Celiac: Inherited or Acquired?

September 15, 2011 · 14 comments

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In the past 50 years celiac disease has increased from 1 in 700 to 1 in 100. While many think it is mainly an “inherited” disorder, the pattern of inheritance is complicated. Additionally, there is a lot more involved than inheritance. It’s easy to blame a disease state on inheritance. So, what then is causing this increase in gluten sensitivity? There are several reasons listed below which I will explain further:

  • Inheritance
  •  Gluten deamidation
  •  Gluten storage in bins leading to enterotoxin contamination
  •  Poor nutrition due to SAD (Standard American Diet)
  •  Genetically modified foods that have been significantly altered from their original form
  •  Hybridization of wheat creating new cultivars that are not tested for safety or antigenicity
  •  Leaky gut syndrome
  •  Damage to the intestinal lining
  •  Enzyme deficiency

The type of inheritance pattern that celiac disease follows is called multifactorial, meaning that it is caused by many factors, both genetic and environmental. Researchers think that several factors must exist in order for the disease to occur.

The patient must have a genetic predisposition to develop the disorder. Then something in their environment acts as a trigger to their immune system, causing the disease to become active. For conditions with multifactorial inheritance, people without the genetic predisposition are less likely to develop the condition with exposure to the same triggers, or they may require more exposure to the stimulus before developing the disease than someone with a genetic predisposition.

Stimuli that may provoke a reaction include physical stress such as surgery; a change to a low fat diet, because that usually involves eating an increased number of wheat-based foods; severe emotional stress; or a bacterial or viral infection. The combination of genetic predisposition and an outside stimulus leads to celiac disease.

This set of circumstances may apply to the onset of many “chronic” diseases. It is my belief that before the onset or “trigger” of a chronic condition, there is a “bucket” full of other, underlying reasons for the expression of a disease state. The “bucket” may contain some of the reasons listed above and may become full to overflowing with issues that allow the trigger to activate a disease state.

For example, in adult onset celiac, that person may have several underlying conditions that will eventually allow for the expression of celiac. They may have a poor diet to begin with — the Standard American Diet, that includes plenty of deamidated gluten and genetically modified foods, as well as a high carb, low fat diet. They may have enzyme deficiencies that leads to poor digestion of food. This in turn leads to poor nutrient absorption and leaves the person in a deficient state. Along comes a trigger such as a severe emotional upset or a surgery and “suddenly” you have  disease state. It is really not a sudden onset even thought the symptoms may be expressed in a sudden way. It’s something that has been festering for months to years. Due to the above listed environmental toxicities, the disease rears it’s ugly face.

Deamidation is a new industry adopted form of processing gluten that uses acid or enzymes. This deamidated gliadin is soluble in water (whereas regular gliadin is not) and so is more versatile and beneficial for the food industry. It may be added to many foods easily without changing the food’s qualities.

However, the immune response to this deamidated gliadin is much greater than to regular gliadin. A double blind, placebo controlled food challenge study in 2003 concluded that these processes used for gluten deamidation generate new allergenic epitopes.

Studies show that this extensive use of deamidated wheat isolates (gliadin) may be a major cause of hidden food allergies.

These isolates are used as food emulsifiers, gelling agents, stretchablility agents in meat products, sauces and soups and as clarifying agents in red wine. Clearly, it is pervasive in the packaged food supply. Sadly it is even present in protein products like meat. This makes it extremely difficult for a sensitive person to avoid this chemical.

Studies show that this deamidation of gliadin peptides produces a greater activation of T cells – a greater immune response to it.

Complicating the issue is that there are many fractions of gliadin and all of these fractions can cause reactions. However, only the most common fractions are typically tested, leaving many people with a negative test which can be very misleading.

In fact, it was found that 50% of patients do not respond to the alpha-GLIA peptide (most commonly tested) but to a diverse set of gliadin and glutenin peptides, including 6 novel epitopes. Fortunately there are some labs that are starting to test for all the fractions but this is not currently in main stream medicine.

To further complicate the problem, some people have cross reactivity problems. That is, certain foods will cause the same antibody reaction even though it is not considered gluten. Some foods to be careful with if you are gluten sensitive are: milk and dairy products (some people are just fine with raw fresh dairy products), chocolate, millet, amaranth, quinoa, spelt, sesame, corn, rice and potato.

Ultimately, some people with celiac disease need to be off all grain, starch and sugar products in order to heal the intestine — some just for a while, some for life. That is where the Specific Carbohydrate Diet and the GAPS Diet become viable options for healing. What are your thoughts on this? Leave a comment and let me know!

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{ 11 comments… read them below or add one }

1 Allison Joi Burgueno September 16, 2011 at 2:01 am

I really like that you wrote this. Five people in my family have Celiac Disease. All of us “acquired” it as adults. My own personal story – I was going along happily living the wheat eating life and in my 20s I ended up with mononucleosis and came out of it allergic to peanuts (not something that was an issue previously) and with Celiac symptoms.  
My immune system took a blow from environment. It took 4 years to figure out I had Celiac Disease too…then I started talking with relatives who shared they had it - I never knew! Very interesting.

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2 Jill September 16, 2011 at 10:15 am

Hi Alison,
Thanks for sharing. The average time for correct diagnosis in cases of celiac can be as long as 14 years! Can you imagine going that long without knowing what is wrong and suffering? It is common to get the full expression of (any) disease after a stress whether it is emotional or physical.

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3 KerryAnn Cobb Foster September 16, 2011 at 2:13 am

I developed celiac disease after having been on a strictly traditional foods diet for several years, including only soaked grains and raw milk.  Miscarrying twins after an accident set it off.  I don’t believe I would have miscarried if the accident hadn’t happened, as it was a healthy pregnancy.  I slid downhill until I got seriously ill.  I dropped 60 pounds in ten weeks when the worst hit.

I think there are more factors and an interplay that we’re not close to understanding.  Many of the women I know who have celiac had it set off during or after a pregnancy or miscarriage, which makes me wonder about a hormonal component.

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4 Jill September 16, 2011 at 10:18 am

HI Kerry Ann,
Thanks for sharing. I think that any physical stress such as an accident and certainly a pregnancy is a stress factor that can set off disease. Sorry to hear about what must have been a terribly stressful and sad part of your life.

There is so much we do not know about the interaction of hormones and how that affects the individual…

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5 Jill2 September 16, 2011 at 11:40 am

Any antibiotics prescribed/taken after the miscarriage?  Just another thought as to another factor that could contribute to gut issues.  It seems to me that I was prescribed antibiotics many years ago after a miscarriage.  I think there is just so much a body can take before something breaks down, and gut health seems to be a common area of breakdown.

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6 Merina September 22, 2011 at 12:02 am

I thought I had IBS because of intermittent diarhea starting in high school.  Like you,KerryAnn, I discovered I had PCOS when I went to concieve my first born.  I took glucophage to control the hyperinsulemia and conceived.  Shortly after giving birth, I developed eczema (atopic dermatitis) that covered at least 60% of my body…another symptom…I was clueless.  While doing a low fat diet (which was fairly low in carbs, but not gluten free) I had a few months of diarhea after each meal. I did also have occasional vomitting that was much more uncomfortable than any I remember dealing with before. With my second child I had such nausea that I lost about 15 lbs during my first trimester. Later that year my father realized he had problems with gluten.   I think what finally did me in was another low fat diet, 8 months with lots of powdered packets of “food”.  After that I started low carb traditional foods as a method of weight maintenance.  I think that saved me and allowed me to see my reactions when I would cheat with bread or cookies.  Even so, it took a while for me to figure it out, I wasn’t reacting to sprouted bread, so I think that was confusing.  As time went on, my symptoms got worse and worse until my daughter’s 3rd birthday when I decided to toss guilt aside and indulge in the awesome real food cake I had made…but I used flour.  I was so sick that night, vomitting, diarhea, shaking, heart racing, freezing cold in the middle of summer…I had no more doubt as to what my reactions were. 
Time to go grain free.
I’m so happy to read this post, because it’s so important to me to figure out how this all happened.

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7 Jill September 22, 2011 at 1:17 am

HI Merina,
Thanks for sharing what must have been a difficult time. It is hard to diagnose as the symptoms can vary so much — many times they are not even gastro intestinal as you found with your eczema.

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8 Hannah September 16, 2011 at 12:41 pm

I think every bullet point you have is a factor. When I got my test done I have 2 celiac disease genes so when my health went kaput there was no avoiding that one. But I do believe it can be reversed.

I think of it as a light switch if it can be turned on then there must be a way to turn it OFF.

That’s my two sense anyway.

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9 stephanie September 22, 2011 at 4:06 pm

Couple of comments:

1) women are more vulnerable to autoimmune diseases, and pregnancy does very much affect them, because of the inate immune system design that protects a fetus from being destroyed by the mother’s immune system.  Typically, the model is that active disease is suppressed during pregnancy or a new one is triggered post-pregnancy as the immune system ramps back up.

2) I’d also love to believe there is a way to turn of the expression of celiac disease genes!  Unfortunately, we’re pretty far from turning off any genes, so in the mean time, please follow any prescribed diets.

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10 Barbeebutts September 22, 2011 at 7:18 pm

Great Story.
Allow me to add to that and give you some additional fodder for thought.

For some bizzare reason, Dr’s are now more ‘eager’ to diagnose celiac.
I had suffered from an undiagnosed digestive disorder for over 30 years. A change in my insurance brought on a change in doctors.
This new Dr immediately pointed to celiac and INSISTED that was the cause. I repeatedly told the Dr that my distress was not associated w/ the consumption of ANY of the grasses and food products contaning or contaminated by those grasses whch are commonly known to incur celiac response. She sent me to a specialist who agreed w/ her and similarly dismissed my input as ignorant and immaterial.

This specialist was SURE I was too stupid to know what I was taking about and subjected me to several invasive and (I say traumatic) medical tests and ‘tried’ to force a diet change on me. MONTHS later-multiple biopsies later…Nope. No celiac. (and no apology either.) 

Bile acid malabsortion-a result of having my gallbladder removed over 30 years before. I was sensitive to FAT not wheat.

Notwithstanding that your reasonings above are valid-perhaps we can add another. The possibility that celiac diagnosis is becoming more popular or fashionable. (Somewhat akin to the determination in the 90′s and 00′s that absolutely everyone has some form of Attention Deficit Disorder.)

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11 Jill September 22, 2011 at 8:12 pm

So true. It is the “flavor of the month” so to speak and doctors are jumping on the bandwagon. Unfortunately, if you “test” negative they then dismiss problems with gluten. However, new research has shown that gluten intolerance exists in a lot of people even though they test negative for frank celiac disease.

Unfortunately, the popularity of this diagnosis may cloud the thinking of some doctors as your experience has shown. Thanks for sharing.

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