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Sharon C.

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  1. Hi!

    They biopsied a little red speck and an area near the red speck. I wish they would have taken it from a location that was more affected by the rash, though. They took it from a place that was not as affected. I have it mostly on my calves and ankles, outer elbows and forearms, wrists all symmetric, and also some scattered on my back and a couple on my rear end. It was really bad on my elbows/forearms but that seesm to be clearing up even though I have scars. It is still the worst on my calves and ankles. When I eat something extremely high in salt- these Salt & Vinegar chips sold by Whole Foods market- I know that I can guarantee to set the rash off again because I have done it a few times already eating those chips (iodine).

    Well, thanks.


  2. Hi-

    Thanks for all replies.

    I am a little confused now. I keep my son STRICTLY gluten free because I was told and also believe that even one molecule of gluten would release an entire army of antibodies that would then harm his intestines. I was told and believe that even one tiny crumb of contamination would release an entire army of antibodies. How could I eat gluten and release armies and armies worth of antibodies into my system and yet have them be undetectable for up to 4 months? I'm not sure I understand.

    I had the rash biopsied. It was inconclusive. There are other things that can also cause autoimmune responses besides the gluten, like cancer and diseases. My rash doesn't follow the exact protocol of DH. My dermatologist was reluctant to say that's what it is because I am missing the obvious blisters that many get. I asked others with confirmed cases of DH if they always get blisters and not all of them do. So, I would hate to give up my search, accept this as DH, when in fact I have something else wrong with me that ends up overlooked.

    Maybe I will give the Enterolab a try, but I read that Enterolab diagnoses EVERYONE as gluten intolerant. has anyone ever had a negative Enterolab test?

    Thanks Again!


  3. I have a definite reaction of some kind to tomatos- my face turns bright red like a sunburn and my eyebrows can even swell. I really liked tomoatos. When I make a pizza, I use the gluten free crust, and I take olive oil and rub it on the crust. Then I cut up some roasted red peppers and grate mozzerella cheese over that, add a little more olive oil and seasoning on top. A friend suggested I put the red roasted peppers into a blender or a small food processor and that sounds like a really good idea. I make an excellent taco dip using cream cheese on the bottom, then refried beans, black beans, taco meat, jalapeno peppers, scallions, olives, etc. Everyone loves it even though its tomato free. Twice I put out a jar of salsa and no one even bothered with it.


  4. After breaking out with a rash that I think could be dermatitis herpetiformis, I went to a dermatologist that couldn't diagnose it even with a skin biopsy. The rash has calmed down alot, but I still break out mildly. I found another doctor willing to screen me for gluten intolerance with a blood test, but I have now been strictly gluten free for 4 months- since October. If it wasn't for the rash, I would just stay gluten free and not worry about tests. But I am still breaking out with this rash and I REALLY want to know if I have it or not. My son has it definitely- he had the endoscopy- but I was never thoroughly tested.

    So, now that I found someone willing to screen me with the blood test, I don't want to blow it by having low antibody levels. I plan to eat gluten before the blood test. Do I need to eat a lot of gluten? Should I eat something every day for a week? What is the best way to make sure my antibodies will be high enough to be accurate? Thanks!


  5. I called around town looking for gluten free beer. A liquor store near me happened to have this beer. It says right on the cap "gluten free". I had to steam clean my kitchen floor yesterday because it needed a good cleaning and I felt like having a beer while working. This is the first time since going gluten free last October that I've had beer. Not only is it a good tasting beer, but it's strong! I had a buzz before even finishing the first one. It's a great beer and I recommend it. It cost me $9.99 for a six pack. That's not too bad. I have paid that much for non-gluten-free beers.


  6. I have been gluten free since October 21st and although the rash has definitely improved, it's not gone. Also, without the help of Dapsone, I understand it might take longer for my skin to clear up- possibly up to a year or more. When I eat salty foods (potato chips, corn chips) I definitely see the rash act up. I will probably have to go to some university as well in order to get a half way decent test done. I have been gluten free for a couple of months, though, meaning I would need to ingest gluten for accurate blood testing. I don't know if another skin biopsy would help since I've been gluten free. If salt aggrivates it, and it's not acting up from gluten, would that affect the accuracy of the skin biopsy results? The scabs last and last and last and just never seem to go away. Any purple spots that appear to be healing spots easily turn red when aggrivated.

    Well, thanks.


  7. My dermatologist doesn't believe I have DH even though the skin biopsy was inconclusive. His reason was because the rash I have does not have obvious fluid filled blisters. It does, however, seem to linger on my elbows and knees, calves, and ankles mostly. And it leaves scars. I occasionally get a spot on my back or butt, but the main places are elbows/legs. It resembles the spotty elbow rash I have seen on the internet. I was never technically dignosed with celiac, either, because it's almost impossible to find an American doctor that's capable. My 10 year old son was diagnosed through blood tests and an endoscopy, though, with the help of a pediatric endocrinologist. He is definitely Celiac. When this rash broke out, I had been eating a yeast-free whole wheat bread, and yeast-free rye bread, thinking I was doing myself a favor because an allergist told me I was allergic to yeast. I was consistently eating it for a few months, daily, then wham- this rash.

    The dermatologist suggested I was getting bit by bed bugs, even though my husband doesn't have one single bite on him and I have had this rash since September and it's now January. I think my husband would have at least one bite in all these months. Just to be sure, I did a thorough search and found none of the evidence you would find if your bed was infested with bed bugs. I notice when I consume products high in sea salt, the bumps on my elbow which "appear" to be healing suddenly turn red and look inflamed. It will even appear that I have more of them. I don't wake up like that, it seems to happen during the course of the day and I think it's food related. It's very frustrating to have a food related rash that even appears to act up upon eating and be told I must have bed bugs.

    Are there always blisters? Because this dermatologist feels it's pointless to further investigate the DH in the absence of blisters. Thanks!


  8. For my son I use Ener-G Tapioca Lite bread (softest and most like regular bread that I can find) and make him sandwiches. Tuna, lunchmeat (Thumann's is gluten-free, and Hormel, and Oscar Meyer), or Soynut Butter and jelly sandwiches (he is allergic to peanuts and the soynut butter is tasty.) Eggsalad is another, chicken salad, or shrimp salad. To give a variety, I sometimes pack soup in a thermos, or heat up a frozen gluten-free mac and cheese and pack that in the thermos. He also likes Hormel Chilli heated up in a thernos with a cheese stick on the side. Sometimes I send yogurt with a piece of fruit, or a cottage cheese with a piece of fruit. I have also sent pepperoni, cheese, and crackers. Because his appetite is small, I stay away from "filler" snacks and just send "the good stuff" for lunch.


  9. I guess my questions are:

    Can I really consider this negative when I do have symptoms of Celiac? Should I go to a different dotor and get another biopsy? If the biopsy was done when I already went on the gluten free diet for a few weeks, would that matter? Can you get one or two flea bites and break out all over your body with a dermatitisherpitiformis looking rash, except for your face and neck, which is coinicentally, a place where dermatitis herpitiformis doesn't usually go?

    I wish this test had been more definitive.

    Thanks in advance. My post is sort of a vent/question post.


  10. When my son was disgnosed with celiac a few years ago, I asked my doctor for a blood scan. They didn't even know what blood test to order because in the 40 years of his career, this doctor had never diagnosed anyone with celiac. They called the lab to ask them what test I should get. So I had a blood test, and they said it was negative.

    In the meantime, I continued eating gluten products, drinking beer, eating breads. I only had one bowel movement per day, but it was often "not normal", either too watery, loose, or just not right. The color was not white or gray, but it was not formed. Ever. I suffer from excema on my hands for years. A few years ago, at 33, I burst a disc in my back. At 36, I have now just been diagnosed with arthritis in both hips, moderate. I am suddenly allergic to more foods than I have ever been. My scratch test came up positive for apples, pears, peaches, apricots, corn, soy, yeast, cottonseed, peanuts, hops, onions. Also, the test said I am negative for tomatoes and mushrooms but I cannot eat either one. My face gets red like a sunburn and I break out with excema sores immedaitely after eating tomato and the white capped mushrooms have me consistently doubled over in pain, so I avoid them. I also don't process carageenan very well and avoid it. They only tested for allergies, not intolerances. They only tested for foods, not preservatives or other additives. I think I have perforated intestines that allow whole proteins into my bloodstream. I used to be able to tolerate many of these foods, but I am now showing to be allergic to almost everything I try to eat.

    Since the summer, I've been having a strange rash different than my excema, and the first time I ever saw it, it was completely symmetrical. I got very itchy on my hands between my wrist and thumbs, on that bone that's there. It itched, and inadvertantly I scratched it, not thinking, and the next morning I woke up to two dark red scabs that formed over those bones. Then, I began having itchy patches on my legs that turned into dark red scabs. They'd go away and then come back. Suddenly last month, my elbow began to itch and when I scratched it, I felt little bumps all over my left elbow. The next day, I began developing bumps on the back of my other elbow. Then, as days passed, I began breaking out all over, with little clusters of bumps that resembled bug bites at first. On my forearems, tops of my hands, knees, legs, ankles, on my back shoulders, the center of my back right over my butt, a couple on my butt cheeks.

    I feared that my dogs gave me something. I ran a flea comb through them and one dog ( a tiny chihauhau) had a little flea excrement on him and I bathed and treated all three dogs for fleas. The troubling thing about this rash is that my dog did develope a little bald spot on his leg, which could have been suggestive of mites, but they scratched it and looked under a microscope and there were no mites, but I had him treated anyway. I also told my doctor and treated myself and my family for mites, just in case. I used the mite medication twice, yet continued breaking out. My husband and son never broke out. I had the dog treated a second time when I continued breaking out. He has no fleas or mites.

    I went back, had them do a skin biopsy. Of course, it is negative. The derm doctor thinks I should be able to trust the results of the test. The test came back saying something suggestive of flea bites. He did not give me a copy of the test. Apparantly, they can see urticaria under my skin but not anything suggestive of dermatitis herpetiformis.

    Fleas would never be able to live here- I have no rugs. All hard wood flooring with throw rugs that are washed weekly in hot water. The dogs are not allowed to sleep on my bed. I have so many red welts and scratches, I would have had to be infested with fleas to get this kind of reaction. Can you get one or two flea bites and break out all over your entire body except for your face and neck?

    The other night, I ate some thick cut chips with sea salt and I became dramatically itchy all over again. I've been gluten free since about 10/18 and the itch and rash was calming down and feeling better. After I ate those chips, it was definitely aggrivated. You are supposed to avoid sea salt when you have active dermatitis herpetiformis.

    The doctor did take twp pieces of skin from my arm. One was a lesion that could have been scratched, it was hard to tell, and the other normal skin from nearby.

    This rash no longer resembles mosquito bites, or flea bites, and I still have it since the last couple of weks in September, and it is taking a really long time to heal, and gets irritated. How can this be flea bites?

    He wants to put me on zyrtec.


  11. Hi-

    My son is going back for a follow up after being diagnosed last October with Celiac. They are testing him with this same test. They are not doing a Gliadin/IgG-IgA. Just a tTG, and also thyroid function and also CBC/platlet. Is this a normal way to check to see if levels have gone down?

    Also, when my son was diagnosed, I asked my doctor to screen me. He had NEVER screened anyone for gluten intolerance before. He sent me for the Gliadin IgG-IgA test but NOT the tTG. He said it "seemed" like I was negative. Is this the proper way to screen someone?


  12. Hi-

    My son is going back for a follow up after being diagnosed last October with Celiac. They are testing him with this same test. They are not doing a Gliadin/IgG-IgA. Just a tTG, and also thyroid function and also CBC/platlet. Is this a normal way to check to see if levels have gone down?

    Also, when my son was diagnosed, I asked my doctor to screen me. He had NEVER screened anyone for gluten intolerance before. He sent me for the Gliadin IgG-IgA test but NOT the tTG. He said it "seemed" like I was negative. Is this the proper way to screen someone?


  13. Hi-

    I can definitely relate to what you are going through. My son is 8 and was diagnosed last September with Celiac. He is also allergic to peanuts.

    Part of my problem is that I do a minimal amount of cooking- my dinners are pretty basic and was the easiest part of our meals to make gluten free. Breakfast, snacks, and lunchtime at school were my hurdles.

    My son is a snacker (even though I don't let him overdo it) he does love his snacks. I tried to substitute everything he couldn't have anymore with something similar he could have. It is expensive. I find myself baking more than I ever did but I'm not naturally a baker- baking feels like a chore to me.

    I was afraid that he would feel like celiac disease was a punishment if suddenly he could no longer have his snacks and treats. I wanted to show him there was a whole world of food he could still enjoy. So, now I will bake brownies or cookies, and it's good that it feels like a chore because I don't overdo it.

    Many of the prepackaged things I can't buy anymore were never good for him in the first place. When my son gets wistful about old foods, I remind him that I understand how he feels, but there's plenty of good things to eat and those foods weren't good for him anyway. Those foods are put on store shelves so companies can get rich and American kids pay the price by becoming obese and unhealthy. Now, there are hardly any transfats in his diet and most of what I'm making and buying do not contain food coloring and chemicals like the stuff in the past.

    I do find that my food bill has gone up because I do buy gluten-free waffles, and frozen loaves of bread, and $5 brownie mixes. I do my gluten-free shopping at Whole Foods because they have a big selection of gluten-free foods. I buy frozen gluten-free pizza, frozen gluten-free fishsticks and chicken nuggets, gluten-free macaroni and cheese. I just want him to feel normal and not different from other kids. If he were older, I think it would be different, and if he were younger, he wouldn't know any different and I could just raise him gluten-free and he would be used to it. But, at 8, after being able to have all these items all of his life, I think he may have been depressed or felt different, or felt deprived to suddenly be cut off from these foods.

    One thing I lean on is that Kraft and General Mills both follow a policy of listing ingredients upfront and not hiding them in other ingredients like "natural flavor." These companies are huge and own alot of little companies- for example, Breakstone's Cottage Cheese is really Kraft. So I read every label and bring my cell phone when I shop and try to screen stuff as I go.

    For breakfast I supply: an egg with gluten-free toast, or a gluten-free waffle and syrup, fruit, Breakstone's Cottage Cheese and Fruit, yoplait yogurt (Dannon refuses to say if their's is gluten-free or not), gluten-free cereals from the healthfood store (which are way healthier that that garbage on the store shelves), and Quaker makes a hot Rice cereal that you can add fruit to or honey or cinnamon and brown sugar. With eggs you can do alot- make an omlette with melted cheese, or sunny side up, etc, or scrambles with cut up pieces of fried baloney.

    For lunch I supply: Soynut butter (for you, peanut butter) and jelly on gluten-free bread, Oscar Meyer (made by Kraft) ham, turkey, or baloney sandwich, Thumann's lunchmeats (announced on a radio commerical that they are gluten-free) and maybe a big banana with a Kozy Shack Rice pudding for a fun lunch. Also, tuna or egg salad with gluten-free crackers. Ener-G brand makes a cracker he likes. There's also carrot sticks or cucumber sticks that you can add as a side thing. gluten-free bun or gluten-free roll cut in half and made into a mini pizza (watch the sauce- call the manufacturer.) Wacth out for shredded cheese- wheat is sometimes used so it doesn't stick. Kraft doesn't use wheat on thier shredded cheese. But it's easy to just shred your own.

    At Walmart one day I saw a plate that resembled the frozen kids meal plates from the supermarket (like a TV dinner plate) and I make his lunch on that sometimes and he loves that.

    Also, there's fun stuff you can do like buy that chocolate melting pot ($20) and dip strawberries in chocolate.

    Get Breyers vanilla ice cream and have it plain or put it in your blender with a banana.

    I made donuts for my son (he really missed having a powdered donut) using that Chibi dough mix, and baked them and then put on my own powdered sugar and he was thrilled.

    Homemade mac and cheese is really easy to make and much healthier than the powdered kind from the store.

    It's fairly simple to make your own chicken nuggets, and the one breading mix I found is really delicious, and I couldn't stop thinking about it for days after I made it. It's called Homestyle Golden Coatings and I just love it. No MSG, no Casein, No transfats, no gluten but TASTY.

    The Bob's Red Mill Brownie mix is excellent and most people think they are better then a brownie mix you get at the store. I add Hershey's semi sweet chips to mine and also put on some Duncan Hines dark chocolate icing for an extra touch and my son goes crazy. I brought them just baked to a party and people's mouths were watering just smelling them. Many Duncan Hines icings are gluten free but watch out for Betty Crocker because most Betty Crocker contains wheat clearly listed on the ingredients.

    Jello puddings both bought and home made are gluten-free, and there are tasty things you can do with pudding, as well as their jello. Also, cool whip and the kind in the can are gluten-free.

    Most ingredients for cheesecake are gluten-free except for the crust, so you can make a crustless cheesecake in a pyrex pie dish and when done, top it with blueberries or whatever you want.

    In the beginning the expense bothered me, but only momentarily. I am grateful that I even have options for my son, and I like to thank all those who went ahead to manufacture these health foods and these food allergy foods so that people can have choices.


  14. I was just wishing for the same type of thing this morning. I had a box of corn cereal that seemed perfectly safe for my son in my shopping cart this morning, but then I put it back because although NOTHING was unsafe on the list, I worried about trace amounts of contaminants from the conveyor. Also, for example, on Lays plain baked chips it says, "This product is naturally free of gluten." But then, on their other baked chips with flavorings, like the Pizza one, there is no such statement even though the ingredients list NOTHING about wheat, etc, or about traces of anything. I sure wish there was a test.


  15. I breast-fed my son for his entire first year, but it didn't stop him from getting Celiac. Also, what angers me is that I followed the advice written in a baby book, that recommended spiking your infant's cereal with wheat germ for some extra nutrition.

    Recently there was a radio talk show featuring celiac and I learned that in a country where Celiac was rampant, they realized a popular baby formula contained wheat gluten. When they changed the baby formula, the outbreak stopped. I think these "experts" writing these baby books should keep their advice to themselves. I also followed advice in a pregancy book that peanut butter was a nutritious snack, and I ate a lot of it. My son is also allergic to peanuts. Makes me think I should ignore the "experts".


  16. Hi-

    My son was diagnosed last Septmeber with Celiac Disease. Since I also have issues with food, I am trying to determine whether I may also have a gluten intolerance.

    I discussed it with my doctor who seemed to not have a lot of knowledge about the subject. I asked for the gluten IgA antibody test. The nurses in the office never had to write up that blood test before and they called the lab directly and asked what test it was and filled out a slip for me to take to them.

    I had the test done and am waiting for results. My problem is, I have very little confidence that anyone knows what they are doing. I wonder if they did the right test, and I wonder if my doctor will understand the results. I called up and wanted the nurse to give me the antibody level over the phone, but she said she can't. The doctor would let me know if anything was "wrong" when he calls later.

    Is there an exact name for the blood test I need? And can anyone tell me the proper number that I, an an adult female, should be over or under to consider myself either tolerant or intolerant? Thanks. I think it shouldn't be over 30, but I'm not sure. If it shows that I am intolerant, I am just going to go gluten free regardless. So I don't know if I need to go ahead with an endoscopy. I won't be eating it anymore anyway.


  17. Thanks all!

    They say that the valentines candy is gluten-free, and the truffles.

    Here's the link:

    http://www.vermontnutfree.com/

    You guys hit the nail on th head, alot of it is learning to trust. After what I've been through with peanut and now gluten, I don't have a whole lotta faith in the competence of others to understand. I just start out expecting them to not know what I'm talking about. This was a smaller company, not a big one, so I was more weary.