Thursday, July 15, 2010

Celiac biopsy negative, bloodwork positive

So I had the endoscopy and colonoscopy performed last week, and got the results back this morning- all is normal.

Given that the previous blood-tests were strongly positive, I asked the doctor whether she thought this ruled out Celiac or not. She replied that she honestly didn't know. Her recommendation was to get the genetic Celiac test; if that comes back negative, we can rule out Celiac. If it comes back positive for the gene, and if I respond (improve) on a gluten-free diet, then we can say that I have Celiac, or at the least a gluten-sensitivity.

This was a pretty disappointing outcome, as I was really hoping to confirm a Celiac diagnosis and finally have an answer after 18 years. I've been gluten-free since my procedure (9 days now). I've been following the diet religiously. While I did notice a small improvement in fatigue, it's not the dramatic change I noticed when I went gluten-free last month.

I asked the doctor what would be a typical improvement time for a Celiac patient, and she said it would take weeks or months, not days. So perhaps I need to be a little more patient. Especially considering how much wheat I consumed in the 3-week gluten challenge prior to the endoscopy.

Still, not the results I was hoping for.

16 comments:

  1. I have had similar symptoms to the ones you have described earlier on. They were not nearly as severe, though. After experimenting for a while I found several things that can help and am mostly symptom free now:

    1. Weight Loss
    I was a bit overweight so I started taking care of that through slow weight loss by eating less and keeping track of my weight over a year. I used Wii Fit for this, because I had it already. You can use normal bathroom scales + pen & paper, of course. The important thing is the trend here. I aimed for a weight loss of 200 gram (about half a US pound) per week. You can realize pretty quickly how much less you need to eat to achieve your goal. Regular meals, no sweet snacks. Bread sticks are ok ;)

    2. Ergonomics
    Make sure your mattress and pillow help you relax so you don't wake up sore. Take special care that your neck muscles don’t stiffen up. Massage them or have them massaged if they do. Check how you can make your work place more ergonomic. I used this as a starting point: http://www.articulate.com/products/demos/guru/Prometheus/player.html

    3. Yoga
    Five to ten minutes per day. Nothing fancy. Just a few basic postures every morning before breakfast.

    4. Simple Sugars
    This was the last thing I found and it brought me the greatest relief: avoid simple sugars, especially high-fructose syrup. I had been eating breakfast cereals containing glucose-fructose sirup for most of my life. When I stopped, the “tired fog” that came a few hours after breakfast disappeared almost immediately.

    I had heard plenty of times that “sugar is bad for you”, but what really drove the point home was this lecture: “Sugar: The Bitter Truth” by Robert H. Lustig, MD (http://www.youtube.com/watch?v=dBnniua6-oM). Some call the video alarmist and maybe they are right. But as far as I can tell the connections that are drawn make sense.

    So I began another experiment: remove simple sugars from my diet for a week. I did and it helped a lot. I still ate home made bread (made from flour, water yeast and salt; mostly whole wheat flour) with cheese and other cereals like pasta. I began to feel better within days.

    Later on I read that there are some infections that reside in the blood and feast on sugars. This could be an explanation for why removing simple sugars from my diet helped so much.

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  2. Some doctors arn't that great at reading the biopsy. When my wife was diagnosed 15 years ago we had 2 reviews of the tissue sample, the 1st review said that it was normal -- upon a request for a second opinion, the other doctor said it exhibited strong damage to cilia and he didn't know how the 1st doctor had not seen it. My wife was on death's door at that point -- bones visible and horribly sick.

    Regardless, our entire household is gluten free and it's quite easy to do and manage. The primary downside is cost... gluten free stuff is just much more expensive. That said -- it was near impossible to be GF 15 years ago, when she was diagnosed, it's rather easy these days.

    So, I'd just stick with GF diet, it may take a few months or so to start feeling better if this is what afflicts you. First, you need to start absorbing nutrients, then, you need time before all of the dietary deficiences you've been experiencing resolve themselves. It may take a year or so -- and some damage (say bone density) is permanent.
    If you start feeling better on GF diet, you'll want to have your bones tested so know if they've been compromised.

    No reason to _not_ go gluen free -- it's not hard to do and the alternative is horrible.

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  3. I've been gluten free for six years, and feel better every year.

    Something to check out is eating "Paleo" which is just meat, veggies and fruit. This does mean giving up gluten (here here), sugar, and dairy, but results in you just eating real food.

    Another note on celiac, most of my friends that 'have' it have not been tested or have been misdiagnosed in their health journey. The actions you take if you have or don't have it are about the same, and the testing has shown to be, well, varied. Don't get hung up to much on this, concentrait on what you are eating.

    All the best!

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  4. You should check out this podcast with Dr. Thomas O'Bryan. His website is totally useless, but this was fascinating.

    http://bit.ly/9eAD0m

    There's a lot more than gut symptoms. I developed thyroid problems which caused fatigue and difficulty losing weight, and I'm just getting a handle on that now after being gluten-free since October 2008. After three months, I was no longer lactose intolerant (Lactaid never worked, which is how I got to a possible gluten intolerance issue), and after six months, I could even drink milk.

    If I eat gluten accidentally now, I get stupendously ill, and I had only random gut symptoms (usually from unpasteurized craft-brewed beer) until the lactose intolerance popped up. Believe me, I couldn't care less if I ever get medical confirmation, especially knowing how dire the consequences of undiagnosed celiac can be.

    There really *is* no reason not to go gluten-free, but I place basically no faith in doctors to diagnose the disease.

    It does take weeks to feel better, at a minimum, especially if you've been having auto-immune reactions to gluten for as long as you have.

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  5. You know, you can be negative for Celiac and still have a sensitivity to gluten. If you haven't already, it's worth doing an elimination diet. You can find information about elimination diets online, but basically you remove all potential allergens from your diet and reintroduce them one at a time.

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  6. It might be worth it to check out these 2 sites to understand how sugars, grains and processed foods affect your body.

    http://wholehealthsource.blogspot.com/2008/12/gluten-sensitivity-celiac-disease-is.html

    From the following link:
    We do know that inflammation, especially chronic, systemic inflammation seems to be involved in nearly every disease under the sun.

    http://www.marksdailyapple.com/gut-flora-inflammation/

    Good luck!

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  7. Paleo is the way to go. 83% fat, 17% protein, 0% carbohydrate. Check out carbwire.com for supporting news & podcasts.

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  8. If it turns out not to be celiac disease, you might want to check if you suffer from exocrine pancreatic insufficiency http://en.wikipedia.org/wiki/Exocrine_pancreatic_insufficiency. Even though it does not really match your initial list of symptons its symptons are almost the same to those of celiac.

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  9. Try this for gluten sensitivity testing. Dr Kenneth Fine's lab. It's worth it.

    https://www.enterolab.com/

    "More sensitive than blood and saliva tests, or biopsies"

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  10. I'll reinforce what Anonymous said above about "Normal" not being the same as "no damage".

    My wife had enough cilia damage that it was "surprising" to the doctor, but not enough damage to be diagnosed Celiac. So he reported that she was "Normal" despite having intestinal damage. We have never gotten a good understanding of how much damage is "normal" and how much is "bad" or what would cause the damage in the first place.

    We've been both living gluten-free at home for the past 2 years and her health has greatly improved. I'd get the original report and try to do some rough interpretation yourself.

    Another thing to look at is comparing your overall diet when gluten-free to your previous diet. I think something people don't take into account, sensitivity aside, is that making your own food regularly can lead to a healthier diet overall.

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  11. A real-life story on how weight loss helps to fit into your favorite sexy bikini can be accessed right at our weight loss blog.

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  12. You should know that if you stop eating Gluten for a length of time before the exam, theres a chance you could get a false negative. This is because the test is looking for your body's reaction to the Gluten, and if you haven't been eating it, it can't detect that reaction.

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  13. Have you tried 23andme genetic profile?

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  14. Just my two cents - any chance you have poor blood circulation? It could explain the inability to concentrate. See http://ezinearticles.com/?Understanding-The-Symptoms-Of-Poor-Blood-Circulation&id=899717

    I have this problem, and taking cayenne pepper is very helpful in my case. See this for more info: http://www.cayennepepper.info

    Hope this helps.

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  15. This book made me think of you. No idea if this book will help you or not because I have not read it.

    http://www.amazon.com/exec/obidos/ASIN/1590180399/

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  16. yes dearm be a little patient. time will come everything will be put into place with the grace of God.

    ReplyDelete