I am a 57 year old female diagnosed with Celiac Disease in 2003 after 30+ years of misdiagnosing. I've been on a gluten-free diet since that time. On routine blood tests after the birth of my 2nd child at age 35, I was found to be hypothyroid, placed on Synthroid and have been on thyroid replacement since then. On a free screening "heel" bone density test in my early 40's, I was found to have osteopenia and last year at age 56 moved into the osteoporosis catagory. I was always underweight as a child and into adulthood. I started having trouble with gas, bloat, pain with bowel movements about age 21 and was told it was IBS. Foods suggested to be eaten only caused more trouble. I finally gained a couple of pounds around age 25 but was still underweight at 105 and 5'4" but gradually gained to 110 lbs. over the years. In 2002, I started having neurological type "seizures", multiple times a day and up to 2 or 3 within each "seizure". I lost about 10 pounds(which dropped me to about 100 lbs) was weak and exhausted, getting weaker with each episodic seizure. After numerous trips to the ER and numerous tests, all they could come up with was "panic attacks" and wanted to put me on tranquilizers. This was extremely frustrating, because my family, priest, and friends knew my personality was not prone to anxiety, fear, impending doom and death. But the doctors in my immediate medical world would not listen to any of us. My husband and I had finally deduced that the attacks came after ingesting food, so I declined the drugs. My PCP finally decided to run an IGA/gliadin/celiac panel and it was elevated, so he suggested a trial gluten-free diet and scheduled a colonoscopy....however it was performed after I had been on the GF diet for 3 months......so needless to say, the diagnosis was only a suspicious lymphocytic colitis with no further recommendations. Feeling better on the diet, I decided to continue it on my own. I then sought out an allergist/immunologist and actually had an "attack" while undergoing the allergy testing. After a 2 hour exam, reviewing of lab reports, and an intense patient history, this astute, wonderful diagnostician decided without a doubt it had to be Clinical Mastocytosis, targeting the gut, secondary to the gluten sensitivity--Celiac. He gave me Gastrocrom to take daily along with chewable Zyrtec and Singulair when I would have a reaction to food. Slowly, over the next months and year, the episodes became less in amount and duration of the actual episode was lessened. If I accidently ingest gluten now from cross-contamination while away from home, the familiar symptoms begin within 15 minutes, I take my meds and am able to ward off the attack usually within 15-20 minutes. We have come a long way from my poor body being subjected to hours of continuous seizures day after day!!
Unfortunately, my immunologist left this life a short time after I started seeing him and the task of finding another doctor was daunting. I found a local GP who had done extra training and was up on Celiac and started seeing him in 2006.
With that lengthy background, the latest development and concern is a significant weight gain of about 35 pounds over this last year, elevated Cholesterol(234) and LDL(163) levels, low Vit D levels(26). My Free T3 was 2.8; T4 1.4; TSH 0.77. Parathyroid Hormone-Intact Calcium 9.5, PTH-Intact 38, triglycerides 98, Calcium 9.2
He recommended a low carb intake, a 2000 IU daily Vit D and recheck in 2 months.
My question is why the weight gain, advancenent of the osteoporosis and elevated cholesterol levels when 3 years ago, I was well within normal limits in my blood work. I've been taking my Calcium/Vit D/Magnesium along with my transdermal natural progesterone with BiEst over the years. My eating habits have only changed in that I am eating healthier on the GF diet(which is low carb!) than I did in the past. I have never been a big eater and that remains the same.
I went through menopause at age 50 and expected to add a few pounds, but 35 seems a bit much. Are we missing anything here?
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