The Gluten-Free Homemaker

I ate gluten.  For the first time in over ten years I actually ate gluten.  Not just a crumb or a bit of cross contamination.  I ate it.  But it was an accident.  It was an accident that was completely my own fault and could have (should have) been avoided.  I hope you will enjoy my little story, and hopefully learn from it.

Last week, my oldest son brought home a cold.  It didn’t hit me like a normal cold because my sinuses didn’t feel congested.  I was tired, though.  Very tired, and my head was definitely not right.  It must have settled in my ears a bit because I felt slightly dizzy at times. 

Thursday I didn’t leave the house, but by Friday I was feeling pretty good, I thought.  I needed to go to the health food store for a few things, and I took along some coupons I had for free coconut milk products.  I was sent the coupons so I could sample the products for review.  Now normally, I only review gluten-free products which usually come from gluten-free companies.  In this case, the products were dairy free, but not necessarily gluten-free.  Most of them are naturally gluten free like coconut milk or coconut yogurt, so I had in my mind that all their products were gluten free.  That was my mistake.

After getting some milk, kefir, and yogurt, I headed over to the frozen dessert section and saw some boxes of ice cream sandwiches.  They were calling to me, and I picked out two boxes.  It never occurred to me that they were not gluten free.  I never looked at the ingredients.  I bought them without though to gluten.


I went home and ate a dairy free banana split ice cream sandwich.  Granted, they are mini sandwiches and pretty small, but still.  It was an ice cream sandwich.  I thoroughly enjoyed it.  At least I had that pleasure.  As I was chewing and swallowing the last bite, I thought to myself, “They did a really good job on the wafer part.  I wonder what flours they used.  It tastes just like the gluten-filled ice cream sandwiches I remember.”  Then the light bulb went on.  It was too late.  I had eaten the whole thing.  There was nothing left to spit out of my mouth.  The deed was done.  I started saying, “Oh no.  Oh no. Oh no….”

I pulled the box out of the freezer, but I already knew what I would see.  Wheat flour.  It was right there, plain as day.  How could I be so stupid!?!  I thought about throwing up, but it’s not something my body does.  I’ve thrown up twice in my life and the last time I was 14.  I went through three pregnancies wishing I could throw up, but I never do.  I knew I couldn’t make myself do it, and I didn’t have any ipecac. 

I called my husband who reminded me to take enzymes.  I keep some around to take with me when I eat out.  It seems they do help reduce symptoms.  The ones I had are these gluten peptide enzymes.  I took four plus two other general enzymes.  Then I waited.  I chatted online with Shirley of gfe.  It helped just to tell someone who would really understand.  She minded me that I would need to detox.  Good advice.

I ate the ice cream sandwich in the afternoon.  I was not hungry for dinner that evening and it was some time after dinner that I began to feel bad.  I had a lot of burping and felt like I could vomit, but never did.  Then I had lots of gas, and finally diarrhea.  I’m sorry to be blunt like that, but it’s just reality with celiac disease. 

I do think the enzymes helped.  There were a few symptoms I did not have.  Usually, one of the first reactions I have is to suddenly become very sleepy.  I was tired for days, but I never had that extreme and sudden sleepiness.  Also, with “bigger” reactions in the past I have had intense abdominal pain.  It’s a pain that I have only had with gluten and is different from any pain I get with other digestive upsets.  I was really happy not to have that.  The thing that worried my husband the most was a mental reaction.  I have shared before about how gluten can affect me mentally.  While I was out of it, as you will see in a minute, I didn't have any major mental issues to deal with.  I'm very thankful for that.

The next day, Saturday, I was in my pajamas all day.  I can’t remember the last time I did that.  I slept for a large part of the day, and lounged around for the rest.  I ate little because I simply wasn’t hungry.  Green tea and oranges were what interested me and I figured they were good options. By dinner time I decided I was ready to eat a little.  There were lots of leftovers and everyone was fending for themselves, buy my husband and I sat down to eat together.  I had warmed up a small plate with a little leftover curried roast and carrots.  I had one small slice of beef and a small amount of rice with the vegetable mixture on it.  Here’s where I realized how out of it I really was.

I was about to start eating when I noticed my right thigh felt quite warm.  It was unusual, and I couldn’t imagine why it would feel that way.  It didn’t go away so I put my hand there and felt something very strange.  I grabbed a hold of it and took a look.  It was my beef!  It was on my lap!  How it got there, I have no idea.  I told my husband, “This is pathetic.  I’m a mess.”  I can laugh about it now, but it wasn’t funny at the time.
It took several days for me to feel mostly back to normal, and now that I’m there I’m ready to talk about it.  When I was sick, I had not interest in sharing the story, but I think it’s a good reminder of how diligent we need to be.  I’m usually so careful, but in this case, a little illness was enough to bring down my guard. 

The next time I’m at the store and not feeling up to par or just mentally distracted in some way, I will remember this accident.  I will read yet another label.  I will force myself to be diligent, because it is worth it.


Have you ever made a really stupid mistake like mine?

Labels: celiac disease, gluten-free diet

In the past ten years I’ve seen a lot of changes take place for people who are on a gluten-free diet.  Most of it is good.  There is more and better information.  There are more and better products.  Food labeling has improved.  More people are discovering they have problems with gluten, and they are healthier on a gluten-free diet.  More doctors are aware of the prevalence of celiac disease, and some are even aware of non-celiac gluten sensitivity. 

On the other hand, there is sometimes more confusion about the gluten-free diet.  All kinds of people give all kinds of advice, and some of it is bad advice.  Companies are anxious  to label their products gluten-free, but sometimes there is cross contamination, making it difficult for a consumer to know whether a product really is gluten free.  Companies also place warnings on their products to avoid a law suit, but the warnings often cause confusion or keep people from eating a product that actually is gluten free.

How do we know if a food truly is gluten free?

Determining a Safe Level of Gluten

There is a proposed FDA standard (which has not been approved) to set the limit for the amount of gluten allowed in products labeled as gluten free at less than 20 parts per million (ppm).  Now some of you might ask, “If it’s gluten free, shouldn’t it be 0 ppm?”  That would certainly be ideal, but the fact of the matter is that for processed foods, that’s just not realistic.  There is too much gluten in our world for that to happen.  Keep in mind I’m talking about processed foods.  Things like fresh fruit and vegetables should be completely gluten free after being washed.  But even gluten free grains are at risk for cross contamination due to growing, harvesting, and packaging. According to an article in the current issue of Gluten-Free Living magazine, rice, amaranth, and quinoa have the lowest risk of cross contamination.  You can read more about and see results of a pilot study on the Gluten-Free Living blog.

For more information regarding the gluten-free labeling proposed rule, you can visit the Food & Drug Administrations questions & answers page.  In regard to the 20 ppm criteria the site states,

The level is proposed based on the available analytic methods. Data from peer-reviewed scientific literature demonstrate that current analytic technology can reliably and consistently detect gluten in wheat, rye, and barley at levels of 20 ppm in a variety of food matrices.

What concerns me about that statement is that there is no mention of what is safe for people who need to be on a gluten-free diet.  At one time the safe limit was considered to be 200 ppm, and we now know that was way too high.  Many people, myself included, believe that 20 ppm is too high also.  It may not be scientific, but when numerous people react to products that are tested to 20 ppm, it says something to me.

My Personal Experience

I am not as sensitive to gluten as I used to be, but for years I was very sensitive.  It was always frustrating to hear people say that people’s reactions aren’t always due to gluten.  It’s true that people do react to other types of food, and every negative response our body has is not necessarily due to gluten.  But, I have certain reactions such as a particular abdominal pain, extreme and very sudden sleepiness, and mental reactions that I only get when I ingest gluten.  Of course, ingesting gluten is always accidental for me, and those symptoms can almost always be traced back to a specific source or a risky situation, such a eating at a restaurant.  I never get those particular symptoms when I have a stomach virus or other adverse reaction to food.  I believe many other people reporting reactions are the same way.  They know when they’ve been glutened.

Certification Programs

I appreciate companies who make efforts to provide safe food and believe the proposed standard is sufficient.  However, I will not eat those products on a regular basis.  I’m much more confident in products that participate in a gluten-free certification program, because the standards are usually higher, and because people outside the company are involved in the certification process.  GFCO is considered by many to be the best certification program.  They certify to less than 10 ppm  gluten.

What We Don’t Know

We don’t know how much gluten contamination there is for many foods, even some foods that are labeled gluten free.  There is also uncertainty about what level of gluten is truly safe, and whether that amount is different for different people.  I wholeheartedly agree with the idea that you should not base your decision of what is safe on your reactions alone.  There are people with celiac disease who have gotten diagnosed because of a family member, but they did not have symptoms, and still do not have symptoms even if they eat a piece of whole wheat bread.  Just because I am not as sensitive in my reactions as I used to be does not mean that a small amount of gluten is not causing an autoimmune response.  It simply means that I’m no longer reacting with obvious outward symptoms. 

All this makes it difficult to know what is safe to eat, especially if you or your child does not react easily.  Many people with celiac disease monitor how well they are doing by having antibody blood tests done on a regular basis, such as yearly.  That can certainly be a helpful indicator, but whether it’s sufficient is a personal decision.  There is just no clear cut way to test for whether you are having a reaction to gluten after eating a particular food that likely has cross contamination.

At Home Testing

If you are interested, EZ Gluten sells test strips for detecting gluten in food samples.  It claims to be 99% accurate and tests to 10 ppm.  You can order different amounts of test strips ranging in cost from $12.50 - $10.50 per test.  I have not tried them personally, but you can read a review by Wendy of Celiacs in the House.

Conclusion

The bottom line is that if you are eating any processed food, you are likely getting some amount of gluten in your diet.  Remember that processed can even refer to a basic grain.  For example, even though I mill many of my own flours, it does not guarantee that the flour is 100% gluten free due to cross contamination of grains. For that reason as well as others, we’re better off eating fewer grains and less processed foods and instead eating more fruits and vegetables.  I do love baking and eating baked goods, though, and I will continue to do it.  For me the key is moderation and making what I believe to be the safest choices.

Note:  My thanks to Shirley of gluten free easily for helping me to edit and clarify the information in this post.

Labels: celiac disease, gluten-free diet

Ten years ago this month I was diagnosed with celiac disease.  I’ve already written out my celiac story, so I won’t go over it again. It doesn’t look like we’ll be having a party as my son suggested in the post A Reason to Celebrate, but we’re continuing to enjoy good food. 


Interestingly, it is that son who is now also eating gluten free.  He has given me permission to share some of his story.  Let’s just call him J.  He’s my oldest and is now 19 years old.  Over the summer he worked long hard hours for a tree company.  It was one of our hottest summers ever and he drank lots of Gatorade and water.  When he mentioned one day that he had a slight change in bowel habits, but no other symptoms I attributed it to the sugar in the Gatorade.  A couple of months later he casually mentioned that he thought he should be tested for celiac.  Work had been over for a while and he was still going to the bathroom more than usual.  He also noticed that he was more tired than usual.  Later he asked me what to do for mouth sores.  I told him that canker sores can be symptom of celiac and that I had them before I went gluten-free.

I’m going to skip a lot of details that I might give if it was my own story.  The good thing was that we had testing, including an endoscopy done very quickly.  Both blood work and biopsies were negative.  The doctor said his villi looked great.  The confusing thing is that his symptoms vary.  Sometimes he seems to have a strong reaction such as diarrhea or a mental reaction (you can read about how I react to gluten mentally here).  Other times, he seems to be fine.  After all the tests came back negative and the doctor recommended a gluten challenge, J hesitantly ate some gluten.  He didn’t react, so he ate some more.  He went a week eating normally with no strong reaction, but his canker sores started coming back and he was noticably irritable.  After that he decided he should probably eat gluten free. 

I don’t think he’s completely convinced the problem is gluten because he still has fatigue.  It may be that he needs to be gluten free longer and be more careful, or it could be that something else is also affecting him.  I find his symptoms and reactions to be too much like my own to think that it’s not gluten.  For now he is eating gluten-free, though.  He respects my opinion on the matter, but he’s not a child who I can tell what to do. 

Before we had the results of the tests, I actually wanted them to come back positive.  It seemed obvious that the problem was gluten and I wanted J to know for sure that he had to eat gluten free.  Now I have mixed feelings.  I’m glad he does not have celiac disease, and I feel pretty confident that this is a case of gluten intolerance rather than celiac.  However, I hope that he will not give up on the diet. He commutes to college and plans to do so in the future, but at some point he will move out and not have mom to cook for him.  I would hate for him to live with symptoms unnecessarily, and eating gluten-free will make it much less likely that he will develop celiac disease.  However, any accidental ingestion could trigger it.

Having another gluten-free eater in the house changes things a little.  Anything I cook or bake is always gluten free and the whole family eats it.  That doesn’t mean that everyone always eats gluten free, though.  I do purchase bread, cereal, and crackers for the gluten eating members.  Thankfully, J is not a picky eater and is pretty happy as long as he has food of some sort to fill him up.  He can do a little cooking and fends for himself pretty well.  I had to clean out cabinet space to make room for more gluten free items.  Being young and on the go a lot, I try to have some quick and easy food on hand for him.  I have made and frozen some food, but I hope to do more of that soon.

That’s the gluten-free news at our house.  It’s been 10 years for me and about a month for my son.  How long have you been gluten free?

Labels: celiac disease, gluten-free diet

Many people who are on a gluten-free diet have celiac disease.  The survey I did a few months ago showed that 53% of my readers either have celiac disease, or someone in their household does.  Celiac disease is an autoimmune disease.  When someone has an autoimmune disease, their body mistakenly sees part of itself as an invader.  It results in the body attacking itself and causing damage, or it can result in abnormal organ growth or function.

Celiac Disease

In the case of celiac disease, the body  attacks the lining of the small intestine.  This reaction is triggered by gluten.  Celiac disease is the only autoimmune disease where the trigger is known.  For that reason, if you had to choose one autoimmune disease to have, celiac disease would be the one.  The disease is treated by removing the trigger and therefore eliminating the faulty immune response.  Doctors would love to know what triggers other autoimmune diseases.

Other Autoimmune Diseases

Unfortunately, if you have one autoimmune disease,  you are more likely to develop another.  According to the University of Chicago’s Celiac Disease Fact Sheet, people diagnosed with celiac disease at the following ages have a chance of developing another autoimmune disease at the percent given:

• 4 –12 yrs.     16.7% 
• 12 – 20 yrs.  27%
• over 20 yrs.  34%

There are many autoimmune diseases and even more that are suspected to be autoimmune.  According to the Gluten Intolerance Group, autoimmune diseases associated with celiac disease include:

• Addison’s Disease – adrenal gland
• Autoimmune Chronic Active Hepatitis – liver
• Type I Diabetes – pancreas
• Myasthenia Gravis – nerve impulses & muscle function
• Pernicious Anemia –lining of the stomach
• Raynaud’s Phenomenon – blood vessels
• Scleroderma –skin, GI tract, muscles, lungs, or kidneys
• Sjogren’s Syndrome – mucus-secreting glands
• Systemic Lupus Erythematosus – many organs
• Grave’s Disease – overactive thyroid
• Hashimoto’s Disease – underactive thyroid

My Autoimmune Diseases

In the fall of 2000 I was diagnosed with celiac disease.  I was grateful when we finally found an answer to my problems, and although the gluten-free diet was challenging, I was feeling better.  As months went by, I regained strength and weight, and I grew more comfortable with the diet.  After about a year life was pretty much back to normal.  Well, gluten-free normal.  Health wise, I was feeling good.

In 2006 I developed Hashimoto’s disease.  In a few months time I gained 10 pounds, became depressed, fatigued, and drained.  I began taking thyroid hormone replacement medication and felt much better after a month.  Much better compared to really bad, but not good.  I tried a different brand of medication, then another.  I changed dosages and had my thyroid levels tested multiple times. 


The bottom line is that I have never felt back to normal.  I have continued to struggle with weight gain, depression and fatigue.   It’s been particularly bad the past couple of months since I made a medicine change again (due to unavailability of natural thyroid medicines) and ended up taking too much medicine.  I have since cut back and am waiting for things to normalize. 

Of course, I realize that other factors play a part, including my age, but if given a choice between celiac disease or Hashimoto’s disease, I would choose celiac hands down.  Sure, popping a pill every morning is much easier than following a gluten-free diet, but the results don’t compare.  The gluten-free diet essentially fixes the problem, medicine just treats it.

But I don’t have that choice, so I do the best I can, and I’m well aware that there are many other autoimmune disease which are worse than Hashimoto’s.  I hope and pray that I won’t develop those.

How About You?

Do you have any autoimmune diseases?  Which ones?

Labels: celiac disease

A Recent Experience

For the first time ever, my husband and I left our kids home alone overnight.  Two nights to be exact.  We escaped to the beach where we shared a huge house with seven other couples.  We had a great time with our friends, and friends they truly are.  They understand celiac disease.  Many of them knew me when I was diagnosed and saw how weak and thin I was.  These are not people who say, “Oh come on, a little bit can’t hurt you.”  And yet, I got glutened. As understanding as they are, as kind as they were to prepare gluten-free food, they are simply not used to being as careful as I have to be to avoid contamination.

I’m pretty sure it happened during dinner Friday night.  I took a dessert for that meal which consisted of fixings for soft tacos.   I made a taco salad.  The meat was prepared with individual spices, and the lettuce, tomato, cheese, and chips were all gluten free.  I served myself first before the flour tortillas were opened.  I was quite confident that all was fine.  Maybe it was, but at some point I ingested gluten.

Saturday morning I was riding in the car with my husband.  We were headed into town to pick up a few groceries.  Suddenly, my stomach felt upset and I grew tired.  Very tired.  That’s always my signal that I’ve gotten glutened.  My husband picked up one thing then headed back to the house.  I dragged myself up to my bed where I  slept for four hours and dreamed that I was so tired I couldn’t stay awake.  My digestive symptoms weren’t too bad, thankfully, but I felt in a fog the rest of the day.  I prepared the main course that night, but still had to be careful because wheat bread and pasta were being served.  As you can imagine, I was extremely cautious, and everything seemed to go okay with that meal.

Going back a few months, I remember when we were asked to join this group at the beach.  My first response was, “No.  It will be too hard to eat.”  But who wants their social life to be controlled by celiac disease?  I didn’t, so we decided to go.  A few days before the trip I got really nervous.  “How will I manage with so many people sharing one kitchen?”  Then I told myself, “Just be careful, and it will be fine.” 

I was careful.  It wasn’t fine.  It’s not anyone’s fault.  My friends did all I could ask them to do.    When I was feeling well, I greatly enjoyed the time with my husband and friends, but always hanging in the back of my mind was the thought that I had to be careful.  I had to avoid any contamination.

Questions

The question is, if I’m given the opportunity to do something like that again, will I do it?  I’ll have to weigh the benefits versus the risk and that nagging concern.  Looking back on that weekend, was the enjoyment and refreshment worth the worry and the auto immune reaction?  Was it worth the intestinal damage that inevitably took place inside my body? 

I asked my husband what he thought.  He said we should do it again, but not in the same way.  If it was worth it to me, I would need to prepare my meals ahead of time and take a microwave or other countertop oven for reheating.  I think I could live with that.  It’s not the same as sharing the same meal with my friends, but it beats not being with them at all.

What Do You Think?

Food is a huge part of so many social activities.  It is inevitable that having celiac disease will affect one’s social life.  For many people, that’s the hardest part of dealing with the disease.  How does it affect you?  How do you handle social situations?  With the holidays approaching, your experience might help someone.

Labels: celiac disease

This post is fourth in a series.  You can read the first three posts here:

Celiac Disease – A Little History
Celiac Disease – Three Causes
Celiac Disease & Leaky Gut

There are approximately 110,000 people in the U.S. diagnosed with celiac disease.  According the the prevalence study done by the Center for Celiac Research, there are 3 million people who actually have the disease.  The incidence of celiac disease is also increasing over time and seems to double every 17 years (along with other autoimmune diseases).

Screening everyone for celiac is not cost effective, but screening symptomatic people is. As many of you know, going for years without diagnosis is costly both financially and in the price your body pays.  Early detection saves money and is better for everyone.

Point of Care Test – This pregnancy type test for celiac disease is available in Canada.  Dr. Fasano does not see it as being a good alternative for diagnosis for the average person.  He sees its uses as being limited to needing a diagnosis in the middle of nowhere, or for someone already diagnosed  to see if they might be getting cross contamination somewhere.

Diagnostic algorithms – These could be used in the future to avoid biopsy.

Prevention – A study on children (with a first degree relative with celiac) is in the early stages to determine if introducing gluten into a diet later (12 months rather than 6 months of age) allows the immune system to develop more fully and prevent the development of celiac disease. 

Drug treatments – There are a number of clinical trials going on in different parts of the world.  Each addresses the problem at a different stage in the process.  The gluten free diet  address stage zero.  If you don’t let gluten enter the body, the other steps cannot take place.  This is still the best treatment for celiac disease. Other treatments being tested include a vaccine, and enzymes found in bacteria which would break down gluten so it was not seen as a problem.  Gluten is a protein that is not completely digested by anyone.

The drug being tested by Alba Therapeutics here in the U.S. (I took part in the trial in 2006) is aimed at fixing the problem of leaky gut.  They are in phase III of the trials, so the drug has come a long way in the process of being approved, but at this stage, only 2 or 3 out of 20 drugs are actually approved.

If approved, it is a drug that would be taken before eating.  Dr. Fasano sees its uses as being limited to: a) people such as teenagers who will not comply with the diet, b) being used as a safety net when eating in somewhat risky situations c) being used for an occasional piece of birthday cake.  He would not recommend it to be used in place of the gluten free diet.

Dr. Fasano encouraged us more than once to not complain.  In the spectrum of autoimmune diseases, celiac disease is the one to have.  Because the environmental trigger is known, we have an effective, drug-free treatment in the form of the gluten-free diet.  Let’s all take heed and be thankful.

This is the last post in this series.  For more information as well as detailed pictures, read Dr. Fasano’s article in Scientific American entitled “Surprises from Celiac Disease.”

Labels: celiac disease

This post is third in a series.  You can read the first two here:

Celiac Disease – A Little History
Celiac Disease – Three Causes

The average person has 20 feet of intestines.  The intestines are covered by a single layer of cells. The total surface area of the intestines, made up by those cells is 3,000 square feet – about the size of a tennis court.  Yes, all that surface area is crammed inside you.

Medical students used to be taught that the cells were like ceramic tiles, glued together by grout. Through a study that didn’t go as expected, Dr. Fasano helped discover that the cells were not separated by “grout” as they thought, but rather by “gates.”

Zonulin is the name given to the molecule that opens and shuts the gates.  In a healthy individual these gates will open and close quickly allowing certain things to pass through.   When there is too much zonulin, such as in celiac disease, the gates stay open, and large molecules such as gluten, pass through where they should not.

Once through the gates there are two immune responses.  The first is the innate immune response which occurs quickly, such as an allergic reaction to a bee sting.  It is your body’s immediate response to a problem.

The second response is the adaptive immune response.  This is the long term solution to a problem.  In the case of celiac disease, it is the adaptive  response that develops antibodies so the innate response does not have to react every time.

Celiac Disease vs. Gluten Intolerance

Celiac disease engages both the innate and adaptive immune systems.  Antibodies are developed by the adaptive system.  These are the antibodies used for celiac screening.  In a person that is gluten intolerant, they have the leaky gut problem which causes symptoms (many the same as celiac symptoms), but it stops with the innate immune system.  Antibodies are not developed and intestinal damage does not occur.
My final post in this series will be Celiac Disease – The Future.

Labels: celiac disease

This is the second in a series of posts.  You can read the first one here:
Celiac Disease – A Little History

As an autoimmune disease that targets the gut, celiac disease has three causes.  According to Dr. Fasano, all three need to occur for a person to have the disease.

Three Causes

1. Environment – Celiac disease is the only autoimmune disease for which the environmental factor, gluten, is known.  For this reason, studying celiac disease may bring answers that are helpful in treating other autoimmune diseases.

2.  Genes – Hundreds of genes are involved in developing celiac disease.  If you think of them all as being pieces to a puzzle, one of those pieces has been identified.  In order to develop celiac disease, an individual must have DQ2 and/or DQ8.  Having one or both of those genes does not mean an individual will develop celiac, but they do have one piece of the puzzle so it is possible.  Not having one of those two genes, however, does mean that a person cannot develop celiac, because they are missing a piece of the puzzle.

3.  Mucosal Barrier (or Leaky Gut) – For celiac disease (and other autoimmune diseases) a third cause seems to be that of a leaky gut.  Having the genes and the environmental factor do not by themselves cause celiac. That is because gluten must pass through the intestinal wall in order for the genes to react.

Many traditional doctors do not believe that leaky gut is a real problem, while other non traditional doctors says it is at the heart of every problem.  Dr. Fasano believes the answer is in the middle of those two extremes.  Tomorrow’s post will cover leaky gut in more detail.

Labels: celiac disease

Dr. Alessio Fasano is the director of the Center for Celiac Research in Baltimore.  Lucky for me, I live in Maryland and have heard him speak at support group meetings a number of times over the nine years I’ve had celiac disease.  If you ever have the chance to hear Dr. Fasano speak, take it.  He is humorous, and has an ability to take technical medical information and make it understandable for the average person.  He also uses lots of pictures which I find helpful. 

Dr. Fasano spoke at our support group meeting Friday night and I want to pass some of the information on to you.  I will do it in four parts over the course of this week.

The Banana Babies
One interesting bit of history that I had not heard before took place in the 1930’s.  Here in the U.S., parents of young children who presented with symptoms of celiac disease would take their children to the doctor.  If he was sharp, the doctor recognized it as a particular digestive problem.  The parents were then asked to leave their child at the hospital for six months.  (Yes, 6 months!)  While at the hospital, the children were fed nothing but bananas.  That’s right.  Bananas and only bananas for six months.  Some of them got better, others didn’t make it.  They became known as the banana babies.

How the Gluten-Free Diet Began
It was a Greek scientist who first described this disease of the gut and gave it a name, but it wasn’t until after World War II that the cause of  the problem was found.  A pediatrician in the Netherlands noticed the mortality rate among children affected by celiac disease dropped from more than 35% to almost 0% during the war.  At the time, there was a shortage of wheat so corn flour was used instead.  When the war was over, and wheat was used once again, the doctor observed that the mortality rate rose to its previous height.  It was later discovered that gluten was the offending part of the grain and was also found in rye and barley.

Come back tomorrow for part 2: Celiac Disease – Three Causes.

Labels: celiac disease

It has been known that the genes DQ2 and DQ8 predispose people to develop celiac disease.  Some people have had genetic testing done to find out if they have the genes.  If they don’t, celiac can be ruled out.  If they do, they might develop celiac but not necessarily.

Maltese Researchers have now discovered another gene sometimes involved in the development of celiac disease.  They studied a family with three generations of people with celiac and found that those with the disease all carried a variant of the gene CD59.  They also found that those with the DQ2/DQ8 and the CD59 developed the disease, while those with only one or the other did not.

The CD59 gene is very rare, so most people with celiac disease do not have it. Therefore, it is not really useful for diagnosis.  However, the discovery should be useful in research pertaining to the relationship between genes and chronic disorders.

More information can be found in these articles:

Times of Malta.com

The Malta Independent

Labels: celiac disease

Have you ever watched a movie where a kid whose mom has died says, “I’m starting to forget her,” or something similar? It’s always so sad.  I’ve been feeling the same way about gluten except I think I’m past the “starting to” point and have almost completely forgotten.  It’s going on nine years since I’ve taken a bite of gluten filled food.

There are still the smells as I walk past an Auntie Anne’s shop or the sights when I walk past a bakery, and even occasionally the feel when I make a sandwich for one of my kids.  But really that’s all that’s left to help me remember.  I can’t remember the exact taste and texture in my mouth. 

I’m left with simply saying, “Do I like this?” rather than “How does it compare?”  I’m dependent on my family for making comparisons, but they are not real food critics.  They are mostly thinking about whether they like it or not.  Besides, they have been eating my gluten-free cookies and cakes for almost nine years.  They do eat gluten counterparts at the houses of friends and family, but the majority of what they get it gluten free.  Sandwich bread and crackers are the exception.  I do buy those things for them as well as the occasional package of cookies. 

My point is, I sometimes wonder how much they have simply gotten used to gluten-free baked goods.  Are they forgetting about gluten a little bit too?

Unlike the movie scenario I mentioned above, I don’t consider this a sad situation.  It does make it harder to review products and recipes, but if the food tastes good, does it matter how it compares?  I’m glad I’m forgetting.  Gluten wasn’t good and kind and loving to me, like a mother.  It was a thief, a destroyer.  Good-bye gluten memories.

Labels: celiac disease, gluten-free diet

There is some celebrating going on at our house. My oldest son turned 18 today, and next week he graduates after 13 years of homeschooling. That makes it a celebration for him and for me. One down and two to go! In his honor, I decided to repost this article that I wrote back in August when my blog was brand new.

Originally posted 8/24/08

The other day my 17-year-old son asked how long it had been since I was diagnosed. It will be eight years this fall. He said he thought we should have a party when I reached 10 years. A party? To celebrate finding out you have a disease? That's not what he meant, and what he said was very encouraging to me. He thought we should celebrate the fact that I have learned to cope so well. He was old enough to remember the changes we had to go through, but he is very aware that much of the food he enjoys today is a result of my having to learn to cook all over again. While he knows that it's hard, he sees a lot of good that has come from it, and he sees me as being someone who succeeded in the face of a big challenge.

My thought was, it's like climbing to the top of a mountain. You don't celebrate the mountain, you celebrate the experience and the success of getting to the top. Celiac disease is still there and it's pretty big, but I'm on top of it and enjoying the view. I hope you are too, but if you're just starting out and the view from the bottom isn't so great, be encouraged. The trail has already been blazed, and there are plenty of people to help you on the way. You can make it to the top and celebrate with the rest of us.

Labels: celiac disease

There are some things in life we have no control over, such as developing celiac disease and having to follow a gluten-free diet. We do, however, always have control over our attitude.  My brother-in-law says, “It’s more fun to have fun.”  It’s so true. Why have a complaining, woe-is-me attitude and make your life miserable? Having an attitude of gratitude for the good things in life makes life much more fun.

My mom has been a great example. When I was only a baby she had both retinas detach. She ended up being blind in one eye and having poor sight in the other. Although she had three young kids and could not drive, I never heard her complain. We rode our bikes a lot and my dad became the chauffeur. He never complained either.

When I found out I had celiac disease, I was relieved. Like many others, I was terribly sick and was grateful to have an answer. I knew that following the gluten-free diet would be hard, but I was happy to be alive. I was also grateful I didn’t have to take drugs.  While the gluten-free diet has been challenging, it has motivated me to do more cooking and baking from scratch. I have tried so many new recipes, and I’ve learned to eat foods I didn’t know existed before (such as quinoa). Reading labels has made me more aware of what is in processed foods and has helped me make better decisions about the foods we eat.

The reason I’m writing about this topic today is because Kathryn at This 'n That From on the Mountain has nominated me for the Attitude of Gratitude Award. Thanks Kathryn!

I have chosen to nominate ten gluten-free bloggers. While none of us is perfect about having a good attitude all the time, I believe these bloggers benefit the gluten-free community by their positive attitudes toward living and eating gluten free. I find ten to be a difficult number. It enables me to include so many people, but I fear that a few might feel left out. I appreciate many gf bloggers and they are all deserving of this award.

My nominations, in no particular order:

• Dana at Gluten Free in Cleveland writes about eating gluten free in the Cleveland area as well as product reviews and recipes.
• Kim at Gluten-free is Life does a lot of product reviews and menu plans.
• Rachel at Living Without Wheat has recipes and menu plans.
• Marlow at Gluten Hates Me but I'm Surviving has recipes and product reviews.
• Debbie at The Gluten-Free 'Dish' has recipes and information on living gluten, dairy, rice and sugar free.
• Heather at Life, Gluten Free writes about living with celiac disease and allergies as well as parenting.
• Wendy at gluten-free greenie does product reviews and recipes.
• Gina at The Gluten-free Gourmand provides recipes and product reviews.
• Emily at Celiac Underground shares tips and information about living gluten free.
• Wendy at Celiacs in the House provides recipes and menu plans.

Your instructions are:

• put the logo on your blog or post
• nominate at least 10 blogs that show an an attitude of gratitude
• link to your nominees within your post
• comment on their blogs to let them know they've received this award
• share the love and link to this post and the person who nominated you for the award
• tell us how you've come to have an attitude of gratitude

Labels: celiac disease, gluten-free diet

By now you may have already heard this news. In Australia, Dr. Bob Anderson is working on developing a celiac disease vaccine, and a phase one trial is being conducted.

Dr. Anderson said,

"The vaccine itself is intended to gradually desensitize the coeliac sufferer, so that gluten is tolerated. Consequently, the villi in the small intestine should revive and absorb nutrients in the normal way. Ideally, that would mean the end of gluten-free diets for people with coeliac disease."

You can read more about it at Medical News Today.

I have mixed feelings about this vaccine, but since trials are only beginning, it’s not something that needs to be sorted out right now. If you have any thoughts on it, leave a comment and let me know.

Labels: celiac disease

This video with Elizabeth Hasselbeck and Dr. Peter Green is from 2007, but it is a good overview of celiac disease.

My thanks to Wendy at Celiacs in the House for the heads up on this one.

Labels: celiac disease

Part 1 – The Witch

It was about six months after being diagnosed with celiac disease when I had my first major reaction. I was fixing gluten-free toast in my gluten-free toaster. I remembered getting a plate out, so when I saw crumbs on the plate I assured myself that I must have set the bread on the plate before putting it in the toaster.
The symptoms hit several hours later as I was driving home from a soccer game. Even though it was morning I was suddenly very sleepy. Then my belly began to rumble. I dashed into the house and made a beeline for the bathroom. After that I slept and woke up feeling pretty normal, except for one thing. I was very irritable. Very, very, irritable. For the next week I yelled at my kids and was angry about everything. I hated it. One thought kept going through my mind, “I feel like I’ve turned into a witch!”
That series of symptoms, becoming very sleepy, the bathroom thing, and then longer lasting mental issues, became the pattern for many of my reactions to accidental ingestion of gluten. My mental reactions weren’t always the same, though.

Part 2 – The Salesman

I don’t remember how I got glutened this time, but I clearly remember how I reacted mentally. I was totally apathetic. I didn’t care about anything or anyone. I didn’t like or dislike. I didn’t love or hate. I could live or die. I wasn’t depressed; I just didn’t care.
I remember explaining my mental state to my husband one evening. It was the one symptom that worried us both. However, I awoke the next morning and informed him that my status had changed. I now cared about life very much, and I was mad about everything. Beware!
We had plans to do some furniture shopping that day, and we went ahead with it. My husband wasn’t about to leave me alone so we might as well go out and do something. The problem was salespeople. I had no tolerance for them. My husband did all the talking, but after our third stop, I was losing it. The salesman would not take a hint and leave us alone. He kept pestering. He kept talking. I finally told him to shut up. Well, not really to his face. I was standing back a bit, but he might have overheard me. He did leave us alone.
So why does gluten affect me and others this way?

Part 3 – The Doctor

I think I almost cried as I sat listening to someone who truly understood. He didn’t understand because of personal experience. He understood because of medical knowledge. He explained how and why I have mental reactions to gluten.
Dr. Allesio Fasano, director of the Center for Celiac Research, spoke at a support group meeting. The room was packed, and we were all soaking in the information he was feeding us. In particular, his explanation of why celiacs have mental reactions to gluten stuck in my mind.
Intestinal permeability is part of the reaction that takes place when someone with celiac disease eats gluten. To put it simply, molecules that should be kept within the intestines are able to “leak” out into the bloodstream. Gluten is one of those molecules. When gluten is carried by the blood to the brain, it causes problems. Dr. Fasano explained that the gluten molecule is similar to endorphins which, along with other things, give us a sense of well-being. The gluten molecules will dock where endorphins are supposed to dock. In effect, gluten blocks endorphins and the positive feelings they can give us.
Thankfully, I haven’t had a bad mental reaction in a long time, but it could happen again. I hope it doesn’t happen to you, but if it does, I hope it helps to have an explanation and to know you are not alone.

Labels: celiac disease

The Baltimore Examiner ran an article last week, Doctor unraveling mystery of celiac disease, which I thought was worth reading. One topic discussed is the difference between celiac disease, allergy, and intolerance. In comparing celiac disease to wheat allergy Dr. Fasano says,

"Treatment is more than saying, "You have to avoid the food that contains the material that offends you. But if you by any chance are exposed to it, it's not a big deal because you will pay the price on the spot. You will feel bad, and it will go away."

An autoimmune disease will have a cumulative effect over time. You can end up in a very unpleasant situation [with] possible co-morbidities [such as rheumatoid arthritis].

The article includes a nice picture of Dr. Fasano and some personal information in the sidebar.
Take a look and let me know what you think.

Labels: celiac disease, gluten-free news

I have mentioned this before, but it’s worth mentioning again. The Children's Digestive Health and Nutrition Foundation web site has some useful resources. Here are several.

This 32 page slide presentation is full of pictures, charts, and information about celiac disease. It was used by Dr. Fasano when I heard him speak several months ago, and is well worth the time you take to look through it. It might be a bit overwhelming and technical for someone newly diagnosed, but the rest of you should have a look.

The following two resources are great for newbies:

The Gluten-Free Diet Guide for Families is an eight page PDF color document. It includes information about getting started on a gluten-free diet and living a gluten-free life, a shopping guide, nutritional information, resources, and more.

Celiac Disease is a two page PDF document with basic information about celiac disease.

There is lots of information available to us on the Internet, but I think it’s important that we find accurate, reliable information. I hope these links help you in doing just that.

Labels: celiac disease

During my break I thought I would provide you with some reading material. I have not read these articles entirely (at least not recently), so I can’t vouch for whether all the information is current. They were written by a retired research chemist who worked for the Agricultural Research Service, and I believe they are worth at least skimming for information that would interest you.

When I was diagnosed in 2000, information on celiac disease was not abundant as it is now. One of the first articles I found and read on the Internet was by Dr. Donald Kasarda entitled Grains in Relation to Celiac (Coeliac) Disease (1999). It is informative, but a bit technical which some people like. If nothing else, it’s worth taking a look at this Plant Taxonomy in Relation to Coeliac Toxicity chart.

In 2003 Dr. Kasarda wrote an article Celiac Disease and Safe Grains. Its objective is, “to review the relationship of wheat, rye, and barley, the harmful grains in celiac disease, to other grains that might suitably be included in the diet of celiac patients.” Among other topics, it includes information on sprouting and malting, alcohol derived from wheat, and wheat starch.

A third article by Dr. Kasarda is entitled What We Know About Grain Safety (2004). Its objective is, “to review the relationship of the harmful grains in celiac disease to other grains that might suitably be included in the diet of celiac patients and to discuss how the proteins of these grains relate to celiac disease and allergy.” It includes several plant taxonomy charts.

Take a look and let me know what you think.

Labels: celiac disease

The article Review of thousands of food items leads companies to pull products from shelves discusses how the Chicago Tribune found mislabeled products at stores in the Chicago area. The Tribune reviewed labels and conducted laboratory tests, alerting manufacturers to problems. As a result, some manufacturers are recalling products or changing the labels. The article also offers five lessons for people trying to protect themselves or their children from foods which are hazardous to their health. Those lessons, which are elaborated on in the article, are:

1. Label errors abound
2. Technically, some labels confuse
3. Oats are often tainted with wheat
4. Beware of imports
5. Skip unlabeled food

The article is a good reminder that despite food labeling laws, food is not always labeled as it should be. It's our responsibility to be diligent about reading labels, knowing terms, and using both caution and common sense.

Labels: celiac disease, gluten-free news