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Help! I Am Overwhelmed!


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26 replies to this topic

#1 LolaB

 
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Posted 10 October 2012 - 10:09 AM

Well, after close to 25 years struggling with terrible stomach pains, diarrhea, bloating, heartburn, gas pains, fatigue, muscle aches, always feeling just “ok”, no energy, always looking for the closest washroom if out with friends or family, anxiety when I traveled, days with horrible headaches and nausea, diarrhea …... believe me the list goes on ….......... constantly going to my family doctor only to be told “reduce stress” or “more fiber” and yes “IBS” I knew I couldn't continue living and trying to function every day like this. People without stomach issues really have no idea how debilitating or stressful it can be, never knowing if you are going to be ok today or spend time in the washroom. I felt very alone and sick and tired of being sick and tired! And if I had to hear “more fiber" one more time I would scream! To make things worse, I was actually eating natural Quaker oats every morning, learning afterwards they were doing more harm than good! So much for my healthy breakfasts! After pushing my Doctor I found an amazing Gastrologist through my brothers girlfriend who has Crohn's disease for her whole life, I met him and he booked me in two weeks later for a colonoscopy/endoscopy and for the first time I believed I was not crazy and he cared. Even after years of seeing other specialists who told me I needed my gallbladder out, which I did, and still feeling horrible, weight loss and depression of why I can’t feel awesome! I am 38 years old now, and feeling very overwhelmed with this and going through lots of emotions dealing with this diagnosis. I am grateful for my wonderful husband and supportive family who sighs a relief that I have answers. I still need to meet with my family doctor for my blood work to see any deficiencies.......................I guess I am looking for friends in this forum to know I am not alone … 2 weeks Gluten free and starving!.......... any advice? thanks so much
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#2 1desperateladysaved

 
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Posted 10 October 2012 - 01:43 PM

I am sorry you have had to go through so many years of suffering. I know it is overwhelming changing your diet. There is alot to learn. The body is also spending incredible energy to heal at this time. It may not be so good today, but you do have hope that improvements will be made.

Here is what I am doing: I am gluten free since May 18, 2012:
Gluten Free Diet
Supplement program
active work.
Rest when needed when possible.

I think you can find yummy food that does not have gluten. I haven't found much that I don't like. Today I made breakfast muffins
They had a lttle coconut flour, eggs, baking soda, salt. I flavored it with ground fenugreek. They were good. I use also almond flour, bean flours, and buckwheat. I made grain free granola which is very yummy. I believe you will find your new diet very yummy as you discover it.

You have so much more hope if you have a gluten problem and are not eating gluten. One day you will realize it. Hang on in the mean while.

Diana
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#3 bartfull

 
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Posted 10 October 2012 - 01:58 PM

The hunger will ease. You are going through gluten withdrawal. Try eating a bunch of small meals instead of the usual three a day. Go to the thread, "Newbie 101" to learn more about coping with the diet, avoiding cross-contamination, and lots more. And feel free to ask as many questions as come to mind, to cry on our shoulders, or rant and rave. We have all done that here and you'll never find a more knowledgable or supportive group of people anywhere. Welcome to the club none of us wanted to join! But keep in mind that it gets easier, and as you start feeling better and better, you will be thankful that it's celiac - no drugs or surgery required to get better. Just a healthier diet that you will learn to enjoy. :)
  • 2

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 LolaB

 
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Posted 10 October 2012 - 02:10 PM

Thanks so much to both of you, I appreciate the support. My dietitian told me about 2 to 3 months until I can start feeling a lot better.....I hate the heartburn :blink: but am thankful for the diagnosis.
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#5 bartfull

 
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Posted 10 October 2012 - 02:33 PM

Just a heads up, you may start feeling better even after a few weeks, but after having celiac for so long, you will probably take much longer to completely heal. And believe me, there will be lot's of bumps in the road. You may develop intolerances to other foods (lots of us do) and you may react to things there is no earthly reason anyone should react to. While you are healing all sorts of crazy things can happen.

Check out my content. You will see some of my earlier posts are like a seesaw! "I feel so much better!" a week later, "I'm so sick!" "YAY! I made some delicious gluten-free cornbread." A few days later, "Oh no! I reacted to the cornbread!" "Yum! Baked sweet potato!", followed by "I got D from the sweet potato!"

Just keep in mind that even though you will have setbacks from time to time, you are making progress. And we are here for help and advice. We'll walk you through it and pick you up if you should stumble. If things get weird like they did for me, someone here will help you to figure it out.

In the meantime, don't let all that I just said get you worried. You might be one of the lucky ones like my Mom, who went gluten-free and never had any other problems. :)
  • 3

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!

 


#6 squirmingitch

 
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Posted 10 October 2012 - 04:31 PM

Eat Lola, eat! Bartful is right --- gluten withdrawal. Starving, unending hunger!!!!! I literally would vacuum with one hand while eating an apple with the other. I could not stay away from food for 10 minutes. I was ravenous constantly! Your body is trying to heal. Don't worry about weight right now; just eat! Your body needs it. Eating more protein will help as well as some good fats --- good fats help digest protein & carbs. If you eat an apple then have a few cashews or peanuts with it or smear the slices with some peanut butter or nutella. And UP, UP your protein in the morning.

Welcome to the board! And we're so glad you finally have found out what your problem was.
  • 2

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#7 shadowicewolf

 
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Posted 10 October 2012 - 04:52 PM

withdrawl is fun isn't it?

At any rate, as for the heartburn, do what the others have said and eat smaller meals more often. This is something i have to do to keep my GERD in line.
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#8 LolaB

 
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Posted 10 October 2012 - 07:12 PM

I am so happy to have found this site, It's so nice to know I am not alone and the positive feedback.
By the way, is it possible to feel great and then have a day of gas, bloating and D? I was feeling better until today, go figure the day after I met with the dietitian! :P my concern is also my weight, I am 5'4" at 112 pounds....seems like you could talk forever about Celiac!
Thanks again everyone! :)
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#9 GottaSki

 
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Posted 10 October 2012 - 09:55 PM

By the way, is it possible to feel great and then have a day of gas, bloating and D?

Welcome Lola!

It is possible and highly probable during your first weeks and possibly months.

If the symptoms persist you may need to remove dairy - it is tough to digest while the villi of the small intestine are healing. Don't remove anything else besides gluten during these first weeks unless you are certain the food is bothering you. Sometimes it is just hard to digest without a specific food causing the problem. If you eventually find that you do need to remove other foods, it is likely you'll be able to eat them again once you have healed - except gluten of course.

It is also possible that you are getting small amounts of gluten somewhere. It takes time to get all sources out of our diet.

The transition simply takes time. Some days will be better than others. Set-backs are possible - I hope you have very few.

Take care :)
  • 2

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#10 LolaB

 
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Posted 11 October 2012 - 08:38 AM

Thanks Lisa - Does lactose free still contain dairy? I have been using lactose free milk, but I do use some half & half in my tea .... that could cause it? oh I am confused! :rolleyes:
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#11 GottaSki

 
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Posted 11 October 2012 - 08:47 AM

Thanks Lisa - Does lactose free still contain dairy? I have been using lactose free milk, but I do use some half & half in my tea .... that could cause it? oh I am confused! :rolleyes:

It could...but I would wait a bit longer before removing anything else. Bloating, etc. can happen for many reasons while you are newly gluten-free. If your digestive symptoms don't improve in the coming weeks, then I'd look to other possibilities.

Another way to check the half & half specifically would be to remove it for a week to see if you still bloat. If you don't, then try it after a week.

Personally, I'd wait a bit because you may improve by just remaining gluten-free.

Good Luck :)
  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#12 squirmingitch

 
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Posted 13 October 2012 - 09:19 AM

Lola, I'm 5' 1.5" & 99 lbs. I was 97 lbs. I'm still trying to get some weight back on. I'm now 10 months gluten-free. It takes time. Be patient.
  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#13 L.J.

 
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Posted 13 October 2012 - 10:36 AM

Welcome LolaB!

I found this site recently as well! You are in the right and safe place! The advice is phenomonal! And best of all, you will find support, understanding, compassion and (my personal favorite) humor! Which also helps as you work your way through "the mire" that most of us feel at the beginning!

I too went through a stage of "starving"--which I was both because I did not know what to eat and I was not eating often enough. You have already gotten some great info given to you! For me, I keep "safe snacks" around me. As you know, we are all different (and yet similar) with the foods we can eat. For me, I wa "desperately" hungry and on a road trip. I did not pack any snacks--but I *had to eat*!!! So my hubby found a grocery store, and I picked up Boar's Head low salt, no gluten etc. turkey and some "plain" (no flavored) rice cakes. I ate them, and found it filled me up. I was back to my "happy" place! :D

When I branched out and tried the flavored rice cakes, I had trouble! So, just sharing some info that helped me--

I too am still a Newbie here, but I have found more information and support than I could ever imagine!

A hearty Welcome to You! :D


Well, after close to 25 years struggling with terrible stomach pains, diarrhea, bloating, heartburn, gas pains, fatigue, muscle aches, always feeling just “ok”, no energy, always looking for the closest washroom if out with friends or family, anxiety when I traveled, days with horrible headaches and nausea, diarrhea …... believe me the list goes on ….......... constantly going to my family doctor only to be told “reduce stress” or “more fiber” and yes “IBS” I knew I couldn't continue living and trying to function every day like this. People without stomach issues really have no idea how debilitating or stressful it can be, never knowing if you are going to be ok today or spend time in the washroom. I felt very alone and sick and tired of being sick and tired! And if I had to hear “more fiber" one more time I would scream! To make things worse, I was actually eating natural Quaker oats every morning, learning afterwards they were doing more harm than good! So much for my healthy breakfasts! After pushing my Doctor I found an amazing Gastrologist through my brothers girlfriend who has Crohn's disease for her whole life, I met him and he booked me in two weeks later for a colonoscopy/endoscopy and for the first time I believed I was not crazy and he cared. Even after years of seeing other specialists who told me I needed my gallbladder out, which I did, and still feeling horrible, weight loss and depression of why I can’t feel awesome! I am 38 years old now, and feeling very overwhelmed with this and going through lots of emotions dealing with this diagnosis. I am grateful for my wonderful husband and supportive family who sighs a relief that I have answers. I still need to meet with my family doctor for my blood work to see any deficiencies.......................I guess I am looking for friends in this forum to know I am not alone … 2 weeks Gluten free and starving!.......... any advice? thanks so much


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#14 Really good scratcher

 
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Posted 17 October 2012 - 07:09 PM

I am overwhelmed too. Going Gluten Free is very new to me. It is a complete change. It's kind of hard right now. I worry how sensitive I am. I read about cross-contamination and now I worry about that! Really, does all it take is a tiny tiny amount of gluten to offset your progress? The other day a friend of mine made me a salad and proudly told me she took off the croutons for me. It was so hard to tell her I couldn't even eat foods where bread had touched something else. Do you absorb gluten by touching it, but not eating it? I make meals for my family, do I have to avoid touching wheat products forever? Can't I just wash my hands right afterwards? Why so little to be so sensitive to it? That's a mystery to me! I am trying to stay upbeat and have a good attitude towards this new way of eating and lifestyle. Even with reading a lot about gluten sensitivity, there is so much more to learn!
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#15 mushroom

 
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Posted 17 October 2012 - 07:31 PM

Just touching the croutons will not cause a gluten reaction, but eating food that croutons have touched most probably will because they leave behind trace crumbs of gluten which most celiacs react to. Some are less sensitive and can get away with just removing the croutons, but most are not. So long as you wash your hands after possibly touching gluten and always before eating, you should be fine. Sometimes breathing air in a kitchen where gluten flour has recently been used will set you off because flour particles tend to hang in the air and can be inhaled.

Cross-contamination is a tricky issue. Gluten can linger on cooking utensils and pans, crumbs in toasters, on cutting boards, on someone's hands who has been handling gluten foods and then handles yours. In restaurants you should always ask them to put on clean gloves to handle your food. You will learn the dangerous situations and how to control them. Do not despair. Every day it gets easier and pretty soon it becomes routine. :)
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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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