said potatoes and vegtables, as well...and those gluten-free. I would bring my own gluten-free bread and desert (and choke it down since I don't care for it, as it is...)so i thought we were great.

The only thing gluten free was the ham. The potatoes were some special potatoes that were full of gluten.


I'm sorry that you had to learn so very early in this process that "she said those are gluten free" doesn't mean anything. Especially for someone who doesn't know every little ingredient in their food and CARE about every little ingredient in their food. But it's true, you really have to read every label, and read it for yourself. Not to mention be CONFIDENT that the person doing the cooking can avoid cross-contamination issues.

And sometimes, that means your mom can't cook for you any more.

This is where things get tricky in close relationships, of course. Because someone thinks, "you don't love me if you won't let me cook for you", which is, of course, stupid. But it's ingrained in the culture for many, many of us. And so you have to tackle it head on, not try to be passive, or passive-agressive, about it. Saying "I know you love cooking for us. And your food is really great. But I'm not feeling ready to take any sort of risks of contamination. Whether that's paranoid or not, that's my choice right now."

So as I am trying to hold back tears and find alternatives, my step-father procedes to swear at me as if I am just being "picky" and on some "fad" diet.

I was in awe. I was very upset. Needless to say, even when he "apologized" it was in a loud, insincere way, and I'm probably more hurt than I've ever been in my life. It upset my kids and made my husband frustrated......


Mean people are mean. It sucks when it's family members, but mean people are everywhere, so they're bound to show up in our families too, right?

Remember that right now, as tired and fed up with this diet and its restrictions and its changes and complications, you're going to be more sensitive to criticism in that area. That's fair! But, like any sort of criticism, you have to figure out if you're going to let it slide, face it head on, or leave the situation. Those ARE all options, though some are less desirable that others depending on the situation. At the end of it, though, try to remember that you are not "just being picky", and sometimes people are wrong about things.

And I just can't do much more of this. I still haven't found any gluten-free foods that I actually like but also am not sure how I can live solely on basic meat and vegtables ((I'm insulin resistance so I really have to watch the fruits and, honestly, the carbs, anyway)).

I am unsure how to balance both conditions without starving...


Here's where you lost me. You are insulin resistant, so it's hard to live without bread and cookies? Ok, I'm being slightly glib, but if you already have to watch the carbs, then that just makes the prospects of eliminating a major source of them (wheat) all the more important. These are two highly compatible diets! And you can make SOOO much with "basic meat and vegetables", especially if you add in eggs and nuts and seeds and legumes and low-glycemic fruits. I mean, really, you can make A LOT of foods. I would say the bulk of non-bread foods that people eat are made with these items. ;)

For instance, I'm making dinner for 20 for a day-after-thanksgiving dinner tomorrow night. We're having pumpkin soup, green salad with oranges and pomegranate seeds, turkey and gravy, mushroom risotto, apple-cranberry sauce, sauteed garlic green beans, roasted beets and greens, mashed potatoes, baked pears, and apple pie. All of it is easily made gluten free (except the pie crust, which is the only thing that really needs subs). Last weekend we had a dinner party for my birthday and made sushi for 15. I often cook for friends and we've had chicken salads, lentil soup, marinated kebabs, grilled salmon with grilled veggies and sweet potato fries, stir-fry, beef stew, and a bunch of other things I don't remember. But it's all gluten free, and dairy free. With few exceptions ('cause no cook is going to be perfect), everybody loves my food.

I've got a thread in the recipes section with 85 recipes in it - most of them pretty easy to make, most of them taking half an hour or less from start to finish, and all of them gluten free and most dairy free. I tend towards reactive hypoglycemia, so most of them try to be moderate about fat/protein/carb ratios. http://www.celiac.co...-a-few-recipes/ Most of these are actually "I'm hungry; what can I cobble together with stuff out of the fridge".

So while I am sitting here, foodless, I am watching everyone else eat pies and ice cream cakes, I'm wondering if this is really worth it. To just avoid a potential "higher risk" of lymphoma and the like? I still sleep numerous hours and a chef I spoke with yesterday told me it took him 6 years to heal.

I'm 40 years old. I want to LIVE my life....not live it frustrated and upset and constantly being ridiculed.

I just don't know how to do it otherwise.

Anyone successfully find happiness with this? I'm failing miserably at it.


This diet does not have to be hard. But it requires giving yourself the time, patience, and perseverence to learn something new. And unlearn a lot of old stuff. Some of what you have to learn and unlearn is food related (don't eat the bread, read the labels on everything, etc.) but some of it is emotional (learning how to handle frustration, learning how to approach ridicule, leanring how to stand up for yourself, etc.). And I think that throws a lot of folks for a loop when starting the diet. We're told "oh, just eliminate gluten", which is *true*, but so very much not a complete picture.

You find happiness by working through this stuff, and by finding happiness in all those other facets of your life that aren't food - your friends, your hobbies, maybe your work, your relatives, your activities, maybe your pets, and so on. There is a lot to the world that isn't strictly food, though I know it really feels like that at the beginning!

Hang in there, keep reading this forum, and be patient with yourself. You've got a difficult transition, and the most difficult time of year to do it. But you can get there if you keep moving forward.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
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Bellevue, WA

#8 Ollie's Mom

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Posted 23 November 2012 - 06:57 AM

I will start this by saying I'm autistic, so don't have much advice about how to handle your family. What you have described sounds highly disrespectful on their parts, but to be honest stuff like that doesn't bother me. Guess you could say I'm lucky that way.

I did want to tell you that a few months in you will probably find that your tastebuds have changed, and that things that used to sound so good (processed snacks and fast food, for example) just don't smell at all appealing anymore. I used to love kraft dinner, but now the stench of it (yes, it's a definite stench) turns my stomach.

There's a positive side to this in that you will taste "ordinary" foods in a new way. Apples taste fresh and delicious; roasted beets are so sweet and hearty; salads taste delicious without any salad dressing.

Since going gluten-free 3 years ago, my diet is much more varied and I enjoy food much more than I did before. And I'm getting really good at pulling together husband and kid approved meals with whatever I happen to have on hand.

I have dealt with people being obnoxious about my dietary restrictions, but I have noticed now that more often I hear people saying "I wish I ate as well as you" or "your lunch smells terrific" all while they wolf down their stinky whoppers or big macs.

You will get there in time. And this is definitely the place to come for great advice and support.
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#9 DavinaRN

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Posted 24 November 2012 - 06:29 PM

Thanksgiving was 5 weeks for me. During this time, I have found sometimes it is easier to bring your own food. I have brought ham/cheese roll-up into Wendy's to go with chili (informed the person checking me out that I couldn't eat the crackers and what I had brought in, she said that was fine). Have taken my own soy sauce into a Japanese restaurant and asked them not to season my food. At home, I have my own snacks and family better ask before they eat it. As to the insulin resistance, I am type two diabetic and my Endocrinologist told me this diet would help it. I could have fresh fruit and canned/frozen without added sugar.
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Gluten Free since October 2012
Negative blood work, positive dietary response
Endocrinologist offered referral to GI if I needed formal diagnosis to follow the diet, otherwise just pass on wheat, barley & rye
and save my money

#10 Mindala

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Posted 25 November 2012 - 08:35 AM

Quoting Bartfull
"If it was just an elevated risk of lymphoma, well, it would be up to you. But there are so many other horrible conditions that eating gluten can lead to! Gluten ataxia, which mimics MS, rheumatoid arthritis which is SO painful, DH, which they call the suicide rash because the itching and pain are so bad. Continuing to eat gluten can lead to dementia. It can lead to other cancers. And so many other things!"

You should really keep all that in mind when you think about giving in. I'm 38 and have Gluten Ataxia. I have already had a couple mini strokes as a result and I know I'm lucky no permanent damage was done. Celiac could kill me, but I will not let it. I look at food I know has gluten as poison, deadly poison. If it may have gluten I think "well that may be poison". It's not worth the risk. I have no children but as you do when your thinking about caving to peer pressure think about how much your children need you. Personally I just think about the pain and how much I don't want to die anytime soon.

It does get easier, and as you start feeling better you will realize it's worth it.


(((HUGS)))
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#11 tennisman

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Posted 26 November 2012 - 06:16 AM

Having celiac disease is not easy but it is probably the easiest autoimmune disease to have. You should visit Mark's Daily Apple.


I would not agree with that it depends how much celiac disease affects your health , some people go gluten-free and are fine while others go gluten-free and still have lots of problems either way it's not an easy disease to have from my experience.
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#12 tennisman

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Posted 26 November 2012 - 06:23 AM

Sorry to hear that a84c72 . It's horrible and frustrating when people think we are picky or on a fad diet . I hope things will improve soon :)

After being gluten-free for almost 10 years I usually think is it worth it sticking to the diet I think no but really we have too :( It does suck and sometimes it can really make you upset but things will improve and hopefully you will be happy soon :)
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Diagnosed with Coeliac disease in 2003

#13 New Community Member

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Posted 26 November 2012 - 01:38 PM

"Anyone successfully find happiness with this? I'm failing miserably at it."

Like others, have mentioned it will take time to adjust (I'm still adjusting). It's a pain, yes. Not meaning to impose my beliefs on you and I don't know where you stand with regards to faith. But honestly for me, because of my relationship with Jesus Christ, I can still choose joy, even with this dumb disease. I've come to the conclusion that without Him, this life is just not worth living. He's the only reason I can live to face tomorrow, along with all of the challenges living with celiac presents (and that's a lot!). Message me if you'd like to hear more - I would love to share.
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#14 alucard4545

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Posted 26 November 2012 - 02:28 PM

to a84c72,

just wanted to say that you are not alone. I actually got glutened this thanksgiving regardless of serious efforts to prevent it. I have no idea how it happened and the next day I felt sick and was absolutely frustrated and miserable. Hang in there. It will take time, but everyone will understand and accept us eventually, just like they do with pretty much all other diseases. I know we will get there.

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#15 rosetapper23

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Posted 26 November 2012 - 04:26 PM

alucard,

Could it be that you ate something with cinnamon in it? Some cinnamon (especially when bought in bulk) has an anti-clumping ingredient in it that can contain gluten. It's gotten me before!
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