Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Gemini

Advanced Members
  • Content count

    3,560
  • Joined

  • Last visited

Community Reputation

618 Excellent

About Gemini

  • Rank
    Advanced Community Member

Profile Information

  • Gender
    Female

Recent Profile Visitors

25,525 profile views
  1. http://www.news-medical.net/news/20151215/Lupuzor-may-become-first-non-immunosuppressant-therapy-for-lupus.aspx This is what they should be doing......treatments that do not involve suppressing your immune system. They also think it may be useful in treating Sjogren's and Crohn's disease, which got my attention because I have Sjogren's. The current options just are not good enough. I am not one to take meds unless I am near death but this looks so promising!
  2. A small suggestion........for banana bread, try the King Arthur gluten free banana bread mix. Yeah, I know......it's a mix but sometimes, time is short and a mix works well. My husband and I were shocked at how good this is! it rose up high and beautiful in the oven and has a really good banana flavor to it. Really....give it a try. It is so easy to make also! http://www.kingarthurflour.com/shop/items/gluten-free-banana-bread The ATK cookbook is a keeper for every Celiac!
  3. Oat Flour making me sick?

    Yup.....what she said! In non-porous materials such as stainless steel or aluminum pans, a good washing is all you need to make the pan safe to use.
  4. Your son is very young and it is extremely difficult most times to diagnose a young child. Many do not develop enough damage to trip a blood test for conclusive results until more time has gone by and more damage occurs....which you want to try and avoid. I would definitely get a second opinion and maybe even schedule an endo. If those come back inconclusive, then I would do a strict dietary trial to see if his symptoms get better or go away. Include the gene testing also for purposes of ruling the genetics for it out. What caught my attention were his symptoms. Those are very specific to Celiac, or can be. Mouth sores, abdominal complaints and skin rashes. I had canker sores as a kid and stomach issues but no one was looking for Celiac back then and there were no blood tests. So....I ended up going to the age of 46 before I was diagnosed with Celiac, not to mention the 3 other AI diseases I acquired along the way. That should not happen to anyone. If his symptoms go away or improve greatly, then document this and take it back to a doctor for his record. The diet is not hard to do but it is not convenient. I would say a dietary trial as a last resort is important because undiagnosed Celiac can really take it's toll on people and diagnosing or ruling it out in kids can be especially challenging.
  5. I can assure you that the longer you are gluten-free, the better it gets and, unless you have other underlying conditions that complicate things, there is no reason people cannot make a complete recovery. Do not stay in a negative state of mind, although it is allowed from time to time....everyone has their bad days. There is also exceptional gluten-free pasta out there and gluten-free garlic bread can be easily made, for those who wish to have some when they are up to it. I know recovery time can be daunting for many of us but it always takes longer to heal when you do it the natural way, instead of plying yourself with meds. Good post, Questore!
  6. "Also... be careful with Bob's Red Mill oat flour... they use multiple sources and some are not certified and use optical/mechanical sorting... so your gluten levels can vary wildly from batch to batch. (If you sensitive to levels under 20ppm)" "Regardless of our suppliers' chosen methods for meeting our gluten free specification, we require that each lot is tested and confirmed gluten free before authorization for shipment to Bob's Red Mill. To ensure that they stay just as gluten free as the day their seedlings sprouted from the earth, we test each batch in our quality control laboratory when they arrive from the farm, during production and once again after they are packaged in our dedicated gluten free facility." It seems that whether you consider Bob's Red Mill to be gluten-free or not depends on how you read the statement and what people consider gluten free actually means. I should add that I do not eat Bob's oatmeal because I like a finer milled oatmeal. I have not used their gluten-free oat flour either. I tolerate gluten-free oats very well but am a very sensitive Celiac. However, reading this statement from them, I most likely would eat their oatmeal if they offered it in a finer cut. I think from reading how they process their oatmeal, they actually test the hell out of it all along the production process. You are aware that gluten free is defined as less than 20ppm's? And that it doesn't automatically mean there is that amount in their finished product? So......anything above that gets tossed and not sold to anyone. When you look at all their protocol followed, it's pretty damn good. So, they test all along the process and their finished product tests correctly to be labeled gluten-free. The vast majority of Celiac's will be able to tolerate this amount, if they can tolerate oats in general. I know sensitive Celiac's that have eaten Bob's on occasion and they have had good results. They do not test the same way that Cheerio's got bagged for doing. Cheerio's has been flagged by complaints to the FDA and I have not heard any of the same regarding Bob's products. What Cheerio's did was a joke and cannot be compared to Bob's. I am not writing this because I think they are the best oatmeal product out there, I don't. But Bob's is a reputable brand which many Celiac's tolerate quite well...even some sensitive ones I know so if their product were that untrustworthy, we would be hearing about all over the place because people would be getting sick. Hard to tell if those who have gotten sick were from oat intolerance or actual gluten contamination, unless you run it off to a lab. I know too many people who follow a strict gluten-free diet and use Bob's without issue to automatically assume their product is not really safe.
  7. James.......the link I sent you explained each test for what they test for but I do not agree on their testing protocol. I should have been more specific with that so sorry for any confusion. The test panel I posted is the Celiac panel which is normally used in the US. Tests may be called something different, depending on what country you live in. All of the tests in that panel need to be done and should not be cherry picked. They each give valuable information, as Sugarcube noted. If your tTg is indeed that high, then you should absolutely have the whole panel done...and the tTg needs to be repeated because it is so high. You may be able to receive a diagnosis on blood work alone if the other numbers in the panel track high like your tTg. The EMA is a very good test to run because in all the literature I have read over 11 years, if you have a positive tTg and EMA, the probability of Celiac is something in the region of 98% certain. Mine were both very positive and there was no doubt at all I had Celiac Disease. When doctors use the excuse that the EMA costs too much, I can hardly believe that an endoscopy would be less expensive than the other, yet they all are eager to do invasive testing. Something to keep in mind. The Gliadin IgA/IgG is an older version of the newer DGP test...which tests for the reaction to the gluten you are ingesting. The DGP is more sensitive. As far as coffee and cross-reactivity, that is not quite true. This article, although a bit involved, explains things fairly well. http://paleofoundation.com/19-gluten-cross-reactive-foods/ There is just so much misinformation out there with regards to Celiac and that makes it harder for people to learn the correct way to do it. Cyrex labs is not very reputable. Cross reactivity is more aligned with allergies but Celiac is an intolerance......completely different animal. If you wish to be tested properly for Celiac, then you have to eat more than a little gravy. Try to eat a couple of slices of bread every day, or the equivalent. You could probably be tested sooner, if your tTg result is correct. I hope you have a productive doctor's visit and he is willing to run the whole panel. Personally, this is so important, I ended up paying cash for the panel myself, years ago, because I was so sick, I would have died if I had to wait for appointments and insurance. It was worth every penny!
  8. I am a very sensitive Celiac also and would like to know if you can reference where you heard your information on Bob's Red Mill oat flour? If you do your homework, then you would know that they use certified gluten-free oats and are a dedicated gluten-free facility. They also batch test to ensure compliance and quality. If you have had problems with this, then maybe oats are not agreeing with you, for non-gluten reasons.
  9. I think that product looks pretty safe as far as gluten goes but with butane and propane and all that alcohol, don't light a match when he's putting it on! Joking aside.........I have yet to find a women's perfume with gluten in it and so I would imagine that the men's fragrance/aftershave would likely fall into the same situation. I am sensitive also and use perfume, which can sometimes get on your hands, which I then wash, but I've never had a problem! Hope I have been helpful......
  10. Hello James.......I think the first thing I would do is ask for the whole Celiac panel to be done and not just the tTg. The tTg should be repeated because it is so high, just to make sure it is correct. As to whether it could be possible for it to be that high, it could. When they test for tTg, they generally only test to a certain point because if you have a tTg that is really elevated, it only needs to be about 10 times the normal ranges for them to realize that you may really have Celiac. A tTg of 100 is considered really high and usually they don't need to see beyond that to initiate further testing. My testing went to the magic 100 number and it was given in a graph type result but the graph line went well beyond the 100 number and the numbers beyond 100 were not labeled on the graph or included. Kind of annoyed me because, judging from the way the graph tracked, it could have been much, much higher and I kind of would have liked the actual number. You might be lucky that they give you the actual number. But have them repeat the test, along with the others they should have included. They would be as follows: Anti-Gliadin (AGA) IgA Anti-Gliadin (AGA) IgG Anti-Endomysial (EMA) IgA Anti-Tissue Transglutaminase (tTG) IgA Deamidated Gliadin Peptide (DGP) IgA and IgG Total Serum IgA https://labtestsonline.org/understanding/analytes/celiac-disease/tab/test/ This link will explain the testing for you. The decision to have an endoscopy is a personal one, based on your ease or difficulty in obtaining a diagnosis in general. I understand your feelings about being under anesthesia.......not my favorite thing to do. I did not have one as my blood work was all extremely positive and I was very sick with classic and obvious Celiac symptoms. My response to the gluten-free diet was nothing short of phenomenal. However, you seem to have mild symptoms, which does happen with some people. Would a very positive blood panel make you believe it to the point where you follow the diet religiously? That is what you would have to do. Having the endo might cement the fact further if it came back really positive also. I have never regretted my decision to not have an endo. I follow the diet as I should and have never cheated. I become so sick, I never want it to happen again, ever. My antibodies were all in the normal range 1 year later and all of my symptoms, including the ones I had no idea were linked to Celiac, were gone in 3 years. I was 46 when diagnosed. Forget Cyrex labs. To be tested for Celiac properly, insist they do the above panel on you and make sure you gluten up for testing, although if that tTg level is real, that might not be necessary. I hope this helps you to find out if you have Celiac and if so, don't sweat it. We are here to help with the diet and you'll be just fine. Good luck!
  11. Pizza Chains & oven

    There are places that are safe for gluten-free pizza but not every establishment has the same protocol. I have one place that does it right and I am extremely sensitive and have never been glutened by them over visits spanning almost 10 years. The place is not terribly close to where I live so we only get pizza occasionally. They cook the gluten-free pizza separate, meaning they use the same ovens as gluten pizza but only cook the gluten-free pizza alone. They use an aluminum pan to cook them on so it never touches the surface of the oven floor. They prepare it in a separate area of the kitchen but in the same kitchen. They have done training concerning cc. This is not strictly a pizza house but a pub style restaurant serving a full menu. They also do not advise ordering anything else off the menu except salad and pizza. This is because they have a smaller kitchen and only follow protocol for allergy meals on these 2 items. It would be too difficult for them to serve full meals to Celiacs and guarantee safety. I thought it pretty good they are so open and honest about their practices. Never gotten even the least bit sick from their pizza. The bottom line is you have to ask about their practices and knowledge and training before making a decision. Do not write them off because of fear...some places do a very good job with it.
  12. if it were my child, I would feed her gluten whenever possible until she has further testing. The problem with going for a biopsy while gluten lite is that the damage may be very, very patchy and they will miss it and tell you she is fine....but they will keep an eye on it. That is not good enough. She has a slightly elevated tTg while eating gluten lite and weight loss. They need to do the testing correctly. Maybe feed her a lot of gluten for a month and then go for another blood test? If she has Celiac and starts upping her gluten dramatically, it's bound to raise her tTg even higher. If her symptoms worsen, then that certainly would add to the diagnostic criteria. I understand her reaction to this. Everything is huge when you are 9. But it really is getting easier and easier, compared to 11 years ago when I was diagnosed. It is just so important to know, one way or the other.
  13. With your family history of diseases closely associated with Celiac and your second daughters diagnosis, even though your other daughter has only a mildly elevated tTg, it warrants further testing. She's losing weight too. I am sure if she were eating a full on gluten filled diet, her blood work would be more elevated. She really needs to find out if she also has Celiac, as you know. She may not like it but it is highly likely, from what you have stated, that she does. Like everyone else, she will adapt and live a fully functional life. If she is already eating mostly gluten free, then the transition should not be too hard for her. But find out first because it's important! Good luck!
  14. Many people have vastly different symptoms but the hallmarks are the dry eyes and mouth. I do not have any muscle or joint pain whatsoever but I also exercise hard and that has really helped me feel better. The gluten-free diet has also done wonders for my symptoms so that convinced me that Sjogren's is tied heavily with gluten exposure. I still have symptoms and it's the dry eye and mouth that are the worst but it has improved significantly with the gluten-free diet. I was so much worse before I went gluten free. You are correct in that most doctors have no clue. They only end up looking for it when you have severe symptoms and then if the blood work comes back negative, they will tell you that you don't have it, which is incorrect. Antibodies don't always pop the blood work.
  15. Doctors Selling Info On Celiac?

    "She is a Medical Doctor and therefore has been trained to evaluate research studies. She, as well as several other researchers, have studied thyroid problems and other autoimmune disorders and finding very helpful information in the literature for us patients. Our regular medical doctors are ignoring these bits of helpful information that helps us heal because it does not involve a new pill to fix it. It mostly involves healthy eating and avoiding certain offending foods. Where's the "quack" in that?" Debbie......I have 4 AI diseases and have been managing them for a very long time. I also have a functional medicine MD who has been very helpful......she was actually the one who I asked to run the Celiac panel because I did not have a trustworthy PCP at the time. However, mostly everything a Celiac patient has to learn to manage this disease well can all be learned for free. You said it yourself regarding healthy eating and avoiding your known allergens....that doesn't cost anything except for food. There are also so many medical charlatans out there who charge for information that can be gleaned from surfing the internet on reputable medical sites....or asking a real Celiac expert on your next appointment. As for the exploding amount of information on this topic and treatments..........well, there are exploding amounts of information but a lot of it is bunk with no basis in real information about Celiac. Treatments? There are a few in the pipeline but I wouldn't hold your breath. None of them are intended for people to eat gluten again, just guard and prevent the autoimmune reaction from cc. That would be great for travel but the only real treatment for Celiac is a strict gluten-free diet. That has not changed and will not change for a very long time, if ever. This forum just wants people new to this diet to access reputable information so they won't get suckered into spending money on information they don' have to pay for. If you find her website helpful, that's great. But after looking at her website and seeing her eCourses on gluten for $39.00? I don' think so...........