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GottaSki

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by GottaSki

  1. GottaSki
    Yes. The damage to the small intestine mucosa can be caused by too many mast cells or celiac disease or both. Not around here much lately, popped in to quote an old post. You should ask your doctors for complete antibody testing...be sure you are still consuming enough gluten. Good Luck : )
  2. GottaSki
    So sorry Gem! Just saw this...don't log on much any more. I do know folks with primary hives and other allergic type symptoms without any IgE allergies. If these present in someone with celiac, NCGS or other gastro symptoms, I would highly suggest proper mast cell staining. This can be done from former endoscopic biopsies. Unfortunately, finding...
  3. GottaSki
    Hi Maby! It was a very long road after celiac diagnosis, but we have learned conclusively that we have too many mast cells in the mucosal lining of the small intestine which is responsible for non-responsive celiac disease and many autoimmune and allergic type symptoms. Other things can cause heat intolerance...be sure your thyroid has been correctly...
  4. GottaSki
    Not sure I used the quote feature correctly. perhaps I wasn't clear...I believe the endoscopy is an essential component of diagnosing mast cell disease. It can be very difficult to find a Gasterenterologist that has accurate and up to date knowledge of both celiac disease and mast cell disorders. Blood, Urine, Endoscopy and Bone Marrow should...
  5. GottaSki
    Hi DarkAngel....increasing anaphylactic events to many triggers, both known and unknown is very scary. I am not around here much anymore...but email alerts are still going to me regarding other food intolerances. I wanted to add to cycling lady's suggestion regarding Mast Cell Activation. An endoscopy may not result in positive celiac biopsies...
  6. GottaSki
    Karen lit the super silly signal....I'm thankful she did. So very sorry to read this news. You sound at peace which shows what a remarkable person you are....you will be missed by those you've helped as well as those whom have shared time with you... in the real world or through our keyboards. Many hugs for all your days left on this rock....
  7. GottaSki
    tTG-IgA (Tissue Transglutaminase) tTG-IgG DGP-IgA (Deamidated Gliadin Peptide) DGP-IgG EMA-IgA (Edomysial antibodies) Most folks are back in normal range after a year....if completely gluten free. Folks that remain positive either started off with extremely high positives or are not completely gluten free. Compare results to original antibody...
  8. GottaSki
    The celiac antibody tests are IgA and IgG based. With deficient total serum IgA, the IgA based celiac antibody tests are not valid and make the IgG tests that much more important. Another important item you mention was deficient Vitamin D...celiac disease prevents proper absorption of many nutrients. It takes a doctor that understands the combination...
  9. GottaSki
    Hi De Ho... Saw your post...fantastic...and I must add... I have had virtually NO cold or flu bugs since I was diagnosed with celiac disease five and a half years ago. I have had many autoimmune flares that can feel worse than the worst flu....yet, knowing I wasn't catching every bug flying by....was and is comforting. Yay for not catching bugs
  10. GottaSki
    Well said Mommida! Emily...we understand this very well. The changes in the US post 9/11 have been hard to tolerate. Yearning for a safer time never ends dispite becoming used to enhanced security protocols. We love Canada in this family -- very much look forward to visiting more than BC one day. Stay strong Canada!
  11. GottaSki
    Hey Guys... Just wanted to let you know my heart goes out to all my Candian friends this evening. Was very sad to hear your news today With hugs, Lisa
  12. GottaSki
    Yes, positive is positive. Especially the positve EMA. Perhaps you caught this early or her limited consumption of gluten has effected the results. Two things: Make sure she is ingesting at least one slice of glutenous bread each day leading up to the endoscopic biopsies. Request the balance of celiac antibody tests: tTG-IgG DGP-IgA DGP...
  13. GottaSki
    Inflammation is not uncommon. Congratulations on healthy villi! Were alll of her celiac antibodies tested? negative? Any nutrient deficiencies at diagnosis corrected?
  14. GottaSki
    With high celiac antibody numbers an endoscopy is not necessary for diagnosis. I hope you are able to add foods back soon...I understand your dietary constraints well.
  15. GottaSki
    I admit that I haven't read this entire thread...but will tell you this. I am one of those that has not improved with strict gluten-free along with all attempts to make other adjustments. If I had not had that initial endo, along with each follow up...I would never have found the cause of my continued problems or ruled out refractory celiac. Endoscopy...
  16. GottaSki

    ARCHIVED Addison's

    GottaSki replied to beth01's topic in Related Issues & Disorders

    Good Luck Beth. Make sure to ask..if not addisons or other things discussed...What could it be? Always ask questions that make them think. Hang in there and if addisons stays in the mix...Colleen is your advocate.
  17. GottaSki
    Yay Squirmy : )
  18. GottaSki
    ps...for those reading along...most folks improve with the complete removal of gluten within the first year. for some it can take more to heal the damage caused by celiac disease...once this happens they usually get many more foods back in their diets.
  19. GottaSki
    I drink Red Wine with no issue...suprisingly as it is high in histamine, but I don't question it...I just enjoy it Have you already lost other alcohols like vodka? And you aren't a whiner because you are frustrated, but same rule...keep trying to find something that works with your body. Glad to hear you are able to attend social events...it...
  20. GottaSki
    Been there, done that and still am. I could have written your exact post many times...as recently as a year ago. For better or worse we have learned to never think we have solved the complete puzzle...I have had three major periods of improvement since diagnosed with Celiac Disease in 2009. Each was followed with a flare that was worse than any...
  21. GottaSki
    You are welcome. In my opinion, those that do not improve with strict removal of gluten after six months need to find what the right group of foods is for them. It took me nearly four years to find the optimum foods for me....beyond frustrating, but worth the effort.
  22. GottaSki
    Hang in there
  23. GottaSki
    I understand not wanting to undergo an invasive procedure, but this one is necessary. We opted to forgo endoscopy with our seronegative teens as they were willing to go gluten-free on their own due to frustrations with symptoms. We cannot go back, but each of them along with their father and I would say....hell, yes! To endoscopy if we knew then what we...
  24. GottaSki
    They are different. Here is an link that show foods on clear DO and DON'T lists for FODMAP. Open Original Shared Link The best way I can explain FODMAP is gluten free plus other foods that are believed to exacerbate the symptoms often called IBS or SIBO. The terms of Paleo are often argued amongst the primal and paleo folks, but if you stick with...
  25. GottaSki
    Give this a good read.... https://www.celiac.com/forums/topic/91878-newbie-info-101/
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