Gluten Sensitivity, Autoimmune Disease and A Little Piece of My Journey

I want to share a few videos that really struck a chord with me because of my own personal journey through the land of autoimmune disease and undiagnosed gluten sensitivity.

*I am not a doctor or any other trained medical professional for that matter, so please keep that in mind. My blog is a personal blog and I am just a 36 year old mom who has celiac disease, dermatitis herpetiformis, Graves’ Disease and have also been diagnosed with a slew of other medical issues over the course of my life.  Because I did not exhibit the “classic” symptoms of celiac disease, none of my doctors ever thought to look beyond the scope of my symptoms to find the underlying cause.

I have undertaken a medical odyssey for answers and truth, wherever they may be found (of course when it comes to celiac disease, that always seems to be a moving target). 😉  I am just curious about my story, and how I managed to slip through the cracks for so long.  I thought I would share the information I am learning along the way, in the hopes that if any of this strikes a cord with someone who hasn’t been diagnosed with gluten sensitivity yet, that they might get tested.  I can’t imagine how different things could have been had I been diagnosed with gluten sensitivity BEFORE it turned into celiac disease.  The sooner one finds out that they are gluten sensitive, the better they will be in the long run.  One’s health is a heavy price to pay for food that may unknowingly be toxic to you.

There is more available information on gluten sensitivity today than there was even just a year ago.  I personally find the whole “spectrum of gluten sensitivity,” which includes celiac disease and dermatitis herpetiformis, to be utterly fascinating.  If you think you have an issue with gluten, but your tests for celiac disease come back “negative,” you may find some valuable information in what Dr. Petersen has to say.  The first video pertains to autoimmune disease (as a whole) and gluten sensitivity.

The following video is more specific to autoimmune thyroid disease and gluten sensitivity:

I was diagnosed with Graves’ Disease in 2004 and this was the upteenth diagnosis that I had received over a lifetime of unexplained medical oddities.  This diagnosis finally set me on the path to discovering my “hidden” celiac disease.  I was diagnosed with Graves’ Disease after a sore on my leg, would not heal.  My primary doctor initially suspected Type 2 Diabetes, because diabetics can have problems with wound healing.  After she ran a blood test (which came back negative for diabetes), she called me to say that my thyroid came back “high,” in fact, extremely high.  I had no idea what that meant at the time, so she referred me to an endocrinologist to check it out further.

The first tests “Dr. G” ran on me, to see what was going on with my thyroid, included (the “normal reference ranges” that I list, were for 2004):

  • Total T3 (my score: 221, with the normal reference range of 57 – 175).

According to WebMD, the Total T3 test is:

Triiodothyronine (T3). Most of the T3 in the blood is attached to thyroxine-binding globulin. Less than 1% of the T3 is unattached. A T3 blood test measures both bound and free triiodothyronine. T3 has a greater effect on the way the body uses energy than T4, even though T3 is normally present in smaller amounts than T4.

  • Anti-TPO-Ab (my score: 428 with the normal reference range of 0 – 34).

According to the Mayo Clinic:

TPO, an enzyme normally found in the thyroid gland, plays an important role in the production of thyroid hormones.  A thyroid peroxidase test detects antibodies against TPO in the blood.  The presence of thyroid peroxidase antibodies in your blood suggests that the cause of thyroid disease is due to an autoimmune disorder such as Hashimoto’s disease or Graves’ disease.  In autoimmune disorders, your immune system makes antibodies that mistakenly attack normal tissue.  Antibodies that attack the thyroid gland cause inflammation and impaired function of the thyroid.

  • Thyroid Stimulating Immunoglobulin (my score: 186, with the normal reference range of 0 – 129).

According to Johns Hopkins University:

Thyroid stimulating immunoglobulins, also known as TSIs, are autoantibodies that are produced by the immune system in the setting of Graves’ disease.

  • FT4 (my score: 1.5, with a normal reference range of 0.8 – 1.6).

According to WebMD:

Free thyroxine (FTI or FT4). Free thyroxine (T4) can be measured directly (FT4) or calculated as the free thyroxine index (FTI). The FTI tells how much free T4 is present compared to bound T4. The FTI can help tell if abnormal amounts of T4 are present because of abnormal amounts of thyroxine-binding globulin.

  • TSH (my score: 0.021, with a normal reference range of 0.4 – 4.5).

According to MedlinePlus:

TSH is a laboratory test that measures the amount of thyroid stimulating hormone (TSH) in your blood. TSH is produced by the pituitary gland and tells the thyroid gland to make and release the hormones thyroxine (T4) and triiodothyronine (T3).

*If you have ever been confused on the TSH test (it took me forever to understand why a “low” TSH number (like my 0.021) indicated a “high” thyroid (hyperactivity), click here for a great article explaining it!).

Apparently, my scores were “good” enough for Dr. G to diagnose me with Graves’ Disease!  All I can remember thinking to myself, as I sat in his office and heard the words “Graves’ Disease,” was oh no, my eyes are going to “bug out.” Seems silly to me now, but that was all I knew of the disease back then.  It was enough to reduce me to tears and ask what was the best way to make sure that didn’t happen .  I also wanted to know if I would ever be able to have another baby, and if so, what was the most efficient treatment to get me to that point as fast as possible.  Dr. G recommended Radioactive Iodine Ablation, so that’s what I did.

Over the next 10 months, after my thyroid “died” and I was put on a thyroid replacement hormone, my TSH levels began to soar, reaching an eventual high of around 150, despite being on a very high dose of Levoxyl and a T3 hormone, Cytomel.  It felt as though the life were being sucked right out of me.  I was extremely lethargic and put on a ridiculous amount of weight.  Add to that the fact that I was a relatively new mother at the time and still battling some postpartum “adjustments.”  It was utter hell to care for a baby when I barely had the energy to get out of bed, and I quickly found myself in the midst of a deep depression, and was promptly put on antidepressants.

Poor Dr. G., he was seeing me often back then (monthly), and had grown so accustomed to me showing up in tears (I was always assuming that I would get more bad news, like an even higher TSH level than the previous month…  I had self-diagnosed myself with “Pavlov’s Dog syndrome,” by this time. 😉 ), that he greeted me each time with a box of tissues!  Love that man, it makes all the difference in the world when you have a physician with a compassionate bedside manner.

It was Dr. G. who discovered my hidden celiac disease in April of 2005; after returning from a medical conference and learning “something” that apparently connected a few dots for him, as to why I was not absorbing my thyroid hormone medication.  He said he was going to test me for celiac disease.  I laughed at him.  A few years prior (I cannot recall the exact year, but I believe it was 2000), when I was still in my career as an event planner for a major hotel, I ironically detailed a celiac disease conference.  This was back when celiac disease was still thought to be a rare childhood disease, and I can clearly remember thinking to myself, “Whew…  I am in my mid-20’s, I do not suffer from stomach aches and diarrhea and I am not super skinny.  I am in the clear for celiac disease!”  Little did I know that I should have been one of the conference attendees.

The initial blood test that Dr. G ran on me was not the current “Celiac Panel,” that is outlined on The University of Maryland Center for Celiac Research website.  Those tests include the following:

  • Total IgA
  • AGA-IgG or Antigliadin IgG
  • AGA-IgA or Antigliadin IgA
  • tTG-IgA or tissue transglutaminase-IgA

Dr. G only tested me for the presence of Anti-Gliadin Antibodies, and the following results are from my April, 2005 blood test:

  • Gliadin IgG Ab (my score: 25.2, with a normal reference range of 0 – 29.9)
  • Gliadin IgA Ab (my score: 42.7, with a normal reference range of 0 – 29.9)

Based on those results alone, Dr. G gave me the diagnosis of celiac disease and did not recommend putting me through the intestinal biopsy to confirm it (although I ultimately had two intestinal biopsies and a skin biopsy before I came to terms with the truth.  I really struggled with the fact that I did not “feel sick”).

I had the celiac panel run again in September of 2009 (I get these occasionally to see “whats going on inside,” because I cannot tell when I have been “glutened”), and this time it was the current celiac panel that my doctor ordered.  The following were my results from just 8 months ago:

If you click on the photo, it will bring up a larger image.

  • Celiac tTG Ab IgA Out of Range, (my score: 37, with a normal reference range of 0 – 19)  Apparently, I had been unknowingly ingesting gluten, which only serves as further evidence (to me anyway), that just because you may not feel sick on the outside, does not mean your immune system is not reacting nonetheless!  You cannot “outgrow” celiac disease, once you have it, you have it.  Do not be fooled into thinking that if you eat gluten and do not feel sick, that you are suddenly cured, because that could not be further from the truth.

I hadn’t noticed the following statement on my blood work before, and am not sure if it is just my local lab that does this or not :

“The American Gastroenterology Association recommends that “In the primary care setting, the IgA tTG A is the most efficient single serologic test for the detection of celiac disease. Evidence indicates that the additional inclusion of IgG antigliadin antibody and IgA antigliadin is not warranted.”  Gastroenterology 2006: 131: 1977 – 1980

To identify patients with selective IgA deficiency, samples are screened using quantitative IgA, followed with tissue transglutaminase antibodies (tTGA).

Antigliadin antibodies may be performed if indicated.

So my question is this, if only 2 components of the panel are routinely tested; how many people (that would fall within the broader spectrum of gluten-sensitivity), are falling through the cracks??

I read this note on The University of Chicago Celiac Disease Center website:

Anti-gliadin antibodies (AGA-IgG and AGA-IgA) are no longer used to test for Celiac Disease due to a low level of accuracy in people who have not yet been diagnosed.

I suppose that makes sense if a physician is looking to diagnose celiac disease.  But here is another question, how long does it take for a person to be reacting to gluten, to produce villous atrophy?  I have dermatitis herpetiformis, which I am coming to realize I have had for a very long time. According to the Gluten Intolerance Group (bold emphasis added):

Dermatitis Herpetiformis (DH) is a chronic disease of the skin marked by groups of watery, itchy blisters. The ingestion of gluten (a protein contained in wheat, rye and barley) triggers an immune system response that deposits lgA antibodies under the top layer of skin. IgA antibodies are present in affected as well as unaffected skin. DH is a hereditary autoimmune disease linked with gluten intolerance. If you have DH and do not follow a gluten-free diet, you may develop the intestinal damage of celiac disease.  With DH, the primary lesion is on the skin rather than the small intestine. The degree of damage to the small intestine is often less severe or more patchy than for those with only celiac disease. Both diseases are permanent and symptoms/damage will occur after consuming gluten.

I do believe that might explain my lack of digestive complaint.

Dr. Petersen talks about testing for gluten sensitivity in the following video:

I really keyed in on what Dr. Petersen said about:

Endomysial and anti-tissue transglutaminase antibodies being more “apropro” for celiac disease because they are positive when there is already a tremendous amount of destruction in the small intestine.

That statement prompted me to look closer at Sam’s blood test,

Click on the photo for an enlarged view.

which indicated a positive result for tTG- IgA, with a score of 36 (normal reference range < 20).  Sam’s intestinal biopsy came back “negative.”  It makes me wonder if there was actually zero intestinal damage but rather if the biopsies that were taken, were simply from unaffected areas of his small intestine?

Regardless, I asked Sam’s pediatric GI what I should do.  Do I allow Sam to continue eating gluten until there is enough intestinal damage to produce a positive biopsy or do I spare him from the risk of other potential celiac related complications by putting him on the gluten-free diet immediately?

“Dr. N” pulled me aside and said, “If Sam were my son, I would put him on the gluten-free diet immediately.”

So that is exactly what I did.  I believe that my job, as his mother, is to get my son to adulthood as healthy as possible.  If he wants to challenge the diagnosis later in life, then that will be his choice to make as an adult.  My villous atrophy can heal on a strict gluten-free diet, but because of my many years of undiagnosed/untreated gluten sensitivity and the related complications I now have, will be with me for the rest of my life.  All which could have been avoided had I only been properly diagnosed as a child.

I just received a copy of the Spring, 2010 issue of Celiac Disease News, from the National Digestive Diseases Information Clearinghouse.  The very first article is titled, Research Highlights Importance of Biopsy Site for Diagnosing Celiac Disease in Children. The following is an excerpt from the article:

Researchers from the faculty of medicine at Dalhousie University in Halifax, Nova Scotia, Canada, published findings from a study suggesting that biopsy sample sites should include the duodenal bulb—the section of the duodenum immediately adjacent to the stomach. Over 2 years, Mohsin Rashid, M.D., associate professor of pediatrics, and medical student Andrea MacDonald examined biopsy samples obtained from the duodenal bulb and from sites in the second or more distal—farther along—sections of the duodenum in 35 celiac disease patients ranging in age from 17 months to 18 years. Thirty-one of these children had abnormal distal biopsies and all but two also had abnormal bulb biopsies. More significantly, four children with normal distal biopsies showed effects of celiac disease in bulb biopsies.

Diagnosis of celiac disease would not have been possible in these four cases with distal duodenal biopsies only,” Rashid wrote in an article that appeared in the October 2009 issue of BMC Gastroenterology. “The optimal strategy for detecting villous changes should include biopsies not only from the distal duodenum but also from the bulb to improve the diagnostic yield,” he concluded.

See what I meant about celiac disease being a “moving target?”

I don’t know about you, but I was always taught to trust that my doctors knew everything there was to know about current medicine.  If a doctor told me something was so, I believed them and followed their advice (well, up until I was handed my CD diagnosis, it took me a while on that one!).  Because really, how would I know otherwise?  I did not go to medical school.  Since being diagnosed with CD, I have become hyper-aware of how many physicians are not up-to-date on current celiac disease research, including non-celiac gluten-sensitivity.  Just since my own diagnosis, I can cite 3 examples of inaccurate information being transmitted from a doctor to a patient (not intentionally):

1. When my mom asked her doctor to test her for celiac disease, he asked her if she had diarrhea.  When she responded “no,” he told her that she could not possibly have it, so it was pointless to test her.  My mom had to convince him to give her the blood test by mentioning that her daughter had it (her test was negative 4 years ago).

2. When I initially had Sam screened for CD at the age of 3, his tTG test came back within the normal range.  I asked Sam’s pediatrician when I should have him tested again and he told me that he would never have to be tested again because “he would never get it.”  I walked away from that appointment rather confused, because I had read otherwise.  After a little convincing,  he agreed to test Sam again at age 5 and this time his tTG test was positive.  It was neat though, after a lengthy conversation with “Dr. C,” he told me it was a valuable learning experience for him because it demonstrated that what he had learned in medical school was outdated.

3. My mom-in-law, who has Hashimoto’s Thyroiditis, asked her GI to test her for celiac disease (who also happens to be my GI).  When the test came back negative, she mentioned to our doctor that she had felt better when trialing the gluten-free diet (after she took the blood test), and if that meant she could have non-celiac gluten sensitivity?  “Dr. P” said there was no such thing as non-celiac gluten sensitivity because “gluten sensitivity = celiac disease” and her blood test was negative for CD, so her feeling better was only “in her head.”

Have you had any similar experiences?  If so, I would love to hear your story.

Dr. Vikki Petersen and Vitamin D

I want to share this video with you because there is some new research that Dr. Petersen discusses that might help someone struggling with Vitamin D Deficiency.

I decided to take a closer look at the vitamin supplements that we use:

This is the Liquid Multivitamin that I take by Country Life. From the website:

Does Not Contain: Yeast, wheat, soy, gluten, milk, artificial colors, artificial flavors or artificial sweeteners.

The Vitamin A in this multivitamin, is sourced 50% from Retinyl Palmitate (the pre-formed version of Vitamin A), and 50% Beta Carotene.  Click here for a great article on The World’s Healthiest Foods website re: Beta Carotene.

I also take a calcium supplement by Country Life, called Target Mins,  From the website:

Does Not Contain: Yeast, wheat, soy, gluten, milk, artificial colors, artificial flavors or artificial sweeteners.

This is the D3 Supplement that I take during the winter, also by Country Life.  From the website:

Does Not Contain: Yeast, wheat, soy, gluten, milk, starch, artificial colors, artificial flavors or artificial sweeteners.

Sam and Luke really like the flavor of the Animal Parade multivitamins by Nature’s Plus.  The best price I have found is on Amazon (180 vitamins for $14.51 with free shipping if you have Amazon Prime).  Be sure to talk with your child’s pediatrician before beginning a supplement program.

Click here for a a better view of the Supplement Facts.  The Vitamin A is sourced from Beta Carotene, so that is good but the Vitamin D in this product is ergocalciferol, or D2 (the less desirable form of Vitamin D).

I have been giving my boys Cod Liver Oil since they were under 1 year of age!  I am really glad I found Dr. Petersen’s video, since the cod liver oil competes with vitamin D absorption.  I will be looking for another DHA supplement for them right way.

This is the Vitamin D3 supplement that I give my boys during the winter, when they are not outside much getting their Vitamin D the natural way, from the sun.  I also buy this on Amazon.

I also want to suggest the following article on The World’s Healthiest Foods website: Vitamin D.  The article covers the role/benefits of Vitamin D, food sources of Vitamin D, and it also covers Deficiency and Toxicity symptoms.

Back in September, 2009; I had my doctor test my vitamin levels.  My Vitamin D3 came back at a “sufficient level” of 79.  Per my lab, the ranges are as follows:

Insufficiency:  < 20 ng/mL

Hypovitaminosis D:  20 – 30 ng/mL

Sufficiency: 40 – 100 ng/mL

Toxicity: Greater than 100 ng/mL

I actually need to watch how much Vitamin D supplementation I take (I do not supplement at all during the warm weather months because I live in a place with an abundance of sunshine and I spend a lot of time outdoors.  It is very important to talk to your health care provider about your specific needs.

Certain supplements can also affect your medications, which is another reason you should talk to your health care provider BEFORE beginning a vitamin/supplement program!  Case in point, calcium can affect how my body absorbs my thyroid replacement hormone so I need to space them out by at least 4 hours.

Lastly, I just ordered the following video and thought others might be interested too.  If the preview interests you, the full version can be ordered here, on the HealthNow website.

PLEASE NOTE: I am NOT a paid affiliate for any of these products.  I just want to share the information.

Is It Possible To Be Over-Weight And Have A Gluten Problem?

Does this surprise you, like it did me at one point in time? I would love to hear your stories.

Who Needs a Gluten Test by Dr. Rodney Ford

I absolutely love Dr. Ford’s Lego Props! And yes, I was sick, tired and GRUMPY! 😀

The Faces of Celiac Disease

Traditionally, Celiac Disease Awareness month is in October and has been since 1987.  In 2009, Canada started to promote Celiac Awareness in May, which I think is GREAT, the more, the better!   On Friday, April 30th, 2010; Zach over at Gluten Free Raleigh made a blog post announcing that North Carolina Governor, Beverly Perdue, has declared May “Celiac Disease Awareness Month” in the state of North Carolina!  Woo-Hoo!

I personally believe there can never be too much celiac disease awareness, because roughly 97% of celiacs in the United States DO NOT KNOW they have a potentially life-threatening disease that, if caught early enough, can be controlled by a change in diet.  I don’t mean “diet” in the sense of what commonly comes to mind when one thinks of going on a diet: a short-term, boring, tasteless, doomed to fail weight loss plan.  I mean a lifestyle change to a wonderful, great tasting, healthful food plan that can include all things that you always hear people saying you will lose: pizza, bread, pasta, beer.  That is hogwash, you CAN have all those things…  just gluten-free!  Want a shortcut to those GREAT GF items?  Udi’s, Udi’s, Tinkyada, Redbridge!  There are other great GF products in those categories too, but I am trying to keep it simple for the moment. 😀

If only I had been diagnosed today instead of 5 years ago…  I don’t think I would have put myself in harm’s way by denying my diagnosis for so long (can’t say I’m 100% sure of that because the food was only a small percentage of my denial, the emotional aspect is what did me in.  Although, if I had been Blogging and Tweeting back then…  that would have helped fill the emotional loss for me. I do not know what I would do without my GF blogger buds and Tweeps, they have made the feeling of isolation, {being the lone GF people in my circle of family and friends}, much more tolerable…  even enjoyable!).  If you are gluten-free and are not yet on Twitter, I cannot recommend it enough.  The gluten-Free community on Twitter is one very awesome support group.  If you are interested, check out this article, “10 reasons to Tweet Gluten-Free,” written by Sandra Robins (@MarylandCeliac on Twitter).  Sandra is also the author of The Gluten-Free Optimist, and has had her articles published in Gluten-free Living Magazine. For more on Sandra, click here.

Also, I added the links to where you can buy celiac disease awareness bracelets (see the sidebar).  We just got our newest bracelets and car magnets in the mail the other day and they are a great way to prompt people to ask you the question…  get that conversation started! 😀

Anyway, The San Diego CSA Chapter (this is a great site if you are planning a trip to the San Diego area, I referred to it quite a bit during my visit a couple of years ago) made a “grass-roots” YouTube video, starring some of their local CSA support group members, to help promote celiac disease awareness during the month of May:

If you click on the video, it will take you to YouTube and you can share it on your Facebook page, you can email it and even “tweet” it!

An Educational Gluten-Free Restaurant Experience

I think I have made it clear in the past that I do not eat out often, and I really don’t, maybe a couple of times a month, if that.  I assume a personal risk each and every time I dine out, as cross-contamination lurks everywhere, despite the best intentions to lower that risk.  I try to reduce my risk as much as possible because that is all anyone who walks in my shoes can do, reduce risk for gluten exposure, because it is our own health and well-being at stake.  If I ate out every day or even a few times a week, I would be exposed to cross-contamination entirely too much for my own good.

Want to know the funny thing?  I don’t worry about getting physically ill from being “gluten-ed,” because I do not react to gluten that way.  I do not exhibit the “classic” symptoms of celiac disease, but that does not mean I am not reacting to gluten nonetheless.  I often envy the folks that do go through the GI symptoms because at least they know they have come in contact with the poison that has the potential of taking their life one day.  I do not get that “flashing warning sign.”  I could eat out everyday and accidentally eat a crouton crumb, etc. and would not physically know about it… but that toxic protein is still wrecking havoc on my body.  I may not know about it today or even a week from now but I could find out about it years from now if I get handed another major medical diagnosis, like cancer.

Yesterday was one of those days that I decided to enjoy a lunch date with my husband at one of my favorite places dine, Bravo! Cucina Italiana.  My local Bravo has quite a few gluten-free menu options (including GF pasta) and the staff is always helpful in assisting me to find a safe option. I have spoken with the manager, Fred, in the past about celiac disease and we had a wonderful conversation about the gluten-free diet, cross-contamination, etc..  Fred told me that it has “been difficult to keep GF pasta in stock because his distributors are always out, due to the popularity of the gluten-free diet.”  That still bafoodles me, that I am actually living in a time that I once could only dream of!  Fred often has to go to the store himself to buy GF pasta for his patrons!

I ordered my usual Bravo Chopped Salad, which does not come with croutons but I still go through the spiel of asking that it be made in a fresh bowl, etc., because it just has to be done.  I also ordered the Penne Mediterranean, subbing GF pasta spirals for the gluten-filled Penne.  My local Bravo has recently been carrying Trader Joe’s Brown Rice Pasta (they used to carry DeBoles, which I do not care for but the Trader Joe’s GF pasta is actually pretty good!).  Quick note for my local ABQ’ers, if you decide to go to Bravo (ABQ Uptown) be sure to let your server know right away if you will be wanting the GF pasta, it takes about 20 minutes for them to prepare it because they start a fresh pot of water to cook the GF pasta in, so “Bravo” to Bravo on that one! 😀

My salad arrived and I mindlessly started to eat it because I have never had an issue before at Bravo.  About 6 bites in, I detected a crispy crunch in my mouth and as I looked down, there it was: a fried piece of Crispy Pasta.

See the little gluten visitor that found it's way into my salad?

I stopped eating the salad and when our server came over, I kindly pointed it out to her, to which she apologized, took the salad and went to speak with the manager.  The restaurant had started to get busy for the lunch rush so Fred didn’t come by my table personally, which I will admit was disappointing because I thought it would be a good learning experience.  Fred may have also assumed that I would go all wackadoodle on him about it, but I no longer get angry when these things happen because I was the one who decided to take the risk by eating out in the first place.

Getting angry is not productive and I certainly do not want restaurant managers to quit providing gluten-free options because they don’t want to deal with “disgruntled” gluten intolerant guests.  I have found that by being calm and kind, restaurant managers are much more receptive to further education, and adapting better protocols to better avoid repeat incidents.  I used to be a restaurant manager and I can tell you from personal experience, the people that screamed the loudest… I just wanted to quickly resolve the issue at hand then prayed I would never have to see them again.  Yelling may get you what you want in the short term, like a comp bill; but it will only come back to bite you later.  I think that kindly raising awareness and taking a moment to educate are much more effective than getting angry, because really, if you have already be “gluten-ed,” the damage has already been done and getting angry will not change that.

I will still go back to Bravo, (although I will comb through my salad first!).  I will also probably lay low on dining out for awhile so my body can heal from whatever damage that was done; because I am reacting internally, regardless of the fact that I am not bent over in physical pain.

Warning: ADD Tangent …

I really want to emphasize something to newly diagnosed “asymptomatic” celiacs and/or people with Dermatitis Herpetiformis (I have both), who do not have the “classic symptoms” of celiac disease and may be tinkering with the idea that maybe they really don’t have a problem with gluten afterall, just because they do not “feel bad” when they eat it (yes, I am speaking from personal experience).   Just because you are not in gastrointestinal distress, does NOT mean your immune system is not reacting nonetheless.  Celiac Disease and DH are Autoimmune Diseases, to which there is no cure, and only strict adherence to the gluten-free diet will reduce your risk for all the potential complications associated with untreated CD and DH.  While gluten exposure does not have an immediate physical consequence for folks like me, there will eventually be a price to pay, and potentially, that could be with one’s own life.  How much risk are you willing to take and do you understand the potential consequences?  How badly do you really want that gluten treat you miss so much?  Have you ever asked yourself why?  I did, and after a lot of hard work, I realized it never had a single thing to do with the food itself.

If you are newly diagnosed with celiac disease and are having difficulty coming to terms with your diagnosis, or simply want to know more FACTS, I would like to recommend two books that have personally helped me get out of that denial phase (I definitely went through the 5 stages of grief after my diagnosis) and into the acceptance phase.  Both books can be found here, on The University of Maryland Center for Celiac Research website.

  • The First Year: Celiac Disease and Living Gluten-Free by Jules Shepard.
  • Fast Facts: Celiac Disease co-authored by Dr. Alessio Fasano, Medical Director of the Center for Celiac Research; Dr. Carlo Catassi, Co-Medical Director of the Center for Celiac Research; and Dr. Geoffrey Holmes

Learning the facts and getting to know my diseases have been instrumental in reaching the place where I am today, happy. 😉

Blue Horizon Fish and Chip Bites, a Gluten-Free Vinegar Odyssey and Valuable Lessons Relearned

I have been sitting on this post for about a month now (researching one thing has led to another and yet another), so some of the information in this post is a bit outdated (the ingredients and labeling of the Blue Horizon GF Fish & Chip Bites have been changed since I first bought them). What started out as a simple post to help other gluten-free advocates “clear up the confusion” over the labeling of this product, has turned out to be a GREAT gluten-free learning experience for me, and I have been trying to navigate this lifestyle for 5 years now. Which only further proves to me that no one person knows everything, and living gluten-free safely and happily is a collective effort, at least until the FDA officially defines the term “gluten-free.” Hopefully you will find some useful information in this post too. So grab a cup of coffee and sit down, this is definitely one of my longer posts, LOL! 😀 If you are in a rush or already know about the labeling confusion regarding the Blue Horizon Seafood Bites, be sure to check out the last part of this post on Heinz Apple Cider Vinegar.

Several months ago while on a shopping trip to Whole Foods, I bought some Blue Horizon Fish and Chip Bites that were clearly marked gluten-free on the front of the package. I will be honest and admit that I purchased them based on that gluten-free label alone (it happens sometimes), and I didn’t read the ingredient label on the back before buying them. When I got home, I promptly tucked them into my deep freezer and forgot about them (I do that all the time too). Anyway, back in March, I was in need of a quick meal for the boys one afternoon, so I pulled out the Fish and Chip Bites, placed them on a cookie sheet and into the oven the went. I am really thankful for having started to photograph the ingredient labels to share on my blog, because it was then that I first read the ingredient label (I don’t recommend doing that!). 😀

I’ll admit this too, I automatically thought the same thing that many other gluten-free people thought… uh-oh! But before I acted impulsively and made a blog post about it, I Googled the Blue Horizon Fish and Chip Bites and came across many forums already discussing the topic, like this one on Celiac.com (I encourage you to read this message board thread, because it gives you a great idea of how frustrated and confused other celiacs can become over what we thought was a black/white issue suddenly becoming very gray).

The confusion and alarm makes sense due to the fact that we are often taught to avoid Malt Vinegar on the gluten-free diet, because it is usually made from barley (although it can also be made from corn, but neither barley or corn are one of the top 8 allergens that the FDA requires to be listed on an ingredient label), AND Malt Vinegar is not distilled (or so I thought, until I read this article (you really should read this link too, Jen Cafferty does a great job demystifying the malt vinegar confusion).

I am going to go even further into vinegars in a minute, but will tie up the Blue Horizon Fish and Chip Bites first. I contacted Blue Horizon and they were very gracious and explained the vinegar source and even included the lab test results showing that no gluten was detected in the products! That was really cool, if you ask me and I will buy their products again because of it.

Good Morning Heidi,

Thank you for contacting us with your question on the Blue Horizon Fish
& Chip Bites.

We use distilled malt vinegar which has no gluten in it. I have attached
the report form an independent laboratory showing this product is
gluten-free. Also we have changed this ingredient from the original
formula and are now using apple cider vinegar.

If you can respond with your address I can send you some $1off coupons
so you may try these gluten-free products.

Thank you again for taking the time to contact us.

Kind Regards,
Phyllis

Here are the Lab Test Results for Blue Horizon Gluten-Free Seafood Bites:

Tiffany Janes, another great advocate for the celiac community, wrote an insightful article on the Blue Horizon Seafood Bites and you can read that here. I also encourage reading that article because Tiffany touched on some things that I think every gluten-free person needs to consider more often.

So on to the vinegar odyssey I have been on!

Did you know that there was a distilled malt vinegar? I sure didn’t! I actually got excited about it, thinking I needed to score some so I could have “real” fish and chips again (I have been using Red Wine Vinegar as my Malt Vinegar substitute since going gluten-free, it’s actually pretty good!).

So what is Distilled Malt Vinegar?

According to this website, distilled malt vinegar is:

This is a clear, white vinegar, also known as spirit vinegar, made by distilling ordinary malt vinegar to produce a very strong, colourless liquid high in acetic acid. It is less pungent than malt vinegar.
Uses: In home-made pickles, and especially where the colour of the food needs to be retained for example, pickled pears.

So, I had to see what my GF pals on Twitter thought and if anyone knew where I could find distilled malt vinegar. One response I received was from a pal in Ireland, where it is quite common, he even sent me a photo of an Irish Distilled Malt Vinegar (seriously, how cool is that?). To make a long story short, after quite a bit of chatter on the gluten-free status of the different types of vinegar from various parts of the world, and a bit of confusion after I wasn’t overly clear on another question I had asked (something as simple as another person thinking I had made a statement of fact because they did not see the ? after something I wrote). It was an innocent oversight but it took off like wildfire! Remember playing the “telephone” game as a child?

I realized just how easy it is to add more confusion (even if it is unintentional) to the swirling whirlpool of misinformation flowing in the gluten-free community. 😉 I highly recommend reading a GREAT article titled “The Gluten-Free Rumor Mill” by Tiffany Jakubowski (make note of when Tiffany talks about similar products by the same company but in different countries) Whether you are new to the GF lifestyle or have been doing it for many years, it is useful “continuing education.”

Anyway, I now realize that much of the confusion caused by my Twitter bomb could have been avoided if I had paid closer attention to some information on the Heinz website (see below… I told you this was a vinegar odyssey, right?).  And this just speaks to the greater problem that I think many of us face on a daily basis: how many products have we become so comfortable with that we just drop them in our shopping cart week after week without realizing that we haven’t “checked” on them for a few years?  How many products have similar sounding names but different formulations that we don’t even think to check the label for that extra word or two that signals the difference?

From the Heinz Website:

Are Heinz® Vinegars gluten-free?

Heinz® Distilled White Vinegar is sourced from corn, not from wheat, rye, barley, or oats. Wine Vinegar and Apple Cider Vinegar are sourced from grapes and apples, respectively, not grains. Therefore, they would all be appropriate for gluten-sensitive individuals. However, Heinz® Apple Cider FLAVORED Vinegar is NOT gluten free.

Ah, yes. I had completely forgotten about the Heinz Apple Cider FLAVORED Vinegar! I cannot recall ever seeing it at the store, and I buy my vinegar in bulk at Costco anyway, so I do not even use Heinz to stay acquainted with the products.

So, I probed deeper into the Heinz Website, looking for more information on the Apple Cider FLAVORED vinegar. I visited their products page and found nothing about the flavored vinegar. I did a Google Image search looking for a picture of the label… nothing. I eventually ended up on their foodservice site, Club Heinz (scroll down to the Products section, then a little further down to the subcategory “Bulk Vinegar,” and that is where I saw it, still no picture though)!

I started to relax thinking this was just a commercial foodservice product (that lasted a millisecond before I thought.. oh no, how many restaurants/manufacturers use this product, unknowingly? So, I sent an email to Heinz and the following is what transpired:

March 22, 2010

Dear Heidi,

Thank you for contacting us to find out where you can purchase Heinz Apple Cider Flavored Vinegar. This vinegar is distilled white vinegar with an apple flavoring. The other kind is the Apple Cider Vinegar that is made from apples. Both are gluten free. The labels will be on the bottles and if you have any additional questions please feel free to contact us.

If the above stores (I omitted these to save on space) are not close to your area or the item is out of stock, we suggest that you speak with your store manager.

While we would like to be able to offer you the option to purchase this item directly from our company, we unfortunately are not set up for direct sales to consumers at this time.

Thank you again for your interest and continued patronage.  We hope that you will soon have a convenient source for all the products that you enjoy.

Heinz Consumer Resource Center
Heinzconsumeraffairs@us.hjheinz.com

When contacting us, please refer to the following reference number: 003159252A

HEINZ/cl

PS – We love hearing from Heinz® Ketchup fans. So we’ve created a place on Facebook where Heinz® Ketchup lovers can share thoughts, ideas and stories. Stop over and fan us. You’ll find recipes, videos, info, and have a chance to chat with your fellow Heinz® Ketchup aficionados. Plus you’ll be among the very first to get the latest news from Heinz® Ketchup.  Join us at:  http://www.facebook.com/HeinzKetchup

Okay, did I read that first paragraph right? Did the Heinz representative say that BOTH the regular Heinz Apple Cider Vinegar and the Apple Cider FLAVORED Vinegar ARE gluten-free? Does the Heinz website not say the exact opposite?? Hmmm.. so, I had to send an email back to them for clarification (I have been known to read things wrong before!):

You are saying that the Heinz Apple FLAVORED Vinegar IS gluten-free?

Then why does your website list it as NOT gluten-free? http://www.heinzvinegar.com/faq.aspx (Last question on the page)

Just want to make sure I have it correct before making a post on my blog. 🙂

Thank you kindly,

Heidi Kelly

Response back:

March 23, 2010

Dear Heidi,

Thank you for your interest in Heinz Products. We certainly understand how difficult it can be to find foods that meet the requirements of a restricted diet.

As you requested, the following is a listing of all of our products that do NOT have gluten containing ingredients. If the product you asked about is not on this list, then it may contain gluten containing ingredients.  Also, please note that recipes can change without notice.  Therefore, we recommend you always check the ingredient statement on the label.

HEINZ PRODUCTS:
Heinz BBQ Sauces  (Original, Chicken & Rib, Garlic, Honey Garlic Only)
Heinz Chili Sauce (All Varieties)
Heinz Cocktail Sauce (All Varieties)
Heinz Horseradish Sauce
Heinz Ketchup
Heinz Organic Ketchup
Heinz Reduced Sugar Ketchup
Heinz No-Sodium Added Ketchup
Heinz Hot Ketchup
Heinz Mustard   (All Varieties)
Heinz Pickles  (All Varieties)
Heinz Peppers  (All Varieties)
Heinz Relish  (All Varieties)
Heinz Sloppy Joe Sauce
Heinz Tartar Sauce
Heinz Traditional Steak Sauce
Heinz Worcestershire Sauce
Heinz Vegetarian Beans
Heinz Distilled White Vinegar
Heinz Red Wine Vinegar
***Heinz Apple Cider Vinegar
***Heinz Apple Cider Flavored Vinegar

Heinz Red Wine Vinegar
Heinz Garlic Wine Vinegar

Jack Daniel’s BBQ Sauces  (Original #7, Honey Smokehouse, Hickory Brown Sugar, Spicy BBQ Only)
Jack Daniel’s EZ Marinader — Teriyaki, Garlic & Herb, Steakhouse
Jack Daniel’s Steak Sauce (Both Varieties)
Lea & Perrins White Wine Marinade
Lea & Perrins Worcestershire Sauce (All Varieties)
Lea & Perrins Traditional Steak Sauce
TGI Fridays Salsa  (All Varieties)

CLASSICO PRODUCTS:
Classico Red Sauces  (All Varieties)
Classico Alfredo Sauces (All Varieties)
Classico Pesto Sauces  (All Varieties)
Classico Bruschetta (All Varieties)

DELIMEX PRODUCTS:
UPC CODE:          PRODUCT NAME:
1769600019        Tamales, 12 ct. Delimex Chicken & Cheese
1769600024        Tamales, 6 ct. Delimex Beef
1769600028        Taquitos, 25 ct. Delimex Beef
1769600029        Taquitos, 25 ct. Delimex Chicken
1769600048        Taquitos, 36 ct. Delimex Beef
1769600095        Taquitos, 12 ct. Delimex Beef
1769600096        Taquitos, 12 ct. Delimex Chicken
1769600155        Tamales, 15 ct. Costco Beef
1769600159        Tamales, 20 ct. Delimex Beef, Costco
1769600180        Taquitos, 60 ct. Delimex Beef
1769600186        Taquitos, 60 ct. Sam’s Club Beef
1769600214        Taquitos, 25 ct. Delimex 3-Cheese
1769600565        Tamales, 20 ct. Beef, Sam’s Club
1769600684        Taquitos, 66 ct. Costco Beef
1769600685        Taquitos, 66 ct. Costco Chicken
1769600315        Taquitos, 50 ct. Delimex Beef
1769600316        Taquitos, 50 ct. Delimex Chicken
1769602630        Taquitos, 50 ct. Delimex Chicken Grande
1769602640        Taquitos, 50 ct. Delimex Beef Grande
1769600189        Taquitos, 60 ct. Delimex Chicken

ORE-IDA PRODUCTS:
UPC CODE:           PRODUCT NAME:
13120XXXXX-        ALL VARIETIES of Ore-Ida® Tater Tots®
1312001879         Ore-Ida® ABC Tater Tots®
1312000080         Ore-Ida Golden Patties® (9 ct.)
1312000258         Ore-Ida® Golden Fries® (32 oz.)
1312000278         Ore-Ida® Golden Fries®  (5 lb.)
1312000286         Ore-Ida® Golden Crinkles® (32 oz.)
1312000291         Ore-Ida® Golden Crinkles® (5 lb.)
1312000296         Ore-Ida® Pixie Crinkles (26 oz.)
1312000377         Ore-Ida® Cottage Fries (32 oz.)
1312000392         Ore-Ida® Southern Style Hash Browns (32 oz.)
1312000428         Ore-Ida® Country Style Steak Fries (28 oz.)
1312000455         Ore-Ida® Zesty Twirls (28 oz.)
1312000469         Ore-Ida® Potatoes O’Brien (28 oz.)
1312000647         Ore-Ida® French Fries (8 lb.)
1312000654         Ore-Ida® Country Style Hashbrowns (6 lb.)
1312000784         Ore-Ida® Steam N’ Mash Cut Russets®
1312000785         Ore-Ida® Steam N’ Mash Cut Sweet Potatoes®
1312000787         Ore-Ida® Steam N’ Mash Garlic Seasoned Potatoes®
1312000483         Ore-Ida® Golden Twirls® (28 oz.)
1312000484         Ore-Ida® Zesties® (2 lb.)
1312000800         Ore-Ida® Steak Fries® (28 oz.)
1312000801         Ore-Ida® Shoestrings® (5 lb)
1312000828         Ore-Ida® Shoestrings® (28 oz.)
1312000833         Ore-Ida® Country Style Hashbrowns (30 oz.)
1312000862         Ore-Ida® Country Style Hashbrowns (6 lb.)
1312001036         Ore-Ida® Crispers® (20 oz.)
1312001176         Ore-Ida® Waffle Fries® (22 oz.)
1312001260         Ore-Ida® Extra Crispy Crinkle Cut (26 oz.)
1312001280         Ore-Ida® Extra Crispy Seasoned Crinkle Cut® (26 oz.)
1312001417         Ore-Ida® Extra Crispy Fast Food Fries (26 oz.)
1312001461         Ore-Ida® Country Fries  (30 oz.)
1312001492         Ore-Ida® Fast Food Fries (4 lb.)
1312008564         Ore-Ida® Golden Crinkles® (8 lb.)
1312008565         Ore-Ida® Golden Fries (8 lb.)
1312008572         Ore-Ida® Golden Crinkles® (8 lb.)  CLUB
1312001320         Ore-Ida® Sweet Potato Fries
1312001330         Ore-Ida® Sweet Potato Fries

SMART ONES PRODUCTS:
UPC CODE:           PRODUCT NAME:
2580002011         Smart Ones Broccoli & Cheddar Potatoes
2580002247         Smart Ones Lemon Herb Chicken Piccata
2580002254         Smart Ones Fiesta Chicken
2580002360         Smart Ones Santa Fe Rice & Beans
2580002918         Smart Ones Chicken Santa Fe
2580002931         Smart Ones Cranberry Turkey Medallions
2580002290         Smart Ones Honey Dijon Chicken

Again, we appreciate you taking the time to contact us.   If you need further information, feel free to call us at this toll-free number (1-800-255-5750).  Our offices are open Monday through Friday from 8:30 AM until 6:00 PM, Eastern Time.

Heinz Consumer Resource Center
Heinzconsumeraffairs@us.hjheinz.com

Huh! I love how they did not address the issue that there is conflicting information on their website! It was probably an “auto-reply!” 😉

So, one day while shopping at my local Smith’s, I saw the elusive Heinz Apple Cider FLAVORED Vinegar (so yes, it is in some grocery stores) and bought it, as well as a bottle of the regular apple cider vinegar so I could take photos of the labels for you!

If you are not looking closely at the label, would you think these products are the same, just in different sized containers?

A closer look:

And closer still:

Is it just me, or do these two labels look very similar?? At least similar enough that you might not catch the distinction?

The two Ingredient Labels:

Ingredient label for the Apple Cider FLAVORED Vinegar

The ingredient label for the Regular Apple Cider Vinegar

Talk about a paradox!

Now, knowing what I know about the distillation process (by Megan Tichy) and the gluten-free status of caramel coloring, (Nancy Lapid is another great source of information for the celiac community). I would personally lean towards the fact that the Apple Cider FLAVORED Vinegar is probably indeed “gluten-free,” but should I take the risk?

This little “adventure” has really got me thinking about the products I buy for me and my gluten-free family. Several months ago, I had the pleasure of speaking with Mary Schluckebier, Executive Director of the Celiac Sprue Association. We were originally discussing McDonald’s french fries and whether or not they are in fact “gluten-free,” (I will leave that one alone 😀 ) and she said something that has really resonated with me over the past several months. In a nutshell, Mary planted the following seeds in my head:

  • As celiacs, our heath is a matter of personal responsibility.
  • It all comes down to personal RISK, as to the products we choose to buy and consume. Reducing risk when possible should always be our main priority.
  • We all need to learn to “ask the next question.”
  • The term “Gluten-Free” does not necessarily mean “free of gluten.”

Here are few things I have been pondering over the past several months as a result of those “seeds” (these are just my personal thoughts):

  • So if one eats 10 products a day that have been tested to be under the 20 ppm limit, but still registers some level of gluten, does that have a cumulative effect?
  • If a product is tested to contain, say 6 ppm of gluten, is that per serving or the entire package?
  • If it’s per serving, and you eat the entire thing and it is technically 4 servings (how many folks actually eat a true serving size?), would that not be equal to eating something that contains 24 ppm of gluten? What is the daily maximum threshold of gluten consumption for someone with celiac disease?

I cannot seem to find any concrete answers to those questions (and yes, I do realize that I may be the only “wackadoodle” that thinks of these things!). But I have celiac disease and dermatitis herpetiformis and my son has celiac disease too. I want us to LIVE a healthy, happy and long life if possible, and in order to do that, I need to know what I am eating (have you seen Food, Inc. yet? 😀 )

On that note, I want to recommend a video on the University of Chicago Celiac Disease Center website, that I really encourage folks to watch. I cry each time I hear the kiddos talk, I feel the pain of the parents and am inspired to do whatever I can to help spread awareness. While you’re there, if you can spare a buck or two, please consider donating to the University of Chicago Celiac Disease Center.