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  1. Howdy, y'all. Greetings from hot as hades Texas. I want to start by saying thank you to everyone who has posted on here. I'm glad I found this site because I'm feeling very confused, a little bit scared, and I see many of you started your journeys with celiac disease in much the same way. Anyway, long story long... I'm a 45-year-old female who has been seeing a slew of specialists my whole life and have been seeing the same PCP for over 20 years. I always felt like I was getting good care. However, there have been a few instances where I felt that the communication between them was lacking, and many of them seemed to pooh-pooh anything that wasn't traditional (i.e., Western). So a few weeks ago I went to an integrative medicine MD with chief complaints being hot flashes and what I figured (and had previously been told) was IBS. As I was going through my history with the NP at the new practice, she noted all my "itis"es and said I might have an issue with gluten. She recommended a gluten-free diet and to get rid of added sugar. Fair enough. She sent me for basic blood work at the lab covered by insurance, and a food sensitivity test with an independent lab. She scheduled me for a follow up in two weeks. I went and had the lab work that same day. A week later, a nurse called and said that the NP wanted me to get additional blood work done. She mentioned a celiac panel. I asked what prompted that request and she said the results hadn't been finalized by the NP so she couldn't be sure. So naturally, I started Googling "celiac" and as I read about it, it seemed like maybe I was finally getting to the bottom of a host of ailments that have plagued me my entire life. My history follows: HISTORY: -Dx at infancy with "milk allergy" to formula and had to have soy-based formula. -Dx at 18-months-old with Systemic JRA and a bit later, Iritis. Mom noticed symptoms at 9 months (right about when I started eating more than formula) but symptoms were only a slight limp that she attributed to me being a toddler figuring out how to walk. After another 9 months of the run-around from the pediatrician, then an orthopedist, we finally ended up at a rheumatologist. Apparently my rheumatoid factor was always negative but the rheumatologist said that didn't preclude the JRA diagnosis. Rash, fever, stiffness, joint inflammation...all were present and indicative of systemic JRA. Went through flare-ups and remissions throughout my childhood until about my early 20s. I learned how to get around it by not doing any sort of high-impact exercise. It's been pretty calm since then with persistent stiffness in a few joints and very rarely, swelling. No more rash or fever. - Dx at 22 y.o. with IBS. Blood in my stool and severe stomach cramping that my PCP at the time attributed to being over-prescribed antibiotics (that he'd prescribed). Symptoms improved somewhat (no more blood) but occasional diarrhea remained. Had a sigmoidoscopy, which was normal. Being 22 and in college , I began to make a connection between beer and my occasional D. - Dx at 25 by PCP with Graves' Disease. My eyes were bugging out of my head. (Had to have a crazy surgery to fix that.) He prescribed antithyroid meds which normalized my levels. Began seeing an endocrinologist to manage the Graves. - Had my sweet baby boy via C-section at 30, unable to breastfeed, found out then that I had become hypothyroid out of nowhere, after years of being normal. Went back to the endocrinologist and was prescribed Synthroid and, voila! I had milk! - Endometriosis with laparoscopic removal over and over from 31-42ish. Tried to conceive again but fertility meds made the Endo worse, then had a total hysterectomy at 42. Was prescribed estrogen, progesterone and testosterone. - Around 40, had a wicked thrombosed hemorrhoid. Went to a GI who did a colonoscopy, referred me to a colorectal surgeon who removed a bunch of internal and the one external hemorrhoid. - Pulmonary Embolism at 43, Dr in hospital took me off estrogen. Hot flashes ensued. Went to a menopause specialist to see if there was anything that could be done about that (because let me tell you, hot flashes are So Not Fun in hot-as-hell Texas). She prescribed Gabapentin, an anti-convulsant that is prescribed off-label for hot flashes, and it's helped. - For the last 2-3 years or so, I've had chronic diarrhea. I can't remember the last time I had a normal movement. On a good day I go 2-3 times. Bad days 4-6 times. I work from home so I've been able to manage it without too much fuss. But I recently went on vacation with friends and noticed myself saying "I can't eat that, it'll jack up my stomach;" "I can't drink that, it messes up my stomach;" etc., etc. Always having to know where the bathrooms were, and if I knew bathroom access was limited, I had to take an Imodium beforehand. After that experience, I was just sick of it...literally. So as soon as I got back I scheduled with the integrative medicine doc to see if there was anything non-pharmaceutical that I could do about what I thought was IBS and the hot flashes. So a few days ago, I got my lab results back and there were a number of out-of-range results. LAB TESTS [out-of-range results (according to the lab) highlighted in red]: 1. ANA TITER AND PATTERN: Centromere, 1:80 (Expected range <1:40) Speckled, 1:40 (Expected range <1:40) Homogenous, 1:40 (Expected range <1:40) 2. CANDIDA ALBICANS IgA, IgG, IgM IgA, 1.40 (Expected range <=0.89 (EV) IgG, 1.31 (Expected range <=0.89 (EV) IgM, 1.87 (Expected range <=0.89 (EV) 3. HEMOGLOBIN A1c 5.3 (Expected range 4.0-5.6) 4. FEMALE WELLNESS PANEL NAME VALUE REFERENCE RANGE PROTEIN, TOTAL 7.2 6.1-8.3 (G/DL) ALBUMIN 4.6 3.5-5.2 (G/DL) BILIRUBIN, TOTAL 0.5 <=1.2 (MG/DL) BILIRUBIN, DIRECT 0.2 0.0-0.3 (MG/DL) ALKALINE PHOSPHATASE 113 H 30-101 (U/L) AST 213 H 9-40 (U/L) ALT 413 H 5-40 (U/L) WBC 6.5 4.0-11.0 (K/UL) RBC 4.76 3.80-5.10 (M/UL) HEMOGLOBIN 15.6 H 11.5-15.5 (G/DL) HEMATOCRIT 44.5 34.0-45.0 (%) MCV 93.5 80.0-100.0 (fL) MCH 32.8 27.0-34.0 (PG) MCHC 35.1 32.0-35.5 (G/DL) RDW 12.5 11.0-15.0 (%) NEUTROPHILS 57.9 40.0-74.0 (%) LYMPHOCYTES 29.7 19.0-48.0 (%) MONOCYTES 9.8 4.0-13.0 (%) EOSINOPHILS 2.1 0.0-7.0 (%) BASOPHILS 0.5 0.0-2.0 (%) PLATELET COUNT 233 130-400 (K/UL) ESTRADIOL <17.0 Note: Estradiol sensitivity is 17 PG/ML. DHEA SULFATE 92 27-206 (UG/DL) INSULIN 14 H 4-13 (UIU/ML) FREE T3 7.6 H 2.2-4.2 (PG/ML) FREE T4 (THYROXINE) 1.16 0.80-1.90 (NG/DL) TSH 0.011 L 0.400-4.100 (UIU/ML) THYROID PEROXIDASE AB 357 H <9 (IU/ML) THYROGLOBULIN AB 1 <4 (IU/ML) VITAMIN D, 25 OH 23 L Suboptimal NG/ML 20-29) VITAMIN B-12 570 200-950 (PG/ML) TESTOSTERONE 12 <=50 (NG/DL) Note sensitivity is 12 ng/dL SEX HORM BIND GLOBULIN 64.7 24.6-122.0 (NMOL/L) CALC FREE TESTOSTERONE 0.1 <=0.5 (NG/DL) PROGESTERONE 0.26 5. HIGH-SENSITIVITY CRP High-sensitivity CRP, 4.9 (High if >3.0) 6. ANA (ANTI-NUCLEAR AB WITH REFLEX TITER) Anti-Nuclear Antibiodies, Positive (Expected range = Negative) So, since the initial labs, the NP ordered the Celiac Panel, Celiac Genotype, CMP, and a Thyroid Panel. Due to a mix-up between the lab and the doctor's office, only the first two (Celiac Panel and Genotype) are done and I don't have those results yet. I have my follow up in three days when I'm sure all labs will be in and discussed. Based on my research, my autoimmune issues (especially JRA and Graves) make me more susceptible to celiac disease, and a lot of what I see in these labs seem to line up with a celiac disease Dx [elevated AST & ALT, Low Vit-D Low B-12 (before supplementation), Positive ANA, Elevated Alkaline Phosphatase, and Candida]. However, my AST & ALT seem WAY high, higher than what I've seen most people on here post as their elevated levels. Looking into it further it looks like SLE (Lupus) could also be causing some of these results, which is frightening as well. As for family history, no one in my family has been diagnosed with celiac disease or Lupus, but nobody has been tested, either. My grandmother had celiac disease symptoms her whole life, as do both of her children (my mom and aunt) and both of their children (me, my brother, and my two cousins). My mom and son have constipation instead of D. I'm hoping the Celiac Genotype can help rule out celiac disease at least for me, my mom and son, but if it turns out I've got the genes then I'm going to insist all of them get tested as well. Anyway, that was a lot to type. I hope some of the celi-experts on here can help me make sense of these labs in the context of my history and my family's GI issues. The information I've found here has been sooooo helpful, so if anyone has any insight to share, I'd sure appreciate it.
  2. Hi, I'm newly diagnosed. Had endoscopy & colonoscopy first, then one week later GI's office called and told me to go have bloodwork done. About one week after the bloodwork GI's nurse called saying I have Celiacs and to go ahead and start a gluten-free diet. Didn't speak to the doctor, I follow up with him July 27th. Test Results: EMA Titer 1:20 Gliadin Deamidated AB - IgA 17 (<20 antibody NOT detected); IgG 68 H (>20 antibody detected) Tissue Transglutaminase AB - IgG 1 (<6 antibody NOT detected); IgA 28 H (>4 antibody detected) Total IgA 153 (Range 81-463) I've done some reading and *think* I understand these results, except for one thing... Does it tell me anything that my TIgG and Gliadin IgA are lower (not detecting antibodies)? I would have assumed both test IgAs would be low or both IgGs but not flip flopped. I didn't follow a gluten-free diet prior to bloodwork, however, I do follow a predominately whole food based diet, could that account for any of these numbers? I guess my real question is: can these numbers tell me anything other than, "you have Celiac Disease" ? My understanding is that these numbers cannot tell you anything about the severity, gluten sensitivity or level of damage... is that correct? I would like to extrapolate the most I can from this test. Is there anything else I might be able to surmise before I see my GI in a few weeks? Thanks so much, I've already learned a lot from poking around on these forums!
  3. Ok, so long story, but I'm hoping some knowledgeable folks can chime in and tell me if a) I'm not crazy for thinking this sounds a lot like celiac and not a lot like anything else and are the tests being run the right ones? I had malabsorbtion symptoms my whole life, rashes on the inside of my elbows and knees, chronic constipation, chelisis, brittle cracking nails, my hair sheds a ton, irritation on the edges of my scalp, blistery rashes on my hands, low iron, migraines, low blood sugar, bloating, painful gas (like bring me to my knees type). I pretty much just accepted it as my normal, and when I went to get the skin issues checked out in my early 30s, I was just told it was eczema and sent away. The rashes on the insides of my elbows and knees went away when I was about 15 or so, but in my 20s I started seeing a blistery, itchy rash on my elbows occasionally. Also in my 30s, realized I had infertility issues. It took us four years to get pregnant. Fast forward to 2015, and I have a terrible outbreak of GI symptoms (always constipation with me, with the occasional horrible D experience sprinkled in) along with a pretty bad itchy rash on both elbows. I start researching and find that a lot of what I have experienced sounds like DH/celiac. By the time I get my referral in and appointment to the GI doc, I've decided to cut milk out of my diet. I thought back to when I had the last period of time where I had no GI symptoms, and it was when I was last deployed. The dairy in the chow hall was either expired or near it, so I lived on eggs, rice, and chicken, and hot sauce. ;p. I figured it was worth a try because my son can't tolerate milk or soy protien, and maybe it's hereditary. Once I cut out milk, and I saw a pretty impressive relief of most of my symptoms. The chelisis is gone, my rash disappears, bloating is much better, gas pains are gone. I get tested for celiac- negative, lactose intolerance- negative, SIBO- positive. Two rounds of antibiotics 6 months apart and my SIBO (methane type) clears up. Basically they said I had IBS-C and my skin were likely unrelated. I'm pretty sure my issue with milk is casein-related, because my son has the same issues with casein, and I sure have GI issues when I drink it. (TMI... mucousy rabbit poo). So I figure most of my issues have cleared up, no active rashes, good, right? Nope. Since then, I had a couple outbreaks on my elbows, but they went away fairly quickly, My scalp rash thing ebbed and flowed, and my hair still sheds a ridiculous amount. About a month ago, I had another outbreak on both elbows, a couple blisters on my hands, pretty bad migrane, and the rash stayed. After a month of rash, I finally contacted my doc and said "look, this rash is active, please take a look." Just as if it sensed it, the rash started clearing, that same day. :-< By the time I saw her a week and a half later, it was gone, save for a couple scabs. So, good news is my doc disagreed with the GI doc and said it sounded auto-immune to her. I took pictures, and was able to at least show what it looked like. I'm military, so I get what I get for referrals, labs, and doctors, but she's luckily very good and knowledgeable. She ran the following tests: Complement Panel: Awaiting results C-Reactive Protein: Awaiting results Celiac Disease Ab IgA Panel: Awaiting results Tissue Transglutaminase Ab IgA: Awaiting results Gliadin Ab IgA: Awaiting results Endomysial Ab IgA: Awaiting results Rheumatoid Factor: NEG Comprehensive Metabolic Panel W/eGFR: Normal with the exception of a higher than normal Urea Nitrogen/Creatinine (indicates poor kidney function or bleeding in intestines (ding ding ding) My GFR was normal, so kidneys are probably okay. ESR: 9 (normal is 0-20) Indicates inflammation Here are a couple of pictures, although you can't see the little clear blisters very well. Obviously, I was scratching. These are same rash, 1 month apart. It's been lots worse. I'd call this a mild outbreak.
  4. Happy Monday friends, I am new to this forum. I'm a 36 y/o female, and am seeing a GI doctor for bowel changes and other unsavory symptoms. I have suspected Celiac, and although the GI doctor said he didn't think it was Celiac, he ordered tests to be thorough. I have waited a few days to hear from his office regarding the results, but I received the results via email. I'm awful at this waiting game. What the HECK does this mean? I'm seeing conflicting numbers online, and I'm utterly confused. Thank you for any light you can shed on these numbers: Endomysial Antibody Iga Negative T-Transglutaminase (Ttg) Iga 5 High Ref range: 0-3 U/ml Immunoglobulin A, Qn, Serum: 224 Normal Ref Range: 87-352 mg/dL
  5. I have been gluten-free for 13 months since my Celiac diagnosis via blood test & endoscopy...like freakishly good about things. I'm a changed my makeup & hair products, google-the-crap-out-ofeverything-before-I-eat-it kind of compliant gal. Anyhow, I had Graves Disease and had my 7" long dead thyroid removed in 2010. I also have gastritis that was found during my endoscopy. My problem is that I feel like @#$* All. The. Time. From massively debilitating fatigue to an acutely high CRP. I just got my labs back and my B12 is near the bottom, as well as my D3, which isn't surprising as it has been raining for the past 9 months. lol I try to eat low processed foods, but have still put on 25 lbs in the last year! My triglycerides have dropped to like 70 and my overall cholesterol is 141....that seems to mean I'm eating properly. My TSH is low (.01) but that's normal when you don't have a thyroid. I'm on 200mg/day of Tirosint and 25 of Cytomel. My A1c and glucose are low, so no issues with being diabetic. I am a moderate exerciser, mostly walking and scuba diving..I did buy a punching bag but haven't used it yet. I suppose I could become a gym rat, but that isn't realistic for me. I have a very stressful job, that I love, and I travel a lot. 42 1/2, no kids and a great boyfriend, who is literally the most understanding guy ever! Unfortunately, the sex drive has become pretty much non-existant too. I hate to sound like a sob story, but the OCD control freak in me can't seem to "fix" me. Has anyone else had any luck overcoming all this? I am an insomniac as well, getting perhaps 4-5 hours per night, even when I have 10 hours to sleep. I use a mask, ear plugs, lavender oil on the soles of my feet, hot tub before bed, writing down my to-do list so I don't worry about it all night, Headspace meditation app (that cute-sounding British guy can actually put me to sleep!), drink chamomile, etc. Anyhow, there you go. I'd love to hear what may have worked for you. I'm tired of going to bed wide awake and waking up so tired I can't function all day. Love to you all! xoxo
  6. Hi All- new here and new to all of this. Quick info: I have hashimoto's disease and was hoping that trying gluten free might help with some ongoing symptoms that have not been relieved by levothyroxine and liothyronine (synthroid and cytomel). Well- one my main symptoms has been weight gain and an inability to lose weight and in the past couple of months since reducing gluten I've lost 30 pounds without really any other change to my diet/exercise. In the past month I've done my best to remove it completely (using apps etc. to scan my food) but since I am new at it there have of course been some misses on things that it is in and times that I've fudged it thinking it wouldn't matter. Additionally, I've always struggled with GI issues on and off. There have been times where I've seen the GI doctor for frequent diarrhea and mid-stomach pain without anything being resolved in terms of diagnosis, and then periods where I haven't had as much issue with these things. Since going gluten free I was feeling things were more regular, but having some out of town visitors and eating out more led to less meticulousness on my part. I was still getting gluten free items but not checking all the time if say fries were not coated in something, etc. and noticing more stomach upset and sometimes a cough/sneezing/nose congestion- which has also been an issue for me (I don't know if this is typically something that goes with Celiac or something else entirely, but something I've noticed when I eat often nonetheless). Anyway, I saw my regular doctor and mentioned this all to her and she did the bloodwork for Celiac, which came back negative. I've read that if one has been on a gluten free diet for 2+ weeks it can lead to inaccurate test results. I am wondering if anyone has had this experience and is something I should continue to pursue? Or if considering the information I've laid it is probably the case that Celiac is not to blame for whatever is going on and maybe I just have some kind of intolerance related to my hashimoto's as I'd originally suspected. Either way I surely have seen a benefit from eliminating gluten and my body has an issue with it, I would just prefer to know if it may still be Celiac that is causing GI and other gluten related problems for me! I've kind of gotten to that point with things that I'm worn down from pressing doctors about my thyroid and getting nowhere, don't want to do it with this one too if it's not going to be worth it. Thanks in advance!
  7. ahhh as soon as I think I'm a step closer to knowing what is wrong I get thrown another curve ball! So here is a little bit of info about me.. 27 year old female with Hashimoto's thyroiditis. I've suddenly developed iron deficiency anemia. After doing some research and seeing my doctor I learned that a lot of people with Hashimoto's can also have celiac disease so we ordered some celiac blood tests TTG (IgG/IgA) both came back normal (however total IgA wasn't tested..) DGP IgA negative, and DGP IgG positive (3.59 IV anything above .90 IV considered positive). After getting my blood test results back I made an appointment with my GI doctor and had the endoscopy done yesterday.. I also work in the hospital laboratory so I know the pathologists and all so I called today and he said he didn't see any signs of celiac but wants to pass it around to the other pathologists to make sure, he did say I have gastritis tho with no signs of H. pylori...told me to come talk to him tomorrow but now I'm stressed out and confused!! :/ any advice?
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