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About sdlane

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    Busy gal who LOVES traveling, scuba diving and tennis. Even better if I can dive and play when on vacation! Autoimmune issues: Graves and Celiac.
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  1. By inflammation marker, do you mean the C-reactive protein CRP test? Mine dropped from 17 to 10 when I went gluten-free. Acute inflammation is 5. I demanded a referral to an allergist because I'm super gluten-free strict, but I was still feeling terrible. Turns out I'm allergic to almost everything but wheat. Go figure. A severe reaction to peanuts, oats and almonds is the worst! I travel a lot for work and those are my usual go-to items when I'm not at home. With all that being said, have you tested for allergies that might be increasing your systemic inflammation?
  2. I appreciate the input...thank you! Never head of the pumpkins seed powder...gives me something to google while waiting for my doctor to grace me with his presence. He's always about 2 hours late for my annual appointments. lol Have you seen CeliAct before? They stink and are hard to swallow, but I thought it might be worth a try. It seems to have almost everything you mentioned above. https://celiact.com
  3. 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
  4. I was in Zambia, Zimbabwe, Botswana & South Africa this summer, with very few problems. I brought a ton of Kind bars, Justin's peanut butter packets and Costco beef jerky just in case! I get the Kind Bars and Justin's on Amazon Prime. Africans eat a lot of meat (try the Kudu, it's awesome!) and veggies. Stay away from sauces. I don't recommend eating the Mopane tree worms, even though they are gluten-free. I tried to get out of it, but my tour leader said they were gluten-free and I had to try it as part of the experience....ewwwww! lol gluten-free is quite popular in South Africa...they call in the Banting diet. Maybe they know it up north as well? I would definitely stay away from chips because you have no idea what else has been in the same fryer oil. One chicken nugget and you're toast. I've never had a problem with rice. Have a great trip...Africa is amazing!
  5. Not sure where you're located, but I've had great success with the protein style burger at In-n-Out (with ketchup and mustard instead of the secret sauce) and fries. You MUST tell them he's a Celiac, so it's made with fresh gloves in a different part of the kitchen. Fries are usually safe as they don't have any other products in the fryer that contain gluten. I also eat at Chipotle a lot too and the same....tell them he's a Celiac and they'll wash their arms/hands, change gloves and use that one "safe" person to follow you down the entire line instead of handing you off from person-to-person. I've never been sick there either. All their spices are gluten free...the only thing they have with gluten in it is their tortillas. As far as traveling by car/plane, I usually bring hard boiled eggs, gluten-free Kind Bars (https://www.amazon.com/gp/product/B007PE7ANY/ref=oh_aui_detailpage_o04_s03?ie=UTF8&psc=1 and Justin's peanut butter packets (https://www.amazon.com/Justins-Peanut-Butter-Classic-Squeeze/dp/B00E1XPY3A). In fact, I keep the Kind bars and peanut butter in my purse 24/7. Good luck and have a great trip! xoxo
  6. These fools yell at me when I eat my safe gluten-free food in the Club Lounge, where nothing is labeled safe to eat. The only gluten-free thing they certify is their Bloody Mary mix. I kid you not! lol. Anyhow, I quote Section 3 of the ADA, but to no avail. I am going to write a nice letter and send it to the Chicage headquarters with my concerns. Case law supports a Celiac being allowed reasonable accomodation by allowing them to bring their own safe food into a public or private location. Has anyone had any good/bad experiences with airport lounges or other private clubs? I was given the number for the Department of Justice as a resource for enforcement of the reasonable accomodation standard. It's embarassing to get in arguments with staff, but I shouldn't have to, especially when I'm in here for hours on end and starving. Thanks in advance for your thoughts!
  7. Thanks for the replies! I changed from Synthroid to Tirocint for my thyroid meds because Synthroid's filler has gluten. My Cytomel was ok. Today I found some raspberry flavored sublinguals for the B12 and drops for the D3. The gal at the health food store said the drops could be put on my skin to be absorbed that way. Healing commence! lol
  8. I am recently diagnosed and just got my labs back ahead of my first post-diagnosis appointment in two weeks. I'm deficient in B12, D, magnesium, zinc, and more....the only thing that's ok is my calcium, which is funny because I had several parathyroids removed when I had my thyroid out five years ago. Anyhow, my question is this. I can take all the supplements I want, but if the villi can't absorb the nutrients until they grow back, how will the supplementation help me now? Do people get injections or something else until the villi grow back and start absorbing again?
  9. So I ended up with plenty of antibodies. Got my labs back this week. Thanks for your replies. The GI I see at University of California, San Francisco also ordered a colonoscopy. That was fun..not! Maybe that was to rule out Crohn's? Regardless, it's official.
  10. I agree with Runner.....DO NOT STOP EATING GLUTEN. In fact, eat more. Sounds like a primary care physician told you all this? Demand a referral to a Gastroenterologist and get that endoscopy....but have it done a few months after you've started eating gluten again. Knowing or not knowing is truly a life or death decision. I had 12 biopsies and was diagnosed easily at Marsh 3a before I even did the blood tests. Best wishes to you! ❤️
  11. I had an endoscopy last month which show be to be a Marsh 3a category. I'm gorging on gluten until the end of the month to make sure I'm fully glutenated (is that really a word?? lol) so the antibodies are heavily present and I don't get a false positive. In terms of moving forward, I will obviously cut out the gluten once I'm done with my challenge. I've already cut it out of my shampoo, conditioner, makeup, body wash products, thyroid meds, etc. In fact, my whole household will go gluten free with me so I don't have to worry, except for when I travel. What are your doctor visit and testing protocols once you start the healing process? Will I need an annual endoscopy? Monthly, quarterly or annual testing for antibodies, iron, magnesium, zinc, B12, D, etc? Just trying to budget and plan. Thanks!
  12. When I feel I'm about ready to let loose on some idiot at work, I go to a quiet place for 10 minutes and do a meditation with my Headspace app...basically just guided breathing exercises. I downloaded it from the iTunes store onto my iPhone. I also listen to it with my sleep mask on at night when my mind is racing too much to go to sleep. I'm always out within a few minutes! Now staying asleep, that's another issue altogether! At work, I also turn on Pandora on my laptop and listen to either 40s music or Jazz...or chill or spa, or.... lol I can't wait for this challenge to be over so I can get off the gluten. I have become so negative and miserable for no apparent reason, it's good to know that it's probably all gluten related and will go away when I can get off it for good. Keep your chin up...you're not alone! <hugs>
  13. Me again...a lot of doctors don't know much about, or like, Cytomel. Make sure your doctor adjusts your thyroid meds based on your symptoms, not just your labs being "in range." Range means nothing when you feel like crap. I keep my T4 high and my T3 in the middle...that's when I feel the best and not all lethargic, with symptoms as you were describing above, save for the acid reflux. I assume you still have a thyroid, which may make finding your perfect range a little more challenging. Do you have autoimmune thyroid disease? The best advice I can give you in that regard is don't settle for a doctor not listening to you. And go to an Endocrinologist, not a GP who "thinks" they know everything about thyroid function. There is a reason you have an extra four years of medical study to specialize in dealing with them! lol
  14. Hi Tiger, Yes, your thyroid meds may contain gluten in the filler, not the actual medicinal component itself. Pre-Celiac diagnosis, I took Synthroid 225mg and Cytomel 25mg. The Synthroid brand name does contain gluten in the filler, whereas the Cytomel does not. The filler is the actual white (or colored) substance that you would call the "pill" itself. It is combined with the medicine to form the actual pill. With my new Celiac diagnosis, the first thing I did was have my pharmacist check the ingredients for all my meds. Only the Synthroid had gluten in the filler. So, my doctor switched me to Tirosint (which is a non-guten gel cap and the meds are in water) http://www.tirosint.com. The Cytomel is fine. Since it sounds like you are taking a generic, ask your pharmacist to check the ingredient list from the manufacturer. I have Graves and Celiac now...like I really need two autoimmune diseases. lol I had my thyroid (7 1/2 inches long!!), a parathyroid and three lymph nodes removed 5 years ago. After leaving my small town doctor for a real Endo at UC San Francisco, I'm back to feeling a lot more like myself. Well, as far as not having a thyroid is concerned. lol On a side note, depending on how sensitive you are, there can be gluten in your toothpaste, sun screen, shampoo, conditioner, deodorant, etc, so make sure you research that stuff too. Crazy, huh? Best wishes to you in staying healthy! Stacy
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