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I recently read a on a Celiac research site, that when a non Celiac gluten sensitive person is blood tested for evidence of an autoimmune disease, they will never test positive for that disease and therefore continue to go without a correct diagonises. I am looking for a copy of that research document because I have to change my rheumatologist because he retired and I have met others who continue to live without the correct diagnoses all because we are gluten sensitive! He headed the Rhumatology department of a large teaching hospital and knew just by looking at me that I have Scleroderma and Raynaud's. I went on to be seen for Sjogren's by a cornea specialist and there was a great debate as to whether I qualified because of my ANA test. (I have the most severe dry eye with cornea damage, dry mouth and dry vagina and the DNA that indicates I could be a candidate for Sjogren's.). This would be an important find for the community of us that continue on our search for health. I am 100% gluten free for 5 years; research gluten and its impact on our life; coach people that have gluten issues on how to build their life without gluten and embrace a new way to live; my 21 year old grandson is gluten sensitive and has several autoimmune diseases and my sisters and cousins have both also.
Hi- So asking for friend. Daughter is seven - family history autoimmune (mom is hashimoto's + adopted gfd almost three years ago and never looked back, even though she herself was never formally tested). Daughter has been having chronic stomach pain + nausea for several months She was just tested - celiac antibodies came back negative but she had low blood count (anemia) and really elevated ANA (antinuclear antibody test). Did anyone else test this way at first or have a kid later diagnosed that tested this way? (Pediatrician wants mom to follow up with rheumatologist, and she is planning to, but appointment is two and half months out. In the meantime, she really feels like her daughters symptoms are all GI, so she keeps circling back to wondering if celiac and/or ncgs is effectively precluded or not. She asked me what I thought, and I straight up told her I don't think I have any objectivity about gluten right now. But I thought I would ask the board if anyone else showed up w/ their gluten problems this way first....)
Iron: 17 mcg/dL (Low) November 11, 2016 Ferritin: 1.8 ng/mL (Low) November 11, 2016 RBC: 4.05x10^6/uL (Low) November 11, 2016 Hemoglobin: 8.5 gm/dL (Low) November 11, 2016 Vitamin D: 25.7 ng/mL (Low) February 22, 2017 ANA Profile : February 27, 2017 FANA: Positive FANA Titer: 1:640 FANA Pattern: Homogenous Gliadin IgA: 2 units June 29, 2017 Gliadin IgG: 3 units June 29,2017 TTG Ab IgA: <1 units/mL June 29, 2017 TTG Ab IgG: <1 units/mL June 29, 2017 Immunoglobulin A: 59.1 mg/Dl (Low) July 10, 2017 Immunoglobulin M: 44.2 mg/Dl (Low) July 10,2017 Immunoglobulin G: 1010.0 mg/Dl (Normal?) July 10, 2017 Immunoglobulin E: 5 KU/L July 10,2017 My RBC and Hemoglobin have come up and are normal. My iron levels will get high (too high) when I take 65 mg elemental iron twice a day for several weeks but my ferritin has never gotten over 42 ng/mL. When I stop taking my iron supplement my iron and ferritin plummet in just a matter of weeks. My hair is falling out, I get rapid heartbeat when I get too low on iron and if I get my iron too high. My whole body hurts especially my finger joints, back , knees and really all of my joints. Going to the bathroom at least 2 times day and sometimes up to 5 times a day. Extreme fatigue, Brain fog, extremely emotional and irritable. I just went gluten free July 1, 2017 and am starting to feel better. Joints feel better, I can sleep better, my mood is better. Celiac or maybe just gluten sensitive? Any thoughts? What do my labs say about me?
I'm so confused right now. I had a rheumatologist appt yesterday. He told me he thinks I have lupus and told me to start taking plaquenil right away. He took 12 tubes of blood and results should be back in a week. He also said that lupus could cause villi atrophy. He saw my celiac blood work and confirmed biopsy in the file. Last week my celiac panel was redrawn and looks real good. He said that it shouldn't look that good yet. That my celiac numbers are coming down quite fast. (Like is he trying to imply lupus is causing that for me and not celiac's?!? My celiac numbers were all high in October. Everything.) I don't know what to think and am scared about this lupus diagnosis. He must feel pretty positive to tell me to start taking the medication now, right away, before the blood work comes back. Does anyone else here take plaquenil? Any advice? Side effects? Do you take it for Lupus or something else? How often do you go to the rheumatologist. Any insight into what life is like would be helpful. I'm basically just eating plain fruit, veggies and meat but do you eat anything specifically because of lupus? Also here are my old and new celiac numbers: From 10/21: Celiac Disease AB Profile Deamidated Gliadin 119 units High 0-19 Abs, IgA Deamidated Gliadin 61 units High 0-19 Abs, IgG t-Transglutaminase (tTG) 29 U/mL High 0-3 IgA t-Transglutaminase (tTG) 19 U/mL High 0-5 IgG Endomysial Antibody Positive IgA Immunoglobulin A, Qn, 205 mg/dL 91-414 11/14 biopsy confirmed celiac's. Then redraw last wk: Celiac Disease AB Profile Deamidated Gliadin 18 units 0-19 Abs, IgA Deamidated Gliadin 18 units 0-19 Abs, IgG t-Transglutaminase (tTG) <2 U/mL 0-3 IgA t-Transglutaminase (tTG) 5 U/mL 0-5 IgG Endomysial Antibody Negative IgA Immunoglobulin A, Qn, 168 mg/dL 91-414 Serum ------------- Doctor (rheumatologist yesterday) said my levels came down too fast. That with celiac's those numbers should still be worse. I feel lost! ~Julie