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mamasaidso

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About mamasaidso

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  1. Thanks for answering. My daughter had negative blood work and positive biopsy. Doctor didn't believe she had celiac until I was tested and had positive blood work and biopsy. The rest of my Irish-Italian family has symptoms galore and in no rush to get tested. I think they are getting tired of me pushing, so backed off (for now). My daughter and I each see different endocrinologists and neither of them tested T3. I will get that that resolved soon. I have appt with new primary and will see if he can help with additional tests and a scan of thyroid. I'm one of those claustrophobic types and not being able to swallow without effort is making me a little panicky. There seems to be different camps of docs and how they approach test results. Somehow my daughter and I need to find the right camp.
  2. I posted last week about my "normal" large thyroid and elevated antibodies. Was diagnosed with Hashimoto's, which I suspected would happen. Still waiting for hard copy of test results, but discussion with doctor's assistant today gave me a diagnosis and she said my antibodies were at 70, TSH 1.95, T4 5.7. The Free Thyroxine Index was 1.7. They didn't do a Free T3. There is no treatment plan at this point, even though I have symptoms. This is so discouraging. Spent better part of the day trying to find a doctor who treats symptoms along with blood work and tests Free T3. Most alternative doctors do and then we have the insurance issue. I didn't think it would be this hard to find someone in the Atlanta area especially with all these great hospitals. This is where I need help. The pressure from the enlarged thyroid is making it difficult to swallow and it feels like it is pulsing. Have had an ultrasound, but are there any other tests I should be asking for, CT scan or MRI? Any advice would be greatly appreciated. Thanks
  3. Thanks for responding. When I receive blood test results in mail I will post them. My TSH runs around 2.058 and I'm not taking any medication. Nurse didn't tell me how elevated antibody test was, but I'm really wondering. I've been so dizzy the last couple months. Thought my B12 was low again, but it's okay. Had a bacterial infection that lasted seven weeks and was really run down after that. Got a dark brown staining on my tongue after recovering from the infection, and it's still lingering, but not as dark. Now that's kind've strange. That same week I almost passed out and pushed my endocrinologist to see me and to have labs done. I thought for sure it would be adrenal related. Will look into the saliva testing for sure. Thanks again,everyone.
  4. I'm really wondering what's going on with thyroid and what to do next, if anything. Have had tightness in throat and thyroid feels like it's pulsing most of the time. Had ultrasound, which indicated a large thyroid, but nothing else out of the norm. Blood work came back normal, except for elevated antibodies. Have had increasing fatigue and weight gain and just feel terrible. Doctor wants to recheck levels in six months. He also tested for cortisol and did dexamethasone suppression test which was normal. AM cortisol was high, but other testing okay. Have raised area over left collarbone which appeared in last six months, so he wanted to rule out Cushings. Diagnosed celiac in Feb last year. I really thought I would feel better by now. It's a little depressing. Anyone have similar experience with this?
  5. I really believe there is a link between the two. I was diagnosed with celiac disease last year and had cataract surgery at age 52 for one eye and developed it in other eye and had surgery again at 57. Have sensitivity to sunlight and doesn't seem to be quite as bad now that I have been gluten-free a year. Also have really dry eyes. Don't smoke and no one has had cataracts in family. Was always puzzled at why I developed them, so really encourage my daughter to wear sunglasses as she has very pale blue eyes and fair skin.
  6. Just read the back of bottle and it said to check with physician before taking if you have an autoimmune disease. I've read the threads on sleep and melatonin but no mention of this. Hope it's okay to take because I had a really good night's sleep last night and it's helping my daughter, as well. Will check with our celiac specialist tomorrow just to be safe. Sweet dreams!
  7. I recently ordered some lipstick from Afterglow after seeing advertisement on the forum. It's really wonderful. A little pricey, but totally gluten-free and no chemicals. It's worth the price. I can't wait to try some other shades. If you're not sure what shade to order you can talk to consultant on line. Nice company to deal with.
  8. I was diagnosed with celiac disease in January 2008 at age 58. My osteoporosis was in high risk range for hips and spine on dexa scan two years ago. Last year I tried to find an alternative to the Fosamax D my primary doc had prescribed. I decided to see if the gluten-free diet made a difference before I went the drug route. I had read in Dr. Peter Green's book on celiac disease that drugs for osteoporosis should not be taken while you are healing on gluten-free diet. I am seeing Dr. Cynthia Rudert in Atlanta and she reinforced that as well. It can be dangerous for celiacs and decrease your blood calcium level. I went to an endocrinologist and had all my levels checked including vitamin D levels. Also had my magnesium checked. I faithfully take my calcium in the am and before I go to bed. I take an vitamin D supplement with evening calcium. I started weight bearing exercises and yoga. My recent Dexa scan done November 08 showed no osteoporosis in spine, it was normal. My hips, which were worse, showed mild osteopenia. I couldn't believe how quickly it changed especially for my age. My hips used to ache constantly and had to have cortisone shots. I have no more joint pain anywhere. I can't believe it. Needless to say, I am very relieved that I could do this naturally. Hopefully this info will be helpful to you.
  9. I received my Dexa results via a PDF file. Didn't even have the experience of watching the look on her face. As far as she is concerned, she probably thinks the results are from medication from a prescription I never filled for Fosamax D. I thought about emailing her about it, but then thought, Nah. I'm not even sure she reviewed it or compared it to previous scans. With an office full of "assistants" and communications through "patient portals" I pretty much give up on the one to one experience with her. Kind've gives primary physician a new meaning.
  10. I was really fretting over getting results of recent Dexa scan. Thought for sure it would be bad as last two showed a steady decline in bone mass. But, after being gluten-free since January and being faithful about taking calcium and starting weight-bearing exercise my test showed no osteoporosis in spine. It was completely normal and the severe osteoporosis in hips has been reduced to osteopenia and made a big improvement. I am so relieved about this. For a time I took Actonel and saw no improvement. My doctor was steering me toward the treatment with daily injections for two years. I wanted to give myself a chance to heal and it seems to be working. I have researched like crazy these last eight months and hound my doctors about vitamin levels. Finally have a handle on what I need and taking steps to improve my health. Have been on cloud nine all week. More determined than ever to maintain this and keep working on the osteopenia.
  11. After being gluten-free since diagnosis in February I decided to go to endocrinologist for my osteoporosis. He did several tests including a 24 hour urine calcium test. My level was 13 mg which was considered low. However, he said test result meant I was actually absorbing more calcium and not to worry. I am worried about taking Forteo or any other drug if calcium level that low. I have quite a few cardiac arrhythmias and have bounced around with so many doctors this year I am worn out. Waiting for my dexa scan results next week and bet it won't be pretty. Recent celiac test still showed positive, tTg IgA down to 5 U from 71 U in February. Getting there slowly. Has anyone else had this test? On the report it stated that anything under 200mg indicated a low calcium diet, so 13 mg must not be good. I do have an appt with Dr. Cynthia Rudert in November and hopefully she can recommend an endocrinologist that is familiar with celiac.
  12. My 21 year old daughter and I have different gastro docs. She really likes hers, but I am having some doubts. She had first endoscopy last October which showed totally flat villa and had negative celiac panel. He was not convinced she had celiac even after I had positive bloodwork and positive endoscopy done this spring. She just had second endoscopy with more biopsies in that area and also to check for complications after her gallbladder surgery in February this year. He said results of this endoscopy showed blunt villi in area of stomach not associated with celiac. I'm thinking, Huh? Her B-12 is in low 300's and she asked for shot, which he didn't do. So now we are off to Labcorp today for more bloodwork and MRI for her symptoms. She knows I feel better with the diet and B-12 shots. He is being cautious because of other symptoms and not pushing the gluten-free diet yet. She doesn't want to switch, but I am really frustrated. How can flat villi not be celiac?
  13. Hi, Just purchased some Desert Essence organic face wash and eye serum. It also says it's Age Reversal, but haven't seen any of that yet. It states on product that it is organic, wheat and gluten-free. Also not really expensive. Each product under ten dollars. If you go to their site, it will show product and info. Found it at The Vitamin Shoppe after looking around on internet. Was using Kohl's Good Skin line, but found barley on ingredients. It's tough to find good products without chemicals and not pricey. Good luck on your search.
  14. Really like Villa Massa Limoncello. After a trip to Italy last May decided to make my own and it's so good. Can make three bottles for the price of one. Found the recipe on the internet and it's easy, but you need to be patient. The recipe calls for vodka (I use potato vodka, Blue Ice) and Everclear. Peels infuse for 40 days and then add sugar water and let it sit another 40 days or so. We never let it sit that long. Just tried a different batch with organic Meyer lemons from Whole Foods. It rocks! Plus it's just fun to make your own.
  15. Hi, Thanks for responding. I'm wondering if we are getting glutened, like you said, and just don't realize it. Am careful eating out. Chinese restaurant we love to go to is careful to tell me about menu, but wonder if that is it. I've had a panel done recently and B-12 was at low end of normal and iron was great. We eat home most of time and I'm gaining weight on gluten-free bread and choco chip cookies. I did have severe blunting and damage, so might just take some time to heal. I don't really eat any dairy because I don't tolerate it. Took soy out of diet and use organic rice milk instead. Do you think getting tested for food allergies might help? This certainly is a learning process and gastro doc was right. It's a tough diet. My daughter is finally getting used to diet. Funny, when I make sandwiches for rest of family using wheat bread I don't even like the smell of it. I do wash my hands after handling their bread. Could that be it? I think we're getting exposure somewhere. Okay, now I'm paranoid.
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