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From:
Adam Schroeder <[log in to unmask]>
Reply To:
Adam Schroeder <[log in to unmask]>
Date:
Wed, 18 Aug 2004 17:54:15 -0400
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<<Disclaimer: Verify this information before applying it to your situation.>>

First I want to thank everyone for their responses!

The short answer is no.  There is not a device that allows frequent checking of Gluten or Antibody levels in a fashion similar to how a diabetic can check their sugar levels.  This is what I expected as I had not heard anything about such a device previously.

However I did get some very interesting responses and found out about some products I didn't know existed.

The closest thing to what I was looking for is a product called "Gluten Meter".  I only got three responses referencing the meter and I was unable to find additional information on the web.   This is what I know about it.

It is a self administered blood test (simple thumbprick) and then it is sent to a lab for analysis.  It is available is some Canadian pharmacies (by prescription) and is covered by insurance their (up to 4 times per year) and cost about $40 Canadian if you have to pay for it.

The product is made by a German company called " Bremer Pharma GMBH".  They have a website at http://www.bremer-pharma.de/.  It is obvious from the website that the Gluten Meter is not a major product for them.  The website seems to have problems as the catalog and "contact us" pages are password protected,  and the request for more information page links to a broken CGI script.   I have not tried to contact the company via phone or regular mail.

It is interesting that this product measure Gluten level directly, rather than antibody levels.  If anyone is knowledgeable on the effectiveness of this I would like to hear about it,  I will post a follow-up summary if I get enough information.  I don't know how long the Gluten remains in the body,  or what level of sensitivity the test has.  If the test is accurate it sounds like a great way to see if you are ingesting any hidden sources of Gluten.  I would love to have this test available to me now.  I will ask my Doctor about it when I get a moment.

I also received information about a test to measure food for gluten levels.  Information can be found here http://www.elisa-tek.com/gluten_in_your_food.htm.  I do not know the cost of the item, and since the test are disposable strips I don't know how feasible (or expensive) this would be to use on a frequent basis.  Again if this was a reusable item (with a faster response time) It would be awesome... simply have your Gluten Tester taste the food before you do.   :)

Most of the other comments were concerning getting regular (3 moths, 6 months) antibody blood work,  and possibly follow-up biopsies.  My Doctor is already planning on such things,  I was hoping for something more immediate.

Many people have also said that after you are GF for a while you become more sensitive to Gluten.   Despite the physical symptoms this is a good thing as it will greatly help in determining problem foods.

This is the end of the measuring progress summary.  I'm going to write a little more below about my history and to answer some additional questions I received from some people.

The reason I was tested for Celiac is that I have Osteoporosis in my spine, and Osteopedia in some other areas of my body.  This is unusual for a 26 year old man.  I happened to discover the osteoporosis late last year when I received a bone scan as part of a medical research study that luckily I decided to participate in.  My family doctor referred me to a specialist, and she had a bunch of blood work and urine testing done looking for a possible cause.  One of the test was for Celiac... which led to additional blood work and eventually a biopsy for confirmation.  I haven't gotten the biopsy results back yet, but the Gastrologist said that it looked like he could see slight damage while he was performing it.  The biopsy was performed about 2 weeks after I went GF, but he is understanding that it may skew the results.

I don't know how long I have been an active Celiac.  I had a surgery about three years ago where my appendix had ruptured and my body had build a calcium deposit around it.  The appendix, calcium deposit, and part of my large intestine all had to be removed when everything was eventually discovered.  I'm thinking the stress on my immune system from constantly fighting the infection from the ruptured appendix, or the surgery may have trigged the Celiac.  But of course it is impossible to really say.   They told me I would have some occasional diarrhea as my body adjusted to having a slightly shorter larger intestine.  And I did have occasional derris (maybe 2 or 3 times a month) ever since then,  but it was never debilitating or an all day thing (like the flu).  Most likely the Celiac was influencing this, but I never thought of it as abnormal.  And it was odd because my diet (very heavy with bread and pasta) was fairly consistent and the diarrhea was not.

So many of the symptoms are so abstract its hard to know if they are from eating Gluten or just a random occurrence.  I work on a computer for 8-10 hours a day so fatigue (from simply not moving around enough) and headaches are not uncommon.  What's a stomach ache or a little bit of gas occasionally?

I got some responses asking if I was feeling better since I went GF.  I am feeling better, but since I have went GF I have decided to take it all the way and have been very consistent with getting exercise, taking vitamins, ect.  Pretty much everything I have tried each new years resolution and failed before the January was over with.  So I don't know how much is attributed to GF and how much is from the exercise.

Overall I am accepting it ok.  I'm very happy to be diagnosed this early before even more serious damage has been done.  If not for the bone scan I probably would have continued getting worse for years with little chance of diagnoses.  And with all the new products coming out that are GF it is not nearly as difficult as I imagine.  I will be avoiding restaurants for the near future,  I went last week with some friends and had a bunless burger.  But all I could think about was all the good food everyone else was eating, and I really wanted those breaded chicken chunks with the hottest hot sauce on them.

Anyways.. I am greatly appreciative for all the responses and support I got from people.  If anyone has any questions or comments feel free to write to me,  I'll respond.  

* All posts for product information must include the applicable country *

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