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Living Normally While Battling Celiac Is Like:

drowning in an ocean while

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59 replies to this topic

#46 bartfull

 
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Posted 19 February 2013 - 04:20 PM

Luv2teach, I'm sorry you are feeling this way but be assured, it is perfectly normal to go through a grieving stage. I think all of us did. Meltdowns at the grocery store, feeling left out when our friends go out to eat, and having a new baby must make it that much worse.

 

But the food doesn't have to be crappy. Most of what you used to eat is still available - meat, potatoes, vegetables, nuts, chips, and if you miss bread, Udi's whole grain or even better yet, Canyon Bakehouse Seven Grain San Juan bread is WONDERFUL. And for sweets, try Udi's double chocolate muffins. And of course most ice creams are gluten-free.

 

Maybe you could try your baby on a gluten-free diet. He won't miss bread at his age, and you can give him gluten-free chex instead of cheerios. I say this because celiac runs in families and you might find he does better on a gluten-free diet. The gluten-free diet is SO much healthier for a person anyway.

 

When I find myself getting down about it (which is VERY rare now), I remind myself that so many people have it so much worse. I don't need medications with their side effects, I don't need surgery, and if I stick to my diet I CAN live a normal life. I can do anything I used to do and do it harder and longer and better because I FEEL better than I used to.

 

That is WELL worth the slight inconvenience of a gluten-free diet.

 

It'll get better. I promise. :)


  • 1

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!

 


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#47 designerstubble

 
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Posted 19 February 2013 - 04:23 PM

I don't feel like I am living a normal life! I am newly diagnosed (one month) but completely agree with those analogies. It's not "normal" that I can't go out to eat with my friends and family anywhere they want, it's not "normal" that I have to scrutinize everything I put in my body for deaf of getting sick, it's not "normal" that I have to cook three meals for my family because I am the only celiac and dont want to make them suffer this shitty food just because I had to and I have a baby that HAS to be exposed to gluten, and on that note, it's not normal that I can't kiss my baby"s hand he reaches out to me because it has cheerio dust covering it and he doesn't understand why.... I used to give his hands kisses while he was eating. No, I'm sorry, but I don't feel normal at all!!!


I'm with you there... I'm only 5 months in. It wasn't normal for me either and I'm still struggling. But I think by definition the word 'normal' just means commonplace, usual, everyday. So until we get used to this way of life, we will feel alien to it. My gorgeous little boy has learnt to wash his hands after something gluteny and even says to me now, 'mum font kiss me, I've had gluten'... Broke my heart the first time. I understand you completely.
So it's not normal to begin with. For sure.
These guys on this forum kept telling me to hang on in there. I did... Just about! They said it would get easier. I believed them because the alternative is too depressing, but they were right. It IS easier.( And I think I may be a 'complicated' case with many food issues going on)
I'm just hoping that another 5 months will make even easier!! Stay strong.
  • 1

Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


#48 love2travel

 
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Posted 19 February 2013 - 07:27 PM

Luv2teach, I'm sorry you are feeling this way but be assured, it is perfectly normal to go through a grieving stage. I think all of us did. Meltdowns at the grocery store, feeling left out when our friends go out to eat, and having a new baby must make it that much worse.

 

But the food doesn't have to be crappy. Most of what you used to eat is still available - meat, potatoes, vegetables, nuts, chips, and if you miss bread, Udi's whole grain or even better yet, Canyon Bakehouse Seven Grain San Juan bread is WONDERFUL. And for sweets, try Udi's double chocolate muffins. And of course most ice creams are gluten-free.

 

Maybe you could try your baby on a gluten-free diet. He won't miss bread at his age, and you can give him gluten-free chex instead of cheerios. I say this because celiac runs in families and you might find he does better on a gluten-free diet. The gluten-free diet is SO much healthier for a person anyway.

 

When I find myself getting down about it (which is VERY rare now), I remind myself that so many people have it so much worse. I don't need medications with their side effects, I don't need surgery, and if I stick to my diet I CAN live a normal life. I can do anything I used to do and do it harder and longer and better because I FEEL better than I used to.

 

That is WELL worth the slight inconvenience of a gluten-free diet.

 

It'll get better. I promise. :)

This is SO true!  Luv2teach, there is no way you need to put up with crappy food.  Heck - about 80% of what I cook is naturally gluten free and is spectacular.  See the What's for Dinner thread for great meal ideas, most of which are intrinsically gluten free.  If I had to live on processed commercial gluten-free food I think I would crawl in a hole and never come out.  We eat very few store-bought gluten-free "foods".  Much of it is just so yucky and processed to the hilt. 

 

When I was first diagnosed I was in major denial.  Food is my passion, testing recipes and teaching cooking classes.  But now I just do things differently.  Some things had to be adapted but it got easier with time.  It took me probably at least six months to come to terms with the whole thing and to realize there are worse things out there than having celiac.  You have more food intolerances than I do (only gluten and lactose at this point) so I can only imagine it would be that much trickier.  The worst thing for me was coming to terms with my miscarriages and no children.  :(   

 

Keep hanging on.  You just need to get over that hump and then things start falling into place.  Honest.  We are not just saying this.  We are living examples.  :)


  • 0
<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#49 mommida

 
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Posted 20 February 2013 - 07:31 AM

Everyone has a story that has lead them here.  You have a story that is still being written.  Later, maybe, they will publish the memoirs.

 

I'll turn mine into some what of a small movie clip.  (Imagine me as some glorious hot chick.) :D

 

Roll footage...  Plugged into The Matrix.  My imaginary life track is ... glitched.  :(  I'm stuck in the bathroom.  If I'm not in the bathroom, I'm looking for the next bathroom.  I have decided this is not right and unplugged from the Matrix. "Psst!"  To the body next to me,  "Mine's broken."  No response....   So off I go in a strange land. I have to feed myself not relying on SAD (standard american diet)

 

I have turned into some what of a Super hero.  A secret identity :ph34r: (here on the forum), an arch enemy :rolleyes: (gluten), doing good deeds :) , and other super human feats :wub: disquised as a normal mom.  (Insert theme song.)  Wonder Women has nothing on me!  Except maybe that magic lasso of truth!!? <_< Note to self~ get some James Bond gadgets.  Those could come in handy. :P


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Michigan

#50 1desperateladysaved

 
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Posted 20 February 2013 - 08:55 AM

Everyone has a story that has lead them here.  You have a story that is still being written.  Later, maybe, they will publish the memoirs.

 

I'll turn mine into some what of a small movie clip.  (Imagine me as some glorious hot chick.) :D

 

Roll footage...  Plugged into The Matrix.  My imaginary life track is ... glitched.  :(  I'm stuck in the bathroom.  If I'm not in the bathroom, I'm looking for the next bathroom.  I have decided this is not right and unplugged from the Matrix. "Psst!"  To the body next to me,  "Mine's broken."  No response....   So off I go in a strange land. I have to feed myself not relying on SAD (standard american diet)

 

I have turned into some what of a Super hero.  A secret identity :ph34r: (here on the forum), an arch enemy :rolleyes: (gluten), doing good deeds :) , and other super human feats :wub: disquised as a normal mom.  (Insert theme song.)  Wonder Women has nothing on me!  Except maybe that magic lasso of truth!!? <_< Note to self~ get some James Bond gadgets.  Those could come in handy. :P

Okay, I will be at the theatre!  JUst let us know when it airs.


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#51 GFinDC

 
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Posted 20 February 2013 - 11:48 AM

Luv2teach, I'm sorry you are feeling this way but be assured, it is perfectly normal to go through a grieving stage. I think all of us did. Meltdowns at the grocery store, feeling left out when our friends go out to eat, and having a new baby must make it that much worse.

 

But the food doesn't have to be crappy. Most of what you used to eat is still available - meat, potatoes, vegetables, nuts, chips, and if you miss bread, Udi's whole grain or even better yet, Canyon Bakehouse Seven Grain San Juan bread is WONDERFUL. And for sweets, try Udi's double chocolate muffins. And of course most ice creams are gluten-free.

 

Maybe you could try your baby on a gluten-free diet. He won't miss bread at his age, and you can give him gluten-free chex instead of cheerios. I say this because celiac runs in families and you might find he does better on a gluten-free diet. The gluten-free diet is SO much healthier for a person anyway.

 

When I find myself getting down about it (which is VERY rare now), I remind myself that so many people have it so much worse. I don't need medications with their side effects, I don't need surgery, and if I stick to my diet I CAN live a normal life. I can do anything I used to do and do it harder and longer and better because I FEEL better than I used to.

 

That is WELL worth the slight inconvenience of a gluten-free diet.

 

It'll get better. I promise. :)

Gorilla Munch cereal is gluten-free also, and Pebbles too.


  • 0
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

#52 kareng

 
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Posted 20 February 2013 - 12:27 PM



 
I have turned into some what of a Super hero.  A secret identity :ph34r: (here on the forum), an arch enemy :rolleyes: (gluten), doing good deeds :) , and other super human feats :wub: disquised as a normal mom.  (Insert theme song.)  Wonder Women has nothing on me!  Except maybe that magic lasso of truth!!? <_< Note to self~ get some James Bond gadgets.  Those could come in handy. :P


How about a fork that detects and destroys gluten on your plate? A watch that tells you the wait time at PF Chang's and the closest gluten-free cupcake?
  • 1

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#53 gatita

 
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Posted 20 February 2013 - 12:53 PM

Oh, I want that fork!!


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Diagnosed with wheat hates me 4/13


#54 mommida

 
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Posted 20 February 2013 - 01:01 PM

Those are the gadgets I'm talking about! ;)


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Michigan

#55 Luv2teach

 
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Posted 20 February 2013 - 01:10 PM

Thanks for the support, feedback, an positive words. I think it is extra frustrating because 1) I am also a vegetarian so my food is already limite and now many of my fav go to soy products are off the table and 2) I had NO symptoms prior to diagnosis so its not like I have the motivation o feeling better and, on fact, I am now having severe gastrointestinal issues ever since I stopped gluten so I feel worse than ever. Grrrr...I'll be ok though...just super frustated
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#56 mushroom

 
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Posted 20 February 2013 - 02:17 PM

Sure sounds like a truckload of bird$#*@ just landed in your nest :unsure:   I hope a good spring cleaning soon has you feeling chirpier :D


  • 0
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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#57 designerstubble

 
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Posted 20 February 2013 - 03:02 PM

Thanks for the support, feedback, an positive words. I think it is extra frustrating because 1) I am also a vegetarian so my food is already limite and now many of my fav go to soy products are off the table and 2) I had NO symptoms prior to diagnosis so its not like I have the motivation o feeling better and, on fact, I am now having severe gastrointestinal issues ever since I stopped gluten so I feel worse than ever. Grrrr...I'll be ok though...just super frustated


I'm veggie too :)
Recently: (ie. since gluten free)
Allergic to eggs
Allergic to citrus
Allergic to pumpkin seeds
React to quinoa
Intolerant to dairy
Super intolerant to corn
Intolerant to soy
Sugar free
Caffeine free
Cigarette free!!

My food probs are incredible since diagnosis, corn reactions almost worse that gluten?!

I only eat fruit and veg. And rice. I manage to tolerate a very little butter. I dream of food.

Last night I dreamt that I drank a lovely latte coffee, sweet and frothy. It was luscious.
I awoke in a panic thinking I'd actually had it as it was so vivid.

I drink red wine now... probably not a good idea really, but can't help it as I feel so deprived. Or should that say depraved??!!! Might try and cut down soon as I started getting gut pain again.

Am considering fish (am veggie of 26 years) but thought of it makes me wanna vom, and I worry about introducing something my body no doubt will freak out over, something else to get allergic too?

It's not easy. But I must admit, food I thought boring and plain have now become delicious! And full of flavour? It's so strange. My taste buds are overwhelmed by things like a homemade veggie soup! Mmmm!
It honestly truly does get easier!! :)
  • 1

Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)


#58 Welda Johnson

 
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Posted 23 February 2013 - 06:29 PM

I can understand how desperate you might have felt during your times of transitioning to a gluten free diet.  I've been gluten free since 2000 and also had to eliminate all milk & dairy products, meats, etc., so am now vegan.  It used to really bother me when people were not accepting of my sometimes futile efforts to get this disease (and I also have asthma, gout & rheumatoid arthritis) under control.  I would get so angry at times that I would stay home rather than go out to social events.

 

Now, 13 years later, I have learned that it is usually because most people have no idea about what celiac disease is, or food intolerances, or diseases that you can't readily see, so they simply respond without having any knowledge of what we are going through.  I used to think that if I went to a family gathering or a social event, the person putting together the party would remember that I could only eat limited items.  That didn't work!  Finally I began taking along foods I liked and could eat, even to restaurants, and that solved all those problems, and allowed me to have fun, rather than being angry.  Sometimes my food was better than what I was seeing being served. 

 

I also bought tests from Enterolab for my immediate family members, since celiac is a genetic condition.  The one person who proved to have celiac hasn't made any dietary changes, and has experienced thyroid cancer and colon polyps which were thought to be cancerous, conditions which I've read can be a result of celiac disease.  Thank God it wasn't colon cancer.  BUT, now, nine years after those tests, some family members are getting tired of stomach aches, rashes, serious illnesses, and are beginning to change their diets.  Sometimes progress takes longer than we would hope for, but I am gratified to have been doing the best I could to help others.

 

This disease makes one less of a "people pleaser," and a stronger, more vocal individual.  As you're sitting eating the delectable meal you brought along, in a group, someone always notices and makes a comment.  Now I can smile and be happy with what I've brought.  One of my challenges for myself is to find as many new products as possible, each and every day.  I read every ingredient on every label that I think might be a "new find."  I float on air as I'm leaving the store, satisfied that my search has been fruitful and successful. 

 

Be kind to yourself.  Experts say that one out of every 133 Americans has gluten intolerance, and, believe me, there are tons more gluten free products on the market now than in 2000.  We ARE making progress.  Watch for the changes and you will certainly see, and most likely, you "went the extra mile" to make those changes happen.  Best wishes.  Welda 


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#59 cavernio

 
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Posted 25 February 2013 - 10:50 AM

Designerstubble, I'm not vegetarian, but I think that healthy people who are vegetarian/vegan are doing the right thing. But the more restricted diet becomes, the more worried I would be about restricting my diet so much.

If you're considering trying meats, but the thought of eating fish disgusts you for ethical reasons, you could try things that are well, much dumber on the scale of animals, like clams, oysters, scallops or snails.


  • 0
diagnosed Jan 2012, bloodwork only
June 2012 positive visual of celiac disease from gastroscopy

#60 designerstubble

 
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Posted 25 February 2013 - 03:00 PM

Designerstubble, I'm not vegetarian, but I think that healthy people who are vegetarian/vegan are doing the right thing. But the more restricted diet becomes, the more worried I would be about restricting my diet so much.
If you're considering trying meats, but the thought of eating fish disgusts you for ethical reasons, you could try things that are well, much dumber on the scale of animals, like clams, oysters, scallops or snails.

Thanks Cavernio... To be honest, although I very much prefer to not eat any flesh, I would consider eating anything to make me better. The worry I have is that I have SO many NEW allergies and intolerances since being gluten free that I am petrified of introducing a new food at this stage. I don't know at this stage if my allergies are real allergies (Ige) or if they are intolerances because of perhaps the state of my immune system or perhaps I have leaky gut?? So I stress out just eating my normal food as it seems every 2-3 weeks something else gets knocked off. It's a tricky time and to be honest the truth of the matter is I actually don't know what to do anymore so have decided to give my poor brain a rest and just chill for a few weeks!
It's exhausting! :) I am very much hoping to get some foods back one day... Especially cheese. And seeds. And and and! :)
  • 0

Diagnosed Celiac Oct 2012 (Blood and Biopsy)
Gluten free / Dairy free / Caffeine / Almost sugar free / Tobacco free 2012. Corn free 2013
Vegetarian since 1986 / Asthmatic since 1990 / Migraines since 1998

 

Symptoms: Classical GI symptoms. Fibromyalgia. Odd pains. Bone aches. Severe headaches. Severe depression. Anxiety. Diagnosed with severe anaemia. Severe Vit D deficiency. Boderline Folate & B12 Defiency.

 

Since being gluten free... initially felt better for a month, still suffer with loose bowels, am currently struggling with many more allergies and intolerances to foods, such as dairy, egg, celery, oranges, tomatoes, quinoa, seeds,... Pressure hives (from Feb 2013) / Having bad leg aches during periods (June 2013)

(Marked in bold, these problems have been resolved)



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