Non Celiac Gluten Sensitivity

The Risks of Cheating


This article originally appeared in our January 2016 newsletter. Due to the [unexpected] overwhelming positive feedback, I decided to improve it and post it here.

I hope you find it helpful.

Stay strong & keep moving forward.

Alan Klapperich
GIG of ECW Branch Manager




cartoon-sick-face-md
Currently, a gluten-free diet is the only medical treatment for those with gluten-related disorders. There are no alternative treatment options - no shots, no drugs, no surgeries. However, several pharmaceutical companies are working on treatment options, but they are years - if not decades away from being prescribed by your physician.

While many find it a blessing their condition can be controlled by a "simple diet" change, others consider it a curse of biblical proportions. It's no secret, transitioning to the gluten-free lifestyle can be tough.
[Notice the word - lifestyle. The changes required go far beyond just diet.]

A new lifestyle requires the desire to change, knowledge of how to make the change, and the dedication and motivation to stay the course. Yes, it's quite a departure from the previous lifestyle of eating anything from anywhere at anytime.

Barriers to Compliance

When it comes to dietary compliance for the gluten-free diet, there are many barriers that must be broken down:
  • Time constraints for cooking or preparing food
  • Misinformation
  • Lack of knowledge or education (label reading, recognizing gluten)
  • Lack of cooking skills
  • Ability to manage emotions: depression, anxiety, fear
  • Ability to resist temptation
  • Feelings of deprivation
  • Gluten-Free food availability (may be hard to find)
  • Financial restrictions (GF diet can be expensive)
  • Social pressures
  • Peer pressures
  • Travel
  • Lack of symptoms
  • Effectiveness of the diet (it doesn’t appear to help)

This list seems almost endless, but unfortunately it's still incomplete.

It seems that removing gluten is easier said than done. Give up the foods that you’ve been eating for your entire life? That’s crazy talk!


"I need gluten. I can't live without gluten!"

Ironically, a heroin addict might say something very similar. This is not surprising since narcotics and gluten are addictive. Yes, let’s add "addictive" and "withdrawal symptoms" to the barriers of compliance list.

Addictive? Withdrawal? Seriously?
Yes, yes, and yes. Read on Macduff…


A String of Addictive Pearls

gliadin mapping fasano

Think of gluten as a string of pearls that must be broken down into individual pearls [known as amino acids].

Humans do not have the enzymes to completely break down gluten into individual amino acids.

Large fragments [known as peptides] of undigested gluten remain after digestion.

Some of those peptides are known as
gluteomorphins.

Due to
increased intestinal permeability [also known as "Leaky Gut"], the gluteomorphins pass through intestinal wall and enter the blood stream.

Gluteomorphins react with the opiate receptors in the brain, just like heroin and morphine.

This reaction creates a craving - generating the desire for more of the substance.

~oOo~

Julianne Taylor, RN offers up a great explanation on how gluten creates an autoimmune reaction. http://bit.ly/2vAO4hd or http://bit.ly/3qbRbUp


….and now, back to our regularly scheduled article…




Complications of Untreated Celiac Disease

While it may be easy to rationalize away gluten cheats as simple, temporary aches and pains or as minor [major] inconveniences - beneath the surface, your body could be gearing up for a civil war that would put Gettysburg to shame.
pacman copy


A
2015 study published by The Celiac Center at Beth Israel Deaconess Medical Center (BIDMC) found that 75.5% of the study participants had adequate gluten-free diet adherence.

So what about the other one-fourth (24.5%)? They may be setting themselves up for additional [often serious] medical conditions.

Some of the possible complications of cheating:

  • Increased risk of heart attacks & stokes
  • Increased risk of blood clots & Deep Vein Venous Thrombosis (DVT)
  • Heart muscle damage
  • Heart rhythm problems
  • Coronary Artery Dissection
  • Anemia
  • Bone loss
  • Cancers
  • Ulcerative jejunitis
  • Collagenous sprue
  • Depression
  • Malnutrition
  • Neurological disorders
  • Infertility
  • Miscarriage
  • Increased risk of triggering additional associated autoimmune conditions
To learn more about the above list, please check out the following links:

7 Serious Complications of Untreated Celiac Disease
by Sarah Patrick
http://bit.ly/1OyRQZE


Complications of Untreated Non-Celiac Gluten Sensitivity

Think you can escape the risks because you have non celiac gluten sensitivity? Sorry, gluten can still rear its ugly head with the likes of:
  • Eczema
  • Psoriasis
  • Depression
  • Peripheral Neuropathy
  • ADHD
  • Multiple Sclerosis
  • Ataxia
  • Diabetes
  • Amyotrophic Lateral Sclerosis (Lou Gerhig's Disease)
  • and potentially much more

To learn more about the above list, please check out this link:

3 Reasons Gluten Intolerance May Be More Serious Than Celiac Disease
by Chris Kresser, M.S., L.Ac
http://bit.ly/1n5wysf



ChChChChanges in Behavior


"Change is not measured in leaps and bounds but in the small steps we take toward a larger goal." ~Claire Dorotik-Nana LMFT


The
Barriers to Compliance list above consists of things we can control and things we cannot control. Fear not, this lack of control does not a victim make.

The good news - we get to choose how we react in those situations; if we don't like it - we can change it.

The bad news - change is not always easy and requires effort.

The links below offer some information on how to make the changes that can lead to healthier, happier lives.

GIG of ECW - The Stages of Change: Gluten-Free Edition
by Alan Klapperich
http://bit.ly/GIGECW-Change

"Changes in lifestyle can be some of the biggest modifications we experience particularly if we have a gluten-related disorder. Transitioning to a gluten-free lifestyle turn our lives upside down. So keep calm and let's get prepared. We're going to delve into the gluten-full to gluten-free metamorphosis and give you the knowledge to make it a successful transition. I want to give you a basic understanding of change and the knowledge to make it a successful transition."




NursingTimes.net Vol 107 No 23 06/11/2014 - "Healthier lifestyles: behaviour change"
by Nicola Davies
http://bit.ly/3ozdbYN

Not necessarily a "how to" piece, but excellent background information is presented. This article is written for nurses and how to best help their patients, but patients can benefit from it as well. It looks as the many factors that influence health-related behaviors as well as several different behavior changing models. Find the method that works best for you.

"Unhealthy lifestyle choices such as smoking and poor diet are significant and preventable causes of long-term conditions. Nurses are well placed to encourage and support patients to make healthy choices. Through good communication, collaboration and goal-setting, behaviour change is possible. This article discusses evidence for the best ways to initiate and sustain behaviour change."



Note: Updated a link to Nicola Davies’ article. The link originally shared is no longer working



How to Withstand Food Peer Pressure
by Karen Diaz, RD
http://huff.to/1OMFmKx

This article does not directly address gluten-free, but it does offer some valuable tips to help combat the pressures that exists.

When you are trying to listen to your body, food peer pressure can be the last straw making you throw in the towel. Here are four important ways to withstand food peer pressure.




Updated:

01/10/21 - Updated links to external resources.
09/30/18 - Added GIG of ECW Stages of Change article.

How many celiacs in Wisconsin?

I came across a Google Search looking for the number of celiacs in Wisconsin.

Now there could be a few variations of this question:

How many diagnosed celiacs?
How many potential celiacs?

Since I don't have time to research "How many diagnosed celiacs", I'm going to answer "How many potential celiacs?". Since we know the general prevalence of celiac, we can calculate an estimate.


First we start with population of Wisconsin

According to the
2010 US Census Bureau, Wisconsin has a population of 5,686,986.


Next we need the prevalence of celiac disease

A
2003 ground breaking medical study conducted by Dr. Fasano determined that ...

1 in 133 of normal, healthy people have Celiac Disease [most do not know it].
1 in 56 of those that have related symptoms.
1 in 39 of those that have a 2nd degree relative [aunt or cousin] with Celiac Disease.
1 in 22 in those that have a 1st degree relative [parent or sibling] with Celiac Disease.

Celiac Disease affects about
1% (3 million) of the population in the USA.


Time to fire up the calculator

If we apply the 1 in 133 - we get an estimate of 42,759 people
If we apply the 1% -
we get an estimate of 56,869 people that potentially could have CD

We can estimate the number of diagnosed. According to Dr. Peter Green
only about 10% of the 1% are actually diagnosed.

If we apply 10% to the 1% -
we get an estimate of 5,686 diagnosed celiacs in Wisconsin.

A bit more math reveals this:
approximately 51,183 people are currently undiagnosed.


Non-Celiac Gluten Sensitivity aka The Gluten Syndrome

Would you like to see an even larger number? It estimated that Non-Celiac Gluten Sensitivity affects anywhere from
6% to 40% of the population.

6% of 5,686,986 =
341,219 people that gluten affects adversely.
40% of 5,686,986 =
2,274,794 people that gluten affects adversely

That's a lot of people! Now, let's calculate the healthcare dollars chewed up because of gluten. Ooops, I don't have a calculator big enough for that task! "Hello NASA? Yeah, this is Al from GIG of ECW..."

If you'd like to calculate the numbers of your home town, check out our
Celiac Disease/Non Celiac Gluten Sensitivity Calculator.

Would you like to see these numbers broken down by county? Here ya go...
,
Wisconsin Counties
Estimated number of people with Celiac & NCGS
County 2010 Census

Population
Est. # of Celiacs

1%
Est. # of DX Celiacs

10% of 1%
NCGS

6%
NCGS

10%
NCGS

40%
Adams 20,875 209 21 1,253 2,088 8,350
Ashland 16,157 162 16 969 1,616 6,463
Barron 45,870 459 46 2,752 4,587 18,348
Bayfield 15,014 150 15 901 1,501 6,006
Brown 248,007 2,480 248 14,880 24,801 99,203
Buffalo 13,587 136 14 815 1,359 5,435
Burnett 15,457 155 15 927 1,546 6,183
Calumet 48,971 490 49 2,938 4,897 19,588
Chippewa 62,415 624 62 3,745 6,242 24,966
Clark 34,690 347 35 2,081 3,469 13,876
Columbia 56,833 568 57 3,410 5,683 22,733
Crawford 16,644 166 17 999 1,664 6,658
Dane 488,073 4,881 488 29,284 48,807 195,229
Dodge 88,759 888 89 5,326 8,876 35,504
Door 27,785 278 28 1,667 2,779 11,114
Douglas 44,159 442 44 2,650 4,416 17,664
Dunn 43,857 439 44 2,631 4,386 17,543
Eau Claire 98,736 987 99 5,924 9,874 39,494
Florence 4,423 44 4 265 442 1,769
Fond du Lac 101,633 1,016 102 6,098 10,163 40,653
County 2010 Census

Population
Est. # of Celiacs

1%
Est. # of DX Celiacs

10% of 1%
NCGS

6%
NCGS

10%
NCGS

40%
Forest 9,304 93 9 558 930 3,722
Grant 51,208 512 51 3,072 5,121 20,483
Green 36,842 368 37 2,211 3,684 14,737
Green Lake 19,051 191 19 1,143 1,905 7,620
Iowa 23,687 237 24 1,421 2,369 9,475
Iron 5,916 59 6 355 592 2,366
Jackson 20,449 204 20 1,227 2,045 8,180
Jefferson 83,686 837 84 5,021 8,369 33,474
Juneau 26,664 267 27 1,600 2,666 10,666
Kenosha 166,426 1,664 166 9,986 16,643 66,570
Kewaunee 20,574 206 21 1,234 2,057 8,230
La Crosse 114,638 1,146 115 6,878 11,464 45,855
Lafayette 16,836 168 17 1,010 1,684 6,734
Langlade 19,977 200 20 1,199 1,998 7,991
Lincoln 28,743 287 29 1,725 2,874 11,497
Manitowoc 81,442 814 81 4,887 8,144 32,577
Marathon 134,063 1,341 134 8,044 13,406 53,625
Marinette 41,749 417 42 2,505 4,175 16,700
Marquette 15,404 154 15 924 1,540 6,162
Menominee 4,232 42 4 254 423 1,693
County 2010 Census

Population
Est. # of Celiacs

1%
Est. # of DX Celiacs

10% of 1%
NCGS

6%
NCGS

10%
NCGS

40%
Milwaukee 947,735 9,477 948 56,864 94,774 379,094
Monroe 44,673 447 45 2,680 4,467 17,869
Oconto 37,660 377 38 2,260 3,766 15,064
Oneida 35,998 360 36 2,160 3,600 14,399
Outagamie 176,695 1,767 177 10,602 17,670 70,678
Ozaukee 86,395 864 86 5,184 8,640 34,558
Pepin 7,469 75 7 448 747 2,988
Pierce 41,019 410 41 2,461 4,102 16,408
Polk 44,205 442 44 2,652 4,421 17,682
Portage 70,019 700 70 4,201 7,002 28,008
Price 14,159 142 14 850 1,416 5,664
Racine 195,408 1,954 195 11,724 19,541 78,163
Richland 18,021 180 18 1,081 1,802 7,208
Rock 160,331 1,603 160 9,620 16,033 64,132
Rusk 14,755 148 15 885 1,476 5,902
St. Croix 84,345 843 84 5,061 8,435 33,738
Sauk 61,976 620 62 3,719 6,198 24,790
Sawyer 16,557 166 17 993 1,656 6,623
Shawano 41,949 419 42 2,517 4,195 16,780
Sheboygan 115,507 1,155 116 6,930 11,551 46,203
County 2010 Census

Population
Est. # of Celiacs

1%
Est. # of DX Celiacs

10% of 1%
NCGS

6%
NCGS

10%
NCGS

40%
Taylor 20,689 207 21 1,241 2,069 8,276
Trempealeau 28,816 288 29 1,729 2,882 11,526
Vernon 29,773 298 30 1,786 2,977 11,909
Vilas 21,430 214 21 1,286 2,143 8,572
Walworth 102,228 1,022 102 6,134 10,223 40,891
Washburn 15,911 159 16 955 1,591 6,364
Washington 131,887 1,319 132 7,913 13,189 52,755
Waukesha 389,891 3,899 390 23,393 38,989 155,956
Waupaca 52,410 524 52 3,145 5,241 20,964
Waushara 24,496 245 24 1,470 2,450 9,798
Winnebago 166,994 1,670 167 10,020 16,699 66,798
Wood 74,749 747 75 4,485 7,475 29,900
Totals 5,686,986 56,870 5,687 341,219 568,699 2,274,794