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basilicious

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  1. One question on the topic of zonulin: it seems like I could have a blood test to check my levels, and if it's celiac, it seems like my levels would be conspicuously high. If it isn't celiac, my levels would be much, much lower even if slightly elevated. Do you know if anyone is using this type of testing to infer celiac? If my endo comes back negative, then I think my plan will be to:

    1- test total iGa to determine if I have a deficiency

    2- ask for a zonulin levels check

    3- get the genetic test and

    4- do the enterolab stool test.

    Between all of them, I feel like I could reach a definitive conclusion as to whether this is celiac or gluten sensitivity.

    Any thoughts on this plan?


  2. Wow, thank you so much ciamarie and rosetapper23! It looks like I have a lot more research to do. I will read the article associated with the link you posted, ciamarie, and it sounds like a great paper to forward to my endo (at least it will test whether she is aware of zonulin).

    What's interesting to me is that right before I got sick, my husband and I had a malfunction in our water filter. Basically it got damaged and for about two weeks it experienced a buildup without our realizing it. I've since wondered if that could have caused any heavy metal toxin (or bacteria) buildup, but since I made the gluten connection, I dismissed that idea. Having skimmed through the link you provided, it looks like that could have been a trigger in all this...

    Also, clearly I still need to thoroughly read the materials you linked to, but I saw the mention of zinc and can't help but think back to another odd occurrence recently; I've been taking sublingual B12, Omega-3, Omega-6 (GLA), Vitamin D and Zinc, but I forgot to take the Zinc a few days in a row. When I remembered to take it again, I took two instead of one (to make up for lost doses)...but within about thirty minutes I was extremely nauseated to the point that I had to lie down. Nothing else in my regimen was different that day (I had food in my stomach), and I have kept thinking that there was more to that situation than I could know.

    It seems like there are other issues that should be diagnosed as part of the biopsy evaluation; do you know if endos will automatically test for a range of GI illnesses, or do you think I need to request that my doctor have the lab review for several issues? I'm not interested in repeating this procedure!


  3. Yea the total IGA is not there. You may want to ask to have it done. If someone is IGA deficient then doctors go off of the IgG and yours was positive even being gluten light. Would have to wonder how high it was when you were eating a full gluten diet.

    I really appreciate it, ravenwoodglass. I will call my doctor today, and this is something I can schedule before my biopsy. Assuming my total IgA is normal, do you think my existing low IgA results would be due to the low gluten intake? Do you have any idea how long it takes for IgA levels to fall after gluten consumption falls?

    I'd also be very interested in hearing your thoughts on my current plan of action...since I'd like a definitive answer, I'm leaning toward the biopsy, but I'm not going to go full-force with eating the recommended amount of gluten. If the biopsy is negative, I'll do the stool test and the gene test. The stool test should still be positive despite my dietary changes, right?

    Do you have any thoughts on what else could drive the non-celiac leaky gut described in the article rosetapper shared? I had previously researched leaky gut syndrome, and since it's not recognized by Western medicine (no surprise there), there is less information about it. It sounds like I would just supplement appropriately, drink very little alcohol, probably be gluten-free and stay on probiotics...

    As you can see, I have lots of questions...thanks again for all your help.


  4. Hi ravenwoodglass,

    Thanks for your help. I don't know if did do the total IgA. During our consultation, my doctor said that she would, but it's unclear from my results below whether they actually reflect a total IgA measurement.

    tTG Ab, IgA: 4.9

    Gliadin Peptide Ab, IgG: 72.5

    Gliadin Peptide Ab, IgA: 2.3

    What do you make of them? I was still eating incidental gluten when they did the test, but I had scaled back for about a month and a half.


  5. I'm wondering if you've done some research about what a high IgG actually means in terms of celiac. The testing can be really confusing. The information at the following link has excellent information about celiac tests, and it suggests that solely having a high IgG indicates that you may not actually have celiac. Perhaps you are gluten intolerant?

    http://americanceliac.org/celiac-disease/diagnosis/

    Also, what happens if you get the job that you're interviewing for? How will you feel when you challenge yourself with gluten (even if it's only a small amount) when you've only just begun working for a new employer? Will you be able to impress your employers during your first two weeks if you're feeling ill? I can understand, though, that you would want to know the official diagnosis. An alternative, though, might be to go strictly gluten free for six months and then purposely have some gluten. A person with celiac or true gluten intolerance will become VERY ill. In such a case, you'd have your answer: your official diagnosis is that gluten is not good for you.

    Good luck with the interview!

    Thanks very much for the link to that information. This part was particularly helpful, so I'm copying it here for others:

    "If a patient


  6. Thanks very much, rosetapper23. Reading about everyone's frustrations regarding the biopsy makes me incredibly conflicted about it. Given the possible inconclusiveness, along with the invasiveness, risks, inconvenience and expense, it is difficult to feel that great about it. However, I do feel like I need a definitive diagnosis, especially given that only my IgG levels were raised. (But they were triple the reference range.) Do you have any idea what else could cause such a high elevation in IgG levels if not celiac? Are there other auto-immune diseases associated with gluten?

    Anyway, after a lot of consideration and research, I decided to take your advice and delay the biopsy by a week and a half. Also, I'm not going to do the full-on gluten challenge. I'm going to have a small amount of gluten each day, but I don't want to take the risks associated with consuming so much of it over such a concentrated period of time. If in fact I have celiac, I don't think I've been sufficiently gluten free to heal by now. Once I get the results, I will only treat a positive diagnosis as conclusive; if it's negative, I'll most likely do the DNA test and the stool test. Trying to take it one step at a time...

    Thanks again. It's for the best that we can't put our lives on hold while seeking a diagnosis, but having things happen all at once can be overwhelming.


  7. Hello,

    I am being evaluated for celiac and need advice regarding the timing of my endoscopy. A little back story: After being sick in July and not getting a good explanation for it or the diffuse symptoms I've been experiencing (and accumulating) for some time, I began a food journal and pinpointed gluten as a likely culprit.

    The realization naturally made me scale back my consumption of gluten, but since I had read enough to know that some gluten needs to be in my system for diagnosis/evaluation, I didn't go completely gluten-free. This was just before Thanksgiving, and I dramatically reduced my gluten consumption to what a non-celiac would consider very small - incidental exposure through sauces, some non-certified oats, and a few crackers and cross-contaminated foods here and there. Again, that has generally been the nature of my gluten consumption since Thanksgiving.

    At the beginning of January, I had the initial celiac blood test, and they showed: 1) tTG Ab, IgA (4.9), 2) Gliadin Peptide Ab, IgG (72.5) and 3) Gliadin Peptide Ab, IgA 2.3. Given my reduced gluten consumption and a possible IgA deficiency, my general practitioner referred me to a gastroenterologist for an endoscopy and next steps for possible celiac diagnosis.

    After meeting with the gastroenterologist on the 10th of this month, I scheduled my endoscopy -- it's currently scheduled for the 30th. However, because I have had a lot going on professionally, and because of the brain fog, fatigue and anxiety, I have held off increasing my gluten consumption in preparation for my endoscopy. My doctor said that was okay, as long as I had the equivalent of a slice of bread each day for the week leading up to the biopsy. Given that schedule, I should begin my gluten regimen starting tomorrow and carry it out until next Monday.

    Here is my "problem": Happily, I have a job interview scheduled for this Thursday, but if I begin my gluten regimen as planned, I will be a train wreck come Thursday and will not feel like myself for the interview. So, I feel like I have two options: first, reschedule the endoscopy, delaying it by one week; or, second, keep the current appointment, wait until after the interview to eat any gluten, and then try to compensate by eating even more gluten Friday, Saturday and Sunday.

    The drawbacks of the former are that I may have less gluten in my system by then, and I may worry that I've skewed the results. With the latter option, too, it's unclear if I would be eating enough gluten to ensure accurate results.

    I need to decide very soon what I'll do, and I would really appreciate any guidance anyone may have. I am extremely stressed out by the idea that my gluten uncertainty could undermine my professional confidence, and I'm frustrated and exhausted by the uncertainty of the diagnosis process.

    Many thanks,

    Basilicious