If you are experiencing symptoms that you cannot explain, it is important to know that the explanation may not always be obvious. For example, did you know that if you have celiac disease, warts can be one unexpected symptom? Is important to be aware of all the possible symptoms. Many people with celiac disease don't know they have it because the symptoms can be so varied and subtle…including warts!
In this blog post, I’ll give you a full explanation of what celiac disease is and how to manage it. I will also explain why it is so important to see a doctor if you are experiencing any unusual symptoms, even if you think they may not be related to celiac disease. And once you have an official diagnosis, working with a dietitian is your best path forward to managing your condition, and to feeling great, even through your busy life, while traveling, and while visiting with friends and family.
And if you're new here: welcome! My name is Marissa Mekelburg MS, RDN, CLT, HHP and I am a registered dietitian who specializes in digestive health.
Let's kick off this post with an intro to celiac disease: what is it?
Photo by Dustin Humes on Unsplash
What is celiac disease?
Celiac disease is an autoimmune disease in which the body attacks the lining of the small intestine when gluten (a protein found in wheat, barley, and rye) is consumed.
This can lead to damage to the villi, which are tiny finger-like projections that line the small intestine and help with nutrient absorption. When your digestive tract is damaged – as in uncontrolled or undiagnosed celiac disease – there are a lot of potential consequences and symptoms (more on those in a moment).
Celiac disease can develop after genetically vulnerable people begin eating gluten. Without treatment, celiac disease can progress to more severe health concerns.
It surprises a lot of people just how common celiac disease is. Estimates are that about 1 in 133 people have it, but unfortunately, only about 1/3 of those with celiac disease have a proper diagnosis (1). If someone in your immediate family has celiac disease, you have a one in ten chance of developing it yourself (2). This is a big deal because untreated celiac disease has the potential for many serious consequences.
Symptoms of celiac disease
Did you know that there are an estimated 200 symptoms related to Celiac disease? This is pretty surprising to most of the clients that I've ever worked with. Celiac can show up in some pretty unexpected and challenging ways (and yes, you may be at increased risk of warts).
Most of us probably think about GI symptoms with celiac, such as diarrhea and belly pain, but the truth is that those symptoms are actually more common in kids, and there are a lot more symptoms that can show up.
As I mentioned above, if you’re eating gluten and have celiac, you’re going to have damage to your small intestine. This damage leads to a variety of symptoms that may occur not only because of the direct damage to the tissue but also because of the following nutrient malabsorption (damaged tissue doesn’t absorb the nutrition from your food nearly as well). Remember that gluten damages the villi of the intestine, the part where our body absorbs nutrients from food.
There may also be symptoms that stem from cross-reactivity and/or molecular mimicry of other foods. Common foods such as cheese and chocolate (gasp!) can fool your body into thinking that you’ve eaten gluten and then cause symptoms (3). This is one thing I consider if someone is still symptomatic even being gluten-free.
Some symptoms seem unusual for celiac but are actually pretty common. On top of that, celiac can present pretty differently in children than in adults. This disconnect is just another vote for more education in this area, not just for the general public but for medical professionals, too.
Common celiac symptoms in children:
● Anxiety and depression
● Attention-deficit/hyperactivity disorder (ADHD) and learning disabilities
● Damage to tooth enamel
● Delayed puberty
● Failure to thrive
● Fatigue
● Headaches
● Iron-deficiency anemia
● Irritability
● Seizures and lack of muscle coordination
● Short stature
● Weight loss
Common celiac symptoms in adults:
● Cognitive impairment
● Depression and anxiety
● Fatigue
● Headaches or migraines
● Iron-deficiency anemia
● Itchy, blistery skin rash (dermatitis herpetiformis)
● Joint pain
● Missed periods
● Mouth ulcers and canker sores
● Osteoporosis and osteomalacia
● Peripheral neuropathy
● Reduced functioning of the spleen (hyposplenism)
● Weight loss
● Infertility/high rate of miscarriage
● Skin issues, including warts
Skin issues – including eczema, psoriasis, acne, chronic dry skin, hives, atopic dermatitis, and alopecia – may be more related to the damage/leaky gut/food sensitivities caused by the damage to the intestine vs the celiac disease itself. This topic is a bit controversial because the research is limited (4, 5).
It is also possible to have skin issues that look like warts, but are actually other issues, such as Gottron’s papules, and end up discovering that you have celiac (6).
With celiac, there is also an increased risk of cancer – most common types associated with celiac disease are enteropathy-associated T-cell lymphoma (EATL), non-Hodgkin's lymphoma, and adenocarcinoma of the small intestine (7). However, following a gluten-free diet reduces this risk dramatically (8).
How to diagnose celiac disease?
Celiac disease is diagnosed by a doctor.
To journey to an accurate and official diagnosis of celiac disease start with a blood test. The lab is looking for an antibody that shows that your body is having an overreaction to gluten.
VIP note: in order for this lab test to work, you have to be eating gluten. If you’re not eating gluten – even if you have celiac disease – this test will not find any antibodies in your blood; your body only makes them if you’re experiencing a reaction to gluten. No gluten, no reaction.
There are a few blood tests that involve an alphabet soup of letters:
● Tissue transglutaminase (tTG) antibodies tTG IgA and tTG IgG
● Deamidated gliadin peptide (DGP) antibodies DGP IgA
● Deamidated Gliadin Peptide DGP IgG
If the blood tests come back positive, it is recommended that you confirm your celiac diagnosis with an intestinal biopsy; this is considered to be the gold-standard (9).
If your interested in testing for celiac disease, here is my affiliate link for at home testing https://www.imaware.health/?ref=wholisticworks
Once you have a diagnosis – what is the treatment?
What is the treatment for celiac disease?
The treatment for celiac disease is both simple and complicated.
The number 1 treatment for celiac disease is a gluten-free diet…with 100% compliance.
You need to remove 100% of the gluten from your diet.
Simple, right? Unfortunately, no.
Gluten lurks in a lot of unexpected places and it can be tricky to figure everything out. And in the beginning, it can feel pretty darn overwhelming. Eating at restaurants? Picking the right condiments? How to eat over the holidays and so on. And beyond that, a lot of your favorite foods may contain gluten, so it can be a bit of a grieving process to learn to live without those exact foods and treats.
Sometimes people think if they only eat gluten occasionally, that if they don’t eat gluten 95% of the time, that they’re gluten-free. Unfortunately, that isn’t the case. If you’re eating gluten, any gluten at all, you’re not gluten-free. And if you are eating gluten with a diagnosis of celiac, you are causing damage to your GI tract. Damage comes with the risk of many long-term complications mentioned above like peripheral neuropathy, increased risk of cancer, anemia, osteoporosis, and reduced spleen function. These possible consequences are still very real, even with low-gluten, or “mostly gluten-free” diets.
On top of that, people with celiac disease have to be very careful about cross-contamination in their kitchen and anywhere else they eat food; this includes in restaurants and at friends’ houses.
Eliminating the risk of cross-contamination may mean having your own set of cookware, utensils, cutting boards, and rolling pins (this is especially important if a person is doing hand washing vs using a dishwasher. A dishwasher can reduce a lot of this need). I recommend avoiding wooden utensils or cutting boards. Use separate pizza stones, and use aluminum foil or a separate cast iron pan if sharing a grill.
Best case scenario: if there is gluten in your house and you’re following a gluten-free diet, have a shelf that is for gluten-free foods. I also recommend separate condiments and sandwich spreads like nut butters so that the risk of having touched gluten-containing foods is reduced. Use clean dishcloths and change them out after picking up breadcrumbs. Wash hands well and change out the hand towel frequently.
The level of diligence required to prevent accidental gluten exposure is intense. It may make you wonder if there is a cure.
Photo by Wesual Click on Unsplash
Is there a cure?
Gosh, I wish there was a cure, but at this point, there is no cure for celiac disease.
The only treatment is to avoid all forms of gluten for the rest of your life. This can be difficult, but it's important to remember that celiac disease is a severe autoimmune disorder, and consuming even a small amount of gluten can cause damage to the small intestine.
Common mistakes made with following a GF diet
In my experience, there are a few common mistakes that people make when following a gluten-free diet. Let me share those here to spare you from making the same mistakes!
Cross-contamination
Not being aware of cross-contamination. This includes “nonfood items” like toothpaste, mouthwash, lip balms, nutritional supplements, and even medications.
Not reading (or understanding) food labels
For example, thickeners in soups may be from wheat, many vegetarian meat substitutes use wheat, additives like malt extract in cereals (like Rice Krispies) contain gluten since it is barley derived, and sometimes lunch meats will have “modified food starch” which may stem from wheat.
Products may also list “produced in a facility that also produces wheat/gluten” so the risk of cross-contamination exists.
Too much-processed food
I’ve seen plenty of clients relying on too many processed gluten-free foods. While convenient, they usually are not all that nutritious and may contain extra fat, sodium, or sugar to help make them taste better. Also, many gluten-free foods (like bread) rely on a lot of starches, so they contain very little fiber or nutrition.
Processed gluten-free foods also bring with them another issue and that is that in order to be considered “gluten-free” they have to have less than 20 PPM of gluten per serving. This means that legally something could have 19 PPM of gluten and still be able to be labeled gluten-free. So, if a person is relying on a lot of these types of foods, a small amount of gluten builds up after consuming enough. I have seen this in practice and once we reduce the amount of packaged foods, symptoms start to clear.
Instead of processed foods, I recommend focusing on whole foods that are already naturally gluten-free like fruits, vegetables, proteins, beans, nuts, and seeds.
Gluten-free: now what?
It is normal to wonder what you can expect after removing gluten. When will you start to feel better?
It can take time to feel a difference from removing gluten primarily depending upon the extent of the damage to the gut. If someone is an adult and has been eating gluten for 30 or 40 years, that’s a lot of damage to heal so it’s going to take time.
It is important to be prepared with accurate information. If you’re expecting your symptoms to resolve very quickly, and they don’t, you might wonder if being gluten-free is even worthwhile. If you have celiac disease, I promise that gluten-free eating is extremely important, but it takes a while to recover.
Along those lines, the more damage there is, the more there can be issues like food sensitivities that are contributing to additional inflammation and more issues with food.
Working with a registered dietitian can help you make more progress, more quickly.
How an RD can help
Working with an experienced RD can help you to get set up for success and to make progress much more quickly as you embark on a gluten-free diet. I can help you to become a label reading expert and confidently prevent cross-contamination and the resulting risks. Sometimes you can think that you’re following a 100% gluten-free diet but are actually having some sneaky sources of cross-contamination…I can help you to identify those so that your gluten-free diet is, in fact, fully gluten-free.
And because I am also an expert in food sensitivities and nutritional deficiencies, I can help anyone who has been diagnosed, and is gluten-free but still symptomatic (it is so frustrating but I can help get to the bottom of things!). We can do MRT testing to help further identify problematic foods and reduce inflammation. We can also do nutrient testing to identify what may be deficient and help identify foods and supplements to support needed nutrients. This work helps you to fully heal your gut so that you finally (finally!) feel good again and greatly reduces your risk of complications in the future.
Competently managing your celiac disease with a fully gluten-free diet is immensely important but the learning curve is steep. It is far easier with an expert guide. If you’re ready to chat about how I can help you finally feel better, please book an initial session right here. You deserve to feel good again.
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