Tag: @cureceliac

Research shows that anyone with celiac disease will have a reaction to ingestion of gluten when it reaches just 100 mg per day. Some people have been shown to react with as little as 10mg per day. In either case, we are talking about a very small amount: the equivalent of 1/8 to 1/64 of a teaspoon of flour.

There are about 600 mg of flour in 1/8 teaspoon and in it there are about 80mg of gluten. Thus, 10 mg of gluten is just 1/64 of a teaspoon. Conversely, if a gluten-free product measures to 20 ppm per serving it would require ingesting of more than two pounds of that product in one day. (page 122)

I knew that cross contamination was a problem, but I didn’t really understand the scope of it. I had heard that working in a bakery that handles flour was not recommended for those with celiac disease, as you are likely to inhale too much flour. 1/8 of a teaspoon is a crazy small amount.

I’m also learning that when I eat out I need to be more specific. I need to start validating that things to do not contain any wheat, rye, or barley derivatives. I need to validate that kitchen processes don’t cross contaminate. I need to validate that sauces to not contain soya sauce, unless that soya sauce happens to be gluten free.

Cross-contamination occurs in two primary instances and should be considered at any restaurant. One may occur when a meal is prepared in the same frying oil as other foods containing possible allergens. The second may occur when food particles are transferred from one food to another by using the same knife, cutting board, pan, grill or other utensils without washing the surfaces or tools in between uses. (page 179).

I haven’t yet figured out the right words to use to explain this in a restaurant context. I always tell the waiter/waitress that I have celiac and that the food must be absolutely gluten free. I try to ensure that they know that it cannot be cross contaminated. When I’m eating at a local place, I can emphasize that if the food makes me sick I will not be a return customer – this doesn’t carry as much weight when I travel.

I am travelling next week and I am nervous. I’m a little afraid that somewhere along my travels I’ll meet with cross-contamination (as we call it in the celiac world – being glutened).

A friend asked, what happens when I accidentally ingest gluten? Unfortunately, I don’t have an immediate response – so I don’t know to stop eating it when it is happening. I also am never 100% certain where I got the cross contamination. I usually get hit with fatigue within an hour or two of exposure. The next day I get smelly stools and diarrhea. I get some swelling in my stomach, which causes my belly button to move to the right (in part this is because of my breast reconstruction surgery, which has created a lot of scar tissue in my stomach, making it swell on the left side only). Fortunately, I don’t get a lot of swelling. Then a day or two later I get a bout of dermatitis herpetiformis. May get really painful blisters on my hands that last a day or two then go away. I get rashes around some of my scar tissue that can take weeks to clear up (I’m still waiting on that, as I haven’t successfully gone two weeks without getting glutened).

My physical symptoms are rather minor – such that they would not be enough of a deterrent to keep me from eating gluten occasionally – although, honestly, the dermatitis herpetiformis is almost bad enough to be a motivating factor in and of itself. The larger issue is the long-term impacts of gluten exposure. This is the part they don’t tell you much about in the books because they don’t want to scare you. With each incident of gluten exposure, the villi in my small intestine flatten. It can take months (or 1-2 years given my age) for them to heal. The villi are what your body needs to absorb nutrients. When they are flat, you can suffer from malnutrition – and all the long-term effects of systemic malnutrition apply. So, I may experience some temporary discomfort when expose, that isn’t my biggest worry. My bigger worry is with the long-term systemic damage to my body – a body that is already having to deal with long-term systemic impacts of chemotherapy.

And so, with that, I ask that you appreciate that I’m not kidding or joking when I say that I need a gluten-free meal that is not cross-contaminated. I’m not trying to be a pain. I just want to have a nice meal that doesn’t make me sick 🙁

 

 

I’m reading the University of Chicago Celiac Disease Center’s free ebook Jump Start Your Gluten Free Diet: Living with Celiac/Coeliac Disease & Gluten Intolerance. As I read I find I’m a little frustrated. I wish someone had told me sooner that celiac disease was a genetic disease – that is, there is a gene mutation that makes you at increase risk of developing the disease at some point in your lifetime (HLA-DQ2 or HLA-DQ3). I get a little angry as to why not one of my health providers thought to tell me this – when I clearly indicate on my file (and mention regularly) that my father has celiac disease. But then I realize, his diagnosis was so long ago (20 or so years). They did not know then what they know now.

HLA tests for the class II heterodimers DQ2 and DQ8 are commercially available. Note that while the DQ2 or DQ8 genotype is considered necessary to develop CD, the presence of either one does not confirm the diagnosis. Conversely, the absence of both HLA types has a negative predictive value of over 99% and virtually excludes the diagnosis of CD. (ref here)

Very few health professionals actually know anything about celiac disease, and very few know that there is a simple genetic test to determine if you are predisposed to it. I found out that I had the genetic link only a few days after my dermatologist called to say “it looks like you might have a wheat allergy”. I had chosen to do the 23 and me genetic testing to see if there were any indicators (or counter-indicators) for me taking tamoxifen (relating to breast cancer treatment options). Since the tests take 5-6 weeks to return, I had almost forgotten about them. When the results did come back, one of the generic risk factors listed was for HLA-DQ2-Related, which indicated that I had the variant so I was at higher risk for developing celiac disease. Here is the thing, this is a simple spit in a tube, pay $200, and wait 6 week test. It is relatively inexpensive and not invasive. If you have a family member who has celiac disease, you should ask your doctor for this test (and if they say no, then 23 and me is an option!).

If someone is positive for the gene, then they should be tested regularly (yearly) for the anti-bodies. This is because celiac disease can develop at any stage in ones life – it doesn’t not necessarily present immediately.

The two key tests to run are the DGP-IgA and DGP-IgG. These antibodies are actually more promptly and fully responsive to a strict gluten-free diet, so their numbers should be as close to zero as possible, indicating a minimal antibody response to gluten. (page 25)

Again, these are simple blood tests. Minimally invasive. These are also the tests that someone who does have celiac do on a regular basis to ensure they are maintaining a gluten-free diet. The reason to test regularly is to help confirm that you are gluten-free – which isn’t always obvious. If you think you are, but you are not, then you need to examine your diet (and medications and supplements) to see where you are getting the hidden source of gluten. If you are positive for the gene, then this test can help determine if you have developed celiac disease (assuming you are eating gluten).

And so, with that, I am now telling all my close blood relatives. If you haven’t been tested for the celiac gene, you should ask your doctor for the test. You may not have celiac disease, but you may also have silent celiac (disease with no physical symptoms). Other illnesses and allergies may be celiac.

On a side note, I’m happy to report that with a gluten-free diet, I can eat a lot of things that I thought I was allergic to. I’m able to eat tomatoes again, and quinoa, and kale. I’m also tolerating lactose (not needing to take pills to eat most dairy). So many yummy foods that I had to cut out of my diet because I thought they were the cause of various symptoms (mostly blisters and eczema, which turned out to be dermatitis herpetiformis – the skin infestation of celiac disease – and why it was my dermatologist that made the initial diagnosis).