Enzyme that can break down Gluten proteins...

I originally posted the full story over on my other blog: Celiac Gluten-breakdown Enzyme news.

In short, the news was about how in a laboratory setting, scientists have developed an Enzyme that is effective at breaking down Gluten even in a highly acidic environment (read: your stomach perhaps).

They have work to do to perfect it and produce a pill (or food additive) for celiacs to process gluten as they eat, but they are working on it. Clinical-Trials are coming soon, which could be good news, though I can not say I want to volunteer for that :)

From what I understand and have heard, what makes this different from a few existing enzymes that can supposedly break down gluten and make it safe for celiacs, is that this one is actually effective in the stomach (yeah, that is a requirement to ever be effective). There are things like gluten-ease (something like that -- I have no experience with it) that people say may help lessen the impact of gluten-containing foods if you are accidentally exposed, but this news deals with an enzyme that will truly be effective at breaking gluten down completely. I'll be watching for updates to this story.

Gluten Free / Celiac baking with Buckwheat, Amaranth, and more...

I find myself perplexed by how so many Celiacs and gluten-free / wheat-free persons are not well informed when it comes to some of the gluten-free flour alternatives that are available for baking with. There are a host of grains to choose from that are gluten-free which seem to be "off the radar" for many, including authors of various GF Cookbooks.

All of the following grains are gluten-free, and should be so long as the source you are purchasing them from certifies that they are not cross-contaminated by processing on shared equipment (with grains that would contain gluten):

• Sorghum
• Teff
• Buckwheat (it is a fruit technically)
• Amaranth
• Millet
• Quinoa (said "keen-wa")

There are various sources that will supply these grains and certify each as completely gluten free. So, why is it that I read books like "Gluten Free Kitchen" where the author (Roben Ryberg) states that she avoids these due to the debate simmering over whether they are safe for Celiacs or not. It does not take much research to find a ton of information that spells out clearly why these grains, in their pure form, are free of gluten. The only potential issue I can see, as with any flours (including rice, corn, potato, bean, tapioca, etc), is whether they are processed in a facility that could accidentally cross-contaminate the product.

So, research your options and consider some of these alternative grains. In addition to variety in your diet, you may receive additional health benefits. Here is a link to an article about how Buckwheat May Be Beneficial For Managing Diabetes for example. Some of the other grains I mentioned are quite high in protein (like Quinoa) and high in fiber too (and, dietary fiber can be hard to obtain in sufficient quantities using starches and white-flours -- like potato, corn, rice -- that have been stripped of nearly all fiber).

Follow this link if you would like to read some rather technical information about celiac and gluten free grains according to the USDA. This should satisfy even the most analytical among readers -- especially interesting are the figures toward the bottom of the page that show the genetic relations between various grains and help make clear why certain grains are gluten-free and why others are not (based on family / subfamily of grains).

So, unless someone can offer definitive proof why these other grains are not safe (if pure and uncontaminated by other grains), I think there is plenty of evidence to back up a decision to use such flours in your gluten free and wheat free baking. I suggest that authors of gluten free recipe books do their homework before writing and telling people to avoid these grains also.

Testing for Celiac - Stool testing vs. Blood testing

I wondered how many persons out there have been tested for gluten sensitivity / Celiac Disease using EnteroLab's Stool Test for Celiac Disease. This non-invasive testing method claims to be more specific, and more sensitive than existing blood tests (and, per implication from what I can gather, endoscopic biopsy of the duodenum). Moreso, you can do the test at home, since you are just mailing in a sample you collect in the privacy of your own home.

I heard about this through a friend of a friend; someone that had Celiac and was suffering some terrible issues related to it, but the "standard" blood-tests and biopsy did not detect it. Yet, every time anything with gluten was consumed, substantial issues arose. Then, they tried this fecal/stool test which showed a positive result for Celiac disease and gluten allergy. But, this is all second hand and I have no hands on experience.

If you wonder what price accompanies each test (I say "each", since they offer a series of tests including gluten sensitivity, milk protein - casein - sensitivity, soy, colitis, intestinal malabsorption, and a few others) . This is a link to the Enterolab Tests from which you can reach the pricing information for each test (and/or "panels" of tests). The basic gluten test seems to be $99.00 if I understand right. They have gene testing / genetics testing as well that looks for genetic markers that would predispose you to celiac or gluten-sensitivity too (that one appears to be $149.00). They claim your insurance may pay for the tests (I'd surely check with my insurance before ordering though - I would not just assume).

I'd love to know how effective they are and whether to recommend to others. I presume you would have to consume gluten prior to the test for a positive result, but it may be worth taking a bit of something otherwise prohibited and ordering the test just to find out. Celiac Sprue detection to-date seems a bit hit or miss, and I wonder if this test is really better.

If anyone has experience (first hand) with these tests, please share any info that may help others.

Gluten-Free or not GF? Inconsistent product labeling.

Today I made myself a couple of Vans (brand) Wheat Free Blueberry gourmet waffles for breakfast. Well, they are certainly wheat free, as the label says, but in addition they are Gluten Free (a big green and white highlight on the front of the package tells me so).

Sounds straightforward enough. I have gluten free / wheat free waffles. So, if they are GF/WF, why on the back of the package under the ingredients section do they have the disclaimer stating: "Allergy information: contains soy, manufactured on equipment that may also process products containing peanuts or other nuts, wheat, eggs and dairy ingredients"!??

To me, this seems a bit contradictory to say the least. I have to guess it is some legal CYA strategy so that just in case someone has a reaction to one of those allergens, they can say "we told you so". But then, if you are making the bold and prominent claim about being "Gluten Free" right on the front of the package, how can you possibly be processing these waffles on machines that may process wheat? It seems to me that either you marketing department really wants to push the GF thing to land additional consumers as customers, your legal department is being overly cautious, or there is truly a conflict between what the marketing crew has labeled on the front of the box versus the (potential) reality that wheat from shared-equipment may linger and be present in this supposed "gluten free waffle". So, which is it?

Labeling like this makes it very difficult to feel comfortable buying store-bought gluten-free (celiac safe) foods. Please companies, get your stories straight and stop making me wonder what is and is not safe. I want a definite. I *assume* these waffles are fine, but when your own allergy disclaimer statement makes me thing they are not, there is a problem.

Celiac Disease and Down Syndrome

Ok, so I was reading this latest supposed scientific "news" item (2006-08-11) about how Celiac tests in Down children may fail, and quite honestly, I just do not understand what is newsworthy at all in this article.

It talks about how ". . . early treatment does not appear to improve the child's quality of life or improve outcomes from one of the long-term consequences of celiac disease . . .", with regards to Down Syndrome patients with gluten intolerance issues (i.e., Celiac); but it never mentions a thing about what those "early treatment" items are. To my knowledge, there is no early treatment aside from absolute avoidance of gluten in one's diet. And, the article talks about how there are tests to detect whether a Down child has Celiac (or is prone to) before developing symptoms -- ok, how is that any different than the tests for any person??

I regularly scour the internet for scientific news that may be helpful to the gluten-free / wheat-free / celiac community, and when it came to this bit of "news", I just found myself asking: "and, how is this news?" Perhaps I am wrong, but I have to believe someone just happened to get some grant money to study a relationship between Celiac and Down Syndrome, and then publish "findings" that really are nothing more than common and well accepted knowledge about Celiac and gluten-free living that applies to all of the population, and not just Downs.

If somebody can clarify this, feel free to post here and help me understand. I can understand that Down patients may be more likely to have a genetic predisposition to Celiac, but that still would not change the point of my comments above.

Celiac Disease - A Hidden Epidemic - book review

My mother just finished reading the book "Celiac Disease - A Hidden Epidemic - Unmasking One of the Most Underdiagnosed Autoimmune Diseases" by Peter H. R. Green, M.D., who is the Director of the Celiac Disease Center at Columbia University. Though I have personally not had the opportunity to yet read it, she highly recommended the 280 page book.

From what my mother describes, it sounds like the book goes into a fair amout of detail about everything from ingredients that are safe or not, as well as what foods/products in the USA to look out for any why. She summarized some of the following (not sure what is or is not a direct quote) from the book:

• SAFE GRAINS: Rice, Corn, Millet, Teff, Sorghum, Wild Rice, Buckwheat, Quinoa, and Amaranth. (oddly, I did not notice Tapioca, bean flours, pea starch, and other obvious ones in the list -- perhaps my mother just omitted from her synopsis).
  
• AVOID: Rye, Barley (barley malt), bulgur, couscous, spelt, kamut, semolina, triticale, and einkorn.
• OATS: The protein in oats was shown to cause a reaction in a few celiac patients similar to that of the gluten peptides. But most people with celiac tolerate oats well and they are regarded as safe for most celiacs. Patients ingesting oats sometimes have more symptoms due to the increase of dietary fiber, but very few have any type of immune reaction. Oats add both fiber and variety to the gluten-free-diet -- elements that are frequently lacking. The issue of cross contamination of grains during growth or manufacturing process was discussed. You are urged to buy oats from mills that are either dedicated to gluten-free products or recommended by knowledgeable sources.
• YEAST: Baker's yeast, autolyzed yeast, and autolyzed yeast extract are gluten free. Brewer's yeast if not gluten-free unless it is found in a dietary food supplement, in which case it is gluten-free. All distilled vinegar is gluten-free. Malt vinegar is not distilled and is the only one to be avoided.
• MALT: Malt extract, malt flavoring, malt syrup, and malt flour are all made from barley and should not be used.
  
• Maltodextrin in the US, is made from corn, rice, or potato and is safe. Wheat is sometimes used in Maltodextrin in imported products and it should be labled as "maltodextrin (wheat)" or "wheat Maltodextrin".
  
• STARCH: In foods, "starch" is always cornstarch and is safe. Modified food starch is almost always cornstarch, it could be wheat starch (my comment: I have read that modified food starch in products made in the USA is always cornstarch, and this is what I find most annoying with the whole GF thing -- finding CONSISTENT information).
  
• Pharmaceuticals: both starch and modified food starch could be wheat starch.
• Many soy sauces are fermented from wheat and, if so, should list wheat on the label. When soy sauce is an ingredient within another food, the source may not always be declared - use at your own risk.
• Pure spices are gluten free. Gluten-containing grains are rarely used in a flavoring, except in meat products and products that contain meat.
• Carmel color is safe--corn is used. Though the FDA permits Malt syrup, corn is used as it makes a better product. (my thoughts... sounds lovely and all, but what about the manufacturer that gets a deal on barley and says "so what if corn makes a better product - barley is cheaper, especially now that people are using corn-ethanol in their gas tanks!".)
  
• Barley malt, not gluten free, is sometimes used as a flavoring, it should be labeled. In rare instances, barley malt is used as a flavoring but not identified on the label.
• Citric Acid made in the US is made from corn. European producers might use wheat.
• Dextrin (FDA allows wheat) but they say corn is used in the US. Imported Dextrin could be wheat.

There were other notes mom mentioned about the book to interest me in reading it. Next time I see her I will try to get hold of the thing and give it a proper (first-hand) review. The book is Published by Harper Collins, 10 East 53rd Street, NY, NY 10022 Copyright 2006 -- perhaps that will be enough info for you to easily locate a copy if interested.

Prevalence of Celiac Disease

Every day it seems I read yet another article telling of how the prevalence, or certainly the awareness of the prevalence, of Celiac disease is on the rise here in the United States. Other countries like Italy have long recognized this issue as a widespread problem affecting their population. But, the USA has lagged in awareness for a variety of reasons, primarily due to ignorance on the part of the general Physician community. Too many doctors have been educated in a system that told of Gluten Intolerance (Celiac Disease) as a disease that affects one in 5000 (quite rare), and as such they are not looking for it being the root cause of symptoms their patients exhibit.

But, this is (perhaps, and hopefully) changing. I hope that doctors in general are reading some of the same publications I do, and getting in touch with how widespread this disorder really is. This recent article about how widespread Celiac Disease is provides yet another example of the type of information I am talking about. And, some interesting quick-facts from the article include these quotes:

• Researchers now have data showing that celiac actually affects one person out of 100. That makes it the most common inherited autoimmune disease in the United States.
• Millions of adults have celiac and don't even know it.
• Bones can become brittle, blood has a harder time carrying oxygen, and brain function may be compromised. Nerves that detect pain may go haywire, resulting in tingling, burning or numbness in the hands or feet and legs.
• ...often called the "Great Imposter" because it frequently mimics chronic fatigue, osteoporosis, irritable bowel syndrome (IBS), dermatitis or dementia.
• (Read the article to get more detail)
  

I was one of those who fit the bill for the situation described in the opening paragraph of that article: "...imagine that your doctor keeps telling you that there's nothing really wrong with you and that it's all in your head...". Yep, doctors just kept telling me there was nothing wrong, as I kept deteriorating further and further.

Luckily, I had a hunch it was what I was eating that was causing my issues, so I started keeping a detailed log-book of everything I ate. I was not even aware of what Celiac disease was at the time, having absolutely no exposure to information on it. Only after my log book kept correlating my apparent "hives", various pain, and problems with my equilibrium (loss of balance) closely with consumption of Wheat-Containing products, did I start to get a clue. And, it was rough, since EVERYTHING (basically) has Wheat and/or Gluten in it it seems. After reducing my diet to just fresh fruits and vegetables for a couple weeks, and slowly introducing other foods back in to my diet, did I catch on to the trend.

The thing that threw me off course in my own "self diagnosis" was that once I thought for sure the common-thread causing problems was wheat, I'd have symptoms after eating something that did not contain wheat. Only later after learning about what Celiac disease was did I learn of that the component in wheat that was likely causing the issue was gluten (a protein), which appears in a variety of other grains -- some of them being favorites of mine like Barley, Rye, and even Oats to some extent (there's a bit of debate there, mostly due to cross-contamination issues). But, after learning about Celiac and Gluten Intolerance, amazingly those foods that were still triggering hives and such happened to contain gluten sources in them.

With this information in hand, I met with my doctors, and they still overwhelmingly felt (feel?) that it is in my head, though my hives are now gone, and other symptoms are gone as well. The only doctor that listened to me and really took the Celiac thing seriously was my Allergist, who had experience with others afflicted as such. Thank God -- someone that finally listened and was educated on this disease. It has been a few years now, and since leading as close to Gluten-Free as possible, my life has made a dramatic turn for the better. All because I became aware of the prevalence of Celiac Disease, and pushed to find a professional that was as well (I also tried to get my general-practitioners to get a clue, but I still am unsure if they "get it").