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How Do You Emotionally Deal With Setbacks?

setback glutened

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102 replies to this topic

#16 HavaneseMom

 
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Posted 06 May 2014 - 07:40 PM

Hi icelandgirl,

I'm still pretty new to this too, and I had a bad "blip" at 3 1/2 months that lasted about 2 months. It was sooo frustrating and I was pretty upset about it. Then one Sunday morning I woke up and miraculously felt better and now at 7 months, I am still feeling pretty darn good. The vets here told me similar things they are telling you, and it helped so much to know this is normal for some people and that relief is in sight.

I do know that some of the foods I was eating were causing me problems at that time, so that is definitely something to watch for, but the good news is I can eat most of those foods now in moderation.

I hope you feel better soon :)


  • 0
Grateful to be correctly diagnosed at 40.
Likely misdiagnosed since childhood.
Blood test and Biopsies positive for Celiac Disease.
Gluten Free Since 10/9/13.

Be kind whenever possible. It is always possible. ~ Dalai Lama

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#17 icelandgirl

 
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Posted 06 May 2014 - 07:56 PM

Hi icelandgirl,
I'm still pretty new to this too, and I had a bad "blip" at 3 1/2 months that lasted about 2 months. It was sooo frustrating and I was pretty upset about it. Then one Sunday morning I woke up and miraculously felt better and now at 7 months, I am still feeling pretty darn good. The vets here told me similar things they are telling you, and it helped so much to know this is normal for some people and that relief is in sight.
I do know that some of the foods I was eating were causing me problems at that time, so that is definitely something to watch for, but the good news is I can eat most of those foods now in moderation.
I hope you feel better soon :)

Hi icelandgirl,
I'm still pretty new to this too, and I had a bad "blip" at 3 1/2 months that lasted about 2 months. It was sooo frustrating and I was pretty upset about it. Then one Sunday morning I woke up and miraculously felt better and now at 7 months, I am still feeling pretty darn good. The vets here told me similar things they are telling you, and it helped so much to know this is normal for some people and that relief is in sight.
I do know that some of the foods I was eating were causing me problems at that time, so that is definitely something to watch for, but the good news is I can eat most of those foods now in moderation.
I hope you feel better soon :)


Hi havanesemom...Thank you for the encouraging words. I do feel discouraged at this point...but everyone on here really lifted me up today.

Do you know what caused your bad blip? 2 months is a long time...which foods were causing you issues if you don't mind sharing? I'm pretty much living on bananas, tea and potatoes at this point. I'm like stupid auto immune disease...but that really doesn't help with anything.
  • 0
January 2014-Celiac
August 2014- Hashimoto's



"You never know how strong you are, until being strong is your only choice."
Bob Marley

#18 icelandgirl

 
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Posted 06 May 2014 - 08:00 PM

Are you sensitive to dairy also?  I am not sure if the bittersweet contains dairy but that's another possibility.  I would wait before trying any rich chocolate....at least until you feel better.  I know how frustrating that can be but the good news is that, after time, you should be able to tolerate these types of foods again.  I have been gluten-free for 9 years now so can tolerate so much more than in the beginning.  It did not take 9 years to do that, either, so don't panic.  ;)  You will also bounce back faster, if you do take a hit or eat something that makes you feel off.  A Celiac's tummy is just more sensitive and sometimes, for unknown reasons, things bother us.  I hate that too! 
 
Feel better soon!


Hi Gemini...Thank you for sharing your wisdom. I haven't felt any sensitivity to dairy...which I'm glad about. Which other foods did you have trouble with.

You've been gluten free for 9 years! Wow...how long after starting until you felt good on a regular basis? Do you still have blips? Is that just an inevitable part of the disease?

Thank you again!
  • 0
January 2014-Celiac
August 2014- Hashimoto's



"You never know how strong you are, until being strong is your only choice."
Bob Marley

#19 icelandgirl

 
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Posted 06 May 2014 - 08:36 PM

you might want to try a food journal for a little while :)  i found it very helpful, even to identify sources of irritation other than gluten.  plus, when i did get hit (alot!  in the beginning) it helped me track my symptoms/to know what to expect.   (for the next time ha ha)    lots of water, naps........  feel better :)


I like the food journal idea quite a bit...thanks for that suggestion!
  • 0
January 2014-Celiac
August 2014- Hashimoto's



"You never know how strong you are, until being strong is your only choice."
Bob Marley

#20 icelandgirl

 
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Posted 06 May 2014 - 08:39 PM

I still recall when I was not doing so well during the first year (off and on) and Gemini would tell me "it's just a blip"
and then we would talk about other things and laugh. Since then, we have become the very best of friends, so I will say this:
Listen to this wise woman!
 
Blips pass. I promise, it gets better.  Take it from a former serial  "blip girl".... :D
 
Be good to yourself. As Ski says, lots of water, rest when you can and know that you are already recovering.
Onward and upward.
 
P.S. If it makes you feel any better, when I get hit (and we all do--even the veterans!) it passes more quickly than it did at the beginning. (still hate the joint pain and the hair loss--but that's just my "special thing" from our nemesis gluten)
 
Hang tough, kiddo.


This is what I love about this board...There is so much caring and compassion here...and wonderful people ready to share their wisdom...Thank you. A celiac bff sounds like what I nees. :)
  • 1
January 2014-Celiac
August 2014- Hashimoto's



"You never know how strong you are, until being strong is your only choice."
Bob Marley

#21 HavaneseMom

 
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Posted 06 May 2014 - 08:55 PM

Hi Again,

Sorry the quote function doesn't work for me on this computer.

To answer your question about if I know what caused the blip, I don't know for sure what caused that 2 month blip. Some of the foods that were bothering me were certified gluten free corn based cereals, corn pasta, tea, broccoli, tomato, anything spicy, chocolate, dairy and I know there are more I am forgetting (I still have brain fog and memory issues, but I'm ok with that). My GI doctor recommend the low FODMAP diet and I think that help reset my system too. I only did it strictly for a couple of weeks, so that wasn't too bad at all. I was also pretty stressed out about my diagnosis at that time, so that didn't help my gut either. I wish I had a specific answer for you, but it could have been anything that caused it and maybe was just part of my healing process. I actually thought about not writing that my blip it lasted 2 months because I didn't want to discourage you. For the record I am a generally a very slow healer, so hopefully your blip will be over really quickly :).


  • 0
Grateful to be correctly diagnosed at 40.
Likely misdiagnosed since childhood.
Blood test and Biopsies positive for Celiac Disease.
Gluten Free Since 10/9/13.

Be kind whenever possible. It is always possible. ~ Dalai Lama

#22 IrishHeart

 
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Posted 07 May 2014 - 02:50 AM

This is what I love about this board...There is so much caring and compassion here...and wonderful people ready to share their wisdom...Thank you. A celiac bff sounds like what I nees. :)

 

 

I have been fortunate to acquire many celiac BFFs...and you will to!  :) Just hang in there. Recovery is the mother of all exercises in patience.

....but healing happens. 


  • 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 

"Do or do not. There is no try. "-  Yoda.

"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


#23 GottaSki

 
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Posted 07 May 2014 - 04:55 AM

This board and members like Gem and Irish was a major part of me figuring out a rather complex puzzle.

 

I had a little Blip yesterday afternoon -- I have them often, not from gluten but other sources -- last night sucked -- today I'm sore, but much better.

 

Nice long epsom salt/baking soda soak to start the day - which will proceed slowly with lots of water ;)

 

Hang in there :)


  • 1

-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 :)


#24 icelandgirl

 
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Posted 07 May 2014 - 08:03 AM

Thank you all for your kind words and encouragement. Hearing your stories helps me so much. Emotionally I feel so much better.
  • 0
January 2014-Celiac
August 2014- Hashimoto's



"You never know how strong you are, until being strong is your only choice."
Bob Marley

#25 Gemini

 
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Posted 07 May 2014 - 09:06 AM

Hi Gemini...Thank you for sharing your wisdom. I haven't felt any sensitivity to dairy...which I'm glad about. Which other foods did you have trouble with.

You've been gluten free for 9 years! Wow...how long after starting until you felt good on a regular basis? Do you still have blips? Is that just an inevitable part of the disease?

Thank you again!

I did very well on the gluten-free diet and then at the 2 year mark, that's when the dairy problem became evident.  I did not figure this out sooner because my gut was totally trashed at diagnosis so I probably didn't notice the fact that dairy was becoming a problem until I had healed a bit.  That's a fairly common thing to happen to us.  So...after 9 years, I am dairy lite.  I can tolerate small amounts but it is also cumulative with me.  No drinking milk (which I do not like anyway), no ice cream or puddings....things like that.  Don't even miss ice cream because who wants to live in the bathroom every time you eat some?  The cramping from it is pretty bad.  I still heven't gotten diary totally back so at this point, I have given up and am fine with that.  I would rather feel good.

 

I steadily felt better, with no major set backs in the beginning, because I ate a mainly whole foods diet with some bread and a few goodies thrown in because I was 20 pounds underweight when diagnosed.  I really needed to plump up.  But it was 3 years in total before the very last symptom disappeared.  My gut felt good but I had this leg pain in my right femur bone that was so bad, I was limping.  Had x-rays and there was no arthritis at all.  No one could explain it.  So, I did what I always do and just soldiered on until one day I woke up and reliazed my leg was not hurting anymore.  I think it might have been some neuro thing or vitamin deficiency that finally resolved because it has never returned.

 

I have to say that I rarely have blips at all anymore.  I am very careful, take no unnecessary chances when dining out and do that infrequently anyway.  It is a treat when we go out.  I hate getting glutened because I am one of those who erupt like a volcano.  :unsure:   The whole GI tract explodes and I get sick as a dog for about 1-2 days.  I am back to normal by day 4 but it wipes me out so I try to avoid it like the plague.  I really hate being sick.  But steadily, over time, I have gained 20 pounds and work out in the gym to develop those muscles that never had the chance to develop.  I actually have osteoporosis in my spine and osteopenia in my hip from Celiac, so that is the reason I weight train.

 

It is hard to believe it in the beginning of your Celiac life that you really can gain your health back and be comfortable and feel well but it does require time.  Of course, I do have other autoimmune problems from going so long without a diagnosis but I manage them well and do not take much medication. I am a firm believer in eating healthy, not cheating, exercise and don't forget to laugh often.  I do not let the medical world control or have too much input in what I do because I don't always believe they do the right things.  They tend to scare people. Yeah, so what, I have 4 AI diseases. I will never let that stop me or slow me down and just think positive. Even my doctor admits I am doing well and do a good job of managing things and really, with some education, anyone can achieve the same. Learn all you can, over time,so mistakes can be minimized.  It is not inevitable that you will feel badly more often than you feel good with Celiac.  Maybe in the beginning while you heal but not down the road.  Plus, after being gluten-free for so long, I am totally comfortable with this life and do not pine about foods I cannot eat. It is second nature to me and I would never go back.  You will feel this way too, I promise.  Go forward, not backward. If you are missing something food-wise, let us know because usually there is a good gluten-free version that someone will know about.  And, lastly, drink more tea.....I find that tea is so settling to the stomach.  The British have that right!  :)


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#26 IrishHeart

 
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Posted 07 May 2014 - 09:40 AM

Everything  Gem just said...

 

except I "only" have 2 AI diseases and some weird connective tissue thing no one can explain, BUT I too am back at the gym weight-training

and using my legs and arms. (for a while there, docs thought I was headed for a "scooter".  :unsure: )

 

and...except I gained (ahem ) 40 lbs. because I can tolerate a bit more dairy than she can and gelato keeps jumping in the cart at the grocery store

 

and...

 

I prefer Irish breakfast tea.  ;)


  • 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 

"Do or do not. There is no try. "-  Yoda.

"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


#27 GottaSki

 
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Posted 07 May 2014 - 09:48 AM

Darn that Jumping Gelato -- a container jumped in my cart last week and I blame Irish ;)


  • 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 :)


#28 icelandgirl

 
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Posted 07 May 2014 - 10:59 AM

Darn that Jumping Gelato -- a container jumped in my cart last week and I blame Irish ;)

That's so weird!  I thought that only happened at my grocery store!  Crazy to think that Jumping Gelato exists in other places!  :P

 

LOL!  You've all given me a good laugh that I needed.


  • 1
January 2014-Celiac
August 2014- Hashimoto's



"You never know how strong you are, until being strong is your only choice."
Bob Marley

#29 GottaSki

 
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Posted 07 May 2014 - 11:33 AM

 

LOL!  You've all given me a good laugh that I needed.

 

Laughter really is the best medicine -- and sometimes the only thing that helps -- hope you are feeling stronger today :)


  • 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 :)


#30 IrishHeart

 
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Posted 07 May 2014 - 11:52 AM

That's so weird!  I thought that only happened at my grocery store!  Crazy to think that Jumping Gelato exists in other places!  :P

 

LOL!  You've all given me a good laugh that I needed.

 

Gotta laugh. Laughing is essential. (and here's a secret... jumping gelato is world-wide!) 


  • 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 

"Do or do not. There is no try. "-  Yoda.

"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






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