Search the Community

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.