Myths of celiac disease

 

1. Celiac is a “rich white person disease”

Of all the myths out there, this one is the newest. I have no doubt it comes from the gluten free diet being made into a fad and so many celebrities jumping on the bad wagon. That isn’t to say that some celebrities don’t need the gf diet. Some do have celiac disease and gluten intolerance and this diet is a must for them. Leave it to the celebrities to turn something needed on it’s ear!

Personally, I hadn’t heard much about this, but I don’t pay a lot of attention to this kind of thing, usually. But, when I asked on a Facebook page about what myths people had heard this was one of the responses: “I was once told that I had “rich white person disease”. That my celiac was just a product of me not being in contact with enough germs as a child”

First of all

Celiac is a genetic disease! People with celiac have a gene that turns on when they eat gluten and it damages their intestines. This has nothing to do with germs or good and bad gut bacteria! Learn more about celiac.

Secondly,

Celiac does not pick and choose according to a persons bank account or life style. Having to eat gluten free makes anyone’s wallet much, much tighter. It has been rough having a family of 6 that eats gluten free! Anyone with the gene can develop celiac disease!

Thirdly,

People all over the world are diagnosed with celiac disease. “Celiac disease (CD) has emerged as a major public health problem worldwide.” (https://www.gluten.org/international-celiac-disease-symposium/) From the same article: “This review and analysis indicates that CD is a global disease and the global sero-prevalence and prevalence of CD are 1.4% and 0.7%, respectively. The prevalence of CD was found to vary with gender, age and geographic location. The prevalence of CD is increasing over time. There is a need for population based prevalence studies in many countries.”

Some areas of the world seem more prone to it than others, but they also tend to be the places that use large amounts of gluten in their foods. Many studies have shown that all races of people can have celiac disease. So, no it is NOT a “white” person disease. It has a lot to do with the amount of gluten consumed. The more gluten, the more likely you are to find celiac.

I can’t believe how many articles I found calling celiac a “rich white person disease“!!!!

 

2. Young children can’t get celiac disease and breast feeding helps protect against it

One mother was told that her “daughter can’t have celiac because she didn’t have gluten before she was 6 months old.”

I know from experience how frustrating it is to know that there is something wrong with your child and not be able to get a medical professional to listen to you! The symptoms in babies and kids typically have a lot to do with their rate of growth and development and GI symptoms.

Babies absolutely can have celiac disease. However, testing isn’t always as accurate for children under 3 years old.

First

Milk from mothers with celiac disease was significantly lower in the concentrations of sIgA, IL-12 and TGF-ß1. Moreover, their milk had less DNA from gut-derived probiotic bacteria, including Bifidobacterium species and Bacteroides fragilis, although these differences were not as pronounced as those for sIgA and cytokines. (from the above article)

This means that the mother isn’t passing on as much of the good stuff that helps an infants immune system and gut as mothers without celiac disease. This is because of the damage done to the mothers gut from celiac. She just doesn’t have it to pass on to her baby.

https://www.celiac.com/articles/22092/1/Celiac-Disease-and-Breastfeeding—The-Missing-Link/Page1.html

Second

Many studies also say that gliadin can be found in breast milk. Gliadin comes from gluten and is the toxic factor that causes celiac disease.

*I have met many people with the support group I am a part of as well as gluten free Facebook pages and have heard many mothers talk about issues with breast feeding and gluten. One mother I know doesn’t have celiac but her husband does. With all of her babies (she had 7), she found that if she ate gluten her babies had more colic, spitting up and other issues. When she ate gluten free, her babies were much happier with fewer issues than when she had gluten.

Another mother I know had a baby whose hair wasn’t growing in and had some other concerning issues. After going gluten free, (because celiac runs in her family) the issues cleared up, baby was happier and her hair grew in.

I have wondered if my babies would have been more pleasant if I had been gluten free when I was nursing them. I had two that cried an awful lot, had reflux and were unhappy most of the time.

(****These are my own experiences in working with people, raising my children and are my own opinions and not connected in anyway to a support group.)

Lastly

There are a few studies that suggest the age in which gluten is introduced is important to those at risk of developing celiac disease. 4-6 months appears to be the window that offers the most hope in celiac not developing. Gluten before 4 months resulted in a 5X greater risk of it developing and later than 6 months also had a higher instance of developing celiac compared to the 4-6 month group.

3. You can out grow celiac

This comes from old information! Occasionally, I will run into someone who will tell me they “used” to have celiac, but they out grew it. This is so dangerous! I have also come across people who tell me their doctor said their child will out grow it. This outdated information puts people at risk for further complications with celiac disease.

No! You can’t out grow celiac disease!

All autoimmune diseases have periods of remission. This is a time when you have reduced symptoms or they are non-existent. This doesn’t mean the disease is gone, but it may or may not be active. Once the gene is turned on and is reacting to gluten, it continues to react and can cause a lot of damage and complications if a strict gluten free diet is not followed!

You see, celiac disease symptoms can change. Someone with severe symptoms may change to having none to speak of or vice versa. However, when biopsies of the small intestine are done, the person with no symptoms to speak of may have worse damage than the person with severe symptoms. Symptoms are not an accurate barometer to celiac disease and its severity!!!

4. People with celiac feel better and continue to improve in a short amount of time after going gluten free

This was one of the most frustrating things to me! Everything I read said I should be feeling better and improving, but I wasn’t. Part of this was because I was still getting gluten and didn’t know it and I was continuing to take the Sacrament once a week. (At least for a few months.) However, even after all of that was sorted out, I still wasn’t doing great! Read more about Not Feeling Fabulous After Going Gluten Free  and what to do to improve your health.

 

 

Also, it takes time for your body to recover from possibly years and years of not being able to absorb vitamins and minerals. Celiac gets your whole body out of balance. The amount of damage to the gut, also plays a part in how quickly a person feels better.

Research ways to strengthen your gut. Take a good Gluten free multi-vitamin. I like Bio-35 Gluten-Free. With vitamins, don’t assume that it is safe just because you don’t see any gluten ingredients on the label. Vitamins and supplements don’t have to list their filler ingredients; they aren’t required to list the allergens. For most vitamins, you need to contact the company and ask if they use gluten in their products.

Check for gluten in your toothpaste, sunscreen, lotion, and other make-up and body products. All these things can cause problems. Vitamins and body products do NOT fall under the labeling laws. They can call gluten ingredients by other names and so companies need to be called and you may have to ask what an ingredient is derived from.

5. If you have enough faith you will be cured or the Sacrament won’t hurt you, it is blessed

Someone from our Facebook group said: “I had a family member tell me that if I PRAYED harder and had more faith, I would be healed.” 

This is ignorance veiled in religion. It is dismissive, hurtful and is a religious attack on the person suffering.

I strongly believe in faith and miracles, but I also believe that we do all we can with the knowledge we have. This is wisdom. It is wise to not take a glutinous piece of Sacrament. Even that small bit of Sacrament host, cracker or bread can be enough to challenge your system and cause a reaction. It can keep the gut inflamed and cause all kinds of problems! Making arrangements for a gluten free Sacrament is part of what helped me gain better, stable health.

Many churches will allow Low Gluten Church Ceremony Communion Host, gluten free crackers, or gluten free bread to be used instead.

6. Gluten can’t hurt you, if it is just on your skin

I would consider this topic one of the controversial areas in dealing with celiac.

This doesn’t make sense to me at all! Nor does it fit with my experience and the experience of many people with celiac, that I know. Most “experts” believe you can’t be reacting to the gluten because the protein is too big to be absorbed through the skin. The general thinking is that you must be allergic to something else in the product.

My experience

Well, I took my doctors and all the experts advice and didn’t worry about gluten in any of my body products. I did just fine. . . until I didn’t! It was 3 years after being strictly gluten free. I had just added some coconut flour and flax seed to my flour mixture to give it more fiber and make it a little healthier. Then I started to break out in a horrible rash! I quit using my new flour mixture thinking I was allergic to either coconut or flax. 2 months later I was itching worse than ever and the rash was spreading and I was scratching my legs until they bled!

I finally looked at the ingredients in my body products. There was gluten in my: shampoo, conditioner, body wash, and hairspray!

I realized my rash was very symmetrical, happening on both sides of my body in the same places. I went to my GI who said it was definitely a DH Rash! The medication didn’t help and I think it was because it wasn’t ingested but caused by topical exposure to gluten. The thing that helped me the most was a steroid shot.

I make sure I don’t use body products that contain gluten and I haven’t had a problem like this since!

Other experiences

My daughter also breaks out when using body products that contain gluten. By the way don’t use DoTerra hair care products! They claim they are gluten free but they definitely are NOT! This is what caused my daughter’s reaction.

Also, my daughter broke out in a rash on her hands because her husband would hold her hand after eating a gluten hamburger. He now realizes that he has to wash his hands before touching her, if he has handled gluten.

I know several people who have commented about rashes after accidently using soap that contains gluten. It takes a long time for these rashes to go away! (Months!)

I believe in my experiences and the experiences of people living with celiac more than I believe experts; at least on this one!

7. It’s all in your head

It’s all in your head– Comments to people with celiac like “you wouldn’t have any symptoms if you didn’t know it was there”, “You are just jumping on the bandwagon because you are a hypochondriac.”, “You always think you have something!” and the list could go on and on!

I had one doctor tell me I was causing my own pain and it was emotional issues manifesting in a physical way. ?????? Seriously! I did yell at him! You can read more about my health story here.

Celiac isn’t “just” in your head, it is 100% in the gut and can affect every system of the body! People who have gone undiagnosed or misdiagnosed may have had lots of different medical issues and been led down the wrong path. This is very common for many who have celiac. Celiac has been severely underdiagnosed and doctors are doing a better job, but there’s a long way to go!

The doctor who said I was causing my own pain, also told me that if I went on anti-depressants and took up swimming all of my problems would be solved! Ugh! Is it any wonder why I hate going to the doctor?!

 

 

8. Celiac is cureable

As soon as someone finds out you have celiac disease they immediately have a remedy or know someone who has been cured!

NO! There is NO cure for celiac disease!

There are a lot of people who make claims about what a certain food, product or chiropractor can do. This is dangerous! As I said before, symptoms can change and the question begs: are you masking symptoms while damage is on going? The only way to know if something actually worked is to have regular, on-going testing done. Not just the blood test, but also the biopsies. Results are most typically based on symptoms, which are unreliable.

Scientific advances

Many people with celiac, especially those who have suffered for many years with it undiagnosed are leery of “cures”. Even something that may be medically advanced. I know I won’t be one of the first to see how it works and what the side effects are from any new remedy! I like my gluten free diet that comes without crazy side effects! Many remedies come with side effects that are as bad or worse than the problem it is supposed to solve.

9. Celiac is NOT a real disease

This is a highly uninformed and ignorant statement! Celiac is a very real disease that has genetic factors as well as specific tests that test for celiac disease! There are real symptoms, real problems and real complications that patients can die from! It is actually a very serious disease with a simple prescription: Eat Gluten Free.

Some of the things that have added to this myth:

• Fad dieters
• The uneducated and uninformed who think they understand celiac and gluten intolerance, but really don’t
• Doctors who are using old information about celiac disease
• People who think those who eat gluten free are just high maintenance
• People who think everyone eating gluten free is a fad dieter
• Gluten free being made into a joke (Would anyone make fun of diabetes?!)

Celiac is the first and possibly only auto-immune disease that we know of that has a known cause: a gene that has been turned on to react to gluten. We also know that not eating gluten stops the body from reacting and attacking itself. Because of this knowledge scientist are learning more about other auto-immune diseases. I would much rather have celiac than many of the other auto-immune diseases that are harder and more complicated and debilitating to control.

 

10. You can burn off the gluten

There is NO amount of heat that can burn off the gluten! We had a place near us that was telling people they had a special oven that could burn out the gluten. There were a lot of sick people who believed this garbage; until they got horribly sick! There are NO magic ovens!

The gluten isn’t burned out in oil vats either! A person with celiac CANNOT eat fries or any other fried foods that are fried in the same oil as products that contain gluten. It does NOT burn the gluten out of the food! It does NOT change it or make it neutral!

Eating fried foods safely:

• Ask if the fryer is dedicated to fries only (If they also offer breaded fries make sure those don’t go in the dedicated fryer)
• Ask if they combine the oil at night. Do they put new, fresh oil in the dedicated fryer?

11. Sourdough is gluten free

NO, sourdough made from any gluten ingredients is NOT gluten free! The process of fermentation does NOT make sourdough safe to eat!

The only exception to this is if gluten free ingredients (flours) were used in the creation of the sourdough.

 

12. If you eat the right kind of wheat, it is safe

The Misconceptions:

• Organic wheat is okay (NO)
• Ancient wheat is safe (NO)
• Raw wheat is safe to eat (NO)
• Soaking your gain makes it safe (NO)
• White flour is different than wheat flour (NO)

There is NO safe wheat no matter how it is processed, grown or its strain. The only exception is wheat starch which does NOT have any protein in it. (Still important to make sure it is labeled gluten free to have the least risk of cross contamination. More about this on #19.)

13. Gluten free foods are tasteless and yucky

First, there are some really yucky gluten free foods on the market. I will never again subject my body to Potasta and while EnerG has some good products, I wouldn’t count their bread as one of them. If a company doesn’t make good gluten free foods, don’t buy them!

With that being said, there are many, many wonderful and good gluten free products. Here are some of my favorites

• Gluten Free Heaven (Not an affiliate)
• Rudis Gluten Free Original Sandwich Bread.
• KIND Bars
• Tinkyada
• Glutino
• Udi’s Gluten Free White Sandwich Bread (Udi’s gets a bad rap, but we really like it.)
• Van’s Simply Delicious Gluten-Free Crackers, Say Cheese!
• Ian’s Gluten Free Chicken Nugget
• Goodie Girl Mint Slims Chocolate Cookies (Tastes a lot like Girl Scout Cookies)
• Gluten Free Cream of Chicken Soup and Gravy Mix, Dairy Free, by Vivian’s Live Again
• Better Than Bouillon, Organic Chicken Base
• Foster Farms Gluten Free Corn Dogs (Not an affiliate link)
• San-J Tamari Gluten Free Soy Sauce

There are so many! I could go on and on!

Also, when you cook from scratch everything tastes so much better! My husband had co-workers tell him that if all gluten free foods smelled, looked and tasted like the left overs he brought in. . .  they all wanted to be gluten free. (He often gave bites to people to try.)

If you think gluten free foods are tasteless and yucky then you are doing it wrong!

14. Gluten free is healthy

Gluten free is healthy, if you are eating more fruits and vegetables and less processed food! Gluten free processed foods aren’t very healthy at all! They often have more fat, sugar, and calories.

All diets the incorporate more fruits, vegetables and whole grains are healthier. There are a lot of gluten free whole grains that can be incorporated into the gluten free diet: brown rice, sorghum, buckwheat, quinoa, amaranth, millet and oats that have been through a purity protocol.

15. Gluten Free is a weight loss diet

Gluten free will help you lose weight if you are cutting out carbs and eating more fruits and vegetables. However, if your gluten free diet contains a lot of gluten free processed foods then plan on putting on the pounds, even if you have celiac!

People with celiac tend to find they have more energy, feel better and lose weight because their bodies can’t tolerate gluten. The gluten caused reactions that kept the body from being able to absorb essential vitamins and minerals.

Gluten free doesn’t automatically mean healthy! You can be gluten free and still make poor food choices.

16. Gluten Free is a fad diet

This one gets those of us with celiac and gluten intolerance really steamed up! Our prescription for health has been hi-jacked by a fad diet craze!

Gluten free is NOT a fad, it is my life, health and prescription!

17. You can have a little, once in a while

• You can overcome gluten intolerance (and celiac) if you eat a little bit everyday. Then your body will get used to it and accept it (NO! It’s NOT and allergy!)

There is NO having a little gluten once in a while! Cheating opens yourself up to all kinds of medical complications when you have celiac! This is another reason why it is so important to get tested BEFORE going gluten free! It is important to know if you have non-celiac gluten intolerance or celiac disease!

While a little bit of gluten won’t cause as big of symptoms in a lot of people; you have no idea how much havoc it is wreaking throughout your body! Seriously, it is NOT worth it!

18. Spelt is gluten free

This is one I just don’t get! Spelt is a grain that is derived from wheat! It contains the gluten protein like the other gluten grains. It is NOT safe and NOT gluten free, NO matter who tries to convince you otherwise. People with celiac or gluten intolerance WILL get sick from spelt and it will cause damage in those with celiac!

Learn more about gluten free and gluten grains.

19. There are processes that can remove the gluten making it safe

This is actually a tricky area and very controversial.

Considered safe from the way they are processed:

• Distilled vinegar
• Wheat Starch (Personally, I avoid gf foods that contain wheat starch. For me, it isn’t worth the risk.)
• Blue Cheese (When I was diagnosed 13 years ago, this was on the NO list. However, GIG who has excellent standards and testing for gluten free foods through their GFCO division, has done a lot of testing on Blue Cheese and found it to be safe.)

Other than these 3 instances, I know of no other process that is considered safe or gluten free.

NOT safe or gluten free but often misinformed:

Anything that is hydrolyzed is not gluten free: yeast, soy sauce, beer and other alcohol products that start out with gluten containing grains.

Fermentation does NOT destroy the gluten protein and make it safe.

20. Everyone Should be gluten free

The truth is that gluten is not all bad. It is only bad for those who can’t digest or tolerate the gluten protein. There are a lot of benefits to eating gluten containing grains, if your body doesn’t react to them.

Just a little FYI, most gluten containing foods are fortified, while gluten free products are not. It is another way that people who are gluten free are missing out on nutrition they didn’t know was being added. Of course, if you have celiac, you probably weren’t absorbing it, anyway.

(****All opinions expressed are my own and not connected with any group. Please do your own research with reliable sources.)