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Found 12 results

  1. My 7-year-old has been complaining of constant itchiness and a skin crawling sensation for the past five months, but has no external rash or symptoms. It seems to get worse at night, although that may be because it's more difficult to distract herself at bedtime. We've tried switching shampoos and detergents, tepid baking soda baths followed by gluten-free lotion, re-reading the labels on anything that comes in contact with her skin, having her re-tested for more food sensitivities, and even checking the house for mold and cleaning all the air ducts. Nothing has helped. Her pediatrician referred us to an allergist who had us try several different histamine blockers, but not even Benadryl brings relief, so it doesn't appear to be a histamine issue. Blood tests show that her kidneys, liver and thyroid are all functioning normally. Right now I'm trying having her go nitrate-free since that isn't included in food sensitivity tests, but so far no improvement. Now they want to refer her to a dermatologist, but the appointment is a month away and she is MISERABLE. I have no idea how to help her.
  2. TMI BUT COULD IT BE CELIAC? About a year ago randomly one night that my bottom started itching around my butthole and since then it would itch every night there after some nights more severe some not as bad but still itchy. It never itched during the day only at night. Few months of dealing with it I finally went to see a hemorrhoid doctor thinking that could be it. I ended up not having any hemorrhoids. I then tried every cream there was from hemorrhoid creams, diaper rash ointment, coconut oil and even a hydrocortisone cream prescription and none helped. I looked online and saw that night time only itching could be that I had pinworms. I tried over the counter pinworm medication twice and still that didn't help either. I then went to another doctor and all she said was she didn't see anything so she didn't know what it could be. I thought about a month or two ago what if I was allergic to something could that be causing my night time bottom only itching? I tried cutting down on dairy and that helped somewhat but then the itching came back. I read about celiac and was wondering if I could have celiac disease? Could celiac be the cause of my night time itching or do you usually itch all day if you have celiac disease?
  3. Yvonne (Vonnie) Mostat, RN

    Confessions of a Celiac "NERD"

    Celiac.com 03/23/2018 - I should probably add severe dermatitis herpetiformis to that title. It was numerous doctors' guessing games, a medical misadventure, and years of improper eating that led to my arrival at "severe". I often wonder why 'misadventure' was the legal term they used to describe a doctor giving me a neuroleptic drug for "spots". After all, there was no adventure in what occurred and the only thing that was 'missed' was the correct diagnosis. But my tale is one of a beginner's trials. I described my medical 'misadventure' in a previous issue. Perhaps this article could be called "The Perils of Pauline" if my name was Pauline. When I was diagnosed with celiac disease and severe dermatitis herpetiformis (DH) I was told that the diet was very difficult to follow and I would have to be vigilant or Dapsone might not stand in the gap as my savior from the itching, I was told that I would suffer abdominal pain, outbreaks of sores, anemia, and, (big swallow) horrible bowel disorders. About ten years ago I submitted an article about celiac disease and DH to a magazine. I was told that nobody wants to hear about 'bowels'. Thank goodness times have changed and we now have our own magazine. I can use terms like "flattened villi", "flatulence" and "stools", and know that you understand the need to discuss these issues. Early in this process, I left my dermatologist's office with a prescription for Dapsone to treat the attack of sores on my scalp, my arms, and thighs, and a slip of paper directing me to see the dietitian at our local hospital. I was told to avoid "wheat", which meant avoiding bread and bread products. "Duh!" I went home, had a bowl of Campbell's Mushroom Soup and thought "I can do this. I am a nurse after all. It won't be long before these sores have cleared up, I can gain weight, my nails will grow again, and I will stop this blessed itching" (Why do we say "blessed" when we mean a swear word?) I was on such high doses of Dapsone and the sores cleared up but what a price my body paid! We continued using the same toaster. (Goodness what is a crumb after all?) The more I traversed this "adventure" the more I found flour, or to be precise GLUTEN in almost everything I ate, liked, or touched. I visited the dietitian at our hospital after weeks of waiting, and she was curious to see the sores on my scalp, never having seen dermatitis herpetiformis before! Her file on celiac disease was smaller than the one that I had started to develop. I am embarrassed to say, as a nurse and writer, that I did not search the Internet for help during those first months. The dietitian was my only resource. I did not know anyone with celiac disease. And dermatitis herpetiformis was something I did not want to tell anyone about. It sounded contagious to me. Some of the 'shockers' to me, the person who thought the gluten free diet was going to be a piece of cake were simple things and stupid things. Some of the words I was frequently saying were "I just did not think gluten would be in that!" and "I did not think to read that!" and, "Who would have thought?" Certainly not me! That first Christmas someone bought us a bottle of Irish Cream Liqueur, a thing we seldom imbibe. Again, not thinking, I used it in coffee for a drink after Christmas dinner and "wondered" why I had diarrhea the next day and why DH spots appeared on my scalp. Food surprises: Oh my, such a lot of them. McDonald's French fries are not French fries. They are reconstituted flours, lard and "some" incidental potato products. My favorite, Costco fries, were hardly fries at all. They contained a lot of flour, which I suppose gave them the crunchy texture that I loved and paid dearly for afterward. I found out that most sausages contained toasted bread crumbs, as did sausage meat. Processed hamburger patties, big surprise, also contained toasted bread crumbs. I finally found that one can get sausages labeled gluten free, with that wonderful little "Wheat Sign" that I was learning to look for. Milk shakes? Oh, come on! Milk and ice cream... right? Not necessarily because not all ice creams are the same, some actually contain wheat germ or other grains used as fillers. This is similar to the way they use fillers in our medications, not only our pills but our liquid medications, our cough syrups, and pain liquids. Some indicate that they are made on machines that use wheat products and are not carefully cleaned before they begin another batch of medications. It is the same with those lovely sour lemon candies I love. They are coated with this lovely lemony powder. I can eat a bag of them without much thought. That is, thought was suspended until I was awake all night with abdominal pain and suffered the next day with diarrhea, and the next week with DH spots and the itch. Oh boy the itch! It is not a normal itch you know. It is not one that you just scratch for a bit and forget it. You HAVE to scratch it until it draws blood, and then scratch the scab until you have a burning pain like no other. Thankfully we found a Corticosteroid liquid called "Scalpacin". It is an over the counter liquid. I was forced to get serious about this search for traces of gluten, but why do they make the product analysis writing so small? Picture me pulling things out of the freezer department of the supermarket and trying to read the product analysis. I cannot leave the door open because the hairs in my nose will freeze and I'm afraid that the department manager will become annoyed, so I end up opening the freezer doors again and again, searching for something I can eat. I discovered, like most serious long-term celiacs, that quick, pre-made dinners are something you might as well ignore when shopping. And those wonderful rotisserie chickens - so nice and warm and "fatty" - have to be taken out of the warmer and the label has to be read because most of them seem to contain MSG and other unknowns. Acronyms - initials that scared me because I could not remember which ones were on my "Danger List". Eventually I printed off and laminated a sheet of "OKAY TO GO" and 'DANGER LIST" and took it with me when we shopped. (These lists are available at www.celiac.com.) Spices contain flour to prevent them from sticking, and who knew that baking powder would contain flour, and icing sugar? I was giving away most of my baking products cupboard to my grown daughters. Of course they did not mind and my husband was slowly learning to eat gluten free. Really, he was better for it. I kept telling him that. I seldom made cakes and pies in the beginning. Then, I had so many gluten free baking disasters because I was so used to baking with a "dash of this, and a dash of that", and you cannot do that with celiac baking or you will have a flop. I dug so many cakes out of the pan and threw them in the garbage. The first loaf of bread I tried to make in our break maker, the loaf actually went down instead of rising, and my husband ended up digging it out of the pan with a screw driver! We rarely went to restaurants. I was embarrassed at having to give the waiter the third degree about the menu. And so many of the chain restaurants have large tins of pre-made products and the waiters, so time oriented out of necessity, cannot read every label. I now find, to their credit, that a lot of these chain restaurants have a book listing ingredients of each of their menu items. They are great, IF waiters will take the time to read them. A waiter in Hawaii, after grilling him (not the steak) about the "au jus" in the dish, finally came back to our table with my meal. My husband asked him again if he had checked that the meal was gluten free. Although he said it was safe, it became clear that he had not checked. It was that little hesitation that should have "clued us". I would not have spent the next three days of my holiday dastardly sick if I had handled it differently. My family physician has told me to emphasize that gluten "is poison to me, and I get very ill from it". He went on to say, "That will scare them because they will be thinking you will be rolling on the floor in the restaurant". Eventually we found one restaurant in our area, a small family owned business where everything was made by the chef/owner, that was safe for me to eat. The chef even came out to see if everything was okay. I was so delighted I wrote an article in our local newspaper about the restaurant and sent information to the Vancouver Chapter of the Canadian Celiac Association because they welcome new information about restaurants and new bakeries offering gluten free baked goods, new information regarding retail grocery stores offering new gluten free products, etc. I have learned to avoid caramel because even though I'm told it is not made with flour, it often has other forms of gluten in it that manufacturers are sneaky and not listing, like malt! A big shocker for me was the John Frieda shampoos. I just loved it when the hair lightener products by John Frieda came out.. They had blonde hair lighteners, burgundy hair colors, caramel, and chocolate brown. Oh my, the colors were endless and lovely. I bought the blonde hair products, the anti-frizz, the shine products and sprays. My cupboard was full of John Frieda blonde hair products for the wonderfully expensive streaks in my hair. Why oh why was my hair itching so badly? And the sores, and the blood! Why it was Wheat Germ Oil! And my scalp was alive once again. But I had a bigger problem. By this time, my wonderful Dapsone was becoming a danger to me. I had always been told by my dermatologist to assist the DH to dry up by going {5-4-3-2-1 with the Dapsone pills. And if that did not work, doing it again along with yet another prescription pill Prednisone! Out came his trusty prescription pad for Prednisone, {5-4-3-2-1 of Dapsone and Prednisone. I was not told however, of the potential side effects of Prednisone, like aching joints and mood swings. But Dapsone is one of the drugs that can cause methemaglobinemia, a blood disorder where the oxygen is taken out of the blood and your oxygen saturation can drop dangerously into the low 80's. I learned this after two hospital admissions into the ICU this year. They used Methane Blue (a potentially lethal mixture if not used correctly) to clean my blood. The oxygen is hidden behind a door somewhere and the Methane Blue helps open those trap doors and releases the oxygen into the blood again. That is how the internist described it to my husband who was sitting terrified in the other room. I had an infusion of two units of whole blood and a four day stay to monitor my oxygen saturation levels and was told I could never use Dapsone again. What??!! Dapsone was my life-line; I could never live without Dapsone! Three days without that "stuff" and the dreaded spots were back. I was referred again to a dermatologist, now fifteen years after my diagnosis, and he prescribed Cimetidine, a medication used for stomach disorders. Who would have known? But it works - three times a day that is. Another dratted pill! We purchased a SAT machine (It measures the oxygen saturation of hemoglobin) online from the U.S.A. for $38.00. It is a very good deal. Twice a week we check my SAT levels and if they are 92-93 I consider it okay to continue my Dapsone. I have been told if my SAT levels drop below 89 I should go to the Emergency Department because these small machines are not totally accurate. But this little guy has checked out with my physician's SAT machine and the hospital's machine every time; It's a real winner, and a life saver for me! IF you are afflicted with dermatitis herpetiformis and have to take Dapsone regularly you may want to consider purchasing one of these machines. A few shots of Zylocaine for pain, coupled with the Dapsone, and you could be in trouble. Zylocaine, in combination with a few other drugs, can cause Methemaglobinemia. I have just listed "some" of the things that surprised (shocked) me when I was a new gluten checker. I am sure you can write in and tell us your "shocking" stories.
  4. Awol cast iron stomach

    That darn corn !

    Hi everyone, Question and partial update. How many of you are corn intolerant as well? Is it permanent? Did you know before , concurrent, or after gluten reared its ugly head? I did not have corn intolerance (I believe) until the 2016 with my terrible restaurant gluten exposures and quest for celiac testings. It is definitive that corn is the culprit besides gluten. I have been noting food diary since May 2016. This was the first time since May I have had corn starch and corn flour. After 40 minutes I'm using my inhaler for shortness of breath, itching like crazy everywhere, particularly face, arms, back, and my connective tissue fascia pain (a la gluten) is ratcheting up. So here I am detoxing quickly as possible in tub with Epsom and slamming a quart of water. So the good news is I think I'm down from the other eight suspected intolerances to just corn and of course the evil gluten is always the headlining star. Your opinion do I try again in 3 or 6 months? At the one year mark?
  5. My daughter is 7 and has been complaining of itchy skin, especially at night, for several months. Occasionally she says it feels like something is crawling on her. She is extremely sensitive to cross contamination, but up until now her symptoms have been mostly IBS. We've tried everything we can think of. We rewashed all of her clothes and sheets in dye-free, fragrance free detergent. We switched shampoos and conditioners. We cleaned the air ducts and checked for mold. We've slathered her with coconut oil in case of dry skin. We had her checked for more food intolerances, and her IGg test came back positive for dairy and almonds, so we've eliminated those in addition to gluten and oats, but it hasn't helped the itching. We're giving her calcium & magnesium at night, along with some Benadryl to help relieve the symptoms, but it only seems to make her drowsy, not truly give relief. Her pediatrician ordered blood tests to check her liver, kidneys, and thyroid, but it all came back normal, apart from a slightly low white blood cell count. We're supplementing her with folate and gluten-free food-based iron because she frequently complains of fatigue. A blood panel on common food and environmental allergens (IGe) came up with no allergies. This is so frustrating. Every night she cries that she's itchy and can't get comfortable, and we're no closer to finding answers and getting her relief than we were at the beginning.
  6. I've been having strange health issues for about 8 months, and only after seeing a holistic nutrition expert have I begun to wonder if I have a problem with gluten. Reading studies, articles, and personal accounts has made so many light bulbs go off in my head. I would like to share my situation in the hopes that someone out there can tell me what path I should take for the fastest resolution to this problem. Background: Lifelong digestive issues, off-and-on, incl. diarrhea and constipation but more often painful gas/bloating. Diagnosed with GERD at 29, been on PPIs for 10 years (way too long, I know). Nine months ago, began to experience a strange sensation in my left shin/calf. Sort of like the skin was mildly tingly and more sensitive than normal, like how sheets feel on your legs when you've just shaved them. Accompanied by fatigue, mild digestive distress, brain fog, tiny twitching of muscles here and there, mostly at night and mostly in my legs. Diagnosed with low B12, put on supplements. Should have stayed on them but got off track with them. Symptoms did mostly go away. Within last month, leg sensations back, along with fatigue, brain fog, and minor twitching. Some days I have little itches randomly all over my body. I'll scratch one and it disappears, then one pops up somewhere else, and so on. I have had a lot of other symptoms that I read about in celiac articles at times in the past -- headaches, insomnia, depression, abdominal pains, benign breast lumps, breast tenderness, etc. I think I'm on the right track with this holistic person, who is helping me to wean off the PPIs. I have read there may be a correlation between PPIs/GERD and celiac. She did the zinc deficiency taste test and it was positive. Just started me on some supplements and said we'd work up to other supplements when my tummy is healed from the PPIs. She is the one who mentioned a gluten problem, told me about the possible link with PPIs and that since I'm very fair, blue-eyed, redhead, that may make it more likely that I don't tolerate gluten. I have always thought celiac disease was only manifested in severe digestive problems, and since I have only had moderate digestive problems -- albeit off and on for a very long time -- I never considered the possibility of celiac disease. My mom has bad IBS, but to my knowledge was never tested for celiac. This has been long-winded and I apologize, but since I don't think the holistic person can do a celiac test or order one, where would you all go from here? I don't want to waste a ton of time if this is damaging my body. My GP mentioned MS and wanted to send me to a neurologist, but I feel like it's smarter to explore the diet issue at this stage than wasting a lot of time and money, and scaring myself to death, by going to a neurologist. Thank you in advance to anyone who takes the time to reply.
  7. T.H. wrote on October 2013 - 08:31 PM regarding a recent diagnosis of Mast Cell Activation Disorder. Interestingly, my symptoms are very similar. I was recently diagnosed with mastocytosis. All grains are my triggers. I haven't posted in a while because I found that though I have Celiac, I knew I was reacting to more than just wheat, barley, and rye. (I was initially fine when I first went gluten free, but then gradually had to let go of each grain, one-by-one.) Not to mention having odd symptoms like itching (with no visible reaction), anaphylaxis, asthma, and other problems that seemed to join the list at will. I'd like to give some encouragement and advice to fellow Celiacs who have mysterious symptoms beyond that of Celiac. First, of all, realize that you can't compare yourself to others too much if the problem is mastocytosis, everyone is different. Second, the low-histamine diet makes gluten-free look like a buffet. Third, keep insisting on being tested if anything sounds familiar: So... What are Mast Cell Diseases??? Mast cell diseases include mastocytosis, where the body produces too many mast cells, and mast cell activation syndrome (MCAS), where even the normal number of mast cells are too easily activated by a trigger to release their contents, called mediators. These mediators can cause a variety of unpredictable symptoms in both children and adults, including skin rashes, flushing, abdominal pain, bloating, nausea, vomiting, headache, bone pain and skeletal lesions, and anaphylaxis. Triggers can be heat, cold, stress (physical or emotional), perfumes or odors, medications, insect stings, and foods. These symptoms are treated with medications including antihistamines, mast cell stabilizers, and leukotriene inhibitors, while anaphylaxis is a medical emergency requiring epinephrine. Mastocytosis can affect skin and internal organs such as the bone marrow, gastrointestinal tract, liver, and spleen. Most patients with mastocytosis have cutaneous (skin) or indolent (benign) systemic forms, but aggressive disease can occur, which may require chemotherapy. A diagnosis of mastocytosis is confirmed by a bone marrow or skin biopsy. MCAS patients do not fulfill all criteria for mastocytosis but exhibit symptoms, may or may not have increased measurable mast cell mediators (commonly tryptase, histamine or its metabolites) during or shortly after an attack and do respond to the same medications that patients with mastocytosis do. - See more at: http://www.tmsforacure.org/welcome.php#sthash.G2Ue2aBq.dpuf
  8. I gave up Gluten 5 days ago and i have been experiencing itching on my abdomen and round the back (sort of left kidney area) itching feels inside not the skin. and not constant. anyone else get this? Thanks
  9. willstewartdc

    Getting Rid Of Dh

    Hey everyone. Just wanted to say I am new here but I appreciate all the information everyone contributes. I was recently diagnosed with gluten intolerance. I do not have any of the digestive issues that come along with it but I get a terrible rash (DH) primarily on my knees, elbows, buttocks and now face and upper back. I have been trying to detox and strictly watching what I eat. I have been eating nothing but fruits, veggies, lean meat and drinking water like mad the last month and a half now. The only thing that seems to keep my skin under control is if I take a corticosteroid. If I stop taking it, within a few days I start to get the rash again. Does anyone know of a good detox to help balance the gut and flush gluten? I am currently on a probiotic, fish oil, drinking apple cider vinegar and eating sauerkraut by the forkfull. Thanks in advance for any advice and help. In good health!
  10. I have been suffering for 7 months with a severe itching/rash issue. I saw my dermatologist beginning 6 months ago. She has not been able to figure out what my issue is. 2 months ago, I began to attempt an elimination diet based on a book I picked up. I noticed improvement after 2 weeks or so. Basically, by playing with my diet, I have come to the conclusion that I am allergic to flour or perhaps celiac. If I don't eat it, I am fine. If I eat flour, within 4 hours, I begin to itch all over my body. I went to see my family doctor today to request that he order the testing for celiac for me. He told me I have to be eating wheat for at least a few straight days for the test to have proper results. I left there determined to get myself back on a diet including wheat. I had bread with dinner and now I can not sleep from all the itching. How can I possibly eat it for several days? I am already miserable!!
  11. I started having medical issues in Aug 2012. I started out itching all over my body. My face itches really bad and I get little red bumps around my chin, forehead and cheeks. I've always had bowel/intestine issues and that seemed to get worst (feeling bloated, painful bowels). I've been constipated for the last 17yrs. I started getting really bad heart burn which I've never really had before. My stomach ached for no reason. I went to my primary doctor and she checked me out and ordered blood test. Everything came back normal. She suggested that I take over the counter medicine for the heartburn and itching. I went to a dermatologist to see if she could figure out why I was itching all over. She gave me a steroid shot and a prescription cream to help with the itching. I went to Allergist to see if she could find anything. Nothing. She suggested that I take over the counter Allergy medicine. I tried all the OTC allergy medicines and they all made me sleepy all day so I stopped taking them. I started using Bragg's ACV. It helped with the heartburn but the itching would not go away. I kept searching on the Internet for possible causes of the itching because that was bothering me the most. I ran into an article about Wheat and the harm and can do to your body. I asked my doctor for a test to see if I have Gluten sensitivity and the test came back negative. I'm not sure which test she requested but I decided to start a Gluten-Free diet anyway. I started the Gluten-Free diet on 4/9/2013. The only diary I consume is cheese. I still eat sweets (fruit, candy, and honey), white rice and potatoes and I've lost 4lbs in two weeks. I'm still learning what I can and can't eat. I bought some Gluten-Free cookies, crackers and chips for my kids but I've also been eating them. I've learn just recently that I probably shouldn’t eat these items just yet. The itching has decreased but not completely gone away. The bumps on my face have disappeared until I eat something that contains Gluten. I went to a birthday party a week after I started the gluten-free diet and ate a piece of cake. The next morning my stomach was aching really badly and I itched all over for an entire week. I still have constipation. I have 4yr old twins and my daughter has been itching since September/October 2012 so I think she may have the same sensitivity. It seems like an ingredient was changed in something because I don't recall the itching before then. My son does not have the itching symptoms.
  12. So, I am still trying to figure out what's behind this latest round of food sensitivities. I just ended my 9 days without eggs and 7 days without dairy or corn. None of this seemed to improve the recent breakouts on my face (covering my whole face, been going on for several weeks now). I'm starting to wonder if it might be a reaction to sufites -- I've seen some threads on this site mentioning it, and it could explain why I seem to be reacting to foods that don't necessarily group neatly into categories like dairy, corn, soy, etc. I'm pretty sure I've had reactions to vinegar (balsamic and white wine), red wine, Enjoy life bars with dried fruit in them, hard-boiled eggs and homemade gluten-free baked goods that contain eggs. The main thing is the little acne-like bumps all over my face, but I also have a kind of oral allergic response reaction and my face feels kind of tight and itchy and sometimes my face and ears get red/hot. But it's not hives or extreme symptoms like those I get with my walnut allergy. It could be worse, but I'll be glad to figure this out! It's gonna be a challenge, but I think I'll try eliminating sulfites this next week and see if that does any better. (Already excluding nightshades, tree nuts, and raw celery -- and gluten, of course.)