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I Believe This Guy... Gluten Free May Not Be Enough


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13 replies to this topic

#1 quirozson

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Posted 21 April 2013 - 08:51 PM

I'm recently diagnosed via biopsy.  Being off gluten isn't enough for me.  I'm trying to reverse decades, maybe a lifetime of damage.  If gluten free isn't having the impact you want, maybe this guy will motivate you to seek more solutions!

 

http://scdlifestyle....iets-dont-work/

 


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#2 mushroom

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Posted 21 April 2013 - 09:32 PM

I'm glad you've found the Specific Carbodhdrate Diet helpful for you.  Many of our posters have had to go this far or sometimes even further to cope with all their food intolerances and heal their leaky guts and SIBO.  Some use the GAPS diet also.  But you would be surprised how many on this board do not eat any grains, or have had to go without grains for a long period of time in order to heal.  Healing from celiac is a voyage of self-discovery, learning how to get in touch with your body and give it what it needs, and removing what it doesn't like. 


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"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"

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(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
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#3 IrishHeart

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Posted 22 April 2013 - 05:21 AM

I agree that everyone needs to find what works best for them, but you mention you were just diagnosed, so 

realistically, you really have not been on the gluten-free diet very long to know if it is working or not. 

Dump dairy for a few months, too and see if it that helps, before you restrict your diet too much.

 

Yes, many of us have had to tweak our diets because of other food intolerances (in my case, more times than I care to count) but not everyone needs to do this drastic paring down. Many people can return to eating most foods after their gut has healed.

 

That "guy" is not a medical professional and he is selling a product.

 

"SCD has few published studies behind it, can be very difficult to follow, and has been dismissed by some doctors as scientifically unproven and even potentially risky." 

 

Please, consider reading this article for more balanced opinions (both pros and cons) of the SCD and then decide what you should so.

 

http://www.ccfa.org/...drate-diet.html

 

Best wishes to you.


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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

"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


#4 GottaSki

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Posted 22 April 2013 - 05:31 AM

Hello Again Q!

 

The SCD and Paleo or Primal are often of great benefit to those of us with Celiac Disease, but I do agree to give the strict removal of gluten a good go of it before removing other foods -- by removing only gluten or gluten and dairy -- for say 3-6 months you may find that is enough -- after those first months if you are not improving -- by all means -- look for other foods that are preventing healing -- I do wish I would have done:

 

6 months gluten-free followed by Paleo -- took nearly two years of elimination for me to figure out my body can't do any lectins or histamines.

 

Continued good luck to you as you transition :)


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-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 :)


#5 cavernio

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Posted 22 April 2013 - 04:44 PM

SIBO is supposed to be treated pretty effectively with a few weeks of specific antibiotics, so if you think you have that I'd strongly suggest you get tested for it. Something like SCD seems like you need to follow it for life in order to work.

If you want to quickly heal yourself via dietary means, I'd tentatively suggest fasting, giving your digestive system a complete break a few days at a time, repeating every so often. Of course, depending on your health, that might be dangerous.

 

That said, I'm pretty restricted with my own diet, mostly grain free, but that's to avoid gluten in so-called 'safe' quantities, not to avoid the carbs.

I guess I am dairy free too, and not just because of lactose.

 

In avatar related ideas, just wanna make sure you're not sharing puppy kisses with your dog anymore unless it's also following a gluten-free diet.

:-p


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

#6 GottaSki

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Posted 22 April 2013 - 05:04 PM

SIBO is supposed to be treated pretty effectively with a few weeks of specific antibiotics, so if you think you have that I'd strongly suggest you get tested for it. 

 

Just an aside...breath testing is not very accurate in diagnosing SIBO and often it take many courses of antibiotic to remedy SIBO -- of course this could be because some are being treated with antibiotics for SIBO based on symptoms rather than a positive breath test.


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-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 :)


#7 dilettantesteph

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Posted 23 April 2013 - 03:12 AM

It looks like hydrogen breath testing doesn't work with celiacs: http://www.ncbi.nlm....les/PMC3263982/


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#8 IrishHeart

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Posted 23 April 2013 - 05:06 AM

 

If you want to quickly heal yourself via dietary means, I'd tentatively suggest fasting, giving your digestive system a complete break a few days at a time, repeating every so often. Of course, depending on your health, that might be dangerous.

 

 

 

I have to disagree strongly with this idea.

I would never suggest fasting for a few days at a time to a newly diagnosed celiac.

Celiacs are malnourished and the last thing anyone should do is remove even more nutrients.


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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

"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


#9 kareng

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Posted 23 April 2013 - 05:21 AM

Sorry everyone who has commented-  But did I miss something?

 

She? said she is newly diagnosed.  I would say she can't really know what she needs to cut out until she has healed.  Cut dairy for a while as that seems to be hard to digest in the beginning.  You may be able to add it back in later.  Eat simple foods (not alot of multi-ingredient gluten-free foods).

 

The SCD diet seems to be healthy and you could try it for awhile.  I don't think we need to jump to SIBO, & histamine intolerances, & fasting  yet.  Patience may be the most important item to add to your diet.

 

Edited to add:

 

Just looked back at some previous posts to get a little history. - Stop eating at questionable places that don't know what has gluten in it.  You can't expect to heal if you are still getting some gluten regularly.  There is a learning curve  for gluten free living that is at least 4 months.


Edited by kareng, 23 April 2013 - 05:24 AM.

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#10 GottaSki

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Posted 23 April 2013 - 05:56 AM

Sorry everyone who has commented-  But did I miss something?

 

She? said she is newly diagnosed.  I would say she can't really know what she needs to cut out until she has healed.  Cut dairy for a while as that seems to be hard to digest in the beginning.  You may be able to add it back in later.  Eat simple foods (not alot of multi-ingredient gluten-free foods).

 

The SCD diet seems to be healthy and you could try it for awhile.  I don't think we need to jump to SIBO, & histamine intolerances, & fasting  yet.  Patience may be the most important item to add to your diet.

 

Edited to add:

 

Just looked back at some previous posts to get a little history. - Stop eating at questionable places that don't know what has gluten in it.  You can't expect to heal if you are still getting some gluten regularly.  There is a learning curve  for gluten free living that is at least 4 months.

 

Agreed.  My apologies if my post was unclear:

 

I firmly believe a newly diagnosed celiac needs to ONLY remove gluten for the first six months -- perhaps dairy IF they note a problem with it.


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-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 :)


#11 quirozson

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Posted 23 April 2013 - 06:07 PM

I'm glad my post has sparked a conversation.  My excitement over this video was not to promote the SCD diet.  I was simply motivated by the idea that recovering Celiac patients might need to remove more than just gluten for a while.

 

I have found that I have an extreme reaction now to certain foods (Not Just Gluten.)  It seems most heavily associated with broken down sugars.  The worst was from onions in a soup that cooked (caramelized) in my crock pot for 8+ hours.  But also chocolate and some gluten-free cereals with sugar as an ingredient.  

 

I don't need to follow the diet the video is "selling," but as I listen to my body I'm finding foods i'm sensitive to (hopefully temporarily).  I plan to remove the foods I find offensive as I heal.  This video helped excite me to listen to my body more carefully.  The part on removing sugar certainly sparked an epiphany when I realized it wasn't the onion I was reacting to, but the sugar in the onion.

 

Most importantly for me is the fact that my 95% of my brain fog is gone!  SOOOOOOO DEBILITATING!!!!!!

 

My advice to any recovering celiac patients is to listen to your own unique body.  

 

Oh,  and by the way I'm a "he."

 

 

 


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#12 GottaSki

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Posted 23 April 2013 - 07:32 PM

Hi Q!

Awesome news about the "fog" - keep up the great detective work figuring out what food YOUR body needs :)
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-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 :)


#13 anti-soprano

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Posted 25 April 2013 - 03:27 PM

Hi Q!

Awesome news about the "fog" - keep up the great detective work figuring out what food YOUR body needs :)

I used to call my brain fog being "naturally stoned" :o  .  I had no idea why it came and went randomly. (probably related to several donuts in one sitting!)  I didn't know what it was, but I knew I would fit in at a Phish show without a problem in those moments.  It's good to be clear headed!!!  Hope it continues for you!!


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#14 foam

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Posted 25 April 2013 - 08:02 PM

In my case I seem to have had a chronic malabsorption and leaky gut for at least 20 years. What is working for me at the moment is a mostly grain free (I'm having certified oats occasionally now) and really loading up on the trace elements. I must be completely out of quite a few important minerals like for example selenium and it's probably going to take years to build up my supplies. 

 

I've recently turned the corner with my low neutrophil count increasing 60% last time around with supplements and back in the normal range (I'm taking a lot of vitamin C) and the improved neutrophils has seemed to help keep my SIBO at bay (I also did a course of antibiotics for it). For me it seemed one course was enough, at least for now. To be fair I'm still in a whole lot of trouble immune system wise but my general condition is improving all the time so I hope at some stage my immune system will come back to me also.

 

But yes I certainly agree sometimes going off gluten is not enough in some cases. I was strictly off it for 3 years and other than stop the immediate reactions and gut pain when I ate it, it did very little or even nothing for me as far as healing goes. I only started to improve at all when I went grain free but after depending on potatoes for a while they started to give me problems too. However now I seems to have healed enough that I don't need that many carbs to hold my weight and am also off potatoes now and that helped a lot at this stage.


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