Monday, November 28, 2011

Getting the Test. The Celiac Test.....

I'm finally taking the plunge and getting tested for Celiac Disease. I've been teaching clients for the past year or so that it's important to get tested if you have family members who have been diagnosed with Celiac, yet I haven't practiced what I preach. I have a cousin who was recently diagnosed with Celiac disease, and an aunt who is "gluten intolerant", and as you all know I have had GI issues my entire life, plus I was iron deficient at one time in my life (and haven't really been tested since then) both of which are signs of Celiac. Many people believe that GI upset or weight loss are the two main symptoms of Celiac Disease, but in reality weight gain, iron-deficiency, depression, dermatitis, and osteoporosis or osteopenia are more common symptoms.

The New York Times wrote a fantastic article about the testing that is done for Celiac Disease. The following passage, taken from the article, describes two of the proteins that are looked for when tested;



One protein is an enzyme called tissue transglutaminase, or TTG, that is found in many cells of our body. TTG is released from the damaged intestine during active celiac disease, and antibodies to TTG are found to be elevated in the blood of most patients with untreated celiac disease.

The other protein to which the body’s immune system responds to abnormally in someone with active celiac disease (and occasionally in some other disorders) is a group of proteins found in gluten called gliadins.


I've been following the low FODMAPs diet for over two years now, and since wheat contains FODMAPs, I try to stay away from it. The other two grains that contain gluten are rye and barley, which I really don't consume. So I know my intake of gluten has been pretty low, but I've certainly not been "gluten free". I drink beer, eat gluten-containing samples at work, sometimes eat desserts at parties, plus I take bites of Nick's pastas and breads on occasion, but I want this test to be as accurate as can be, so after reading the following passage from the New York Times article I decided to increase my gluten intake before getting tested.

Going on a gluten-free diet for many months, and particularly for a year or more, can lead to the most commonly used diagnostic tests for celiac disease to no longer being helpful. Even intestinal biopsies can go back to a normal or near-normal appearance if you have been gluten-free for a long time. Without an intestinal biopsy that shows the abnormalities of celiac disease, you cannot be diagnosed with celiac disease. The only way to make a diagnosis of celiac disease after starting a gluten-free diet is to go back on gluten. This is referred to as a “gluten challenge” and is the subject of another discussion.



Here is what I've been eating/drinking:



BEER; Barley contains gluten




Wheat cakes; made from wheat and other gluten-containing ingredients



Panko Bread Crumbs (made from wheat bread)




Tuna: Yes, this does contain wheat, check out the ingredients!



Toasted Oats: While oats aren't a natural source of gluten, many are contaminated. Also, this particular cereal has wheat clearly listed in the ingredient list.



And, of course, Thanksgiving leftovers (turkey sandwich on whole wheat bread).



QUESTION: Do you have any tips for me before I get tested for Celiac? The big day is Wednesday!



If you know someone who has been diagnosed with Celiac Disease within the past 12 months (or if you have been diagnosed yourself), I encourage you to check out what the University of Chicago is doing this season to help those who have been diagnosed. Check out how you can help, or receive a generous gift of your own, here.

17 comments :

  1. So interesting, another NYT article "beating the wheat" made me think about getting tested. The thing is I don't eat wheat. Curious about the amount of time the challenge needs to be. Can't wait to hear more. Good luck.

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  2. No words of advice, you definitely seem to have the knowledge down. Wednesday, huh? How long is the turn around with the lab? I am VERY curious of your results...keep us posted. Good luck!!!

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  3. I'm glad you are getting tested. Wishing you all the best!

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  4. Good luck, Gina. I'm sure it will be nice just to KNOW, whatever the results may be.

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  5. So good to hear that you are taking your own advice. I also read recently that you have to be consuming gluten for the test to be accurate, but I haven't read the NYT article.

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  6. My MIL and SIL both have celiac, so we know it runs in my husband's family. He feels much better when he stays away from gluten, but has never officially been tested for it. Let us know the results! How long does it take?

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  7. The article is absolutely right about the gluten challenge - it's smart that you did your research. I have a couple of friends who have Celiac, and it makes a big difference to know for sure. Good luck!

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  8. Glad to hear your getting tested Gina! The common recommendation is to consume the equivalent of 3-4 slices bread per day for 3 months before testing. My own experience was that my blood test for celiac was negative (and I was eating a lot of wheat at the time), but I also did genetic testing and found out I carry the celiac gene. That being said, eliminating gluten from my diet has done wonders for my health, so I absolutely consider myself to have gluten sensitivity, and am excited about the research that is being done by Dr. Fasano and others in that area. Looking forward to hearing about your results!

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  9. I was tested for Celiac about a year ago and was still eating gluten at the time. Thankfully my test came back negative, but my GI issues were still unresolved. This past summer I had blood tests done and they came back that I have an intolerance to gliadon. I've pretty much been gluten free for 3mths now and feel a whole lot better. Not 100%, but enough to encourage me to continue eating as I have been.....

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  10. I really didn't know there were so many people with Celiac disease...it's such a new thing. Wonder if there's always been undiagnosed people, or if it's a rising epidemic?

    Anyway, best of luck, Gina!

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  11. Very interesting! I've been tested twice for celiac, once when I first started having problems and again a year ago when I switched doctors and he didn't believe my last test :) Luckily I don't have it, thinking about even tuna having wheat in it, boy would I struggle!

    I am still very thankful that so much is being done to learn about celiac. I think it's great that people are paying more attention to people with food sensitivities in general and offering gluten free items even at restaurants.

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  12. It will be very interesting to hear the results. How does one do genetic testing EA? That sounds interesting as well. I still would like to get the hydrogen breath test. Did you ever get that done?

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  13. really intrigued by your study, please give us all the details about how the study is conducted and of course the result.

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  14. TUNA!? No kidding. That just seems wrong. I'll be interested to see what you find out but I have my fingers crossed that you don't have Celiac disease! Christmas without all the cookies around? And no Great Lakes Christmas Ale? (That I still can't find anywhere...)

    Keep us posted!

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  15. Glad to hear you are officially getting tested! Crazy about the tuna containing wheat.

    Cory recently had a food allergy test after being diagnosed with EOS... turns out he is allergic to chicken, turkey, duck, almonds, & all seafood! I feel horrible because I would cook chicken & shrimp 3-4 times a week. No wonder he was feeling horrible all the time. Since cutting out all his food allergies, he feels 100% better :)

    Keep us posted!

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  16. the best advice i have is to EAT AS MUCH AS YOU CAN BEFORE HAND!! haha just in case they restrict you forever atleast you get in your good now ;)

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  17. I hope your testing went well! My daughter-in-law is gluten intolerant. After several trips to the doctor (and ER) for GI problems, she decided to get tested. While not Celiacs, following a GF diet has kept her out of the ER. I don't know if this is helpful, but the Gluten Free Goddess has a terrific website that you might find useful. http://glutenfreegoddess.blogspot.com/
    Keep us posted!

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