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GottaSki

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About GottaSki

  • Rank
    "The past is the past...I've got places to be."
  • Birthday May 17

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    https://www.facebook.com/groups/TheCeliacDinnerTable/

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  • Gender
    Female
  • Interests
    Skiing, Biking, Hiking, Walking, Kayaking, Reading, Baking, Cooking, Sewing along with researching every flipping medical publication to figure out my ridiculously complicated health puzzle...think I may be getting close to putting the last piece on the table ;)
  • Location
    San Diego

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  1. 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 evaluated.
  2. 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 all be utilized as needed to identify mast cell disorders. I said get the celiac biopsy regardless of ability to ingest gluten since dark angel has this in the works and IF able, ingest small amount of gluten. If an endo is happening...be sure to get orders for mast cell staining....not always an easy thing. As you said...we don't have all the details, I popped in because it took a very long time for me to be accurately diagnosed. Had all of my six endoscopies had proper orders it could have given me a much better past seven years. I saw a similar presentation to mine and offered what I hope is a fast forward to the frustrating process of Mast Cell and Celiac testing. Good Luck Dark Angel! PS..Great definition of HAE there Paul! For quite some time it was thought our family may have another yet to be typed HAE...seeing as we are negative FactorXII and have three generations presenting with angioedema ....turns out it was all too many mast cells in the mucosal layer of the small intestine.
  3. 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 considering your inability to ingest gluten, but remains extremely necessary given your symptoms. If at all possible eat at least one piece of glutenous bread or crackers per day for at least two weeks prior to endoscopy. The truth is it can be very difficult to obtain positive lab results for mast cell activation, but it is possible. Research Mast Cell disorders and ask your Gasterenterologist if they are familiar with mast cell stainings. The most important thing is that 6-8 samples of the duodenum are taken during the endoscopy. It is preferable to have all celiac and mast cell test orders placed with the samples, but it is possible to add additional testing at a later date. If your allergist or primary will order 24 hour urine to test for mast cell mediators....it is essential that the sample stay chilled throughout the entire process from you collecting and lab processing/sending on to other lab....this is the most frequent reason for false negatives. Hereditary Angioedema is another possibility. Hang in there and read all you can to help your doctors find proper treatment.
  4. 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...and when it's time to go, please send one up to Shroomie for me : ) Ad Astra Dear Bartie.
  5. 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 levels. If you don't know them, as for a written copy from your doctors. As mentioned, it is a very good idea to check that nutrient levels are all good
  6. 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 of symptoms, nutritional deficiencies and proper celiac antibody testing to diagnose celiac disease in many cases. I agree with the diagnosis, but highly suggest further nutrient testing as many need to supplement until the digestive system has a chance to heal and begin to properly absorb nutrients. All that said...if you are not comfortable with the diagnosis, I suggest you seek out a gastroenterologist with celiac experience to discuss the possibility of further testing. Undiagnosed celiac disease can cause all of the symptoms known as Fibromyalgia....as others have mentioned, it can take time for these symptoms to improve. The complete removal of gluten is not an easy transition, but once you are past the learning curve it becomes much easier to live gluten-free.. Do read the newbie thread others have linked to. If you are thinking of consulting with Gastro...do not remove gluten until you do. Further testing (endoscopy with small intestine biopsy) requires continued gluten consumption until the endo has been completed. Welcome to the best club you never wanted to join
  7. 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
  8. 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!
  9. 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
  10. 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-IgG Hang in there
  11. Inflammation is not uncommon. Congratulations on healthy villi! Were alll of her celiac antibodies tested? negative? Any nutrient deficiencies at diagnosis corrected?
  12. 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.
  13. 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 remains a valuable tool.
  14. 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.