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I Can't Do This


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#31 cassP

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Posted 02 April 2011 - 09:49 PM

My husband likes to eat out, a lot. It would be almost impossible to resist bread when everyone else at the table is eating it - and it's my favorite thing on the menu. Also I'm guessing it would be very hard to eat vegetarian and gluten-free in a restaurant. I could have salad, potato and a vegetable. In the past I would usually have a pasta or a grilled cheese sandwich. Grilled cheese is my favorite. Tonight we have dinner scheduled with friends at my very favorite Italian restaurant - it's been months since I've eaten there.

well, u would not believe the grilled cheese sandwich i had last week!!!!!! it was UNBELIEVABLE!!! i used Rudi's gluten-free multigrain bread with Irish white cheddar & mozzarella & sliced onion... i then sauteed spinach with evoo, garlic & TOMATO PASTE... dipped the sandwich in the spinach & tomato- OMG... i am not kidding- it was ORGA$mic :o

anyways- the inconvenience SOMETIMES at restaurants can be a pain- but really- the gluten-free diet can be extremely delicious- seriously!!

im sure it must be difficult to be a vegetarian AND gluten-free (i am a big meat eater- for health reasons. but i totally respect and understand the animal thing- if i could be healthy not eating them, i would). but- there are LOTS of people out there eating vegetarian & gluten-free. (bill clinton being one of them). also- u should look up this gal:
http://glutenfreegoddess.blogspot.com/
all of her stuff is gluten-free, and i THINK it's all vegetarian (some vegan). her stuff looks YUMM. i made her Chocolate Trufle cake the other day - it was DELISH :P

and Fyi- if you continue to eat gluten- it will wreak havoc on your thyroid even more. and the celiac will end up giving u vitamin & mineral deficiencies.. leading to everything from Dementia to Osteoporosis.. gall bladder disease, and the inflammation could lead u to heart disease...

i hope u really think about this seriously
  • 2
1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

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#32 Takala

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Posted 03 April 2011 - 12:09 AM

Are you residing in one of these gluten free culinary wasteland areas for restaurant selection, or as my husband came up with decades ago, a "no pancakes zone ?" (this was in the rural, rural midwest where we travelled very early in the day, were starving for a lunch, and then couldn't find a freaking restaurant for 40 miles that was open. )


The last time I had pasta out, recently, was off the gluten free menu at the Old Spaghetti Factory. They use rice pasta with their sauces. They also serve a small gluten free salad and ice cream for desert. I guess if I wanted bread, I would bring some with me, and I had some in the car because we had made the run to the gluten free bakery which is about an hour and 20 minutes from where we live, and stocked up on some stuff. The restaurant was on the way home. I mostly bake my own, but once in a while this is worth the drive to get treats, and the luxury of pointing to the display case and somebody else has done it. I learned of these places by using google to search for gluten free vendors, bakeries, and restaurants, and I have a lot of blog reviews bookmarked. Because we live in CA, there are also some places that are serving vegan and vegetarian gluten free options also, if you are willing to drive.

(And of course, I made grilled cheese sandwiches and homemade soup with that bakery made gluten free bread the next day.)

If you husband has a "sensitive" stomach maybe he should try it, also, as I can eat almost anything spicy as long as it's gluten free. My spouse eats gluten free at home, he cooks, too.

You can always mail order gluten free foods if you are not within driving distance. You can always dash off a gluten free bun in a cup in the microwave in a few minutes, for a quick bread. There are also gluten free mixes that you just add liquids to, and can bake in a loaf pan or in a bread machine, if you are not into experimenting. And they can be made vegan if you insist. (you may want to reconsider eggs, which will make life easier and add protein). This is not the end of bread, it's more of a retro thing as to how people used to do food - by cooking it.

When we travel, we always pack a little cooler with gluten free food "just in case" we get stuck somewhere. And I don't go into a restaurant starving hungry. I drink water and have a little handful of something, to take the edge off, if we have been doing exercise or something. I also try not to go into one where I must be absolutely 100% the next day, just in case I get cross contaminated, it's only happened once badly, but it was a doozy right on the eve of a holiday. Won't do that again.


I was so sick, and self diagnosed based on symptoms and am very highly motivated to stick to it, because I get ataxia balance problems, and arthritis flare ups (the idjiots tried to call it fibro) and bad back pain and kidney problems and eye problems if I eat gluten. I had the endo and fibroids and cysts from ****, too. I think my thyroid's slow, but I don't test out that way, but of course, I never tested out for the blood tests for gluten antibodies high enough, either. I currently have a PCP which bemusedly accepts my self diagnosis after I told him I hadn't eaten it in "x" years (I forget, I think it was 3 or 4 at the time) and he(( would freeze over before I did it again.

One of the symptoms of being glutened, is to want to continue to be glutened. Some people also get intense sugar and carb cravings, but that is a transition phase and can be helped by gluten free B complex vitamins and calcium and magnesium supplements - you are malnourished from the damage, and your body says this blood calcium imbalance feels like a sugar craving. Can't imagine anybody wanting their bones to look like mine did by the time I was in my late 20's- early 30's. Ugh.
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#33 mikyraso

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Posted 05 April 2011 - 05:28 AM

[recipes. In the meantime, Indian and Mexican food are generally good places to start.

I wanted to ask you some questions about going out to eat. I am a newly self diagnosed celiac disease and I am just dying to go out to eat and feel normal again.
I LOVE MExican food but I am scared to go out to eat because of CC. I have a favorite Mex. Rest. but I just don't know what to ask when ordering or what foods would be the safest to order. My 6yr old DD was diagnosed just 2 months ago and we did go out for the FIRST time a couple of weeks ago. I think that she and got some gluten, or was CC, when I thought, after looking at the allergy sheets it was ok for her . That really scared me so I have been avoiding restaurants altogether. I could really use some help .
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#34 ciavyn

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Posted 05 April 2011 - 06:08 AM

I have read through your honest emotions, OP, and the responses here. I wonder if anyone might agree that we have placed way too much importance and control in the hands of our obsessions. It’s just food! I say this as someone with an eating disorder. I am slowly breaking free from this, but it’s taken years.
But my initial impression, Newbie, is to ask if you have had some psychological counseling? You have been through a hellish ordeal, and as I read your posts, the pain of it is leaking through. I strongly suggest attending some therapy if you aren’t already. We are all a work in progress, and I recently had to return after many years on my own (mentally) to work on some more of the toxic crap that can get churned up in our heads. So I hope you will consider this, as I know what it is to go through hell and feel like nothing ever gets better.

The other thing to consider: do you like your life? What is it worth to you? Is it really worth bread? Is that the value you would place on it? If so, please see my second paragraph. :) Remember that we’ve all been there. We had to grieve the loss of our favorite foods too. But when someone hands you what might be the answer to all of your health issues – certainly several of them – and your response is, I’d rather have a roll, it’s time to gain some perspective. Again, I think you’ve been through so much BLEEP in your life that you are just overwhelmed with one more thing. But this “one more thing” might be an answer you’ve been waiting for.

Reality is, bread doesn’t taste as good as you think it does. It’s just one food. And given your diet, it would do you some good to add in some new foods! Yes, bread is yummy, but it’s just bread. It’s not ambrosia. If you start enjoying some gluten-free bread options – homemade ones – you will find that you have never truly tasted the joy of bread. The mixture of grains and textures will blow your mind.

Start really digging into your vegetarian diet, and if your husband is unhappy with your choices, don’t go to dinner with him. Why should you have to be miserable so he is happy? How does that even make sense? You are an individual. If he cannot – or chooses not – to respect that, let him go his way with his food, and you can call up a girlfriend who cares and go to a different restaurant. I went through something a little bit like you did, and quite honestly, I stopped caring. I wanted to feel good. So if he didn’t like it, that was his issue. I now am divorced and dating someone who goes out of his way to ensure that I can remain healthy and still enjoy eating out together. What a change! But you must put yourself first, and enjoy your life. Do not let food, or anyone else, take that away from you.

I honestly hope you can see how valuable you are as a person, and that it doesn’t have to surround food. You clearly have passions in life – your issues with factory farming, for example. Put your focus there, and let food be the fuel to get you where you want to be, not the pit-stop that you never leave.
  • 1
Gluten free: Nov. 2009
Peanut and dairy free: Dec. 2009
Rediscovered dairy: March 2010 (in small quantities)
Peanuts added back: June 2010 (in small quantities)

#35 IrishHeart

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Posted 05 April 2011 - 06:16 AM

I have read through your honest emotions, OP, and the responses here. I wonder if anyone might agree that we have placed way too much importance and control in the hands of our obsessions. Its just food! I say this as someone with an eating disorder. I am slowly breaking free from this, but its taken years.
But my initial impression, Newbie, is to ask if you have had some psychological counseling? You have been through a hellish ordeal, and as I read your posts, the pain of it is leaking through. I strongly suggest attending some therapy if you arent already. We are all a work in progress, and I recently had to return after many years on my own (mentally) to work on some more of the toxic crap that can get churned up in our heads. So I hope you will consider this, as I know what it is to go through hell and feel like nothing ever gets better.

The other thing to consider: do you like your life? What is it worth to you? Is it really worth bread? Is that the value you would place on it? If so, please see my second paragraph. :) Remember that weve all been there. We had to grieve the loss of our favorite foods too. But when someone hands you what might be the answer to all of your health issues certainly several of them and your response is, Id rather have a roll, its time to gain some perspective. Again, I think youve been through so much BLEEP in your life that you are just overwhelmed with one more thing. But this one more thing might be an answer youve been waiting for.

Reality is, bread doesnt taste as good as you think it does. Its just one food. And given your diet, it would do you some good to add in some new foods! Yes, bread is yummy, but its just bread. Its not ambrosia. If you start enjoying some gluten-free bread options homemade ones you will find that you have never truly tasted the joy of bread. The mixture of grains and textures will blow your mind.

Start really digging into your vegetarian diet, and if your husband is unhappy with your choices, dont go to dinner with him. Why should you have to be miserable so he is happy? How does that even make sense? You are an individual. If he cannot or chooses not to respect that, let him go his way with his food, and you can call up a girlfriend who cares and go to a different restaurant. I went through something a little bit like you did, and quite honestly, I stopped caring. I wanted to feel good. So if he didnt like it, that was his issue. I now am divorced and dating someone who goes out of his way to ensure that I can remain healthy and still enjoy eating out together. What a change! But you must put yourself first, and enjoy your life. Do not let food, or anyone else, take that away from you.

I honestly hope you can see how valuable you are as a person, and that it doesnt have to surround food. You clearly have passions in life your issues with factory farming, for example. Put your focus there, and let food be the fuel to get you where you want to be, not the pit-stop that you never leave.



Amen to all that, sister!! Newbie, please hear all our suggestions--offered with genuine concern-- and feel better soon!
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#36 Kate79

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Posted 05 April 2011 - 06:41 AM

My husband likes to eat out, a lot. It would be almost impossible to resist bread when everyone else at the table is eating it - and it's my favorite thing on the menu. Also I'm guessing it would be very hard to eat vegetarian and gluten-free in a restaurant. I could have salad, potato and a vegetable. In the past I would usually have a pasta or a grilled cheese sandwich. Grilled cheese is my favorite. Tonight we have dinner scheduled with friends at my very favorite Italian restaurant - it's been months since I've eaten there.


Tons of places have gluten-free options, including many Italian restaurants. Quite a few are starting to offer a gluten free menu online or at the restaurant. Some places will accommodate gluten free requests if you call ahead. I don't know where you live, but I encourage you to google 'gluten free restaurants' in your area and see what comes up. There are several chain restaurants that have become more sensitive to the gluten issue, too. You may be surprised with what you find. I'm lucky to have a really good Italian restaurant near me with a full gluten-free menu. Mexican and Indian offer a lot of choices, too, and are veggie-friendly. I'm not a vegetarian, but I do eat that way pretty often, and it is possible to do both with a little extra planning.

Also - this isn't ideal, but if your husband insists on eating at restaurants that can't do gluten free and you want to go with, you can always eat at home before going out. I've done this a few times at family functions where I wasn't sure that the restaurant could accommodate me. Hopefully you can find places that will work for you, but if not, eat a big plate of gluten free pasta & fresh bread before you go, and then have a salad and a drink at the restaurant. And you could bring your own bread, too.

I really encourage you to at least try eliminating gluten for a few weeks and see if you start to feel better. For me, it happened in a few days and I'd never go back. There's also a lot of celiac support groups out there that you might want to check out. There's one near me that has outings to restaurants, which is a great way to meet people and also see what's available in your area. Meet some gluten free folks and eat with them - and let your husband eat out wherever he wants with his friends.
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#37 NewbieMarch2011

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Posted 05 April 2011 - 12:10 PM

Sorry - I was away for a few days. I am overwhelmed by all of you that have taken your time to respond to my post with so many helpful thoughts. Thank you!!! I am going to respond to a bunch of different people all at once here:

OMG - Pancakes! I make the best pancakes in the world. Not trying to boast, but I found the best recipe and use the best ingredients and anyone who has ever tried my pancakes agrees they are the best. Restaurant pancakes just cannot compare. I usually make chocolate chip pancakes - which are our favorite. If I go gluten-free, my pancakes are one of the things I will miss the most - and my husband is still going to want them. Making them and not eating any would be very hard.

As far as my vegetarianism - I do eat eggs and cheese - but no meat, chicken or seafood. My rule is that if it blinks or sh*ts - I don't eat it.

As far as counseling goes - I do go to counseling regularly. And I have been through a lot - way more than I've gone into here. I do have my passions. But I also have some mental issues. There - I've said it. It's like the last taboo. People will talk about the most intimate details of their lives - but no one admits to having mental health issues. I am here in this life to love and take care of my kitties. Other than that - I could leave this world tomorrow. While I am here I try to make the world a better place. I do charity work to help animals. This celiac diagnosis (biopsy and bloodwork) has filled me with apprehension and confusion and a feeling of being overwhelmed.
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#38 IrishHeart

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Posted 05 April 2011 - 01:59 PM

Oh, but Newbie, you can have pancakes again--you just have use different flours, that's all! I promise you, it's going to be okay!!

Of course you are filled with apprehension and feel overwhelmed. WE ALL DID...some still do!

Your depression--is part of this disease!!! It's listed as one of the top symptoms. We all TALK about IT on here!! Not taboo at all!!

I am going to personal messenger you a list of symptoms so you can see how all of yours fit in and how they can be relieved by getting rid of the gluten.

HERE IS WHY depression and anxiety occur with celiac disease...it affects your brain function. Gluten acts as a neurotoxin, plus, the villi are atrophied in your gut, which means you do not absorb essential nutrients and vitamins, which leads to malnutrition. That is what Celiac is---a disease of malnutrition!

Depression and anxiety also result because you are not producing the neurotransmitters of seratonin and dopamine. And I am sorry, but being a vegetarian AND a celiac makes you susceptible to B-12 and Folate deficiencies and those cause a deficiency in those neurotransmitters as well and result in major depression.

You need to have your B-12, folate and iron, D-3 and thyroid levels tested right away and supplement if you are low. Your statement about leaving this world tells me you are in a lot of emotional torment and I am betting you are at least---anemic.

A whole slew of factors contribute to your depression, not just your life experiences.

WHAT I AM TELLING YOU IS...This depression could LIFT from you if you just follow the gluten-free diet!!!

Your therapy is a VERY good thing, but THIS gluten-free diet is a Major key to getting you well--physically, emotionally, mentally. In fact, please tell your therapist you have been diagnosed, so she/he can see how this is part of the problem.

Please hear me out....I felt the same way you do. I felt desperate and overwhelmed and depressed since becoming very ill. I had some depression after my many miscarriages (no children), but generally went on with my life. I was okay, but started going downhill physically. Heard the fibro rap, the IBS rap, etc....
Then, I got really sick with celiac disease and lost 90 lbs, rapidly... developed all the symptoms I told you about in my earlier post. I KNEW in my heart something was keeping me ill and feeling like death would be better than this. Why would I talk this way? I have a fantastic husband now, after a lousy divorce, etc...basically, a happy life!

Then ,I developed severe pain...Yet, I refused to succumb to the depression. I developed anxiety out of nowhere! things felt very "dark" and I was scared I was losing my mind. I went to a psychiatrist to ask what the heck was going on.. it was she, in fact, who talked with me at great length, helped me with my grief after losing my dad and then, took my concerns seriously. I asked her...why was I still feeling so LOW, I wanted to know. SHE suggested food intolerances to me---and I started researching---and here I am.

here's the good part...
In 3 months, my depression is lifting, the anxiety is vanishing and ONLY reappears when I have been glutened accidentally. I am no longer sleep-walking in sadness and misery through my own life. I was really bad---unable to concentrate or even drive my car anymore. there is more, but I'll cut to the chase... My brain was seriously impacted by this disease, yet it is clearing out. (I take no medications for depression.) I am telling you ....THIS IS PROOF that gluten makes this gloom and doom happen.

Read all the posts on here of what happens when people are glutened..they CRY, fall apart, feel agitated and overwhelmed..I have to battle the depression and fear because I am in constant muscle/joint/bone pain and cannot take meds, but I KNOW WHY I feel this way. I know it will only get better and better as I heal in my gut.

I have been through a lot of sadness and loss myself, and I know how difficult it is, but I am pleading with you to give this gluten free diet a chance because MANY people on here will tell you the same thing---depression lifts when you are not continuing the autoimmune assault on your body with the gluten. One woman told us she was diagnosed with bi-polar and is now, perfectly fine.

Wouldn't you like to be free of that dark cloud once and for all? That "fibromylagia" pain and live a full, happy life?? I applaud your charitable work with animals. I adore them too.

I am really begging you to give yourself the opportunity to be rid of that depressive thinking.

Here is your chance. You can do this. We can help. It is an adjustment to cooking and eating gluten-free, but it is NOT a death sentence, it is a LIFE giver. :)

Now, how can we help??? :)
  • 1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#39 fattycat

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Posted 05 April 2011 - 05:45 PM

IrishHeart really said it all but, I remember gluten free pancakes from about 10 years ago. My mom sent me a box and it weighed a ton! Then we made it up...you needed a cup and a half of oil to make one batch!!! lol Prepackaged gluten free foods have come a long way but even better is the availability of a variety of flours. There are plenty of places that deliver world wide. It's taken some trial and error but we now have a reciepe that tastes the same as our old "normal" pancakes.

And I get depressed too if I have gluten. My brain is a mess, I cant put thoughts together, I feel overwhelmed, cant say what I'm thinking, get depressed and start crying for no reason. I've accused my incredibly loving husband of not caring about me. I get terrified that he is going to leave me. Same thing happens with MSG. Since going gluten free I am probably the most relaxed I have been in my life.
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#40 ciavyn

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Posted 06 April 2011 - 05:34 AM

Newbie: I'm so glad to hear that you are joining the rest of us in talking with a professional and publicly here about mental health! Here, here! :) In exchange: I have ADD (much better now gluten-free), depression issues involving suicidal tendencies (thankfully relieved for now), PTSD, and an anxiety disorder. I call them "Jumbled Letters." They mean only the power I choose to give them. :)

Girlfriend, you and I must put on a pancake competition. I make some pretty awesome ones too! I switched over to Pamela's mix, then to Bisquick gluten-free. Both are very tasty. I add chocolate chips, peanut butter chips - you name it. It took some getting used to, working with different flours, but I'm good at it now.

Please hang in there. We welcome you here -- and there is nothing you've thought of that we haven't. Trust me. I have days when I've gotten into something that made me really sick, and I think, I should just have some more while I'm already sick. But then the reality of the damage to my body occurs to me -- a friend of mine almost died from this. And just like I gave up tanning because of a friend with skin cancer, I gave up gluten because I want to live well, regardless of the length of time.
  • 2
Gluten free: Nov. 2009
Peanut and dairy free: Dec. 2009
Rediscovered dairy: March 2010 (in small quantities)
Peanuts added back: June 2010 (in small quantities)

#41 cassP

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Posted 06 April 2011 - 05:34 AM

YES Newbie! gluten intolerance can give u the worst depression & anxiety- i KNOW big time- in fact anxiety was my BIGGEST symptom when on the "gluten challenge" before testing- i was ready to run someone over. ive also dealt with depression & clinical depression thruout my life. i am so much more balanced off gluten, and so so much more happier after getting on meds for my thyroid (also linked to gluten intolerance).

pancakes- oy... ya- well-> that can be a little tuff- ive had some BAD gluten-free pancakes.. actually one time my bestie and i made them with gluten-free soy & gluten-free oat flour and they were yum but those flours have to be certified- they're not always safe. i had frozen premade ones that werent ok untill i loaded them with salty butter, cinnamon, powdered sugar, and maple syrup :P
from what i hear- everyone swears by Pamela's pancake mix- supposed to be YUM
  • 0
1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#42 NewbieMarch2011

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Posted 06 April 2011 - 07:39 AM

Thank you, IrishHeart for the information you sent. I am considering trying the gluten-free thing for a bit - but am worried about my husband accepting it. He is totally not on-board with my vegetarianism and I think he believes that a lot of people go gluten-free to be trendy and to demand extra attention at restaurants - which he hates. I told a co-worker about my diagnosis yesterday and she said that it sounded like my doctor wants me to live in a bubble.

I have a follow-up scheduled with my doctor in 5 weeks and I asked my husband to come with me. He is the one that demanded that I go see the gastroenterologist in the first place because I have had spells where I throw up frequently. I used to run errands on Sunday - ending with the grocery store. I would put away my groceries and then instantly vomit. It was really weird and happened 5 times in a row. However, the last time I vomited was 2-1/2 months ago. He sometimes comes to doctor appointments with me. I got really sick and almost died a couple of years ago and now he watches my health closely. However, he doesn't believe I have any problems with wheat because I eat it all the time. He thinks the whole thing is a mountain out of a molehill. I know a lot of you will look down on me for letting him dictate the situation - but it's not going to change unless he changes his mind. We'll see what the doctor says about it. Maybe he will accept it if he gets to ask questions and hear the doctor first-hand.

As far as the mental thing goes, I am hoping to get to the point of trying it out. While it may ease some of the chemical imbalances, there are other issues that will still remain. I have complex PTSD and night terrors. The events that caused this will not be erased. I have also been diagnosed with depression and anxiety. I have lots of female problems as well - and some other physical problems that are not included on the list of things connected to celiac disease. However, it would be great if some of the things that are connected to it would ease up.

I have not been to the grocery store since my diagnosis. Hopefully I will go this coming weekend and purchase some gluten-free foods to try. I think with me it will be baby steps to try to move in the right direction. However, whether or not my husband gets on board will be a big factor in how this progesses. I know this statement will anger some people - but that's my reality.
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#43 IrishHeart

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Posted 06 April 2011 - 02:35 PM

Here is the bottom line.

Celiac disease is NOT a fad and it is not something you "dabble in". It is an autoimmune disease, not an allergy. Untreated... (meaning you choose not to eliminate gluten)..it will bring you more illness and pain, possibly cancer. It will kill you.

If you are given a chance to live the remainder of your life in better health, physically and emotionally, you should take it.

That's it. It's up to you. Not your husband, not your co-worker. From their comments, it is obvious they have no clue what celiac disease is all about.

Do this for you! Commit to it completely--because halfway won't work. A small amount of gluten continues the autoimmune attack on your body.

You need to read up on this and understand what's going on so you can get well. Go to you doctor visit with a list of questions. Be well!

Best wishes.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

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Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
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#44 mushroom

mushroom

    Mushroom

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Posted 06 April 2011 - 03:23 PM

Well, I really don't think that everyone on this forum is living in a bubble :D Sure, it might be a slightly different universe from the omnivorous folk, but it is still a complete universe and not a bubble. People are always willing to poke in their negativity oar, rather than being supportive. And to tell you that if you are different you are weird. :o But good heavens, we are all different, each and every one of us. Your difference is their weirdness, and vice versa. If we are to judge everyone on their differences we would spend our lives judging. Thank goodness for difference. But there is a difference between a fad or trend, and a necessity. It sounds like for you it is a necessity to eat gluten free. This is just like for someone else it is a necessity to take an antibiotic to cure an infection. We don't think it's weird that someone has to do that (although it is often overdone :o ), so why should a non-medical treatment for a condition be considered weird? It should be applauded.

I spent my life growing up with my parents, raised to worry about what other people will think, being given examples to emulate, don't make a fuss, toe the line, don't draw attention to yourself. Well, sometimes in order to live that way you have to self-efface and become a non-person whose needs don't count. If you have needs that are not the same as everyone else's, you have to listen to those needs and act accordingly. And if sometimes that makes other people take notice of us, well that's tough! Let them think what they may in their own small little world because we know what we have to do for us, and I would hope would not criticise what they have to do for themselves. People in wheelchairs attract attention; would you criticise someone who has to use one? People on crutches attract attention; but if they hobbled and didn't use them they would attract just as much attention. Should they hide under a stone.?

No, we just have to accept that sometimes in life we do have to be different and do something that is not like what everyone else does, and that it is necessary, and DEAL WITH IT. This is what I would tell your husband.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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#45 GFinDC

GFinDC

    A little farting never hurt anybody... :-).

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Posted 06 April 2011 - 04:23 PM

It is not unusual for people who aren't gluten-free or celiac to not understand the problems it cause us. Heck, many people don't even know what gluten is, as related to celiac disease. Even many doctors seem clueless about it. How many of your friends know what an autoimmune disease is? Probably not many.

I think you have the right idea about your husband going to a doctor visit with you. If he understands celiac it will be easier for him to help you. Husbands can be helpful once in a while after all..., just ask my 2 ex-wives! :D

I don't know that you getting a widely known and understood disease would be a whole lot better thing right? I mean, if you could trade for cancer right now would you say, gee this is going to be too much hassle to have to deal with, or maybe diabetes or rhuematoid arthritis or fibromyalgia would fit your lifestye better? Most people don't get those kinds of choices of course, but you do. You can ignore the gluten-free diet and take your chances on which other autoimmune diseases will pop up and eventually do you in. Isn't it great to have choices? There was a poster few years back who ignored the diet. She posted after several years of being back on gluten to tell her story. She was eating gluten regularly and one day ended up in the emergency room in pain. They took several feet of her damaged intestines out and put a colostomy bag on her abdomen. Some fun that is!

Now, the thing you need to face is, you do have an incurable disease, and it is called celiac disease. Your husband needs to get educated about your disease and its requirements. 70 years ago people didn't know how to treat celiac disease so you would have been in pretty lousy shape. I don't suppose they even knew what caused those kids and other people to wither up and die back then and for hundreds or thousands of years before. Now we know and it is an easy treatment, called the gluten-free diet.

Sorry for all the drama! It isn't meant as a criticism at all. I understand very well that it takes some getting used to the idea of this disease. I think it is good you told your co-worker, and are thinking about trying the diet. Just make it a 50 or 60 year trial and you all set! :D The hard part of this diet is the getting used to something different. But that is not so hard if you take a positive attitude towards it and make it an adventure in eating. There lots of recipes on this board you can try. And lots of restaraunts doing gluten-free now too. And you aren't alone. They estimate about 1% of the USA population has celiac, and there are some studies recently estimating up to 6% of people may have gluten intolerance. But studies of gluten intolerance are just now getting started.

You may not have to wait 5 weeks to get more info. There are celiac support groups in many areas that have meetings and share information and news. Some groups have gluten-free goodies to share or have potlucks. Around DC they do potlucks and also have monthly gluten-free dinners at restarants. Check out the CSA (Celiac Sprue Association) for local group meetings.

On the off chance your husband would be willing to watch some video explanations of celiac disease, here are some threads with links.

http://www.celiac.co...__1#entry677880

http://www.celiac.co...__1#entry676365

http://www.celiac.co...__1#entry675481

http://www.celiac.co...__1#entry668586

http://www.celiac.co...__1#entry662320

http://www.celiac.co...__1#entry662029

http://www.celiac.co...__1#entry660396
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul


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