Gross exaggerations in the press about celiac disease

[the sensible celiac]

I just read an article in a Spokane Washington newspaper about a young boy with celiac disease, and a special Easter celebration that was arranged for him.  You can read it at:
http://www.spokesmanreview.com/breaking/story.asp?submitDate=2005327173856

Unfortunately I saw two glaring errors of fact in the article.

1) It said that celiac disease "can cause death if Isaiah eats even a trace of gluten, a mixture of proteins that can be found in, well, just about everything."  That is about as accurate as saying that inhaling one puff of cigarette smoke will cause you to die of lung cancer. It is an exaggeration so extreme as to be absurd.

2) Further down we see this gem "They served him chicken and rice that free of dangerous spices and sauces."  Ok, sauces can be dangerous for people with celiac disease, because they often contain wheat or other ingredients which in turn contain wheat - like soy sauce. But to suggest that a person with celiac disease must avoid spices is, as I like to say, inconsistent with objective reality.

For years I've heard various people say that spices contain wheat flour as an additive, some claim it is used to prevent caking.  If wheat flour is so good at preventing caking, why is it used to make cakes?  It is sticky stuff, it does NOT prevent caking, it causes it. I disbelieve, object to, and criticize those people who say that celiacs must avoid spices. It simply is not true. It has no basis in fact.  It is false. Celiacs can use spices, I do, and look at how not dead I am!

Ok, I'm done ranting now.

I put lots of spices in everything I cook, loads of spices. Tonight I cooked dinner and I added cumin, cinnamon, turmeric, cardamom, allspice, lemon grass, black pepper, hot chili pepper and cilantro seed (also known as coriander). Ok, it's true, I make my own curry powder. But I also buy ready made curry powder too.

[JUDI42MIL]

Ive been told most brands of spices do contain wheat so they wont stick to the bottles. Just like already packaged shreaded cheeses. Mccormick brand spices do not contain wheat.And if you write them they will say gluten free and send you many coupons
the flour makes cake when mixed with other ingredients , flour alone is used to prevent sticking and clupming. when out i always tell them to leave off all spices from my food.

[the sensible celiac]

I don't doubt that you have been told that most brands of spices contain wheat. I've been told the same thing. There are many people in the celiac community that believe and repeat that caution.

I simply do not believe that it is true.  I buy and use spices indiscriminately without suffering any consequences.

I do read the ingredients whenever I buy any sort of mixed spice preparation, like Old Bay Seasoning for example. If wheat is not listed as an ingredient then I believe there is a good reason to proceed believing that there is no wheat.

Keep in mind that US law requires the ingredients in foods to be declared on the label.

What may be different in my case is that I am deeply skeptical about some of the precautions celiacs are told to take, especially ones that seem to me to represent an excessive amount of caution.  It is possible to use too much caution and end up restricting your diet so much that it becomes unhealthy because good foods are excluded, or just too darn boring.

I respect your decision to be cautious and proceed with care, I'm not criticizing you at all.  I just think this might be a case where people sometimes tend to be too cautious at the expense of enjoying life.

[GlutenfreeWarrior]

Hi Rider,

Running a web site on Celiac disease means you of all people have to be careful about the things you say here.  The fact is the longer you are gluten free the more dangerous it becomes.  Gluten exposure in super sensitive Celiacs can cause para-anaphalactic shock.  It can, in fact, kill you.  And you would be well served to not state such opinions as absurdities.  What you are doing is ignoring medical fact and I have to wonder what area of expertise entitles you to state these strong opinions almost as if they are fact.  Study up on para-anaphalactic shock as a result of gluten exposure.  Different Celiacs have different levels of sensitivity.  Just because you are able to tolerate something doesn't mean others can.

Secondly, in America they DO NOT have to list wheat or derivatives and often do not.
When it just says spice you don't know what is in it. 

Finally, I'm out of here.  This post shows me this site can be dangerous because you are informing people certain cautions are absurd and calling factual cautions absurdities and exaggerations.  I now consider this site now to be dangerously  misinformed.

GF Warrior

I just read an article in a Spokane Washington newspaper about a young boy with celiac disease, and a special Easter celebration that was arranged for him.  You can read it at:
http://www.spokesmanreview.com/breaking/story.asp?submitDate=2005327173856
Unfortunately I saw two glaring errors of fact in the article.
1) It said that celiac disease "can cause death if Isaiah eats even a trace of gluten, a mixture of proteins that can be found in, well, just about everything."  That is about as accurate as saying that inhaling one puff of cigarette smoke will cause you to die of lung cancer. It is an exaggeration so extreme as to be absurd.
2) Further down we see this gem "They served him chicken and rice that free of dangerous spices and sauces."  Ok, sauces can be dangerous for people with celiac disease, because they often contain wheat or other ingredients which in turn contain wheat - like soy sauce. But to suggest that a person with celiac disease must avoid spices is, as I like to say, inconsistent with objective reality.

[Sharon]

I also agree there is flour in spices.  I know a person who continued to be seriously ill until she made a switch to McCormick spices.  Spice Islands brand is also OK.  The other thing to watch is pre-grated cheese which also uses flour in it to prevent clumping.  Are you familiar with the website www.napervillegi.com.  It is an Illinois support group that has tried to track down numerous  food and medication items to determine if GF or not.  Follow the links through Celiac disease on that site and you get a 50 page listing of food products that are GF to the best of their knowledge. 

[the sensible celiac]

I'm glad that I put this topic in controversy and not anywhere else.

GlutenfreeWarrior, if you see this message, I'm willing to blieve that there may be some people with celiac disease who could go into shock when accidentally exposed, but I must say that I've never heard of such a case in the 7 or 8 years that I've been gluten free and active on celiac related email lists.

The newspaper article that I read, and to which I objected, made it sound as if it is generally a matter of life and death for people with celiac disease to avoid gluten. This is not true for most people with celiac disease. Thus my objection stands.

As far as spices go, each person must assess for themselves what they believe the risks are, how severe and disruptive an accidental exposure to gluten may be, and whether or not a particular food item poses a sufficient probability of doing harm to suffer the consequences of avoiding it.

I make no claim of being a medical expert, I never have.  On the about page http://sensibleceliac.com/about.html that describes this website and its purpose you will find these two paragraphs:

"The sensible celiac is intended as a means of expression of personal opinions and assertions that are believed to be true. No warranty or guarantee of any kind applies to the statements, ideas, suggestions or other content on this site.

Make up your own mind. Think for yourself. Don't do anything just because you read about it here, do your own research. We just want to stimulate thought and promote the free exchange of ideas. "

I'm sorry my message caused you to take offense, but I'm glad you posted your ideas on the subject.

I hope you will reconsider and still participate here.

Steve

[JUDI42MIL]

Remember everyone this is a controversy section. so we all arent gonna have the same feelings on things.

Steve isnt old bay-- Mccormick????Or do other brands make it also?

And I do think as of the last, I dont know how many mo. , In the US they do have to list wheat if it is in anything. Isnt that right????help me someone
Problems is with spices lots have them laying around for years.So any of the old wouldnt have to list.

I for one think checking for wheat in makeup is carried away a bit.. But I dont have a problem from any, It doesnt bother me, but it may others. We all have differing degrees of damage in us, so makes sense what bothers some wont others.
I dont choose to get my gluten if I do, from spices , when I know mccormicks are safe. If Im gonna get glutened its gonna be from bread or something darn I do miss a good bread.

GF warrior I also hope you stay, I for one love to hear all opinions. And hearing them is what helps each of us with or chooses of food each day.

[the sensible celiac]

Thank you JUDI42MIL by trying to help heal the thread here.  I truly appreciate it.  And yes, I think we should all agree up front that there will be times that we disagree. I think of a discussion forum as being a little bit like a trip to the supermarket, I take what appeals to me, and then leave the rest behind.

You were right about the Old Bay Seasoning, I just looked at my package and it is made by McCormicks.  And I have also heard it said many times that McCormicks spices are all GF, so there we have that sorted out.

There is another strategy that some people use for dealing with the issues around spices. Even the people who are most concerned about wheat being in their spice products generally agree that if you buy whole spices there is no danger of wheat being present.

So what I do when I make my own curry powder is put bits of whole, unground spices in an electric coffee grinder that I use only for that purpose.  In a few seconds you have freshly ground curry powder, and you know exactly what is in it.

Some other times I'm in too much of a hurry to make my own curry powder so I use a Japanese product called S&B Oriental Curry Powder which I find in the asian food section of some supermarkets in a very small yellow and red tin.  The ingredients are listed on the package, there is no wheat listed, and I've never suffered any ill effects from using it.

I believe that you are also correct about recent changes in FDA food labeling guidelines that relate to common food allergens, including wheat.  I'll try to find a reference and post it online later.

Thanks again
Steve

[the sensible celiac]

As JUDI42MIL suggested, it is a fact that the FDA does now require the explicit labelling of foods that contain common food allergens, including wheat among others.

Here is a link to a page desribing this regulation on the official website of the FDA:
http://www.cfsan.fda.gov/~dms/alrgact.html
As I read this, the makers of spices are required to list wheat if it is an ingredient. I'm not a lawyer or a doctor, keep that in mind if you decide to flame me about this.

Don't miss this section which describes legal requirements for labelling foods as GF that are set to take effect in the future:

"SEC. 206. GLUTEN LABELING.

Not later than 2 years after the date of enactment of this Act, the Secretary of Health and Human Services, in consultation with appropriate experts and stakeholders, shall issue a proposed rule to define, and permit use of, the term ``gluten-free'' on the labeling of foods. Not later than 4 years after the date of enactment of this Act, the Secretary shall issue a final rule to define, and permit use of, the term ``gluten-free'' on the labeling of foods."

[GwenRN]

Warrior,

I am sorry to see that you have been upset by this disagreement. I know that the intention of this site is to lead people to do research and think for themselves, and become informed about their condition, and I believe that is what Steve is trying to do.

As far as the debate about spices, yes, it is common to find them listed among questionable items for celiacs, and this is because they may have been, at one time, supplemented by wheat flour to prevent caking. However, recent legislation HAS required the listing of wheat whenever used as an ingredient (it's among the top 5 allergens now required) Oftentimes, in medicine, tradition is followed because that's the advice that was always given, whether or not current research supports such tradition. One example is the advice to ice an injury, despite many studies which say this is ineffective in reducing swelling. I personally believe we still see spices listed as "forbidden" or "questionable" for this reason.

As far as the argument about anaphylaxis, I will continue this post when I return home from the bank, but I have never read about, nor do I understand the pathophysiology involved in true celiac disease (as opposed to wheat allergy) which would make such a thing possible.

And about the original article, I do believe it has been sensationalized and does contain some inaccurate information, and while I believe there is a need for public understanding and awareness of the disease, misinformation does not help.

Just my 2 cents.....

Gwen

[the sensible celiac]

I've done some research today on the issue of allergic reactions, celiac disease, and people dying suddenly as a result of something they ate.

I can find nothing in the medical literature I was able to locate that suggests that celiac disease could cause a person to die suddenly after eating food with gluten.

Celiac disease is distinctly different from allergies.  The unpleasant reactions that occur in a person with celiac disease are mediated by different factors in the body than what happens when a person with an allergy eats their trigger allergen.

It is certainly common for people with celiac disease to also have some allergies.

Most allergic reactions occur as a result of exposure to a protein. They cause a response that involves histamines and a trace serum protein called IgE.  Allergic reactions do pose a threat of immediate death and must be taken very seriously. Among the proteins a person could be allergic to are those proteins found in wheat, although tree nuts, peanuts, and shellfish are far more often associated with violent, life-threatening allergic reactions.

Celiac disease is not an allergic reaction, it is an autoimmune disorder. While allergic reactions always involve a response mediated by IgE, celiac disease involves different immune activities that rely on IgA and IgG trace serum proteins. This is why blood tests for celiac disease focus on the levels of IgA and IgG in the blood and pay no attention to IgE.

It is certainly possible that a person who has celiac disease could also be allergic to wheat. But if they are, that is an allergy and not celiac disease.  In much the same way, I own a Toyota and a Subaru. If I die in a car accident while riding in my Subaru it will have nothing to do with the fact that I own a Toyota.

While it is possible that a person with celiac disease might also have violent, life threatening allergic reactions to wheat, these allergic reactions would be the result of an allergy and not celiac disease.

So, after researching this matter and discussing it with a medical professional, my conclusion is that celiac disease could not possibly cause a person to die suddenly as a result of exposure to gluten.

You might disagree, and you may disagree, my opinion remains the same, based on the facts I was able to find.

Steve

[GwenRN]

Steve...

This is exactly the detail I'd planned on going into, but you've done it so eloquently that all I can do is say "I agree"

Gwen

[CarolM]

  The other thing to watch is pre-grated cheese which also uses flour in it to prevent clumping.

I had totally forgotten about this!     Thanks for reminding me!  I checked my Kraft grated cheddar cheese last night and it uses potato starch.  But I'll be sure to remember to always check the ingredient list on pre-grated cheese.

CarolM

[matroc]

"I paid for an argument! "  "No you didn't!"

[matroc]

OK now, I've read so much and can't keep track of all this info.  What is the deal with vanilla?  Please reply.  Vanilla. that Q named grain, and malto dexrtin.  Vanilla  is priority.  Carol