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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About MsHolland

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  1. Skin Issues

    I totally have a tongue problem too! Among other things. We sound like we're in the same boat I remember my dentist telling me that I have a geographic tongue when I was a young girl. I've had problems with it since long before I began having GI issues. It gets unsightly, splotchy, red patches all over. And it hurts! It's gotten almost 100 percent better since I cut out gluten/dairy though. Over time I began to recognize that certain foods would trigger or aggravate it: swiss cheese, strawberries, walnuts, pecans, pineapple, hot beverages (I still can't have my tea/coffee hotter than a wimpy 130 degrees or all of my taste buds will basically be seared off). It's very frustrating. When it's really bad and swollen I can hardly taste anything. I've had testing for all food allergies though, and I have none. But when I'm off gluten my tongue seems to be much more "resilient" to foods that were previously a problem. I always just figured I was an odd duck. I've also had keratosis pilaris on the back of my arms for years. It took me forever to figure out what it was. It's gotten significantly better since I stopped eating gluten/dairy as well though. The derm told me to try this CeraVe SA lotion and it's worked better than anything else I've tried. I've even tried prescription creams, but nothing has cleared it more than staying away from gluten and that lotion. It's available over the counter too, so that's great. I also get petechiae breakouts too--at least that's what I've determined it to be through a bunch of my own research and unhelpful doctors. The first time it happened was after reintroducing gluten for the first time in nine months. It's kind of scary. I'm literally bleeding under my own skin. It doesn't itch though, and it doesn't blanch when I press it. I'm still in the middle of testing though, so getting a definitive diagnosis on that is next on my priority list. It's happened to me three times, all after reintroducing gluten, but it fades gradually afterwards. From what I've read, it could be related to vitamin deficiencies due to malabsorption. Maybe that's your problem.... I definitely have problems with dry skin too. It's very aggravating. After I get more info from the Gastroenterologist I'm going to start trying some vitamin supplements to see if that helps. And last but not least, right around when I started noticing GI problems, I started to develop cystic acne on my chin area. That was back when I was about 26. I made it all through adolescence, college, and having a baby with nary a zit or a pimple. I was just blessed with flawless skin without having to do anything for it. But then I started getting breakouts. I tried a bunch of remedies with the dermatologist and nothing worked. I even had my hormones checked and they were fine. Nothing helped until I cut out gluten and dairy. Now whenever I have dairy or am glutened I will have a cyst pop up on my chin (sometimes my forehead) the very next morning. It baffles me! They're wickedly painful and sore, sometimes itch, and take forever to go away. Needless to say, my illness definitely likes to manifest itself through my skin too And I second Colleen's suggestion that you start taking pictures when your rashes are presenting! I know how hard it is to get in to the dermatologist sometimes.
  2. Big hugs, Colleen! The problem is I don't think my rash is DH. I think it's petechiae (or ITP, or Henoch Schonlein Purpura). It doesn't itch, it's symmetrical, it's smooth/flat to the touch, and it doesn't blanch when I press on it. But there are definitely pinprick sized pools of blood all over my thighs, part of my hips, and my lower legs. I do get a rash on my scalp though; sort of behind my ears, but those bumps only itch mildly. The biggest bumps do get sore and painful though. And I also get mild breakouts on my forehead when I've been glutened. The cystic acne occurs on my chin area and goes away entirely when I avoid both dairy and gluten. And I have had small blister like bumps on my fingers that itch pretty bad and have only shown up under the influence of gluten But it's never been anything as severe as the DH photos I've seen around the web. Hi, D! I hope I'm on the right track too! And yes, thank the Lord for whole, natural foods! I subsist on them. My husband is a pharmacist, so I think he feels exceptionally helpless because there's basically nothing he can do to help me other than being supportive, patient, and willing to listen (all of which he does amazingly). But he is human, and he does deal with sick people all day every day. When I told him that I joined this forum he was soooo excited It's so great to hear from people like you who've dealt with all of this and gotten better! Thanks, NGC! I definitely think that I have an electrolyte issue. I drink so much water and I swear it goes right through me. I always have to have a water bottle next to me--so much so that it's become a running joke in my family. I get so dehydrated though. It's awful! It's like I'm always swinging from retaining water and being super dehydrated. Not fun. Your B Complex comment made me laugh. I took one for a while this past summer and had to stop because I was literally sitting up at night wide awake like a crazy woman I'm thinking I'll go see the GI, talk with them about the colonoscopy/endoscopy, and about my nutrient levels. I'm either going to have to do that and reintroduce gluten for a while :'( or think about getting gene testing done. But I've heard that's expensive. I do have insurance though. But the lab that did my blood work did recommend that I do the HLA DQ2 and DQ8 typing. Either way, I would like to know what's wrong with me because it's clearly serious, and it's making me miserable :/
  3. Interesting. I intentionally haven't been taking any vitamins lately--even though I was very excited that I found some nice gluten-free, DF, corn free, soy free, prenatal multivitamins! I've decided that I'm basically just going to let my body get as sick as it wants to, and then let the doctors figure out what's wrong with me Should be tons of fun. Apart from being frightening, my rash isn't irritating or uncomfortable, so I haven't put anything on it other than my usual Cetaphil body lotion. It is spreading though. It started on my thighs, then it appeared on my hips, and now it's on my lower legs. And it's symmetrical on both sides of my body. I know that's a characteristic of DH, but this rash doesn't itch. I'm almost positive it's petechiae. My guess is it's a symptom of a vitamin K deficiency from malabsorption. But it's definitely my body bleeding under the skin. It looks just like the second photo on this webpage: http://insidetheclinic.com/petechial-rash-pictures-symptoms-causes-treatment/ Have you been allergy tested, Singer?
  4. Hugs!!! And thank you! I definitely think I have some malabsorption issues (folate deficiency, weird rashes, fatigue, weakness, etc.). But the last time I had my levels checked was in June '13, exactly one month after initially going gluten-free (again, that was a mistake because it wasn't under a doctor's supervision). I was in to have my hormone levels checked (they were normal) and not for gluten issues. My TSH was 1.6 (0.4-4.7 uIU/mL). And these were my nutrient levels on the gluten-free diet: Na 135-145 mmol/L 141 K 3.6-5.3 mmol/L 3.7 Cl 98-109 mmol/L 106 CO2 21-28 mmol/L 22 Anion gap w/o K 7-15 13 BUN 8-24 mg/dL 11 Creatinine 0.6-1.2 mg/dL 0.80 GFR non African Amer >59 mL/min 85 GFR African American >59 mL/min 103 Glucose 65-120 mg/dL 96 Calcium 8.5-10.5 mg/dL 9.4
  5. Thank you! I feel better already talking to you guys I've pretty much come to the realization that I can't eat out anymore either: 1) I'm super sensitive to CC, 2) Servers are rarely very educated, 3) This gluten-free/Paleo trend is making things harder because of miseducation, and 4) the traditional gluten grains (wheat, barley, rye, and oats) are not my only triggers. I haven't tested sorghum on it's own yet, but I'm pretty sure that all prolamine containing grains make me react, especially corn--which is wicked and almost worse than gluten, especially since it's in EVERYTHING! Dextrose, High Fructose Corn Syrup, maltodextrin...it's everywhere! I'm supposed to be going out for a friend's birthday this weekend and she chose a Japanese steakhouse. To my friends, the menu seems gluten-free: rice, vegetables, lean meats, etc. Well, it's not. There's the fact that everything is cooked on the same griddle, the sauces probably all undoubtedly contain wheat, and I called the restaurant to see what kind of cooking oil they use: vegetable, which is just another word for corn (possibly soy, which I still stay away from). I've told my friends not to worry about planning around me, that I'll just order a glass of wine I love them, and they love me, but they just don't understand, even my (less sensitive) gluten intolerant friend. Maybe it's me projecting my own insecurities and confusion, but I get the feeling that they think this gluten-free thing of mine is simply me getting caught up in the newest health "trend," or that I've become a hypochondriac. Like you said, I definitely wonder if a diagnosis would help with some "validation," in that regard. I have no doubt that something is wrong with me, and my family is very supportive, they just don't understand the severity. Plus, I'd like some answers.
  6. I feel hopeless and overwhelmed I’m a 29-year-old mom and newlywed undergoing testing for Celiac/NCGS, and I’m fairly certain that my dear husband is tired of hearing about it all the time…. So here I am. We’ve been together for three years, and I have to tell my husband that I swear that there was a time in my life where I was “normal.” I’m always achy, have crazy GI issues (not great for our sex life), my skin does insane things, and I alternate between raging irritability, anxiety, and depression. Basically, I’m not much fun to be around. We can’t eat out with friends. I don’t do fun things with my daughter. My life revolves around food and my stupid body. I just want to crawl in a hole and stay there. I started my gluten trial 11 months ago after realizing that the host of symptoms that I was experiencing weren’t normal and could potentially be diet-related. I mentioned the idea of cutting out gluten to some nurse (who, in hindsight, didn’t know jack!) and she told me to go ahead, “cut it out for four weeks and then reintroduce it and see what happens.” Then I could “‘call back’ and they’d enter a gluten allergy into my file.” Yes, she seriously said that. And in my naiveté I followed her advice—little did I know that any attempt at an actual diagnosis would be thwarted from there on out. Anyways, I was diagnosed with Salmonella after eating a bag of recalled lettuce in 2010. But other than that, I’ve always had an iron stomach. Nothing fazed me. But over the past four years my health has gradually deteriorated--and this has been so gradual a process that I can’t even pinpoint any onset, and I never even realized that what was happening to me wasn’t normal. [in case you’re curious, here’s a list of some of my symptoms: Neurological—anxiety (dx); depression (dx); irritability; brain fog; and memory problems. General—chronic rhinitis (dx); chronic sinus infections (dx); headaches; joint pain; weak dental enamel; fatigue; chronic dehydration; UTIs; dysmenorrhea (abnormal periods); night sweats; and water retention. GI—nausea; insatiable appetite; chronic diarrhea (dx); hemorrhoids (dx); painful gas; abdominal pain; and bloating. Skin—keratosis pilaris (dx); geographic tongue (dx); dark circles; adult onset cystic acne (dx); dry skin; eczema; and strange petechiae like rashes that look like I’m bleeding under my skin on my legs.] I do yoga. I’m a runner. I eat organic. I don’t eat processed food. I haven’t had fast food in over a decade (literally). I’m 5’6”, and depending on my water retention, range from either 112-120lbs. I’ve always considered myself a healthy individual. But over the past few years that notion has been destroyed. It finally took my husband, my daughter, and my family calling me out on my “antisocialness” to realize that something was wrong. I would seriously rather lie on my bed or sofa in my sweatpants than go anywhere, do anything, or see anyone. My stomach pain interfered with my quality of life that much! It was like there was a war going on inside. And my previously clear skin looked like a 16-year-olds! It was humiliating. I tried everything for that—clarisonic, topical antibiotics, prescription retinoids, creams, washes, masks, birth control—all to no avail. Over time, I guess I just assumed that multiple loose bowel movements a day was normal; that the stomach gurgling, gas, pain, and bloating were just unfortunate; and that the acne was just hormonal [P.S. That went away as soon as I cut out dairy. Quel surprise!] At that point I was desperate. I did a bunch of research online, and I decided I’d try cutting out gluten like the nurse suggested. And it helped! And when I cut out dairy a few months later it was like heaven on earth! All of my symptoms either went away or started to go away. And when I reintroduced either of them, all of my symptoms came back; so I knew something was up. I’ve since learned that I can’t tolerate dairy or gluten (all grains except for rice, and especially not corn). And it’s been do-able. Not fun, but do-able. [i used to consider myself a “foodie,” but not so much anymore]. The problem is, my husband and I are pushing 30 and we want to try to have another kid soon. Since I’m nervous about having such a restrictive diet, potential allergies, or a serious disease, as well as the impact that my health could have on a child, I talked to my PCP about it and she suggested that I see an allergist and a Gastroenterologist. So I did one more reintroduction test (wheat only) just to make sure, and lo and behold, my body freaked out! Except this time I got a crazy rash that I’d never had before (which four doctors haven’t been able to visually identify). That was in February. In March I did a second reintroduction test (again wheat only). The dumb rash came back. So I went to an allergist. She did a full food allergy blood panel on me and they all came back negative. She also did a Celiac panel on me and that came back negative too (though it’s no surprise since I had only eaten one serving of gluten/day for four days, and had been gluten-free for nine months prior). My PCP told me the blood work means nothing because of that. Anyways, a little over a week ago I got sick again, only this time, it was on accident. And the dumb rash came back, except it's spread more this time. My stomach is freaking out, I’ve had diarrhea for ten days, blood in my stool for three, and am passing undigested food. Basically anything I eat goes right through me. I’m starving, dehydrated, and look and feel like death. I saw my PCP and she said I need to go in for a colonoscopy and probably an endoscopy. I’m scared, frustrated, tired, and feel sort of crazy. I’m so tired of feeling like this! I don’t know what I’ll do when the GI tells me that I’m going to have to start eating gluten again! If I could hide I would. So this is where I’m at now. I truly appreciate those of you who took the time to read this! I just know I need to stop relying on my husband as my sole support because it’s not very healthy, and my family just doesn’t understand. Any words of advice, insight, or comfort would be much appreciated! Shannon Gluten-free since May 2013 DF since Sept 2013 Grain free (excl. rice) since Sept 2013 Allergy testing (negative) Mar 2014
  7. Hi! This is my first post I'm still in the middle of the diagnosis process (blood work for food allergies-negative, colonoscopy/endoscopy-scheduled, elimination diet-successful). To make a long story short, I'm highly sensitive and have been off gluten (all grains except rice) and dairy for 11 months. I wanted to try reintroducing gluten (while controlling for dairy) at least one more time before having all of the unpleasant GI tests done. The first time I reintroduced gluten since my initial gluten challenge was this February (9 months after going gluten-free). All of my usual symptoms returned, except that I got a weird new rash on both of my thighs. I only had one serving/day of gluten for four days and the rash showed up after a couple of days. So I stopped eating it, and the rash went away. Then I reintroduced it again for four days in mid-March (10 months) and the rash reappeared on my thighs, again after a few days. So I stopped eating it and went in for allergy testing--negative. Then last week, I was glutened from a cross contaminated olive oil "mayonnaise" jar (I'm that sensitive), and the rash reappeared. I've had a total of 4 doctors look at it and none of them have any idea what it is. It doesn't itch, it's completely smooth/flat to the touch, and it doesn't blanch or fade when I press on it. My only guess is that it's a mild case of petechiae or purpura, as it looks like I'm bleeding under my skin. It's primarily on my thighs, but I have a bit on my hips as well. And it does go away, albeit gradually. My PCP/internist said she could refer me to a dermatologist, but she thinks that it's more imperative that I get in to the GI for a colonoscopy/endoscopy. Any ideas? I'm so sick of being sick https://www.flickr.com/photos/101624582@N05/13588883273/ https://www.flickr.com/photos/101624582@N05/13588841195/ https://www.flickr.com/photos/101624582@N05/13585386044/ https://www.flickr.com/photos/101624582@N05/13585005635/in/photostream/ https://www.flickr.com/photos/101624582@N05/13585384024/in/photostream/