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GottaSki

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GottaSki last won the day on September 26 2014

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  • Gender
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  • Interests
    Skiing, Biking, Hiking, Walking, Kayaking, Reading, Cooking
  • Location
    San Diego

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About Me

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration

maybe one good hour per day for ~17 months

8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods

only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE

3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.

11/15/12 - Improving once again - Almonds back - Eggs gone

12/1/12 - Histamine containing and inducing foods FREE -- probable cause of my heat/exercise "allergy"...

...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.

10/25/13 - MCAD - symptoms plus positive Prostaglandin/N-Methylhistamine - trialing combos of H1, H2 and Mast Cell Stabilizers

9/20/15 - Mastocytic Endocolitis (too many mast cells in the mucosal lining of the small intestine)

If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!

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Volunteer Celiac.com Board Moderator - Retired April 14, 2014

  1. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. Inflammation is not uncommon. Congratulations on healthy villi! Were alll of her celiac antibodies tested? negative? Any nutrient deficiencies at diagnosis corrected?
  14. 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. 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...
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