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About Ivy

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  1. I have had handfuls of hair during shampooing. Apparently for me it's alopecia. Probably related to my fibromyalgia, or not, who knows? I have yet to have any bald spots, and it does seem to grow back. Shedding seasons just seem to be extreme sometimes. I have found two things helpful. Vitamins (B's including sublingual methylcobalamin) and monitoring my stress levels. Also quit using shampoos with SLS and excessive alcohols.
  2. I have a very long history of duodenal ulcers. I have been on proton pump inhibitors for at least 18 years. They check every time I've been scoped about every 4 years, but no pilori. No medicine as cause for explanation. Have always been told that I plain pump too much stomach acid. Have been gluten free about 4 years. Recently removed corn from diet also. With most I've known, it is true that at least one other food intolerance will pop up. Took me a while to figure out it was corn. Think I may finally be ready to try going off proton pump inhibitors again but frankly am not holding my breath. Tried a year and a half ago, didn't go well. I don't think the two (celiac and ulcers) are related in my case. As for a restricted diet, I have a gluten-free house and I rarely eat out. Have taught my two adult kids to carry their snacks so they can "join in" when friends decide to stop somewhere to grab a bite. There are many good cookbooks out (like Gluten-Free Baking Classics by Annalise Roberts) and a wealth of good recipes on the web. Good luck.
  3. Does anyone know what kind of Doctor I need to be looking for to treat severe osteoporosis (brought on by celiac/vitamin D deficiency/ etc.)? What kind of qualifications I should be looking for? How will I know if the Doctor is any good? Thanks
  4. Could you please tell me if they do any follow up and treatment, look at related disorders, or do they just diagnose? Thank you.
  5. There's nothing wrong with venting....we've all earned that right! I just went to a GI dr. that supposedly "knows" Celiac. I have a check back in 2 weeks but in the interim his nurse called to inform me that the biopsy from the endoscopy was back and I don't have Celiac. I didn't know he was testing me for celiac and I've been gluten free almost 4 years! (I'm giving him the benefit of the doubt that perhaps the call was a mistake, but this could be really interesting.) The University of Chicago Celiac Disease Center offers training to Dr.s, maybe I'll suggest it to this one. My favorite question you all have listed so far is "Do you believe me?" So, having given this a good deal of thought, I would sidestep the questions of can the Dr. dx celiac and ask questions that would tell me if they're really ready to "treat" one: 1. If I am dx'ed with Celiac, what follow up tests will the Dr. do? (vitamin levels, serum calcium, thyroid function, etc.) 2. What Celiac skilled nutritionist/dietician will Dr. refer me to? 3. What tests and how often will Dr. check to see that my gut is healing? Diagnosing is one thing, but treatment is another, and I have yet to find one who can do either. (I live in Kansas and feel like I'm looking for Oz most of the time )
  6. Just wanted to thank you for posting the link. It was a real aha moment for me and helped me figure out how to approach my idiot doctor. Ivy
  7. Thanks for all the input. What the nurse said was my results were back, that the doctor said that I don't have Celiac but that I could continue on the gluten-free diet if it makes me feel better because it frequently helps with IBS. (I didn't know I had IBS. Don't have symptoms of IBS.) I said but I've been gluten free 3 years - are you sure that doesn't affect test results. And she said "That doesn't make any difference with this test." I tried to ask some other questions and she said I could talk to him at my check back in 3 weeks. This ought to be good...I don't even know how to approach this. I went in because I think I've been on protonix too long and it's making me feel ulcery. He said it was probably lactose intolerance? I know people with lactose intolerance, I haven't had those symptoms. What troubles me is I think my new general Dr. doesn't believe the Celiac and requested a confirmation when he referred me to the GI Dr. I started 4 years ago with a different idiot doctor who sent me to a surgeon for a endoscopy. By the time I got into the surgeon, I had begun wondering about celiac. I asked and he said it wasn't possible because I didn't have "greasy grey floating stools." He refused to test for it. Ok, so I get back to my regular doc and he says ...you can try going gluten free and see. Yes, now I know how wrong that was. For the first time in years I wasn't going to bed with a rock in my gut, I could control my weight, I only had "output" once or twice a day like regular people, the rash around my mouth that I had to put cortisone on daily disappeared, my back quit itching, my ulcer medicine seemed to magically work again and I didn't need the Reglan he told me I needed to take indefinitely, and it even explained the early onset of horrible osteoporosis. I go back to my Dr., hadn't been in awhile and he can't believe the changes in me. He decides "we need confirmation of this" and orders the antibody tests. I took him in information from Columbia U Center for Celiac showing an antibody test won't show anything on someone who's been gluten-free a year, and so he did the genetic. It came back positive. So I had my kids who are young adults tested. Both kids hit across the board on the antibody and genetic. Their doctors said a biopsy wasn't even necessary, there was no doubt. But I guess I'm self diagnosed. Anyway, for other reasons I ended up with a new Dr. who apparently didn't accept the celiac dx either because I didn't even know the GI Dr. was testing for celiac when he did the biopsy. I'm a woman in her 50's on protonix so I guess it must be IBS, right? I'm so frustrated. I will go in to get the results of whatever else he did, but this ought to be good. The lactose elimination he had me doing made things worse...do I expect him to believe that... I did call the office and request a copy of the tests. I don't know how or where to find a better doctor.
  8. Thank you both so much. I thought I was going to loose my mind today when his nurse called and said, "your biopsy results are back and you don't have Celiac. But if it makes you feel better you can continue on the gluten-free diet. It frequently helps with IBS" I said, "But I've been gluten-free 3 years." She said, "It doesn't matter with the biopsy." I didn't even know the Celiac was in question or that he'd be testing for it. I don't have and never have had IBS symptoms. It's a long story as to how I was originally dx'ed. Silly me, I figured testing positive on the genetic, my medical history and having both my kids test positive with flying colors on the antibody and genetic tests was sufficient. Does anyone have any "expert" information anywhere I could print out to take to him and challenge him? I really don't need a wrong dx on my med record right now and his "findings" do nothing to help figure out what's wrong with me right now.
  9. Please can anyone tell me any information regarding the need for a gluten challenge with a biopsy? I'm in my 50's and without too long a story, I saw a new GI Dr. who decided to biopsy test for Celiac during an endoscopy. The results came back and he told me I don't have Celiac. I have been gluten-free over 3 years. Does anyone have any information about the accuracy of this without a gluten challenge?
  10. It had been a couple of years since I went to the Whole Foods site and read their gluten free information. Recently I purchased some of their 365 brand, packaged - as they do not recommend we (celiacs) use the "bin food". The labeling was lacking a bit, it had declared allergen info, but nothing on gluten really, so I went to their site. Sifting through the double-speak of fine print they state "Whole Foods Market Private Label does not gather shared equipment information, because it is the manufacturer's legal right to change equipment used for production (as long as GMPs are used). We do gather shared allergens in a manufacturing facility, and this information is reflected on the label." What exactly does this mean? Isn't that pretty well a blanket CYA for us on food not labeled gluten-free? In another section, they have a cross contamination disclaimer, very CYA. I should add that I have a problem with trace amount accumulation, meaning it may not hit me the first day or the second, but after a week...it's like a slow slide back to being glutened instead of an immediate reaction. Does anyone else have this happen? Anyway, we aren't entirely covered by allergen labeling are we? I mean just because there's no wheat doesn't mean there isn't gluten does it? Being sensitive, have I hit that point where unless it is labeled gluten-free AND "Processed in a dedicated facility" I have to worry about if it's safe? GMP just means maybe ok, and if they don't have to list other sources of gluten because they're not on the allergen list, where are we? Thanks to anyone who can input on this. Ivy
  11. I learned the hard way on the Whole Foods bins too. I remember reading a disclaimer somewhere by them that they don't recommend use of the bin foods for us - not gluten-free. Which I think stinks personally. But then a few weeks ago I was also less than thrilled to see spelt noodles in the middle of the gluten-free noodle section. I also had some trouble with sunflower seeds when my stomach wasn't quite good yet, also ate too many - unshelled it's easy to do Pumpkin seeds (pepitas) seem to be a little less fibrous I think. Have asked for help finding gluten-free seeds and nuts a few posts down. I thought I could get away with the Lays Natural potato chips too. Alas, it's not the oil, it's cross contamination. A lot of people on here have said so. Ivy
  12. Does anyone else tire of looking for food to eat? I need to know if anyone has found a good source of gluten-free raw nuts and seeds, bulk quantity if possible. I have a corn problem apparently in addition to the gluten and so I roast my own. Commercial nuts use what is called best blend, it's listed as salt but is a corn/salt blend so it sticks to potato chips, nuts, etc. Whole Foods has bin contamination issues where I shop. Also, I am tired of crunchy rice cereal. Does anyone know of gluten-free puffed rice? Thanks, Ivy Having another one of those "It's all about food" days.
  13. I don't know the exact answer to your question, only a direction to head you. Most universities have an ADA compliance office/ officer. Otherwise, where I would start is with the office of civil rights at the Dept. of ED. 1-800-421-3481. Mediation of some sort should be possible, there is a difference between room and board. Most places will want to avoid a civil rights complaint. Third party loans are very hard to come by right now, you've been caught in the change of politics unfortunately. I'd do some web searches to look at what experts are advising (don't get snared by some off the wall gimmick - stick to experts). A TA position might fall under the same. Although why you would be denied on that basis is truly strange. As for regular employment, it would be the same, the office of civil rights with the Dept of Labor. I don't know how to contact them. And part of this is dependent on how functional these offices have become in recent months. Good luck. Ivy
  14. Went through the standard mega dose of 50,000 units once a week for many months. Then the Dr. moved me to 1000 a day. My pharmacy amazingly enough carries Gluten Freeda's which is D3. Dr. retested after two months of 1000 a day and levels were good. Undiagnosed too long, I have permanent damage. With malabsorption, I think it's a good idea to have nutrient levels checked every so often. D deficiency isn't unusual in the non celiac disease population. Ivy
  15. I understand the lesser of evils and GERD, teaching myself to sleep on a wedge . The only thing I know long term on proton pump inhibitors is that it can lead to more food sensitivities. I didn't know if anyone else knew of anything else. I read the article AliB, thanks. I did a lot of thinking about what exactly could have changed and I think it's corn. I've been letting corn creep back into the diet. Hard not to. I guess that would increase carbs wouldn't it? Oh well. So I'll start there. Logic just told me that with celiac disease being immunological that FM could be susceptible to foods causing greater inflammation. ...Just so long as it's not chocolate
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