tag:blogger.com,1999:blog-3749687802138692392.post1417535285845474884..comments2023-05-31T01:45:02.663-07:00Comments on Sick Momma: Another Doctor Visit, Another Blood Test (And Wild Theory)Avivahttp://www.blogger.com/profile/16411667763810131618noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-3749687802138692392.post-45091604492440200502008-09-23T10:43:00.000-07:002008-09-23T10:43:00.000-07:00Thanks for chiming in, Joan!And yes, you explained...Thanks for chiming in, Joan!<BR/><BR/>And yes, you explained the trendy part exactly. Thanks. :)<BR/><BR/>And fwiw, Andy was one of the people I was thinking of when I said there were two people in my life that i consider family who have CD. So you guys weren't left out of the post entirely! :)<BR/><BR/>And huh, yeah, I *am* rather lactose intolerant. And I have been for such a long time that I don't even think of mentioning that to docs when we go through all my symptoms. And you know I have those dark circles! So maybe it's not such a long shot for me to get tested for CD after all ...<BR/><BR/>But I guess the part that I still don't quite get is shouldn't I have lost weight if I have CD? I mean, I might be having trouble with a few nutrients despite the megadoses of supplements I've been put on by doctors, but clearly I'm absorbing plenty of calories because I'm fat! I thought unexplained weight loss was a sign -- or is that just in little kids, who sometimes get labeled as failure to thrive or falling off their growth chart curve for weight?<BR/><BR/>Clearly there's a lot I've got to learn about celiac disease if that's what I turn out to have. I'm glad you're right next door, Joan, and that PDX has a group like Jenn's.Avivahttps://www.blogger.com/profile/16411667763810131618noreply@blogger.comtag:blogger.com,1999:blog-3749687802138692392.post-64529451838912961272008-09-22T21:14:00.000-07:002008-09-22T21:14:00.000-07:00Hi Ladies,To be fair, in many ways I understand wh...Hi Ladies,<BR/><BR/>To be fair, in many ways I understand why the doctor felt - and many in the general public - think celiac disease is "trendy." Our doctors are not well-schooled on the subject and it is highly underdiagnosed in the US. <BR/><BR/>Jenn, you laid out a wonderful outline of the ideal way to screen for CD. One thing you left out is my area of specialty: Down syndrome. It seems that folks with trisomy 21 do have the genetic marker for CD regardless of family history. So being able to get the right tests to diagnose is important.<BR/><BR/>Aviva, in reading your post, he may well be right. Many of the common nutrient deficiencies that are coming to light regarding celiac disease are Vitamin D deficiency and anemia. And you konw those dark circles? That's another. Andy's went away after he was diagnosed. Another common first sign is lactose intolerance - how's that going?<BR/><BR/>But back to the "trendy" thing. I think the other issue is that it's not **celiac disease** that is "trendy" (though to a doctor that is what they might presume), it's being "wheat free and dairy free" that's "trendy." There are many people who use a wheat free diet as a way of life without a substantive reason. But if they feel better, it's a perfectly safe diet, so *I* don't care! And..if it makes gluten-free products easy to find....ALL THE BETTER. <BR/><BR/>So, I think both views are actually accurate, depending on the point of view.<BR/><BR/>Keep up the diligence in spreading the word about accuracy in the testing procedure Jenn. It makes a world of difference to get it right the first time.<BR/><BR/>Joan<BR/>(Mother of Andy, who has Down syndrdome, autism, and celiac disease - and we got left out of the blog! :)Joanhttps://www.blogger.com/profile/16593740857005841132noreply@blogger.comtag:blogger.com,1999:blog-3749687802138692392.post-32360978881840057652008-09-22T20:22:00.000-07:002008-09-22T20:22:00.000-07:00hi Jenn,Um, first of all, it was my rheumy who dec...hi Jenn,<BR/><BR/>Um, first of all, it was my rheumy who declared Celiac Disease to be "trendy," not me. I'm sorry if that wasn't clear. And I absolutely will go gluten-free if the tests suggest that I have Celiac Disease. <BR/><BR/>What I'm skeptical about is all the people who claim gluten-free diets can cure ... well, just about anything. For example, I really don't buy into the claims that a gluten-free diet can cure autism as certain celebrities claim. If scientific studies come back and say it's true, I will completely accept it and eat my words. I have no problem with that. <BR/><BR/>And I do accept that some people do feel better on a gluten-free diet despite not having Celiac Disease as diagnosed by an MD. But I don't think there's really medically proven link between gluten free diets and improvements in lupus, fibromyalgia, chronic fatigue, etc. <BR/><BR/>Anyway, I appreciate the education in how CD actually gets diagnosed. I feel like a dope for not finding out exactly what blood tests the rheumy ran, but I guess I'll find out in a few days when I get the results. He did tell me that if the tests came back positive, the next step would be the biopsies of the small intestine before a definite CD diagnosis would be made. <BR/><BR/>Anyway, I do apologize if my original post was so poorly written that it was offensive. I have two people in my life that I consider family who have CD and I know it's absolutely a real medical problem. I'm just not convinced it's *my* medical problem. Although I guess I'll have a better idea of whether or not my intuition is correct in a few days when I find out if I need further testing.Avivahttps://www.blogger.com/profile/16411667763810131618noreply@blogger.comtag:blogger.com,1999:blog-3749687802138692392.post-3875005543877656682008-09-22T10:58:00.000-07:002008-09-22T10:58:00.000-07:00I'm sorry that you feel as though Celiac disease i...I'm sorry that you feel as though Celiac disease is "trendy" and you can't be bothered to go gluten free. I would think that if it would help you feel better you'd be more open to to it. If you are chronically ill long enough you just may give it a try eventually! lol<BR/><BR/>There are actually five blood tests they can and should run. The first of which is a test for the genetic marker. Without it, you can never have CD.<BR/><BR/>A complete Celiac Blood Panel: <BR/><BR/>Antigliadin IgA and IgG<BR/>May indicate Non Celiac Gluten Sensitivity. <BR/><BR/>Anti-tissue Transglutaminase Antibody (tTG) IgA and Anti-endomysial <BR/>An indicator of villi damage [slight damage is not always detected]. <BR/>These tests are highly specific to CD. <BR/>However, autoimmune diseases can skew the results of these tests <BR/><BR/>University of Chicago CD Center wrote:<BR/>It is important to note that some people with Type 1 Diabetes, Hashimoto’s thyroiditis and autoimmune liver conditions can have a falsely positive tissue transglutaminase test. For this reason, it is important that tTG test results in people with these conditions be checked with the EMA test. The physician may nevertheless want to obtain an intestinal biopsy if clinically indicated, even if EMA are negative. <BR/><BR/><BR/>Total serum IgA <BR/>Rules out IgA deficiency. This must be run to ensure proper IgA test results <BR/><BR/><BR/>Anti-reticulin IgA <BR/>Rarely used but, a very thorough doctor will include this <BR/><BR/>The gold standard for testing for CD is a biopsy of the small intestine. 8 to 10 samples should be taken as CD damage won't necessarily smoothly "coat" the intestine but will damage in "spots". It's important that enough samples are taken to make sure to catch one of those damaged areas to get the positive dx. <BR/><BR/>Also if you're in the early stages of CD you may not test positive for CD but could still have the more vague gluten sensitivity. <BR/><BR/>At any rate there is a lot of support offered to celiacs in the PDX area and once you adjust to the diet it's actually quite easy to live a gluten free lifestyle. I hope you get back to good health soon regardless of weather or not your definitive dx is Celiac or not. I hope they can figure it out. <BR/><BR/>To good health,<BR/>JennGrain Damagedhttps://www.blogger.com/profile/03354726752379607095noreply@blogger.com