Celiac.com Sponsor (A1):

Join eNewsletter

Celiac.com Sponsor (A1-m):

Join eNewsletter


Advanced Members
  • Content Count

  • Joined

  • Last visited

  • Days Won


jddh last won the day on January 28 2019

jddh had the most liked content!

About jddh

  • Rank
    Star Contributor

Profile Information

  • Gender
  • Interests
    Technology, sailing, guitar, music of all shades, cycling & feeling well
  • Location
    Vancouver BC

Recent Profile Visitors

4,953 profile views

  1. It's also possible that prior "active" celiac disease can trigger other functional digestive disorders, even after transitioning to a strict gluten-free diet. I'm also in the camp of persistent symptoms despite a strict diet, and a top celiac doctor at the Mayo assured me of this.


    That said, as others have said above, serology testing can give you vital clues as to what's going on. Functional disorders tend to be the likely diagnosis only after diet contamination and other disorders have been ruled out.


    Are you able to decipher Japanese ingredient labels? That's essential to making sure your kitchen inventory is safe.

  2. Thanks for the info squirmingitch, that's fascinating. I certainly agree prima facie that home-kit tests can't be 100% relied upon, and the arguments by that RD are compelling. Just about everything I test is SUPPOSED to be gluten-free, so I'm hoping that the outset likelihood and agreement with a test strip is fairly good evidence.

    That said, I should stress that the above list of course only shows MY results for those specific batches of foods that I tested with one kind of kit. Caveat emptor.

    Do you find the gluten-free watchdog to be a worthwhile service?

  3. Well I wouldn't trust my old diet either, but believe you me, I'm careful now. I started ordering these test kits through a recommend by a food scientist when I was ruling out refractory and looking for hidden gluten. I don't know of anything better than this test; my father challenged it at the 5ppm setting with a tiny pinch of breadcrumbs added to a mash of otherwise gluten-free food; the test showed bright red, a positive.


    I don't have any of that mayonnaise in the fridge at the moment, nor could I find a website for them. They're a local BC company. But here's a random youtube link discussing the very product: 

  4. I'm from Canada too, Keven. I know how hard hospital waits and busy doctors can be to deal with. The good news is that it's free; the bad news is that nobody has a lot of time for you! And they tend to give folks a hard time about weight loss without a lot of good solutions.


    Adding to everyone's voices: it takes time to heal. The first little while is hard. It gets easier. Remember that your GI tract is healing by staying gluten-free, this is GOOD! But it takes some time for the symptoms to go away.


    Be careful about processed foods—it's easy to miss products that have gluten in them. For example, soy sauce and worcestershire sauce are no good, to name just two. Read labels carefully and look around this forum for advice.


    It's easy to develop health anxiety when you get all this stuff thrown at you. That can make you feel like things are out of control, you're going to die, etc. It's a real condition, and it's not your fault. You're not alone! Anxiety can also be a symptom of celiac disease before your system heals up. You might want to consult your provincial psychiatric services and find someone to talk to if worrying about your health is taking up a lot of time. Professionals can really help with that. There's lots and lots of old people with both celiac disease and diabetes who are enjoying retirement and ripe old age! You're going to be one of them. Stay gluten-free, keep your chin up and look forward to feeling better soon.


    Finally, as much as it sucks to deal with hospitals, get a follow-up visit within a year to check on how you're doing, apart from your symptoms. It's important to confirm that you're eating completely gluten-free and things are looking good inside ;)

  5. While dealing with some stubborn symptoms that have persisted despite a “gluten-zero” diet (I’ve discovered I used to make some mistakes here and there without obvious reactions), I’ve bought a whole bunch of GlutenTox test strips to be absolutely sure some suspect foods are safe.

    These test kits are widely approved for used in the food industry, and they can detect gluten down to 5ppm—pretty accurate! They are the surest way I know to guarantee a product is free of gluten contamination.
    They cost a bundle and I hope to not have to use them for long. However, since I’m using them mostly on commercial products, I thought I would keep a thread of products that I’ve tested for your information.
    You’ll see that most of these are confirmed safe, but I for one appreciated the 100% confirmation. Many of the products may be localized to BC, Canada. I hope you will benefit from it.
    [EDIT—discussion about the validity of these tests in the thread below]
    FALSE means a negative test—no gluten detected.
    Udi’s Breads—various kinds
    Jamieson vitamins D, A & E
    Cotazym brand “MKF” (Canada)
    Domperidone brand “SNS” (Canada)
    Mirtazapine brand “SDZ” (Canada)
    Taste Adventure curry lentil soup mix
    Amy’s Organic Refried Beans
    HOWEVER they note their facility also processes wheat…
    Zatoun Za’atar (Palestinian spice)
    Extra Strength Tylenol
    London Drugs acetaminophen 500mg
    European Foods Polish-Style mayonnaise
    Better Than Bouillon—Beef, Chicken, Vegetable
    Shwartz’s Montreal Smoked Meat
    Preferisco Organic Balsamic Vinegar
    EverFit L-Glutamine supplement
    Cineplex movie popcorn with butter topping

  6. Well they weren't helping ;)


    I had been eating those noodles and several contaminated foods regularly BEFORE my nauseous period started. Once that began, I really limited my diet, and since then, I've become much more conscious about the need for a 100% gluten-free regimen.


    I was a somewhat cavalier "symptoms = gluten" guy before my troubles began. In retrospect, my sticky symptoms were probably triggered by years of diet neglect, plus one or two proper glutenings last summer.

  7. These venerated rice noodles are often boiled in soup or stir-fried in many Malaysian, Chinese and Thai dishes. I managed to cause myself "silent" damage by eating these for years in restaurants, and buying the first ones I saw in grocery stores. They are made fresh, and upon recent close inspection, they contain wheat :(


    Anyone know of a brand of gluten-free kuay teow noodles?



  8. SIBO is a disease, but can also be symptomatic of/caused by other issues, including celiac disease. A difficulty of separating the two pathologically is that SIBO often presents with the same changes in the small intestine (inflammation, villous atrophy). So if the endoscopy results report inflammation and villous atrophy, this could be indicative of SIBO, celiac disease, or indeed both.


    On the other hand, most people with celiac disease have clear blood indicators (TTG, EMA) that ought to be abnormal after a gluten challenge. 


    Conversely, there is some disagreement as to which breath tests can be considered reliable for SIBO. Do you know what catalyst they used (lactulose, lactose, glychocolic acid)?


    IMO, I would be inclined to have all the tests done so you have the most information to work with. Your description certainly sounds like your daughter has a reaction to gluten, SIBO or not. One empirical way to proceed after her tests would be to put her back on a gluten free diet, but hold off on the antibiotics, to see how she responds. If her symptoms continue despite the diet, perhaps she needs to be treated for SIBO too. People are most often tested for SIBO in the context of celiac disease if they don't first respond to a gluten-free diet.


    The difficulty of treating celiac disease (gluten-free diet) and SIBO (antibiotics) simultaneously is that if things get better, you don't know what was successfully treated. Regardless, if your daughter's symptoms resolve on either treatment, it's important to arrange a follow-up workup (bloodwork, endoscopy) to make sure her intestines are healing. This is usually done 6-12 months later.


    Your doctor probably knows best, but lots of people on this forum have benefitted from pushing for getting all the tests possible done.

  9. If your biopsy comes back fine—congratulations, you’re not suffering the inflammation and villous atrophy that most of us have had to deal with!

    However if the “optics” of your endoscopy suggested celiac disease, your biopsies will likely confirm this. IF you’ve stuck to a gluten-inclusive diet (have you?)
    If you have some optical change in your gut, but a clean biopsy, there are a variety of other conditions that may cause some inflammation or visual difference in the proximal gut, all of which are treatable & manageable. Your doctor should have next diagnostic steps for you if that is the case. There are also a number of “functional” disorders, which mean that though you’re experiencing frustrating symptoms, there’s no damage in your gut. Again, these are treatable.
    Glad to hear the procedures were no big deal. I’m sure Joan Rivers was having a more complex procedure—and was also eighty-plus! We live in a good time, inasmuch as the sedative drugs used for these procedures are safe and very effective. I’ve had two endos in two months, and likely another one this year; I’ve learned to shrug them off. Last time I got mad at my GI for not sedating me enough!!

  10. You’ll read this often in this forum, but it’s worth keeping in mind that the “gold standard” for diagnosing celiac disease is with an endoscopy/biopsy. A positive blood test without a biopsy doesn’t always mean 100% guaranteed celiac disease (though if your TTG numbers are especially high, it’s quite likely).

    If the months go by and you’re still not feeling better, you might want to keep this in mind, in case celiac disease isn’t in fact your problem. HOWEVER: you need to go back to eating gluten for several weeks prior to the endoscopy. They need to see what you look like with gluten in your diet. I know that’s a dreadful thought to resume eating gluten, but there are huge benefits from getting a confirmed diagnosis. Getting biopsied now also gives you a “baseline” for later, ie. they’ll see current damage from eating gluten, and 12 months later, after sticking to a gluten-free diet, they can look again and confirm that you’re healing. This is really important for recovery and avoiding complications later.
    My primary symptom is nausea too, and I’ve been dealing with that for months and months after discovering my diet wasn’t as 100% gluten free as I thought. So I can certainly empathize. Feeling sick all the time is the pits. I have a different thread going for nausea relief if you’re interested.

  11. May I ask what side-effects you encountered with Budesonide? I found it quite tolerable while on it, but noticed some withdrawal effects. (Isn't Uceris the same thing?) I hear tell of folks that stay on Budesonide indefinitely if they need it, but of course that is highly respective to the individual.


    Sounds like you need consistent long-term therapy for your colitis. Yes, you deserve better care. If you can manage the time and expense, check local ratings and find a GI specialist who will work with you for sustainable results, and perform adequate celiac follow-up. Celiacs NEED that.  I know this isn't news to anyone in America, but I flew from BC, Canada to get to the Mayo and it was 100% worth it.

  12. How were you diagnosed? How long were you feeling symptoms prior?


    Besides a primarily whole foods diet, you might consider looking for packaged items (ie. rice) that explicitly state "gluten-free" on the package. It's likely overkill in the long-run, but in theory anything that isn't in itself a whole, unprocessed food may be subject to gluten cross-contamination. Grains such as rice are especially a candidate for that.


    Depending on the state of your gut prior to going gluten-free, you may find that it will take some time to consistently feel better. Most folks take longer than 2 months, which I believe is where you're at now. For most people, symptoms like yours are a consequence of inflammation (as opposed to being indicative, necessarily, that you are being damaged directly by what you're eating). So while a whole-foods diet may ultimately be the right thing for you, some things that are more difficult to digest (raw vegetables, some grains) may irritate your gut for a while as you continue to heal. You might consider researching easy-to-digest foods (that are gluten-free), and try those for a while as you give your gut time to heal.


    Hang in there! It can be frustrating to not find immediate relief. Keep in mind that your body might not give you the best response about what diet works for you in the long term until your gut is healed. 

  13. As other folks have said, you won't be "put to sleep" in the sense of general anesthetic. Just a nicely sedating IV—you'll be sleepy and free of the anxiety you're currently feeling. The prep is annoying, but I would suggest that the worst part is the worry you're experiencing. Try to relax and know that we've all done it—some many times—and we're all here and happier for it! Getting tested is important. Try a relaxation exercise and when you worry about the upcoming procedure, remember that it's no big deal and it's a big step towards feeling better.

  14. I'm still dealing with this and I wanted to note some successes:


    1. Domperidone. Similar mechanism to reglan/metoclopramide. Not available in the US, but it is in Canada. I found it to be helpful, though not a perfect cure.


    2. Cannabinoids: I live in an area where medical cannabis dispensaries are easy to come by, and I can confirm some definite symptom relief using very small amounts of cannabis. I got a high-potency tincture, which is suitable for administering tiny doses throughout the day as needed. I am able to use this during work, etc, which is to say if done right, you can get symptom relief without getting stoned.

  15. In agreement (and support!) of @crazymurdock — not only is Dr. Murray one of the leading experts and clinicians of celiac disease, he is thorough, conscientious and generally a wonderful guy. I needed special consultation for a runaway diagnosis from a GI with relatively little experience in complicated celiac disease, and the expenses and sacrifices paid/made to get the Mayo were unquestionably worth it.

  16. Hi friends,

    After dealing with a roundabout diagnostic path that led me toward, and back away from, refractory celiac disease, I am left with persistent nausea that is suggested to be likely a motility disorder that was probably triggered by my (general) celiac disease.
    Has anyone here been treated successfully for motility problems? My symptoms are primarily nausea about 3 hours after eating, around when my stomach empties.
    I’ve tried Zofran and mirtazapine for nausea; neither helped particularly. I was given domperidone to try for a month—I think this brought on the nausea quicker and made it go away quicker too (makes sense; increased motility/transit from stomach). I ran out of it recently and thought I’d test myself going without it. I reckon I felt a little better with the domperidone, though not problem solved. Perhaps suffering some rebound from stopping the domperidone.
    I’ve been told to stay away from Reglan/metoclopramide—nasty side effects.
    Any thoughts or shared experiences would be much appreciated.

  17. Oh I get it now—these are your partner's results, already diagnosed and on gluten-free diet.


    If they saw blunted villi earlier, than preserved villous architecture is good news—they are back to normal!


    I have just received similar results; they usually call this "disease in histologic remission"; ie. your partner is healing.


    But your GI will know best ;)

  18. Increased ILs indicate inflammation in the gut. In the context of celiac disease, your results sound like "light" damage, or perhaps healing tissue from prior damage.


    Do you consume gluten in your diet?


    As @cyclinglady says, it's important to look at blood markers to see if you've been having an autoimmune reaction to gluten.


    However, increased ILs and VA can also be caused by other things. It's important that you follow up with your gastroenterologist to perform other tests to rule out other diseases and investigate whether you have celiac disease.

  19. Is the abdominal pain the same symptoms as you had before being diagnosed celiac, ie. are these "glutening" symptoms for you?


    Do you think you're losing weight because you've had to limit your diet, or because of some other reason?


    Standard differential approach among general physicians tends to be:


    1. Check for ulcer (test H. Pylori, prescribe PPIs)

    2. Check for organ-related issues (ultrasound)

    3. Check blood and stool for abnormal values and parasites


    General physicians tend to not know too much about gut stuff, so I would consider specialist referral to be a good thing. Have you been sent to a gastroenterologist? 


    Stomach ulcers tend to be strongly suspected with abdominal pain, so that's a good one to rule out. Someone will probably put you on a course of PPIs to see if they help.


    Keep eating those safe foods and get the tests done!

  20. What I mean is I tested a combination of my diet foods in order to find ANY gluten among them, to begin with. I didn't suspect anything, so I started there. If the mash tested positive, I would have started testing individual foods.


    Afterwards, I had a friend create a similar mash including a bit of straight-up bread, and ran the test. It caught the gluten in that context.


    Those sticks are expensive... :)

  21. Thanks for the info Colleen. I have essentially been on this diet for 2.5 weeks—eating almost nothing but my Jewish dad's chicken soup, which coincides nicely with this thread.


    Plus as mentioned in the other thread, I ran my entire diet though GlutenTox strips, so assuming their effectivity, I am officially contaminant-free.


    So for my part, probably need to break down further and trial even the ingredients that I know are gluten-free.


    @Waitingindreams: refractory means you having DEFINITELY been gluten free for >6 months, and a biopsy showing continued damage. So you'd need an endoscopy to show that. In the mean time, suffering some set of symptoms despite a gluten-free diet might put you in the camp of NRCD, but hopefully the symptoms don't necessarily mean continued histological damage (flattened villi).


    NRCD is a nicer place to sit :)