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tom last won the day on October 13 2019

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  1. Hi smpalesh, I'm wondering which types of Amy's you're eating. I suppose it's been awhile since I've seen posts about Amy's frozen foods being problematic for the posters but I also haven't been reading as much here lately. For years it just kept coming up. Never saw much about their other lines. Does anyone know if they changed? Any long-timer REtry an Amy's frozen years after thinking they were a potential cc source? I've been tempted, but I don't think I even got as far as checking the ingred list for everything else I don't eat. -_-

  2. Hi Kocoyboy,

    Hope you can feel better soon, it's tough when not seeing improvements.

    Honestly, a week & a half is often not long enough to get settled into knowing what to avoid & to answer "where/what CAN I eat?"

    Is there gluten-free food at school? If you're eating much processed food, would you be able to simplify your diet? For as easy as it can be, that can help a lot.

    You may need to be dairy-free for a while. The Dr, imho, should've mentioned that.

  3. If it didn't cause an intolerable or even highly significant rise in symptoms, I suppose that's what I'd do, but I usually shy away from giving specific recommendations. I've seen occasional but rare posts of ppl affected longer term, after the challenge, who might regret doing it, but don't recall specifics of their early challenge symptoms.

    Celiac testing is unfortunately still a bit of a crapshoot, but hopefully the forum has enough info for ppl in your position to make an informed decision & not only working off a Dr's (I don't mean yours specifically) outdated or misinformed info.

  4. ...

    Any advice?

    I have been gluten free for two weeks, if I stay gluten free I will be gluten free for 5 weeks before the biopsy. If I start eating gluten again I will eat gluten for 3 weeks, after a two week gluten free period.

    Hi Mirjam, if you do restart on the gluten, remember it doesn't take a lot.

    I've been seeing studies on it for a while & here's a new one mentioned today in the forum's Publications Section.


    "Even a small amount of the protein can stir up trouble. A University of Maryland study ( http://www.ncbi.nlm.nih.gov/pubmed/17209192 ) showed that just 50 milligrams (mg) of gluten

  5. ...

    Don't know how normal this experience is?? I feel like this gluten challenge should be more unpleasant.

    I think it's safe to say it'd be more unpleasant if you were re-introducing gluten after feeling increasingly healthier during weeks or months 100% gluten-free. (Slight assumption in there on it being celiac)

    You did say you never really went gluten-free, right? That'd be why it's not particularly unpleasant.

  6. I think, if I were new to this forum, I would trust a Celiac research facility over the word of some guy posting on an internet forum. Also, a doctor is more likely to read info from a medical center than posts on an internet forum. Univ of Chicago has a lot of info on thier site and it is easy to read. That is why I often post links to it.

    Well that's a bit off-topic & curiously defensive.

    Someone posted that "often ppl say 2 slices/day" & I add the single cracker quote from your fav site & that's a bad thing?

    (Sarah had asked whether we'd "recommend amping up the ingestion of gluten before the test" after having explained that she's never been gluten-free - it's not a "re-introducing gluten" situation - it's a "don't stop eating gluten yet" situation.)

  7. Yeah, I thought it'd be easy to check glutenfreedrugs.com too.

    Apparently Greenstone was one of 3 mfgs when it started going generic in 2006.

    A thread here from '06-'11 at least doesn't have anyone saying they reacted, tho it looks like Lupin wasn't in the game yet.

    I see Lupin mentioned as mfg of OTHER generics, but wow this really sucks for this to be difficult at all!

    Wish I could help.

  8. ...

    The rest of the month Im fine. My theory is that perhaps Im just gluten intolerant, and my threshold is a month - so it builds up over this time period until it explodes.


    And the main worst part of it is 10 hrs or less? (7am-5pm)

    I think it'd be unlikely for a straight gluten issue to then be ok for another month.

    The first thing that came to mind for me, just from the title, was that the regularity is a Lyme symptom.

    More than a few members here turned out to have Lyme & not Celiac.

    I don't mean to scare you w/ a whole new thing - some of them do better than some celiacs - but thought it had be mentioned. It used to be discussed in this forum pretty regularly.

    That said, I don't remember the lymies having the regular "flare-ups" last as short as half a day. I'd guess usually 2 or 3 days or more. Some were monthly, but also some 3 or 5 or whatever weeks.

    Looking into some on the threadlink above should be informative. I think you could, once in that thread, use a searchbox w/ a symptom or 2 for just that thread, since it's probably a little long to read all at once.

    (Arrgh I'm on a ph & can't quite check w/ certainty, but if the "search in this thread only" isn't there anymore, using the main search of full forum while adding "lyme" should get to the same posts)

  9. ...

    ...human error rate for blood test is 30%, so don't fully believe the 99% accurate statistic


    Human error rate?? :huh:

    I'm not sure what this is supposed to mean & can't think of any way it makes sense. Is it saying that lab techs are inept, spilling/contaminating samples or losing vials?

    I just keep saying "human error rate" in my head, thinking maybe some way to interpret it will percolate forward.

    30% is literally an unbelievable number & I'm extremely curious about the details & where it came from, if you don't mind.

  10. ...I know a lot of people experience leaky gut and other allergies popping up, but I'm just wondering if it sounds like I could have one of these problems or are my symptoms too mild and I should just wait to see if it goes away before cutting anything else out of my diet?


    I don't think your symptoms are too mild for leaky gut problems.

    They don't have to be extreme.

    Having to figure all this out can be pretty aggravating. I remember wishing I didn't have to eat at all.

    A food/symptom diary can help pinpoint what's safest, what's most iffy, etc.

    A simpler diet is easier to track correlations of course. It only helps a little when it's "one of these 14 ingred is a likely culprit".

    Do you happen to have your blood test results? The Full Celiac Panel is 5 or 6 tests, but we often see ppl here whose Drs ran fewer.

    Not sure what else to say. Hope you can figure it out asap tho, leo.

    Reading others' posts in the Other Intolerances section may give you more ideas.

  11. ...

    I guess the best "test" of all, though, is when I went 4 days gluten free last week (after my labs). The shortness of breath and heart palpitations did NOT occur. My chronic nasal congestion and post-nasal drip cleared up. I THINK I felt more awake (at least a little). My birthday party was on Sunday so I went ahead and ate "normal" - after a breakfast of cereal with gluten I had a BAD attack of the shortness of breath and heart palps... There is a definite correlation between what I eat and at least these 2 symptoms.


    Hi Jacki,

    Sounds like a nicer-than-usual 4 days. Are you eating gluten today?

    As far as whether the issue is gluten or maybe just wheat, I think that'd be something to look into AFTER a longer-term period of relief from at least the two symptoms affected in those 4 days.

    Since ~30% of everybody has celiac genes, the info doesn't have much value imho unless looking for offspring's or other relatives' susceptibility.

    Usually people in your position would look to an endoscopy next, looking for clues in the esophagus, stomach & small intestine & taking biopsies to examine for celiac. But I don't think a typical Naturopath has access to that. Any chance the ND can send you to a GI MD for that?

    I'm a little disappointed that the ND would lean so much more to wheat than to gluten. I hope that's uncommon these days.

    Celiac is often called The Great Imitator diagnostically. Your CFS, MCS, inflammation, insufficiencies etc etc (feel so bad for you dealing w/ SO much) could all be attributed to celiac.

    If you're unable to get an endoscopy, I'd have to say why not try a strictly 100% gluten-free diet starting NOW? ;)

    Hope you can get on a good path to health asap, Jacki.

  12. ..

    He recommended an endoscopy but then said that if it confirms pernicious anemia he would not do anything different. I am not a fan of invasive medical procedures so I declined.


    While it's natural to be apprehensive about an endoscopy, it's really REALLY no big deal.

    Personally I save the phrase "invasive medical procedure" for those where the patient is cut open & something's going on inside. I had a double-hernia surgery years ago & I learned there is truly something different w/ being opened up. There's a healing period from that that doesn't exist at all from an endoscopy - that's just taking a peek along the same path food goes every day.

    Time after time, people who're worried about the endoscopy come back & say it was a breeze.

    Seriously, it shouldn't be called invasive imho, & any apprehension shouldn't get in the way of using it to find a path to being well again.

  13. Hi kbh75,

    Agreeing w/ the 2 above, I think you should prepare to insist on the full celiac panel at Friday's appt.

    I've missed getting what I wanted out of appts while forgetful & irritable more than once. Then I brought lists & went over how to say it & how to get conv back to what mattered to me, not to him.

    The combination of tests is pretty darn accurate, but they're not perfect. With your list of known celiac symptoms, it sure seems like a good next step.

    He's already looking to sched an endo, so at least you wouldn't have to talk him into that.

    Good luck Friday - I wonder how quickly an endoscopy can get scheduled. gluten-free might really be the answer, but get that endo 1st.

  14. ...

    If you don't get the full Celiac panel, you haven't been tested for Celiac Disease.

    I agree completely. I don't get how it's possible the oft-quoted U of Chicago skips over half of what we call a full panel.


    You should have both tTG-IgA and total serum IgA tests to screen for celiac disease....

    ... Other gliadin antibody tests are not useful in screening for celiac disease."

  15. http://www.curecelia...-celiac-disease


    "...Other gliadin antibody tests are not useful in screening for celiac disease."


    Wait, what??

    So all the posts here specifying FULL Celiac Panel would all be wrong per UofChi?

    No IgG, AGA, DGP??? :huh: what's going ON over there?

    Did I read all that wrong? Maybe it explains still doing 12wk challenges? (I hope THAT'S wrong - that'd be ridiculous)