It Starts With My Own Celiac Story
Recently, I shared with you how my “IBS” (Irritable Bowel Syndrome) was uncontrolled for many years, leading to embarrassing bathroom moments.
I had “IBS-D” (a catch-all term to explain symptoms with diarrhoea) which was really misdiagnosed Celiac disease.
Years later, I was diagnosed with Hashimoto’s disease. I was told by the doctor to take the medicine and I would be fine. But, I wasn’t.
For the first half of my life, I ate gluten-filled foods which contributed to leaky gut and promoted those IBS symptoms.
For nearly a decade, my doctor unknowingly prescribed “eating more whole wheat” to resolve my IBS-D.
My chronic diarrhoea was no joke. But, I do find it funny how many doctors are unaware of the connection between Celiac/gluten intolerance, leaky gut, IBS, and autoimmune disease.
And, until I became a student in nutrition school doing my own research, initiating my own elimination diet and implementing my own gut healing, I didn’t know there was any other way to heal or feel better.
I am not alone.
Even if you are being treated (with medicine) for Hashimoto’s, you might still be feeling poorly.
That might be in part due to digestive issues (like leaky gut) and food intolerances (like to gluten).
If you are following conventional treatment for Hashimoto’s alone, synthetic hormone replacement with a medication like Synthroid does not address the underlying digestive issues and gluten intolerance.
If you have Hashimoto’s, I believe it is crucial to get gluten out of your diet so you can start to feel better!
Here is everything I want you to know about the connection between Hashimoto’s and gluten intolerance…
Celiac Disease Statistics and the Link to Hashimoto’s
- Celiac disease affects at least 3 million Americans.
- The average length of time it takes for a symptomatic person to be diagnosed with Celiac disease in the United States is four years.
- People with celiac disease are more likely to develop Hashimoto’s than the general public, and the reverse is also true.
- The increased risk is true despite treatment with a gluten-free diet or thyroid medications and may be due to overlapping genetic predispositions.
- In a recent study by Alessio Fasano, MD, a recognized Celiac disease expert, one half of the people newly diagnosed with Celiac disease also had Hashimoto’s thyroid disease.
Additionally, a 2008 study by Naiyer et al explored the connection between Hashimoto’s and Celiac disease. This is what they discovered:
- Anti-tissue transglutaminase (tTG) antibodies are present in patients with active Celiac disease.
- These antibodies will decrease and eventually disappear on a gluten-free diet.
- These anti-tTG antibodies bind and react to thyroid tissue as well, which may contribute to Hashimoto’s development.
- Antithyroid antibodies were observed more often in patients with Celiac disease than in either controls or patients with another autoimmune condition (eg, Crohn’s disease).
This basically means, if you are suffering with symptoms of Celiac disease, but undiagnosed for any length of time, your risk for developing Hashimoto’s is imminent.
My diagnosis was the opposite – I was first found to have the anti-thyroid antibodies (in the thousands!) and received a diagnosis of Hashimoto’s.
It was a few years later that I was found to have anti-tTG antibodies (in the thousands!) and finally received a diagnosis for Celiac disease.
What is Celiac Disease?
Celiac disease is an autoimmune condition in which gluten (a protein component found in wheat, barley, and rye) triggers an immune response that causes damage to the small intestine.
Specifically, there is damage to the tiny, finger-like projections that line the small intestines (called “villi”) that promote nutrient absorption.
When someone with Celiac disease consumes gluten, inflammation and damage to the villi can start within a few hours.
And, while this damage isn’t usually permanent, repeated exposure to gluten renders the villi useless, thereby reducing nutrient absorption.
It is mainly for these reasons that Celiac disease is typically thought of as a gastrointestinal disease.
But there are many, many symptoms that can arise not just due to the damage to the villi, but also as a result of the malabsorption of nutrients.
Symptoms of Celiac Disease can Include
- gastrointestinal problems like diarrhoea and constipation
- abdominal pain
- gas and bloating
- weight gain or loss
- bone pain
- muscle weakness
- sleep disorders
- hair loss
- weak, brittle nails
- vision changes
- neurological problems, tingling, numbness
- fibromyalgia-like pains
Additionally, cases of “silent Celiac disease” or “asymptomatic Celiac disease” exist, in which damage to the intestinal villi occurs without any obvious physical symptoms.
I have known many clients over the years who fall in to this category.
What Happens When Celiac Disease is Untreated?
- iron deficiency anemia (occurs in up to 33% of Celiac disease patients)
- lactose intolerance (due to a loss of lactase production in the small intestine)
- osteoporosis or dental problems (due to a reduced absorption of calcium, magnesium, zinc, phosphorous, vitamin D and other bone-building nutrients)
- disorders involving the central or peripheral nervous system (including anxiety, depression, and neuropathy, due to reduced absorption of critical B vitamins such as B12, B6, folate, etc.)
- certain cancers (including intestinal lymphomas, small bowel cancer, esophageal cancer, and cancer of the pharynx, due to the cellular damage and changes, leading to tumor growth and cell division problems)
- problems with organs such as the gallbladder, pancreas, and liver due to mal-digestion, lack of enzymes, reduced nutrient absorption and metabolic errors within the cells.
- anti-tTG antibodies bind and react to thyroid tissue as well, which may contribute to Hashimoto’s development
Gluten’s Impacts on Your Body Systems
The only way to reduce symptoms and protect against the myriad complications of Celiac disease is to go on a strict gluten-free diet for life.
I call it “GLUTEN ZERO.”
Breaking up with gluten.
Not even a tiny bit.
And, one must protect against cross-contamination, accidental gluten exposure and consumption of gluten-reactive foods.
Gluten affects far more than just the intestinal villi.
In a person with Celiac disease, the impacts of regular gluten consumption are far-reaching and potentially life-threatening.
Ways in which gluten specifically alters the digestive system, immune system, organs and body as a whole:
- Gluten directly impacts the permeability of the intestine. It causes the production of Zonulin – a protein produced in our intestines that bind to epithelial cells and directly cause the gut to “leak”.
- Gluten contributes to antibody formation. When antibodies are formed, they cause the secretion of inflammatory chemicals leading to tissue damage.
- Gluten mimics body tissue through a phenomenon called “molecular mimicry”. This allows antibodies to cross react with the tissues of the body causing confusion in the immune system, leading to autoimmune disease – where your immune system mistakenly attacks the body.
- Gluten is a chemical stressor on the body. In the process of combating this stress, vitamin and mineral status are further reduces which can lead to other endocrine problems like Adrenal Fatigue Syndrome.
- Gluten ingestion causes detrimental changes in intestinal flora (also known as “gut dysbiosis”). This makes the gastrointestinal tract and whole body prone to infection.
- Gluten induces the production of pro-inflammatory cytokines (chemicals that damage cells) leading to digestive and systemic inflammation.
- Gluten causes neurochemical changes in the production of neurotransmitters (chemicals that allow the nervous system to communicate, such as serotonin, dopamine, acetylcholine, epinephrine, and histamine).
- Gluten is a known neurotoxin (toxins that are destructive to nerve tissue) that is known to affect the function in both developing and mature nervous tissue.
- Gluten can damage the intestine, the pancreas, the liver, and the gall bladder. This damage reduces the body’s ability to produce digestive enzymes. This in turn, compromises the digestive processes and its effectiveness.
- Gluten consumption leads to the development of anti-tTG antibodies which bind and react to thyroid tissue, which may contribute to Hashimoto’s development
Celiac Disease and Thyroid Hormone Absorption
The American Thyroid Association has found that the average dose of levothyroxine needed to treat patients with Hashimoto’s disease alone was lower than the average dose required to treat patients with Hashimoto’s and Celiac disease.
Their studies indicate that when patients with Celiac disease go on a gluten-free diet while staying on the same dose of levothyroxine, their TSH level decreased, indicating that their absorption of thyroxine had improved.
I see this in my practice quite frequently.
When my clients go gluten-free, they often get to reduce their dosage of thyroid replacement hormone because it starts to work so much better.
Their doctors are surprised! “What are you doing that has decreased your need for thyroid hormone?” they say.
I want more doctors to know about this important dietary/lifestyle component for their patients: GET THE GLUTEN OUT.
So, Gluten Destroys the Thyroid
Molecular mimicry is what happens when the immune system identifies certain proteins and then wrongly attacks everything that has a similar amino acid sequence.
And, so, when we eat a certain “mimicking” food (like gluten) day in and day out…oops, well, our immune system starts to get a little confused.
I like to call this the “wonky” immune system. It’s sort of the pre-autoimmune phase.
Guess what: the molecular mimicry phenomenon occurs in everyone.
And, the process impacts thyroid function in everyone, which is why I recommend that all of my clients – especially those with thyroid dysfunction and/or a family history of thyroid dysfunction – remove gluten from their diet.
Molecular mimicry (body see thyroid tissue as foreign due to gluten consumption) –> Autoimmunity – the system of immune responses of an organism against its own healthy cells and tissues.
Genes Also Play a Role in Celiac Disease
Celiac disease occurs in people who have certain gene variants within the human leukocyte antigen (HLA) complex.
The genes in this complex help the body distinguish between its own proteins and those of foreign invaders (such as bacteria and viruses).
As a result, variant genes in this category play a major role in causing autoimmunity.
The two variants of the HLA (human leukocyte antigen) gene, DQ2 and DQ8 have been associated with gluten sensitivity and Celiac disease.
90% of Celiac patients have the DQ2 gene variant, and the remaining 10% have the DQ8 gene variant.
Here are some basic genetic statistics:
- 1 copy of HLA-DQ2 = increased risk of Celiac disease 10x
- 1 copy of DQ2 + one copy of DQ8 = increased risk of Celiac disease 14x
- 2 copies of HLA-DQ2 = increased risk of Celiac disease 31x
Approximately 98% of people with Celiac disease carry one or more copies of these “Celiac genes”.
Some evidence suggests that people carrying two copies are susceptible to more severe cases of the condition—including refractory Celiac disease, which occurs when the small intestine fails to heal even after adopting a gluten-free diet.
Having a copy of DQ2 and DQ8 raise the risk of an inappropriate immune response to gliadin (a protein fraction of gluten). And this ultimately leads to damage and atrophy of the intestinal villi.
It’s important to note that not everyone who tests positive for HLA-DQ2 or DQ8 will develop Celiac disease.
About 30% of the US population carries at least one copy, but 29 out of 30 of those people will never become Celiac. Unless…
The Missing Link Between Celiac Disease and Hashimoto’s
Celiac Disease and Hashimoto’s share a common genetic link – the HLA-DQ2 allele.
So, someone who has the HLA-DQ2 allele is at risk to develop Celiac disease.
In order for Celiac disease to fully develop, other environmental triggers need to be present (in particular, leaky gut).
When leaky gut co-occurs with gluten exposure and genetic predisposition, the perfect storm is created for Celiac disease.
This largely holds true for the development of Hashimoto’s. They are like two sides of the same coin.
In a nutshell…
- You need the genetic predisposition (like the HLA-DQ2 allele mentioned above).
- You need gluten, which is sticky and invasive and increases zonulin production leading to leaky gut.
- You need the immune system to kick in.
- Your immune system is so overworked the immune cells lose self tolerance.
- Your immune system starts attacking your own tissue.
Peternell Family Gene Profiles
I am still studying the many complex genetic influences on our health.
But, I can also tell you that my family and I have been wonderful guinea pigs for learning.
Because I am adopted, and when I realized my young children were also gluten intolerant, I decided to have our whole family tested for Celiac genes.
Mainly, I wanted to understand the lifetime risks we all carried.
There are two profiles here – the first identifies the specific DQ2.5 and DQ8 genes associated with Celiac disease.
The other is a different set of HLA non-Celiac gluten-intolerant genes.
Where it says one or two copies, it means that the variant (“bad”) alleles are present and a pose a threat in contributing to the disease.
|HLA-DQA1 DQ2.5 rs2187668||ONE COPY||NO COPIES||NO COPIES||NO COPIES|
|HLA DQ8 rs7454108||NO COPIES||NO COPIES||NO COPIES||NO COPIES|
|HLA-DQA2 rs2858331||ONE COPY||TWO COPIES||TWO COPIES||TWO COPIES|
So, what you see here is:
Sara (me) = Celiac disease
Mark (my husband) = non-Celiac gluten-intolerant
Clay (my son) = non-Celiac gluten-intolerant
Molly (my daughter) = non-Celiac gluten-intolerant
What is Non-Celiac Gluten-Intolerant
According to Dr. Alessio Fasano, director of the Center for Celiac Research at MassGeneral Hospital for Children, gluten/gliadin creates a leaky gut in everyone.
It’s because exposure to gluten in every body (not just those who are gluten-intolerant or have gluten-intolerant genes) instigates the release of a substance called “zonulin” in your intestines.
This chemical tells your gut lining to “open up.”
However, Dr. Fasano says the degree of your leaky gut will vary depending upon your genetics.
So, if you’re genetically predisposed to Celiac disease (like me), you’ll suffer the worse-case scenario – a large production of zonulin. And a gut that remains open and leaky for a long time and comes with a host of co-conditions related to Celiac disease.
Those with the genes for gluten sensitivity only (like my kids and husband) will also experience a leaky gut. But they would likely not experience the same intensity and degree of damage as that of someone with Celiac disease.
But the leaky gut is enough for gluten to generate an inflammatory response.
So for those who do not have genes predisposing them to Celiac or gluten sensitivity, what happens for them?
According to Dr. Fasano, those people too will develop a leaky gut, (as mentioned before everyone does). However, it won’t last long and cause many symptoms so little to no damage will occur.
This leads me to believe the “no genes to gluten sensitivity” is the only category of people who technically do not have gluten-related symptoms.
From my experience with clients who have Hashimoto’s and who bring me their 23andme data, they are almost always carrying at least one copy of the gluten-intolerant gene.
Genetic testing can be a very viable option for individuals and families trying to better understand their health risks associated with consumption of gluten.
Other Tests to Consider for Celiac disease
Let me start out by saying that, it is crucial to get tested for Celiac disease. It’s especially so if you have a 1st-degree relative with Celiac disease, as this puts you at a 1 in 10 risk of developing celiac yourself.
In order to determine if you have Celiac disease or are gluten intolerant, ask your doctor to order the following tests:
- IgA anti-gliadin antibodies (these are found in about 80% of people with Celiac disease)
- IgG anti-gliadin antibodies
- IgA anti-endomysial antibodies
- Tissue Transglutaminase antibodies
- Total IgA antibodies
- Genetic testing (HLA DQ2 and HLA DQ8) as discussed above
- Intestinal biopsy (for Celiac disease, only if you are eating gluten currently)
But, the problem with many of these tests is, gluten is made up of hundreds of different peptides and the peptide gliadin is made up of 12 different sub-fractions.
In other words, most modern-day testing focuses on only one alpha-gliadin (one of the twelve sub-fractions of the gliadin peptide). Therefore, there is considerable room for error and false negative tests.
The key with the above tests is that you should currently be eating a gluten-filled diet in order to detect gluten antibodies.
I suggest the following Celiac screen test for the clients I work with remotely: GLUTEN SENSITIVITY/CELIAC SCREEN. It costs $5999 but is valued at over $1,100. Yes, that is costly, but getting a pretty definitive test can be life-changing!
What’s Being Tested:
Endomysial Antibody IgA
Immunoglobulin A (Total IgA)
Tissue Transglutaminase (IgG + IgA)
HLA DQ2 + HLA DQ8 Genetic Test for Celiac Disease
Gliadin Antibodies IgG + IgA
The good folks at True Health Labs allow you to directly order labs that make the most sense for your health condition, allowing you to better participate in the overall management of your health.
If you do order these labs, be sure to take them with you to your next provider appointment. Show them that you are willing to do what it takes to get the correct information for the best treatment plan possible.
Working with me through the customized Adult Advanced Program is the best way to utilize Celiac test results for optimal dietary and lifestyle enhancements.
So, if you already know you don’t tolerate gluten, I do not recommend adding it back into your diet just to see what happens on a test.
I was already 5 weeks in to a gluten elimination diet when I finally got the Tissue Transglutaminase antibodies blood test.
My antibodies were in the thousands!
I was referred to a Gastroenterologist who wanted me to eat gluten again and have an intestinal biopsy to confirm Celiac disease.
I said “no thanks” and remained gluten free.
Later on, the above genetic tests revealed and confirmed what I already knew: I have Celiac disease.
The Gold Standard: Gluten Elimination Diet
The #1 bit of advice that I share with my clients is this:
“If you feel significantly better when you are not eating gluten or feel worse when you put it back in your diet, well, then gluten is likely a problem for you.”
Your body knows better than any test.
My favorite phrase when dealing with digestive disorders is “When in doubt, get the gluten out!” Enough said.
Ready to try giving up gluten?
Start with a 30-day gluten elimination diet. It’s not too hard.
Start by removing all gluten, wheat, and gluten-grains from your diet.
Where is gluten found in foods?
- Wheat-based products: bread, pasta, cereals, wheat flour, couscous, crackers, baked goods, cakes, by-products of wheat added as thickening agent to sauces, ice cream, processed foods, and more.
- Other gluten-containing grains: barley, rye, bulgur, seitan, teff, triticale and some oats that are grown in fields close to wheat fields (they cross pollinate and the wheat contaminates the oats). This means beer (made with barley AND wheat) also contains gluten. Only “certified gluten-free” oats are 100% gluten free.
- Gluten is even found in weird places, like skincare products, bleu cheese, hot dogs and even some supplements and medications.
An elimination diet works best if you remove gluten-filled foods for at least 30 days, then reintroduce them to see if they cause a reaction.
During the elimination, focus on consuming an anti-inflammatory diet with plenty of:
- Vegetables – leafy greens like spinach and kale, sweet potatoes, cucumber, carrots, radishes, cabbage, broccoli, etc.
- High quality proteins – grass-fed beef, wild-caught salmon, pasture-raised eggs, organic poultry, bison, etc.
- Healthy fats – coconut oil, olive oil, avocados, olives, nuts, seeds, etc.
- Try to avoid “Gluten-Free” packaged and processed foods as much as you can. Sure, there will be times when you want a sandwich, and there are plenty of good gluten free options available. Just limit these occasions and focus as much as you can on a whole food diet.
When you reintroduce foods, you need to be on the lookout for various symptoms which may return.
Your reactions may be delayed by as long as 72 hours. And, symptoms are not limited to the digestive system.
Pay close attention to the following symptoms which may indicate you are gluten intolerant.
And, if severe enough, warrants special follow up with your physician for additional testing.
- diarrhea and constipation
- abdominal pain
- gas and bloating
- mouth sores, canker sores
- joint pain
- eczema or skin rashes
- headaches, migraines
- feelings of anxiety or depression
- sleep issues (feeling extra sleepy after meals or not being able to sleep at night)
- brain fog
- change in menstrual period (females)
Gluten Free Resources
For a complete and updated list of gluten-containing foods, please visit Celiac.org. Other helpful links to blogs, books, and more – which you may enjoy reading or watching:
- The Gluten Summit: with Tom O’Bryan, DC, CCN, DACBN
- “Grain Brain” book by Dr. Perlmutter
- Find Me Gluten Free Restaurants by zip code
- Elana’s Pantry for amazing recipes
- Against All Grain for gluten and grain-free recipes and meal plans
Online Shopping Resources:
Sunbasket meal delivery: This is our family’s go-to for delicious delivery meal kits made with organic produce and clean ingredients (when I don’t have the time to shop or meal plan). Many gluten free, Paleo, even Keto dietary options are available.
Butcher Box: ButcherBox delivers 100% grass-fed beef, free range organic chicken and heritage breed pork directly to my door. That’s one less stop I have to make while shopping. 100% gluten free meat – a great source of protein for healing the thyroid!
Thrive Market: I buy all our healthy food staples from Thrive Market. They carry a TON of gluten-free pantry items like spices, rice noodles, certified gluten-free oats, nut butters, delicious snacks, baking ingredients and more.
Newly Diagnosed With Celiac? Here’s A Gluten Free Meal Plan
Here is a sample 3-day gluten-free meal plan to get you started. Feel free to mix and match. Adjust according to your tastes and preferences. Each of these meals is 100% gluten free and delicious!
½ cup cooked certified gluten-free oatmeal with sea salt, 2 TBS almond milk 1 tsp each of chia, pumpkin and sunflower seeds, drizzle of raw honey, and ½ cup of fresh fruit
2-3 cups of salad with mixed greens, sprouts, red or green peppers, cucumbers, 5 oz. of cooked shrimp, ½ avocado, ½ cup of garbanzo beans.
Dressing: 2 tablespoons olive oil mixed with 1 teaspoon of apple cider vinegar and season with salt and pepper to taste
5 oz. grilled bison burger patty with tomato and gluten-free condiment of your choice (no bun). Serve with unlimited roasted asparagus with olive oil and sea salt.
Baked sweet potato with Kerrygold butter and sea salt
½ apple sliced, with 2 TBS almond butter
2 scrambled pasture-raised eggs and 1 ounce of crumbled goat or feta cheese over 2 cups mixed greens with arugula, splash of apple cider vinegar and olive oil, sea salt and pepper to taste
Soup – Kettle & Fire beef bone broth blended with leftover baked sweet potato (remove skin).
Serve with small side salad with avocado slices, lemon wedge and olive oil
5 oz. of broiled wild-caught salmon with unlimited steamed green beans with Kerrygold butter.
Serve with ½ cup of cooked quinoa.
6 ounces of organic, full-fat, plain Greek yogurt, with a handful of blackberries
2 Pamela’s pancakes (bagged pancake mix available at Thrive Market) served with sliced pear, walnuts and Kerrygold butter.
Serve with Applegate organic chicken sausage
2 cups of salad with mixed greens, at least 4 additional vegetables of choice, 1/2 cup of leftover cooked quinoa and 3 oz. canned and rinsed organic black beans.
Dressing: 2 tablespoons olive oil mixed with 1 teaspoon of balsamic vinegar, 1 tsp Dijon mustard and 1 tsp honey, and season to taste.
5 ounces of baked organic chicken thighs with unlimited steamed broccoli with Kerrygold butter.
Serve with roasted carrots and beets with olive oil and sea salt.
Snack or Dessert
Living Gluten Free for Your Best Health
So, you’ve decided to go gluten free for good?
You have Hashimoto’s and you know you are not making the progress you want to see taking medication alone.
You get the science I have explained here in this article.
You recognize the connection between gluten and your thyroid.
But, if, even after reading the above, you still feel stuck on the actual implementation of a gluten free meal plan – you are normal.
It’s not easy to commit to giving up gluten for the rest of your life.
We love our pizza, cakes, cookies, baked goods, beer, etc.
Even when I knew that gluten was my #1 food problem, it took me a good FIVE MONTHS to quit it altogether.
But, you know how I finally figured it out?
I never wanted to feel sick again.
And, after the first few weeks of GLUTEN ZERO, I said to myself “So this is how normal people feel?!”
It was wonderful!
That feeling was better than any piece of pizza or plate of pasta or slice of bread.
Feeling good for the first time in my life was a slice of heaven.
And, it still is.
I know you can find this same healing for your own body.
And, you can even have better enjoyment of food.
Best of all, you can lower your antithyroid antibodies and improve your Hashimoto’s if you commit to going gluten free.
Let’s work together to get you feeling amazing again!