Gluten Free Defined?

A recent response to my "It Still May be Edible" post got me thinking more about the term Gluten Free. At face value, Gluten Free would be interpreted as being completely void or free of gluten. However, this is not the case on a number of fronts.
All grains, including rice and corn, contain gluten. I myself was surprised when I first learned of this. However, as shown in the table in this article, wheat, barley and rye come from a different branch of the grain family tree. http://www.thorne.com/altmedrev/.fulltext/10/3/172.pdf (See Figure 1. Taxonomy of Common Dietary Grains and Table 2. Gluten Content of Various Grains).
This then brings us to the discussion of oats. Oats in the Celiac diet are controversial. Many celiacs are able to include uncontaminated oats in their diet. The fact that some are not able to consume oats, maybe due to oats being a closer relative to wheat, barley and rye vs rice and corn. However, when it comes to labelling... it then depends on which country you live in. The FDA in the United States currently does not include oats along with wheat, barley, and rye when labelling something gluten free. (See #16)  http://www.fda.gov/Food/LabelingNutrition/FoodAllergensLabeling/GuidanceComplianceRegulatoryInformation/ucm111487.htm#q11 
In Canada, if a label says it is gluten free, oats is included along with wheat, barley and rye as being prohibited. http://glutenfreediet.ca/blog/?p=176 Not even uncontaminated oats is allowed to carry the Gluten Free label in Canada.
The next eye opener is broken down into parts per million (ppm). A gluten free label in Canada and the United States, means that there is no more than 20ppm of gluten in the product. Gluten free does not mean that there is zero gluten in the product. In the European Union gluten free standards previously allowed for no more than 200ppm of gluten, but have now revised these regulations to 20ppm- however, these new rules will not be enforced until January 2012. Austrailia and new Zealand on the other hand, reserves the Gluten Free label for products containing no detectable traces of gluten, and is the strictest in the world. This label requires a measure of gluten that is in the range of less than 3 to 5ppm! http://www.facebook.com/topic.php?uid=100494046660564&topic=272 Many countries do not have any standards in place for gluten free labelling. http://en.wikipedia.org/wiki/Gluten-free_diet 
There are also many products that do not contain any ingredients which are of concern, and yet are not labelled as being gluten free. This could be be as a result that it is made in a plant where wheat or other problematic grains are being used, or that the manufacturer does not want to go to the trouble of getting a product labelled gluten free because of the compliance that would then be involved.

While standards are improving and becoming slowly clearer, there are some Celiacs I have discovered that feel the need to go grain free. This means that not even corn or rice are eaten. These individuals find they are still symptomatic even though they follow the current accepted gluten free diet. Going grain free thus virtually eliminates any gluten in the diet from being ingested. http://www.canada.com/victoriatimescolonist/news/life/story.html?id=44ca5fc0-8f4b-4833-b1b2-0b258b608961&k=21125

Essentially what Gluten Free eating boils down to, is what you feel is best for your personal health. Gluten free is a relative term to guide you, that is backed up by the food regulations where you live. Whether that includes oats or not is up to the individual Celiac and their personal "gluten free" diet. Gluten free does not mean that no gluten is being consumed- rather it is an accepted amount of gluten that is suitable for most Celiacs, proposed by the medical community and enforced by government. On the flip side, something that does not have a Gluten Free label does not necessarily mean that it is not safe to consume either. Use your educated judgement where labels have failed to keep up with the times. Therefore if you feel that your risk is low for consuming gluten in products that have not been labelled Gluten Free (of course reading your labels each time), then do so if you feel comfortable. If you feel you need to remove all gluten, go grain free. The best judge in your own health is often yourself. Be informed. Go with your "gut".

To cheat or not to cheat?... That is the GF Question



Cheating on your GF diet?...is it really OK?

Whether newly diagnosed or a veteran Celiac, cheating on the gluten free diet has probably crossed your mind. Likely you consider how you will feel afterwards, before you decide to indulge or not.

My daughter has wished on a number of occasions that she could cheat even just once in a while. However her extreme reaction to gluten exposure is enough of a deterrent for her. She is particularly sensitive to gluten, with a single crumb causing more than enough discomfort that she is now gluten phobic (much like germaphobe fears). For that reason I do not worry about her cheating.

However, I have met Celiacs who believe that cheating once in a while is OK- that the indulgence is worth the discomfort they will experience later. In this viewpoint, the only reason to be on a gluten free diet is to avoid intestinal discomfort (and need I say, just feeling blah too). Really? Is that what being a Celiac is?...going gluten free because it upsets your tummy?
Celiac Disease is an autoimmune condition with no cure, but can be controlled through diet. A gluten free diet. Autoimmune refers to a condition in which an individual's immune system launches an attack on the body because the area under attack is seen as foreign. Much like a virus is a foreign body, in the case of autoimmunity in Celiac Disease the villi of the small intestine are seen as a foreign body when exposed to gluten. Villi are a hair like carpet that cover the interior walls of the small intestine. Instead of protecting the body, the immune system of a celiac attacks these villi and causes damage. This damage can take a significant time to heal- possibly taking up to a year to completely feel symptoms subside once going gluten free after diagnosis. The villi are responsible for absorbing the nutrients from food we consume- so are very important to our overall health.

Blah blah blah...so what, you may say- "I"m gluten free most of the time." While this is better than your previous diet of eating wheat and other problematic grains, this cheating still causes damage. Firstly and most obvious, this damage affects your absorption of vital nutrients to important to health. So depending on how often you cheat, the risk for osteoporosis for example will increase. Celiacs are more at risk for this condition because they are not absorbing calcium as well; and if one considers that many Celiacs go undiagnosed for 10 years or more, that is a huge void in calcium intake. Bones are not rebuilt overnight. So now that you are gluten free, imagine how long it will take your body to play catch up... Cheating just defeats and sets back your optimum bone health. There are also many other nutritionally dependant celiac conditions to consider too, osteoporosis is only one of many.
OK OK you may say...but...  No buts! There is more yet to consider! Having an autoimmune condition is no matter to be taken lightly. Having an autoimmune condition automatically increases your risk of having other autoimmune conditions appear. Celiac Disease in my opinion is the the warm fuzzy one of the bunch. Ever heard of Type1 Diabtetes or Thyroiditis? How about Rheumatoid Arthritis? If those sound boring, how about Systemic Lupus Erythematosus, Scleroderma, or Sjo¨gren’s syndrome? Then there is Autoimmune Liver Disease or Addison's Disease. This next one is not too bad though if you are into wigs...Alopecia Areata (hair loss in patches). All of these conditions listed are known to be potential partners in crime with Celiac Disease, especially if you are undiagnosed...or cheating. It is thought that part of the relation (other than genetics) of Celiac Disease to these autoimmune disorders, is that a celiac ingesting gluten then also causes the gut or small intestine to leak, allowing the antibodies attacking the villi to cross into other areas of the body and wreak havoc on other systems. So do yourself a favor- lower your risk and don't cheat. Ever!
At this point I am feeling a little like the Dr. Suess Cat in the Hat, telling the children..."that is not all!" But alas there is more you face if you do not keep strictly gluten free. Want to have children?...yes infertility possibly awaits if you cheat. So does cancer- but who wants to live a long and productive life of living to your fullest potential?!
If you're young at heart and body still, not having reached puberty quite yet, I'm sure you're looking forward to your growth spurt. Well if height doesn't bother you, then welcome to potentially remaining the height you currently are. My daughter has had to deal with this reality, since her disease was not detected until she was too far along into puberty. It bothered her for a long time- but if she was a boy, I'm sure she would be still struggling with shorter stature.
If you still need more reasons of why you shouldn't cheat, I have more. Some individuals more than others struggle with depression. Celiac disease can cause depression as you may or may not know. So protect your mental health and enjoyment of life by being proactive- just refuse to cheat.
Lastly, if the above aren't scary enough...Refractory Disease. This is one that I was not familiar with until I started researching to write this post. This is gem is essentially Celiac Disease that doesn't respond to a gluten free diet. This can be a result of years of going undiagnosed and having the small intestines so ravaged that their ability to heal is undermined. The other is a result of cheating. To treat, steroids are often used as well as immune suppressants. Some individuals however, still do not respond to this treatment and must be "fed" intravenously. And you thought your current restricted gluten free diet was bad!!!http://www.medicinenet.com/celiac_disease/page7.htm
Sadly, though I have mentioned most of the demons that await if you don't remain gluten free, there are a few more. These again are related to malabsorption and the havoc that being deficient can cause to one's health. Some of these issues of deficiencies I will save for a later post, but I hope you get the point. Cheating is not worth the brief indulgence when it comes to what the risks involved are. Adapting is hard when going gluten free, mostly psychologically speaking. But if you continue to give in to your gluten laden desires, you are 1) sabotaging yourself into continuing the cheating cycle, and 2) risking your overall health and life potentially. So next time you see that donut calling out to you, ask yourself..."Is it worth my life?"




Additional Reading:
http://www.thorne.com/altmedrev/.fulltext/10/3/172.pdf
http://customchoicecereal.com/blog/cheating-on-a-gluten-free-diet/ 
http://www.direct-ms.org/pdf/LeakyGutMS/Fasano%20Celiac%20other%20autoimmune%20disease.pdf

http://www.nlm.nih.gov/medlineplus/ency/article/000233.htm

When Celiac Disease Jumped on My Daughter

Having been a mother of a Celiac teen now for a little over two years, I have learned that Celiac Disease presents itself in many different ways. Many Celiac's that I have talked to since my daughter's diagnosis have often told me of feeling fatigued and ill with mystery conditions, aches and pains- just feeling sick all the time for years. I myself had been tested for Celiac Disease, when I began having neurological symptoms a few years back, since this master of disguise disease can mimic even Multiple Sclerosis. (I did end up having MS though, and not Celiac Disease.)

When it came to my daughter, she had been symptom free until the whirlwind that ended with a diagnosis of Celiac Disease. As a young child she was a 'good eater', healthy, active, and rarely had need of a doctor. All this changed in October of 2008, at age 13. She and her brother both ended up at home with a case of strep throat. Both were administered antibiotics, with my daughter's dosage particularly high since we were told she had a severe case of strep- so bad that she was not to go out in public until her antibiotics had been finished in 10days. In under 10 days, my son had bounced back to his normal self and had gone back to school.

My daughter on the other hand was still sick. She had finished her antibiotics, her glands were gone, and still felt awful. So I took her back to the doctor. They tested for mono. Tests came back negative. Next it was thought they may have given her too high of a dose of antibiotics and killed off her good intestinal flora, resulting in bad bacteria taking over. This too was not the case, nor were parasites which she was also tested for. There was a myriad more of blood tests done, making her feel like a blood donor versus being on track to find a solution to her illness. Then finally there was a mention that they were going to include Celiac Disease in the next battery of tests. To everyone's surprise her blood tests came back positive for Celiac Disease. There was no family member who had ever been diagnosed with Celiac disease before my daughter.

The initial doctor we had been seeing recommended immediately going on a gluten free diet. So we did. My daughter began to feel a bit better within a few days. As a follow up, I booked an appointment with her usual family doctor which took place two weeks later. It was recommended that we see a Pediatric Gastroenterologist, since her symptoms were not considered "classic" indicators of Celiac Disease. My daughter's maternal great grandmother (and her brother) had suffered from Crohn's Disease, so that was a possible consideration. I was also told that it is possible to have positive blood test results for Celiac Disease, but still have negative biopsy results-and vice versa. Therefore, biopsy is the only clear determination of Celiac Disease.

A couple more weeks later, we saw the Gastroenterologist. He was especially skeptical of the Celiac diagnosis, and said that my daughter's symptoms were more of a fit with Crohn's since her stomach pain would often wake her in the middle of the night, and even had her occasionally doubled over in pain. Her pain he said was too acute for Celiac's. He did not rule out her being a Celiac though, and told her she had to eat the equivalent of two slices of bread everyday until her biopsy which was scheduled a month later. In the meantime, they sent her for more blood work, x-rays, and a barium swallow.

Having to eat her daily bread quota (though crucial for diagnosis prior to biopsy), my daughter was now even more miserable than when she just didn't get better from strep. She reacted even more strongly to gluten now than she had previously. Occasionally she even vomited, had frequent headaches, and just felt like she had a bad flu. To make the situation even harder on my daughter, she had been too ill to attend school since mid October. The biopsy was scheduled for mid December, after which she could then go gluten free once again.

When the results came in, my daughter was positive for Celiac Disease and not Crohn's. She was devastated- but I think she would have been upset with anything that told her that she was ill with a condition. Going gluten free slowly got her on the road to recovery. It took time though. She missed more school in January, and was doing occasional days in February. She was so exhausted and still felt flu like for several weeks after going on the gluten free diet. She had missed months of horseback riding lessons too- her favorite thing in the world- so her exaggerating her recovery was out of the question. You could see it in her face that she still was not well.

In June we saw the Gastroenterologist again for a check up. (By this time, my daughter had felt much better, though still struggled with fatigue some.) This doctor had said previously, when he gave us the positive biopsy results, that my daughter would likely lose a bit of weight on a gf diet. Not that she needed to- standing at 5ft 3inches tall and a size 2. To the doctor's surprise (and also that of my daughter and I), she had lost 20lbs! I knew she had lost some weight, wearing now a size 1, zero or double zero depending on the clothing brand- but this was astounding for such an already petite girl. She has since gained more weight as she has filled out more over the course of puberty, but she no longer is plagued with her 'mini tummy' that she constantly had prior to being a symptomatic Celiac. Bloating, is something easily overlooked and masked with natural weight gains that occur in puberty.

Though the onset on Celiac Disease was dramatic in my daughter, many Celiac's go years without being diagnosed. Celiac Disease causes damage to the villi of the small intestine whether symptoms are dramatic, vague, or silent- and can lead to other health issues. Luckily my daughter was told that in a year or less, that if another biopsy were to be done that no damage would be found- meaning her risk for other Celiac related conditions would be low because there would be no permanent scarring of the villi. Unfortunately, Celiac Disease did leave it's mark nonetheless on my daughter- she would not grow to her full height. If not caught prior to puberty, Celiac Disease can stunt a child's growth. She is OK with her height now, but it bothered her for some time. The psychological aspect of having to eat gluten free for life was probably the most difficult however, and is still an ongoing struggle at times for her.
I welcome you to comment and share how you or someone you know was diagnosed. For more information related to this topic, please see my previous posts Adapting to a GF Lifestyle and Gathering GF Resources to Live Better.

Adapting to a GF Lifestyle

I think one of the biggest things that is overlooked when diagnosed with Celiac's is a sense of loss and anxiety. Being told by your doctor to stay gluten free for life and everything will be OK just seems to gloss over the significant change in lifestyle. It is not that your doctor has failed you-it is an overwhelming life change for many who are diagnosed later instead of as young children. My daughter was depressed shortly after her diagnosis. At 13, she was already an avid baker and could even make a variety of meals. She was a confident teen- and then suddenly she was scared of food, crying in the grocery store.

Food is something we often take for granted, though it is necessary for survival. But it is that basic necessity of food that I think rattles the new Celiac. It is also that more planning is required too that can be worrisome- where can I eat at the mall food court?...what can I make for lunch that will still be edible by noon?...how do I eat gf at someone else's house? And on top of all that, many gluten containing ingredient names have all the meaning of latin for most of us, and often requires extended grocery store visits in order to decipher labels. Overwhelming and Exhausting!

So how do you get through this transition?...

1) Go back to basics for a while. Meat, veggies, fruit, and eggs. Staying away from anything processed will give you the peace of mind in the initial days of adjustment. (Dairy is fine too- just be aware that things like ice cream and yogurt may be sources of gluten. So avoid initially if you are feeling anxious about reading labels.)

2) Look for a gluten free isle in your grocery store. Many grocery stores are stocking some gf products in various quantities. (Note: Just make sure to look for a gluten free label! I have seen countless times when organic products are thrown in with gluten free ones- and naturally one assumes since it is in the gf shelf that it must be gf too. So watch out!)

3) Check to see if there is a gluten free bakery in your area. This is fantastic for satisfying that craving for sweets, as well as solving the new issue of bread. I took my daughter immediately after her diagnosis to our local gf bakery that we are lucky to have here- it was a beacon of hope for her that she could live without feeling completely deprived of the foods she loved.

4) Join the Celiac association in your area. They will have information on food products that are safe, restaurant lists that are gf friendly, and many other tips.

5) Reach out to friends or colleagues that are Celiac's. They will be good sources of information, ranging from good tasting products, recipes, restaurants, etc. (Just don't let them convince you that cheating a little is OK!- some Celiac's do believe this, and it is not OK- you are damaging your small intestine by cheating!! More on this later...).

6) Don't be afraid to ask your doctor to refer you to a dietitian. The dietitian will have lots of information for you, and can help ease you through the initial stages of going gf.

7) Don't beat yourself up. What you are feeling is real, and not silly. Take small steps. You will get the hang of being gf, and it will become second nature. Find a friend to talk to, or post here and I or someone else will be happy to listen. :)

Getting Started

When you are newly diagnosed as a Celiac, there are many questions and concerns to address. However, don't panic. Realize you will be on a learning curve for a while, and that you can't grasp it all in one day. My first bit of advice is to add this book to your library- Gluten Free Diet by Shelley Case. This book was recommended by the dietitian at our children's hospital when my daughter was diagnosed. It has more than enough information to get you started on your gluten free journey, but will become that go to book as you become more seasoned as well. IT IS A MUST HAVE! I have other gluten free diet books that I had bought at the same time, but this one is the one I refer to most often.