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GottaSki

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Everything posted by GottaSki

  1. GottaSki
    It can take longer than two weeks....hard to know because everyone is different. I would give it more time before I assumed he has serious bacterial issues -- especially if mucus in the stool is his only symptom....the antibiotics can set a healing system back and if he does not need them he should not take them. From what I have read of your combined...
  2. GottaSki
    He did do gene testing in combo with antibody testing -- do you know if he ran a complete antibody panel? Get written or electronic copies of all your tests -- it can be very helpful for many reasons -- both now and in the future. Yes, sadly many doctors (even gastroenterologists) dismiss the idea of celiac disease in all be young, short, skinny patients...
  3. GottaSki
    I hope for you they come back positive. Removing gluten or going gluten light can exacerbate an already frustrating diagnostic process. Good luck....and I strongly agree with your doctor's view...you are fortunate to have this type of doctor...trust me..unfortunately - it is rare Let us know how it goes or if we can help.
  4. GottaSki
    Welcome! If you have been off all grain it is highly unlikely celiac antibody tests will be accurate without a twelve week gluten challenge. The suggested challenge for biopsy is two weeks...so if celiac is suspected that may be a better avenue. Have you had any adverse reactions since you removed grains? Do you ever use soy sauce or other gluten...
  5. GottaSki
    It has been quite a while since I tasted many gluten-free beers...and now, unbelievably I have kids and their friends wanting a good dark gluten-free beer. Suggestions? I may have to try them too
  6. GottaSki
    To me...this is the most important fact. How long had he been ingesting gluten before the first celiac antibody test? How long has he been ingesting gluten now/is he still eating gluten daily? If so, run a full antibody test and then regardless of results remove ALL gluten. You have Non-Celiac Gluten Sensitivity and there is NO OTHER test besides...
  7. GottaSki
    Nicole is right...the genes associated with celiac are not a perfect indicator. We have a few members that had no genes (not even the others besides Dq2 and 8 that are associated with celiac and/or gluten sensitivity) that were diagnosed by blood and/or endoscopic biopsy. I think the DH biopsy is a good idea....but also would not discount the value of...
  8. GottaSki
    Yes...I was anemic most of my adult life. At diagnosis...I was low in all Bs, D, K, Iron and more...took some time but they steadily improved after removing gluten...and were in the upper third of normal at 18 months gluten-free
  9. GottaSki
    The last time I researched the timing of taking probiotic when on antibiotic I found a lot of different answers and the studies I read had used different timing as well. Most said take probiotic at least one hour after antibiotic -- and a good amount said take the probiotic two hours after. I opted for two hours after. Point being -- I agree with Karen...
  10. GottaSki
    I did it for a short time when GI thought I wasn't improving due to possible SIBO. It didn't work for me...but by that time I already had a severely restricted diet so I am not a good comparison. There has been some research that Non-Celiac Gluten Intolerance can be greatly improved with fodmaps...would have to search for links to this as I don't have...
  11. GottaSki
    I've only seen them at gluten-free Conferences/Fairs -- I wasn't impressed, but it might be fun if you are looking to try some new items to arrive in the mail. In my opinion, you'll have better luck simply picking six items from the gluten-free selections of the stores near you and you won't be tied to a monthly commitment. Perhaps others have had good...
  12. GottaSki
    Yes...I had all the symptoms of "Fibromyalgia" for about 20 years that got progressively worse and would come and go -- "flares" were common and became more frequent with higher levels of pain. When I removed gluten, my digestive symptoms improved a great deal during the first weeks/months, but my fibro symptoms remained -- whether they were worse or simply...
  13. GottaSki
    Good Morning Rachel! I'm not surprised at the strong reaction you've had. My first week gluten-free there was still a small part of me that was doubtful that we had finally found what the cause of a lifetime of symptoms was...well the very first time I ate at a restaurant after diagnosis...I had my very first glutening...there is a particular type of...
  14. GottaSki
    I agree with Nicole on all counts.....and I was diagnosed at the age of 43. At the time of diagnosis, my doctor said...I doubt you have Celiac Disease because it is found in children that are short and underweight with chronic diarrhea most of whom outgrow it. That was five years ago....she has since diagnosed others that presented with lifelong non-specific...
  15. GottaSki
    Oh good...glad you don't think your symptoms are mast cell related. You are in a bit of a pickle....I would hate for Dr. Harmon to be a wasted effort as he does specialize in Celiac Disease and you are well beyond wanting celiac testing as you already live completely gluten-free...perhaps there is a gastro that has more experience with SIBO...or maybe...
  16. GottaSki
    Sorry, didn't mean to add confusion. If you are certain you will remain completely gluten-free, there really isn't need to have more testing now and simply have follow up antibody tests at six months and than annually thereafter. Not everyone with Celiac Disease tests positive on all the antibody tests, which makes this process all the more frustrating...
  17. GottaSki
    Ya...I spent two years trying to eliminate food groups or single foods with no clear answers...finally had to bite the bullet and do a full elimination of dairy, grains, legumes, nightshades, nuts and seeds -- turns out I was intolerant of many items within each catagory which is why I failed all the previous eliminations. Bummer, yes -- but I can tell...
  18. GottaSki
    Yes, I would have a full celiac antibody panel run on her. It is a bit strange that you had a negative DGP-IgA with such strong AGAs - so I would include the AGA's for your daughter as well: Total Serum IgA tTG - both IgA and IgG DGP - both IgA and IgG AGA - both IgA and igG If she is negative, she should be tested every three years or more often...
  19. GottaSki
    Welcome! What tests were used to diagnose your sensitivity? If it was not a celiac antibody blood panel, you should return to eating gluten to have a complete panel, then decide if your daughter should be tested. This process is frustrating -- hang in there
  20. GottaSki
    I would use that list....most extensive one I've seen -- I didn't know a few of the ones towards the end..but they aren't common foods so doubt it will be hard to avoid -- at least for the initial trial -- otherwise you may eliminate all of the major items and question whether you eliminated enough. Now that being said...you could be intolerant of only...
  21. GottaSki
    The peppers in nightshades is the toughest to eliminate with processed items (other than tomato of course)...often "spices" does include red pepper and other nightshades...for the initial period I would leave all pepper except black pepper out of your diet -- if you improve than you can test if you tolerate a small amount of nightshade spice.
  22. GottaSki
    Yes, it can be tough to remove nightshades or any other group for that matter...but Barty is correct -- you can replace potatoes with sweet potatoes, yams and purple sweet potato as they are not nightshades
  23. GottaSki
    Anything processed can pose problems on an elimination diet. Using your own plain/single spices while cooking is the best route and takes the guess work out of it.
  24. GottaSki
    Good Morning Sara! I hope you are able to get in to see Dr. Harmon, he diagnosed me while practicing at UCSDs Celiac Center. He takes the time to listen -- which is a quality lacking in many doctors today. I am curious if you were tested for SIBO...Although negative results are not always accurate...positive is and can help to know that this is...
  25. GottaSki
    I would imagine they'll suggest biopsy. I would think a discussion, review of her history and perhaps more blood tests (I'm not clear if she ever had complete antibody or nutrient testing) should be sufficient to diagnose. Ultimately, it is your decision...after discussing with a doctor that has real celiac knowledge/training/experience whichever decision...
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