Tuesday, June 8, 2010

Hmm, maybe Celiac?

Time for an update. Based on the many suggestions I received over at HN, I asked my doctor to test me for Celiac Disease. I just got the results back, which I have uploaded here:
Seems like a big "maybe", as only the Transglutaminase AB IgA came back abnormal at 20, which is considered a "weak positive" for Celiac Disease. Based on this result my doc is referring me to a Gastroenterologist, with whom I have an appointment on Monday.

In the mean time, I got all excited about the possibility of Celiac and decided to try the gluten-free diet, just to see what would happen. This was perhaps a bad idea, as it means that if the gastro wants to do a biopsy, I might need to start eating wheat again before the test. But I couldn't help myself- if this has the potential to make me feel better, I wanted to find out right away. We'll see what the doc says.

So this is day 5 of me avoiding gluten. I did not notice any difference until the 4th day, when I observed a fairly noticeable improvement in fatigue and digestion. Fatigue is hard to quantify, but having 1 bowel movement per day vs 3-5 is a pretty big change. Not an earth-shaking improvement, but definitely a positive trend. Hopefully this will continue.

I have also posted scans of more test results, as a few people were interested in seeing them.

Thanks, and stay tuned.

15 comments:

  1. Best of luck.

    Also, I'm not affiliated with the following site, but you may wish to take a look at:

    www.markdsdailyapple.com

    It goes against much of what conventional wisdom will tell you, but there are definite benefits to eating "primal" as you yourself have just experienced in the past 5 days.

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  2. If you go gluten free and your symptoms disappear, do you really care if your intestinal biopsy says you have celiac disease or not? I used to be very, very sick and the gastroenterologists couldn't figure out what was wrong with me for 6 months. I saw a nutritionist to get some relief, she said celiac, I went gluten-free and never looked back. Being healthy is so great, I don't care if I have the official diagnosis or not. I know gluten makes me extremely sick, and that's enough for me.

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  3. Sorry about that broken link.

    www.marksdailyapple.com

    (also, you can do a search on there for "CELIAC" as you aren't alone suffering from this)

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  4. Check out http://www.aryavaidyasala.com/ . This is an alternative medicine from South India using herbs/diets etc. I have heard that this worked for some ppl who got better while modern medicine failed to cure their ailment.

    Aryavaidyasala at Kottakkal, Kerala is reputed.

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  5. I had the same symptoms as you and was mostly clear on all my tests. (turns out i have slightly high blood pressure) it was a combination of anxiety and poor diet. My guess is if you remove sources of stress from your life, and improve your diet, your symptoms will go away. (mine did)

    You don't reveal much about your personal or professional life. Are you employed? Is your job stressful? Are you stuck in a career you don't like? Is your boss a dick? What is your working environment like? Do you have any friends or family? Do you have a good relationship with your family? Do you have a significant other? Do you ever have sex? (serious) Is your significant other a source of happiness or stress? Do you drink alcohol? How much? What about caffeine? How about sugar? Has anything really bad happened to you in the past 5 years? Have you moved or started a new job? etc, etc...

    The thing is that you can have none of the symptoms you described even if you have celiac. And you can have no psychological symptoms even if you have something much worse. You can also have all the symptoms you mention even if nothing is physically wrong with you. Even if you discover some mystery disease, chances are you will have to work out the psych issues anyway. So you might as well work them out, and maybe everything else will clear up.

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  6. My GF has gone gluten free (hasn't been tested for celiac, but it it is a strong possibility). So I've taken it on myself to start being creative with the cooking. We started doing quiet a bit of rice-based dishes, then switch it up with potato-based periodically. One thing to keep in mind, is that most gluten-free foods are also organic, so your body ends up going through a major detox phase where you will feel up & down for about a couple weeks.

    There's a lot of recipes out there -- just search for "gluten free xyz", where xyz is a particular dish you want (such as chicken fried rice, gumbo, etc). Also some restaurants are better than others -- Outback steakhouse for example has an entire gluten free menu. Others will have gluten free items, but you have to ask them to take care when preparing the food to avoid cross contamination (not everyone with celiac has to worry about cross contamination issues -- for example, my GF can eat a McDonalds hamburger by throwing away the bun, whereas others will have a major reaction from the bread touching the meat).

    Good luck.

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  7. You've seen that episode of House, haven't you?

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  8. FYI, I'm not a doctor, so don't take this as medical advice. I'm just describing my personal experience.

    I got tested for Celiac a few weeks ago (my mother has it, and that gives me about a 5-15% change of having it as well). Fortunately I came back negative.

    There are two tests. A blood test, which can come back as negative even if you have the disease. The second test they sedate you and put a tube down your throat into your lower intestines. They look around and check your small intestines for some sort of damage. This test should give you a definitive answer if you have Celiac or not.

    You have little cilia hairs in your small intestine, and they become blunted by Celiac Disease. Basically, when you ingest gluten, it enters your small intestine, and your immune system starts attacking it. This causes those hairs to become blunted. Guess what those hairs do? They absorb nutrients. Over time you can start becoming deprived of various vitamins, which can lead to zillions of different problems. A real doctor would be able to tell you a lot more, but that's the gist of it.

    Symptoms can be all over the place, and some may not have any obvious symptoms at all. If you look on WebMD, you'll find a long list of them. They differ from person to person. My mother, who had this for years before being diagnosed, would become gassy and had to pass stool several times per night. Her stomach would be upset and everything. I believe her stool was loose as well.

    The Gastroenterologist I saw to get tested (I was having loose stool issues) told me that as the hairs in your intestine become blunted, it speeds up the rate which stool passes through your digestive system, causing loose stool. Many other things can cause loose stool as well, of course.

    If you have symptoms like this, you "might" have Celiac. Even if you don't have these exact symptoms, definitely still see the Gastroenterologist. Because as I read elsewhere, people with the disease can have totally different symptoms than other people.

    FYI, I went gluten free for a week before seeing my Gastroenterologist just to see what would happen. After, I had to start eating gluten again and wait 4 weeks before getting the blood test for it (it's an anti-body test I believe). He was worried it might mess up the test. I'm not sure if that has any effect on the small intestine check, since they actually look for physical damage with that.

    Your intestines will heal if you have Celiac and go gluten free. I've heard it takes 3-9 months, approx.

    Also, if you continue eating gluten free, you'll want to see a Nutritionist to setup a proper diet for you, assuming you're diagnosed with Celiac. Wait for the Gastroenterologist's results first before doing anything like that, of course.

    Whole Foods has a good Gluten Free section in the freezer. To go gluten free you need to avoid beer, ale, anything with wheat, oatmeal (the verdict is out on this one - some say avoid it, some say it's OK to eat). Some non-wheat foods are processed on machinery which also processes wheat (some Goya beans, for example). Most gluten free breads are rice-based. It's an extremely hard diet to follow if you like to eat out a lot, particularly fast-food restaurants.

    Best of luck and do whatever your Gastroenterologist tells you to do! :)

    P.S. I remember you saying something about lime disease in a previous post. Those tests can come back negative even though you have it. If this Celiac thing doesn't give you an answer, perhaps find a specialist who deals with lime disease? Not your PCP, but a specialist.

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  9. Hi there,

    I've seen people saying similar things, but I just wanted to add my experience in case it's helpful to you. I started having similar symptoms when I was 18, but yours are much more intense than I ever reached.

    I was diagnosed with "fibromyalgia" (whatever that means), and saw a Rheumatologist . She put me on Zoloft. I didn't feel like that was helping much, so I started seeing a chiropractor/dietician. She put me on a gluten-free, dairy-free diet with many supplements. I definitely noticed a decrease in pain and numbness. Eventually I stopped the supplements, and I hated being on the anti-depressants. After a couple of years, I saw a Chinese Medicine doctor, and through acupuncture, message, cupping, and herbal medicine, she got me off the anti-depressants and considerably helped my fatigue issues.

    Now I maintain a (mostly) gluten-free and dairy-free diet, see a Chinese Medicine doctor for acupuncture, and practice meditation and yoga. I don't have to worry about pain anymore, and my fatigue is pretty manageable. In retrospect, I think that it was managing my mental health that allowed the breakthrough for dealing with my physical symptoms. I had definitely fallen into a clinical depression, and it manifested into physical symptoms which made the depression worse which made the pain worse... it was a cycle. I'd definitely look into Chinese Medicine for dealing with mental health and pain.

    I'm adding you to my RSS reader so I can see how things go. Best of luck!!

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  10. If you have Celiac Disease it is best to get it corrected, as it can kill you. However, just so you know, a friend of mine discovered he had Celiac Disease and it was great at first, but now his life is an emotional roller coster. He is in his 50s, and perhaps if he had caught this earlier he would be better off. I do not know how old you are, but I just wanted to give you a heads-up that you might have some tough times ahead. But whatever you do, be strong and keep a positive attitude! Oh, and you will probably lose a ton of weight.

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  11. Two more sites with a wealth of Gluten-free information:

    http://heal-balance-live.blogspot.com/

    http://glutenfreeheaven.blogspot.com/

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  12. Keep in mind that even if you come up negative for Celiac disease, it may also be a wheat allergy. My wife is allergic to wheat, but if she tested for Celiac, it comes up negative. A wheat allergy would be diagnosed by your allergist.

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  13. I was feeling very sick. I experimented with not eating gluten and felt sort of better. After reading on the celiac.com forums, I was tested for celiac but the tests were low/negative. However, I eventually learned that parasites like giardia can cause one to not be able to digest gluten.

    I took a lot of antibiotics to kill the parasites. I think this worked, and did kill them. However, the doctors neglected to mention that the antibiotics would kill good flora as well and I continued to feel sick. Eventually, an Eastern medicine practitioner told me and gave me Chinese herbs as well as Bio-K and Megaflora probiotics. I also had a whole bowel irrigation - http://en.wikipedia.org/wiki/Colonoscopy#Preparation

    This helped me. I can now eat gluten again.
    Again,
    - antibiotics to kill parasites
    - CoLyte / bowel flush
    - Chinese herbs, Imperial tonic, accupuncture
    - Probiotics: Bio-K, Megaflora

    Hope you get better!

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