My mission with this page is to keep you informed and help you get the clarification you need to lead a healthy gluten-free life.
What is Celiac Disease?
Celiac Disease is an inherited digestive Autoimmune Disease that affects the digestive process of the small intestine from an immune-related response to gluten. When a person who has Celiac Disease eats gluten – a protein found in wheat, rye, and barley – the individual’s immune system responds by attacking the small intestine and inhibiting the absorption of important nutrients into the body. Specifically, the tiny finger-like protrusions called the Villi on the lining of the small intestine are lost. When Celiac’s eat gluten, even the tiniest amount, destroy’s the Villi. Part of the role of the Villi is to properly absorb nutrients found in foods, vitamins, and good bacteria and help assimilate them into the bloodstream. When the Villi is destroyed this allows bacteria, food, and harmful microbes into the bloodstream causing malabsorption and most often Leaky Gut.
Celiac Disease affects about 1 of every 100 people of all ages in the United States. That’s about 3 million children and adults. Celiac Disease can develop at any time. For some, it may take years to diagnose while others are diagnosed quickly. Symptoms of Celiac Disease vary from one to the next person. And some adults do not even have gastrointestinal symptoms. That is another reason why it is so hard to diagnose Celiac Disease. Celiac Disease is a lifelong disease that one will never grow out of.
Source: University of Chicago Celiac Disease Center
What is Dermatitis Herpetiformis?
DM is an itchy, blistering skin condition that is a form of Celiac Disease. The rash usually occurs on the elbows, knees, buttock and sometimes on the scalp. It is usually characterized by its bilateral nature. Two elbows, two knees etc. Many people with DH have no digestive symptoms and only about 40% have positive blood tests. Therefore a skin biopsy would be tested.
Source: University of Chicago Celiac Disease Center
What is Gluten?
Gluten is a protein composite found in Wheat and it’s related grains. These grains include Barley, Bulgur Wheat, Durum, Einkorn, Farro, Graham, Kamut, Rye, Semolina, Spelt, and Triticale. Oats do not contain gluten, but their processing does, which is why Celiacs cannot have regular Oats, and only Oats that are certified gluten-free.
Gluten is found not only in foods but in beauty products, skin care, medications, vitamins, cosmetics and even in some forms of paint.
Is Celiac Disease a Wheat Allergy?
No. Celiac Disease is an Autoimmune Disease like Diabetes or Rheumatoid Arthritis. Autoimmune means a person’s immune system mistakenly attacks one of the body’s own tissue or cells. When a person who has Celiac Disease eats gluten – a protein found in wheat, rye, and barley – the individual’s immune system responds by attacking the small intestine and inhibiting the absorption of important nutrients into the body.
Source: University of Chicago Celiac Disease Center
What is a Non-Celiac Gluten Sensitivity?
Gluten-Sensitivity is more common then we know. Non-Celiac gluten sensitivity (also known as a Gluten-Intolerance) is an adverse food-induced reaction possibly immune-mediated, but for which there is no test available. This is a reaction in the digestive tract that causes gastrointestinal symptoms similar to IBS. It may also lead to other body symptom problems such as fatigue and headaches etc.
Source: University of Chicago Celiac Disease Center
What is the difference between Celiac Disease, Gluten-Intolerance, a Non-Celiac Gluten-Sensitivity and a Wheat allergy?
Celiac Disease is an inherited autoimmune disorder that affects the digestive process of the small intestine.
A non-Celiac Gluten-Sensitivity (which many call a gluten-intolerance) causes the body to mount a stress response (often GI symptoms) different from the immunological response that occurs in those that have Celiac Disease. (which most often causes intestinal tissue damage).
A wheat allergy is an allergic response to the ingestion of wheat. It is the protein found in wheat that causes the allergic reaction. It is not necessarily related to gluten. A wheat allergy causes the immune system to respond to a food protein because it is considered dangerous to the body when it actually isn’t.
Source: University of Chicago Celiac Disease Center
What is a Gluten-Allergy?
Gluten allergy does not exist. The term gluten allergy is misused phrase to describe people with a gluten intolerance/non-Celiac gluten sensitivity. Many food establishments like restaurants and markets use the term Gluten-Allergy.
What are Celiac Disease symptoms?
It is important to know that not everyone experiences the same symptoms. One individual may experience gastrointestinal symptoms, while another experiences anemia or osteoporosis. Then there is Silent Celiac where the patient is relatively asymptomatic, yet reports increased well being after diagnosis and treatment with a gluten-free diet. Some of the most common Celiac Symptoms are:
- Gastrointestinal symptoms
- Recurring abdominal pain
- Abdominal bloating
- Chronic diarrhea
- Persistent anemia
- Chronic fatigue
- Unexplained weight loss or weight gain
- Osteopenia, Osteoporosis, and bone fractures
- Missed periods (Amenorrhea)
- Infertility and recurrent miscarriages
- Muscle cramps
- Discoloration and loss of tooth enamel
- Vitamin deficiencies
- Oral Ulcers-aphthous
- Tingling/numbing in the arms, legs (peripheral neuropathy), poor balance or lack of coordination and epilepsy/seizures
- Thyroid Disease (hypothyroidism-Hashimoto’s disease, hyperthyroidism-Graves disease)
- Sjogren’s syndrome
- Chronic active hepatitis, primary biliary cirrhosis, primary sclerosing cholangitis
- Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B- cell types)
- Small intestinal adenocarcinoma
- Esophageal carcinoma
- Papillary thyroid cancer
- Neurological problems
- Skin rashes
- Psychological issues
- Hair loss, brittle nails
- Cystic Acne
- Vitamin D deficiency
- Headaches, migraines
- Unexplained joint pain
- Leaky Gut
- Recurring immune infections like strep throat, sinus infections, bacterial infections
- Anxiety, depression and other mood changes
- Brain fog
Source: Columbia University Medical Center
How do I get diagnosed?
Getting diagnosed with Celiac Disease is really difficult since the disease’s symptoms are so similar to other diseases and medical conditions, that it is often misdiagnosed. On average, patients experience about 11 years of symptoms before diagnosis.
The first step in the diagnosis is usually blood tests that measure antibodies. The current best tests are antibodies to gliadin peptide and tissue transglutaminase antibodies.
As with all tests, there may be false positive and false negative results. The antibody tests are therefore not usually diagnostic of Celiac Disease but used to indicate who needs to have a biopsy.
Genetic testing is valuable in the assessment of Celiac Disease. These are genes that are necessary for the development of Celiac Disease. If you do not carry the gene, then you cannot develop full blown Celiac Disease, but you can develop a non-Celiac Gluten-Sensitivity.
Small Intestinal Biopsy:
A small intestinal biopsy is considered the gold standard for diagnosing Celiac Disease, however, there are pitfalls even in the biopsy. The pitfalls include an inadequate number of biopsies taken, incorrect areas biopsied as well as inaccurate pathological interpretation. It is therefore important that an experienced pathologist interprets the biopsy.
Is a biopsy always necessary?
A biopsy is usually recommended for a definitive diagnosis. However, recent European pediatric guidelines advise that a child may not always need a biopsy if certain criteria are fulfilled. These include symptoms, an anti-tTG level more than 10x normal, and a positive HLA gene test. In addition a positive endomysial antibody test on a second blood draw.
Many Celiac’s are confirmed mainly by bloodwork. It depends on what doctor you choose to see for your diagnosis.
All people in high-risk groups should be screened:
- First degree relatives (parent, child, or sibling) of the individual with Celiac Disease
- Individuals with various autoimmune conditions like type 1 diabetes, thyroid disease, Sjogren’s syndrome, autoimmune liver diseases especially primary biliary cirrhosis as well as other autoimmune diseases.
- Down syndrome individuals
- unexplained infertility
The main screening method is the antibody blood tests.
Who is at risk for Celiac Disease:
- Relatives of those with Celiac Disease
- Type 1 Diabetes
- Autoimmune Thyroid Disease
- Sjogren Syndrome
- Down, Turner and Williams Syndrome
- Chronic Autoimmune Liver Disease (most notably primary biliary cirrhosis)
It is important that while you are getting tested you do not change your diet, and continue to eat gluten so the results are accurate. If you stop eating gluten for a matter of months and then get these tests done, it is possible your results will not be accurate.
If you do not want to confirm your positive blood work diagnosis by having an endoscopy, it is your choice to just go gluten-free for life without the biopsy confirmation. However, this method is not always recommended and is something that you should discuss with your doctor. Once you go strictly gluten-free for approx. 6 months, having an endoscopy after the fact will not show Celiac Disease. Studies say that after your intestine has healed, the antibodies for Celiac will not show up in testing. So please consider this when you decided how you want to be tested.
Source: Celiac Disease Center at Columbia University Medical Center
What if I test negative for Celiac Disease, but I still think I have Celiac Disease?
If you test negative for Celiac Disease you could have a non-Celiac gluten-sensitivity or you may still have Celiac Disease but It may not have manifested yet.
If your blood work comes back negative, this does not mean you do not have Celiac Disease, but it also doesn’t mean that you do either. It can take years to get a positive diagnosis if Celiac Disease is your culprit. In some cases, Celiac shows up in the blood immediately. In other cases, it manifests later on in life and triggers from stress-related traumas and then surfaces and shows up in blood work. Patients can show symptoms of the disease even if the blood test is negative. It always depends on your body and what kind of stresses your body is going through and how sensitive to gluten you are.
If you are experiencing symptoms that you cannot get diagnosed you could have a gluten-sensitivity. In this case, you would still try the Elimination Diet to see if your body feels better with the removal of gluten. An elimination diet can be anywhere from 4-6 weeks to see effective changes. During this time you would keep a food journal log and write down everything you eat and when you eat it, as well as any symptoms that occur during and after.
In addition, many patients who are Celiac or gluten-intolerant have issues with dairy and lactose. If that is you, then remove the dairy for a certain amount of time or try just hard cheeses while removing all soft cheese and soft dairy. It is common for those with Celiac Disease to have a Lactose Intolerance.
How is Celiac Disease treated?
With the gluten-free diet. You MUST lead a gluten-free diet for life, just a tiny amount of gluten approx. 1/8 of a teaspoon is enough to trigger the disease and cause internal damage. That’s why excluding gluten is so important. There are some patients that do not respond enough to the gluten-free diet, and that may be because of other causes such as:
- Ongoing gluten ingestion
- Microscopic colitis
- Bacterial overgrowth
- Pancreatic insufficiency
- Lactose, fructose, sucrose intolerance
- Other food intolerances
- Refractory Celiac Disease
Will going on a gluten-free diet make me gain weight?
If you stick to a processed gluten-free diet filled with tons of gluten-free boxed products and processed products (the snack aisle of any supermarket), then yes, you will. Just because it’s gluten-free doesn’t mean it’s healthy. Even if you are eating gluten-free cookies, pasta, crackers, ice cream, cakes, chips – it’s still processed, it’s still sugar, it’s still made with tons of ingredients you cannot even pronounce and it’s still junk. And it will still make you gain weight.
Another factor to consider with weight gain or the opposite – weight loss with Celiac Disease is that your intestine is badly damaged and needs to heal. You most likely have malabsorption, nutrient and mineral deficiencies that have wrecked havoc on your gut and gut functions, and that has to get repaired before your body regulates, reaps benefits of the diet and begins to take in those missing nutrients.
What supplements can I take to help my Celiac Disease diagnosis?
You will want your doctor or endocrinologist to test your vitamin and mineral levels if you are diagnosed with a gluten sensitivity or Celiac Disease. As your doctor to test you for Iron Anemia by testing Iron Saturation, Ferritin and Iron levels in the blood, as well as ALL B-vitamins (B1: Thiamine, B2: Riboflavin, B3: Niacin, B5: Pantothenic Acid, B6: Pyridoxine, B7: Biotin, B9: Folic Acid, B12: various cobalamins), Vitamin D3 and Calcium.
If I am experiencing hair loss due to my Celiac Disease diagnosis, what supplements can I take to help?
You will want your doctor or endocrinologist to test certain vitamin and mineral levels for Zinc, all B vitamins (B1: Thiamine, B2: Riboflavin, B3: Niacin, B5: Pantothenic Acid, B6: Pyridoxine, B7: Biotin, B9: Folic Acid, B12: various cobalamins), Vitamin D3, Vitamin A, Iron Saturation, Iron, Ferritin, Iron. Once you receive your results you can work with your doctor on dosage.
Is it important to get routine blood work?
YES! Get your blood done every six months to make sure you are absorbing your mineral and vitamin levels. It’s important to do this consistently to make sure you are taking the right dosage. Maintaining nutrients levels can be difficult for some Celiac patients and that’s why routine blood panels are necessary.
I’m not feeling better and I suspect there is something else wrong, Are there any other tests I should consider?
Yes. There are a number of tests that can help you narrow down what is going on in your body. Symptoms are always attached to a root cause, and the root cause may not be what you suspected, which is why it is important to consider the tests in this section and discuss with your doctor.
What else can I do beyond the gluten-free diet?
- Beyond the gluten-free diet, and as discussed above, you can also get other testing done to make sure it’s not just Celiac Disease that is your culprit.
- You can also manage your vitamin deficiencies by getting routine blood work by an Endocrinologist (not your general doctor) and take supplements on a regular basis depending on your blood work results.
- You can take a high dosage probiotic daily and religiously (level should be discussed with your doctor).
- You can clean up your diet by adding more whole foods into your diet like whole vegetables, whole fruits, whole grains, grass-fed meat and poultry, antibiotic-free animal protein, cage-free organic eggs, organic fruits and vegetables, whole gluten-free grains rather than eating a processed (aisle of cardboard boxes) diet. Eliminating artificial and refined sugars like white and brown cane sugar and dairy is highly beneficial to those with Celiac Disease, because of sugar and dairy cause more inflammation, rev up the adrenal glands which control your hormones and can slow down your healing, or cause more problems and symptoms.
- And you can manage your stress levels. Stress plays a HUGE role in anyone’s life, especially someone with an Autoimmune Disease. Self-care is extremely important, just as much as diet. You can add in self-care such as exercise, yoga, meditation, massages, acupuncture, activities you love and relaxation. Even listening to music lowers your stress levels and sends happy vibes to your brain. Body stress is just as bad as mental stresses, and it is so important to do your best to balance them so that you can lead a healthy life.
Are medications, vitamins, minerals, supplements, antibiotics both OTC and Prescription Gluten-Free?
Not necessarily! Medications both brand and generic, both over the counter (OTC) and prescription, and even vitamins, minerals, liquids, and cough drops may contain gluten as a main ingredient, an additive, a thickener or even a coated coloring in their products. USA, CANADA & European standards are all different. It’s SUPER important you take care of finding out if your medication is gluten-free because you INGEST it. Many doctors will tell you that taking a medication with gluten in it is no big deal and that a small amount won’t affect you. Whatever you do, do not listen to that advice. It is incorrect and will affect your body greatly. But it’s not just ingredients you need to worry about, you must educate yourself on cross-contamination.
Cross-contamination occurs when the product is made in a factory with gluten or one that shares gluten lines that are not washed properly in between each product run. Cross-contamination also occurs when a manufacturer uses multiple plants to make their products. Some plants may use wheat as their starch while others use corn as a binder, and when a specific product does that, there is really no way to figure out which batch is gluten-free, making this particular product not gluten-free. Example: Zoloft brand
As for finding out answers. Some medications will list gluten on their website, but many do not. Most medications are not certified gluten-free. Some vitamin/supplement brands ARE. You have to do your research and call the manufacturer. I find that online sources are usually not accurate. If you have an awesome Pharmacist willing to make these calls for you never change pharmacies! That’s epically awesome! What I now do, is create an Excel chart, and every time I have to take something from prescription to vitamin I add it to my chart. I add the manufacturer’s number, name, dosage, and name of the product. I have an area for certified gluten-free, gluten-free, and notes. That way if I have to call again, I have all the information handy! That chart took a while to set up, but it’s worth having if you have to take a lot of supplements and medications.
Brands vs. Generic – Years ago it was more common for a brand to be gluten-free over a generic. But times have changed, and now it’s all up for grabs. No matter what the brand, or generic, always call the manufacturer.
When calling, simply ask to speak to the department that handles allergy and medical questions. Questions you may want to consider:
Is your product gluten-free? safe for Celiac’s
Is your product safe for Celiac’s
Is your product wheat, oats, rye, barley and spelt free? (If it’s corn gluten, then you are fine)
Does your company have a gluten-free/celiac statement?
Is your product certified gluten-free?
Does the manufacturer maintain allergy protocols in between each product run?
What does PPM mean?
PPM stands for “Parts Per Million”. All gluten-free products in the U.S. adhere to a gluten-free standard of up to 20 Parts Per Million (PPM) in order to be considered gluten-free. This means that in order for a product to be deemed gluten-free in the U.S. it must test below 20 parts per million of gluten, to get the gluten-free stamp of approval. This also means that a gluten-free product actually still has gluten in it, but is within “range” according to U.S. testing. Some Celiacs can’t even eat many “boxed” “processed” products that adhere to this gluten-free labeling law because even the tiniest amount of gluten can affect someone with Celiac Disease dramatically. And eating products that are under 20ppm of gluten after a while build up in your system, causing mystery symptoms. At this point, you would want to eliminate processed boxed gluten-free products and eat a clean diet of whole foods, whole vegetables, whole grains, organic and grass-fed meat, chicken, and organic cage-free eggs and non-refined sugars, organic dairy (if you eat dairy).
Some products measure up to as little as 5ppm or 10ppm of gluten. It’s amazing when you find these products. Products in other countries such as Italy, New Zealand, and even Canada have different standards and different PPM measurements that are deemed within “range”.
Most products that you see that are gluten-free will have a disclaimer on the package somewhere stating that their product meets the standards of below 20PPM.
If any product is over 20PPM of gluten it’s NOT GLUTEN-FREE.
Just because it’s gluten-free here does not mean it’s gluten-free there. Including candy!
Should I trust a package that states that it’s gluten-free?
Not necessarily! Just because the ingredients in the product are gluten-free, doesn’t mean the final product is gluten-free. It is important to consider or wonder where the product is manufactured, What is the facility like? Is the product produced in a gluten-free dedicated facility? Or a shared facility? If it’s a shared facility, are the gluten-free products processed on the same lines as non-gluten free products or is the gluten-free product made in a separate room? Are the lines cleaned in between each product run if it’s shared equipment? How is the product transported from the facility to the selling location? Sometimes non-gluten free oat flour is used to transport dates. Another great way to avoid all of this is to consume gluten-free products that are certified gluten-free or that the product takes great measures in adhering to good manufacturing policies, and or takes great care of the equipment in between each product run. Certified gluten-free is a bonus. The final product is tested, measuring how much gluten is really in the product. I really like Certified products because it gives me that extra safety to feel comfortable consuming it.
Overall you have to be your best advocate and always call the manufacturer, ask questions and use your gluten-free noodle! Some questions you can ask are:
- How do you take care of the cross-contamination in the facility?
- Are gluten-free products made on gluten-lines? If so does your facility wash the equipment in between runs?
- What are your practices to prevent cross-contamination?
- Is the final product tested? Are you certified gluten-free?
- Is there a dedicated gluten-free line or gluten-free room in your facility?
Is make-up, cosmetics, facial cleansers, shampoo, conditioner, laundry detergent gluten-free?
No. Not all. First things first. Our skin is our largest organ that absorbs everything we put into it. This is the holistic school of thought. However, according to the Celiac Center at Columbia in Manhattan, the gluten molecule is too thick to penetrate through the skin, and therefore must be ingested to affect something with Celiac Disease.
There are some people who only buy the gluten-free products that they think they may ingest like lipstick, shampoo, and conditioner, foundation, blush, concealer, soap, cleansers, and lotions. There are moments where you may actually ingest ALL of these things. So gluten-free is best.
Then there are some people who are genuinely affected by anything with gluten in it that touches their skin, including eyeshadow, mascara, nail polish, and even deodorant!
And then there are those that don’t believe that gluten-free cosmetics/shampoo’s etc are an issue at all and have no issue with gluten in these types of products.
I personally prefer everything to be gluten-free! I find that it makes a HUGE difference.
Sadly most brands in this department don’t really advise their gluten-free status, and you will have to again call the manufacturer! If you need a lipstick, Red Apple Lipstick is a line of certified gluten-free lipsticks and makeup that should make you feel all safe and cuddly! They have an online site!
If you have any other questions not listed here please feel free to email me at goodiegoodieglutenfree (at) gmail (dot) com. I will help you any way I can and I usually get back to my readers pretty quickly.
**Disclaimer: I am not a doctor. I am not a nutritionist. I am a Certified Health Coach. My information is partially from the Celiac Disease Center at Columbia University, Chicago Celiac Center and my own personal research and experience. The information above is not intended nor suited to be a replacement for professional medical treatment or for professional medical advice relative to a specific medical question or condition. The above information is not intended to replace a doctor/patient relationship with any physician. There is no replacement for personal medical treatment or advice from your personal physician.