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nasalady last won the day on November 18 2016

nasalady had the most liked content!

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About nasalady

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  1. Hi kelliac, My gastroenterologist gave me a clinical diagnosis of celiac disease even though my tests were negative (blood work and biopsy). I have the HLA DQ8 marker, reacted very strongly to a gluten challenge, and have family members with celiac disease, including 3 of my 5 grandchildren. He said that my prednisone and Imuran would suppress antibody production and allow my villi to re-generate. I guess the bottom line is that we need to listen to our bodies. How do you feel when you eat gluten? How do you feel when you don't? If you feel better gluten free, then you have your answer! It doesn't really matter whether they call it celiac disease or gluten intolerance because the treatment is the same for both: the gluten free diet! Good luck with everything! JoAnn
  2. I think that you already have a good idea there....get the blood test done but be prepared for a possible false negative. One of the best resources for how clean your kitchen should be and simple things to eat for the first couple of weeks that I know of is the following post on Karina's blog: How to start living gluten free Take it easy....identify things that you eat right now that are gluten free! Do you eat steak? eggs? vegetables? potatoes? rice? All of those things are naturally gluten free. Raw, unprocessed foods are best because when seasonings are added you can get hidden gluten in there. But Karina says it best...please read the post on her blog and I think that will give you good info to start with. If I were you, after the blood testing is done, I would go gluten free for about 3-4 weeks then try eating gluten and see how you feel. If you feel better without gluten and worse when you eat gluten then that's really all you need to know, IMHO! Good luck with everything!! JoAnn
  3. Hi Irisheyes, As previous posters have said, the short answer is YES. Celiac disease is a very complex disorder; most people think it only involves the GI tract, but researchers have found that celiac causes the body to produce antibodies against bone, skin, and even the brain! Some or hopefully all of your symptoms may (eventually) go away on the gluten free diet. Like many of us, you may be sensitive to more than just gluten....other possible culprits include dairy, soy, corn, etc. Some are so ill when they start the gluten free diet that it can take months or even a year or two before all of their issues go into remission. This has been mentioned before, but I will reiterate: if you want to be ACCURATELY tested for celiac disease, i.e., have blood tests for the autoantibodies, etc. that go with the disease, and/or an intestinal biopsy, you MUST continue to eat lots of gluten until all testing is done. You can go gluten free AFTER you finish the tests. Now, as to the link between celiac disease and other autoimmune conditions, medical researchers have discovered that untreated celiac disease can actually "open the door" for other autoimmune disorders to develop. Here is a great article on how this happens: Zonulin and Celiac Disease. Many of us have multiple autoimmune diseases, in fact the older we are, the more of them we have, as a rule. Take a look at the list of autoimmune diseases in my signature; I wasn't diagnosed with celiac until I was 52. Of course, I'm a bit complicated because I also have Lyme disease....Lyme disease can ALSO trigger autoimmune diseases and fibromyalgia. But I do blame celiac for at least half of my other conditions!! I suspect, from your name, that you're either Irish or of Irish background. Me, too. FYI, the Irish have one of the highest rates of celiac disease in the world. And they're no slouches at developing other autoimmune diseases either! The luck of the Irish at work, no doubt! Remember to keep an open mind and do lots of research for yourself!! You may have more than one disorder there, that always makes things complicated. Good luck with everything! JoAnn
  4. Your doctor is wrong. You have to eat LOTS of gluten until after all tests are done (including bloodwork and intestinal biopsy) if you want accurate results. The more gluten the better! You can go on the gluten free diet the day after testing is done....you don't have to wait for the results!
  5. nasalady

    Doctor'S "Diagnosis"

    Hi Nutralady, Celiac disease is closely correlated with MANY other autoimmune diseases, particularly the thyroid ones (Hashimoto's and Graves Disease). We have all of the above in our family, plus lupus, Addison's disease, rheumatoid arthritis, autoimmune hepatitis....you name it, I'm sure I can find a cousin of mine who has it. In my case, it's my father's family that's "riddled with" AI diseases. Celiac disease is notorious for "opening the door" for other AI diseases to develop. For more information on how that happens, you might want to read this article: High zonulin levels in celiac disease can lead to other autoimmune diseases Good luck! JoAnn
  6. It can take me anywhere from 8 to 72 hours to react to gluten. Everyone is different. Some people react VERY quickly (minutes), others don't. If it were my daughter, I would assume that the diarrhea was a reaction to the gluten; that IS the classic reaction, after all. And I would believe her physical reactions to a food over anything told to me by a medical professional .... you have to go with reality, with what you see with your own eyes, not what the AMA wants you to believe is reality. I'm not anti-doctor, but many of them have been brain-washed into believing that it's extremely rare to have a problem with gluten, and it's just NOT. Your daughter needs you to be her advocate here, and to go with what's best for her. If she has a gluten problem, this is serious; allowing her to continue to eat gluten can lead to enormous health problems in the future, including other autoimmune diseases like lupus and autoimmune hepatitis, or even cancer! Take it from me.....I've probably had celiac disease since I was much younger than your daughter, but was just diagnosed at the age of 52. Just look at the list of illnesses I have in my signature. I know what I'm talking about. Good luck! JoAnn
  7. Great article in the Huffington Post about the evils of gluten: http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html JoAnn
  8. nasalady

    Genetic Testing

    Well, no, this is not true. Although it is rare, there are actually people here on this board who have tested negative for the two "accepted" celiac genetic markers, HLA DQ2 and HLA DQ8, and yet they have celiac disease. My granddaughter Carly has biopsy-proven celiac disease but does not have either of those markers. IMHO, if your son has tested positive for the antibodies, you have your answer. False positives are very unusual, whereas false negatives are fairly common. The gastro is insisting on the biopsy because it's the so-called "gold standard" for diagnosis, but false negatives are also relatively frequent with biopsies, because they only biopsy a few small areas and, unless they get lucky, it's easy to miss damaged villi if the damage is patchy. Carly was biopsied twice, once at age two (negative), once at age three (positive). She is now gluten free and growing like a weed. Whatever you decide about the biopsy, once he is done with testing it sounds as though your son needs to be gluten free. Here's a great link that gets you started right: How to go Gluten Free - Karina's Kitchen Good luck! Please keep us posted! JoAnn
  9. nasalady

    My Dh Is Not Disappearing...

    Hi Woolygimp (and ChemistMama), Same thing with my husband, Paul. His DH got worse before getting better, even after being gluten free. Ended up on Dapsone for quite a while. The problem for Paul was that he developed a severe case of psoriasis simultaneously with the DH, and in a lot of the same places! It was terribly confusing and delayed treatment of the psoriasis. It was tough at first to figure out which was which, but then it became obvious because the DH itched like crazy, and either looked like blisters or like craters where blisters once were, and it turned very dark purple as it healed. The psoriasis behaved very differently from the DH....and it even looks and acts different depending where it is on his body! On his hands it makes his fingers crack and split, while on his knees and ankles it gets crusty. But he has DH on his knees too. There are several different types of psoriasis, and some of them superficially resemble DH. You may want to consult a dermatologist to help you sort things out..... Good luck! JoAnn
  10. nasalady

    Cross Contamination Question?

    What if your husband wipes all the crumbs off a counter but there's still enough gluten stuck to the surface to contaminate your food? What if wheat flour is suspended in the air and lands on your salad...or you breathe it in? What if you have a four-year-old who scatters gluten-y crumbs all over the place no matter how careful you try to be? I don't know how all you people manage to live in the same house with gluten but more power to you!! For those of you that can't do it, don't feel bad.....I can't either. I tried it and just about died from constantly being glutened. I posted more about this in an earlier thread, but I don't mind repeating it....I don't think it's doing your families any harm by having them eat gluten-free. After all, your children are related to you....it's highly possible that they too have a problem with gluten or will develop one! Your spouse is not related to you but it doesn't mean that he/she is not gluten sensitive/celiac. My husband turned out to be celiac; we never would have known if he hadn't gone gluten free with me and then tried gluten again a few weeks later (beer during Super Bowl Weekend). Poor guy broke out all over with DH!! I do all the cooking, and I've learned how to make almost *anything* gluten free (even grain free now!!). My family is NOT suffering! For those who have roommates, etc., it's a different story of course.....best of luck to you!
  11. Theresa, I'm sorry....I do understand! I was gluten free for about 2 weeks then went back on gluten. OUCH!! Everything hurt! I guess I had missed the fact that you had only been gluten free for 3 weeks prior to this. Yes, that actually does make a difference! Your body probably had not had enough time to heal in just 3 weeks, so maybe you'll be OK with just 2 weeks back on gluten. You should know that even if you were eating gluten for a YEAR, then were biopsied and blood tested, your tests still may come back negative....even if you DO actually have celiac disease! It's easy to miss biopsying the damaged areas if the damage is patchy, and the blood tests have lots of false negatives. Or your blood work may be positive but biopsy negative, and the doc will say, "well, you don't have celiac if your biopsy is negative!" There are lots of people here on this board who have only tested positive with Enterolab, or never tested positive at all, but have all of the same symptoms as the rest of us. Of course, I hope you do get your "official" diagnosis, just so that you know what's wrong! But I wanted you to be forewarned just in case. Best wishes, JoAnn
  12. nasalady


    gfp, You're correct of course.....my original point in giving that as a reference was that it was one of the few studies I had seen that quoted the "low" frequency of celiac and lupus occuring in the same person. But, as you've pointed out, in this paper from the Journal of Clinical Gastroenterology, they *are* apparently trying to slant things to make it appear that celiac is not autoimmune. Which is ludicrous. It's possible that the incidence of celiac and lupus occurring in the same person is much higher than reported, but because people see specialists for these things, they only talk to the rheumy about lupus and they only talk to the gastro about celiac, the rheumy and the gastro don't really care about the other illnesses that lie beyond their purview.....?? What do you think? dycelia, There's actually plenty of scientific evidence to back up a link between celiac and many other autoimmune disorders. Celiac is known to produce high levels of the cytokine, zonulin, which increases the permeability of cell walls. This can actually cause so-called "leaky gut" syndrome, where molecules that belong ONLY in the intestines manage to sneak through into the blood stream, which in turn causes the immune system to go into high gear and frantically start manufacturing all sorts of antibodies to combat the invaders. Current theory is that this can lead to some sort of "confusion" on the part of the immune system, causing various autoimmune diseases, where the immune system is attacking the body's own organs (mistaken identity?). You can read all about at this link (given also in an earlier post of mine in this same thread): http://www.umm.edu/news/releases/zonulin.htm Best wishes, JoAnn
  13. Two week will not be long enough. You should be eating *lots and lots* of gluten for at least 3 months, as you were told earlier in this thread. Also, if you really are celiac or gluten intolerant, eating gluten will NOT be pleasurable....it will be torture after the symptoms hit! My advice would be to either re-schedule the tests for March, or just cancel the testing altogether. Why even bother to go through that pain and suffering if your testing will yield false negatives because you weren't on gluten long enough??? Anything worth doing is worth doing right!! Of course, you don't have to take my advice.....but I hate to see you waste time and money if the project is doomed to failure from the start. Good luck! JoAnn
  14. nasalady


    Hi MsLee, Thanks for the link.....that's very interesting research! I've recently found out that LLMDs rarely accept ANY type of insurance. I'm paying for everything up front (including the Igenex Western Blot test), then I have to present it to the insurance company to see if they will reimburse me. It is expensive! The Western Blot is $475 and the first visit with the LLMD will be $625! My liver enzymes have been approaching normal, probably because I've been on such high dosages of prednisone and Imuran. But recently during my "rhupus" flare, the enzymes drifted a bit higher. I was told that's pretty typical for a flare. They're coming back down now, since my rheumy upped the pred dosage. Take care..... Happy Holidays to everyone! JoAnn
  15. nasalady


    That is really interesting....I've been reading that people who are being tested for lupus, RA, MS, etc. should probably be tested for Lyme disease as well, as part of the diagnostic process. My family has a long history of lupus and other AI diseases....I have aunts and cousins with lupus that live in other parts of the country; some of them I've never even met. So I'm fairly confident that I do actually have a number of AI diseases. But the original set of illnesses that I know I've had since childhood were Hashimoto's, psoriasis, and asthma. Then about 18 months ago began this incredible EXPLOSION of diagnoses: autoimmune hepatitis, fibromyalgia, RA, celiac, and now SLE. I probably had celiac since I was little but it was just diagnosed. Now my Lyme ELISA test is positive.....I wonder if I contracted Lyme sometime in the past few years and it triggered all these new AI disorders because I already have a genetic predisposition to developing these conditions?? I'm so sorry to hear about your insurance issues....it's absolutely appalling that people who need medical care can't get it!! And now that the Democrats in the Senate have apparently rolled over and are playing dead, the insurance companies will probably get what they want....