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Everything posted by Franceen

  1. Hey, My primary symptom was bad bad horrific DH. I didn't start getting the diarrhea until after I was gluten-free for a couple years, and got "gluten'd". The ONLY ONLY way to heal and rid yourself of DH is to be 100% (and I mean 100%) gluten free - probably for at least a month before you get improvement - and then never never cheating! I got relief from the itch by taking Ibuprophen/Advil in large quantities. It didn't make the blisters itself any more pervasive - for me. Dapsone is the drug of choice for true DH, but is a very seriously dangerous drug. I took it for a couple months, got hemolytic anemia and peeling skin, so I stopped. Thanks to this forum and some very persuasive posts to me, I realized that I couldn't say "oh, it's not a lot of gluten in Rice Krispies......it's just "malt flavoring".........and I HAD to go completely gluten-free. Read every label in the supermarket, etc. I think that if you do that you will find relief from the DH as well as the Celiac. It's what we have to do! And, after all, IT's JUST FOOD! It's not chemo or radiation or insulin or any other major medical thing....it's only food! Much luck to you.
  2. Exceptions to the "most mainstream cereals" are SOME cereals made by General Mills in the "CHEX" series. Corn, Rice, Cinnamon, Chocolate Chex are all gluten free and the boxes are marked as such. But Peter's post about the MALT word is correct. Malt flavoring, barley malt, etc are made from barley. And almost all Kelloggs cereals have it in them. As for the CC issues with products that say "made in a facility that also makes..........." it is pretty much an individual thing. Some people are more sensitive than others. I generally don't have a problem with products made in the same facility as wheat, barley products. But my level of sensitivity is relatively low compared to many people. I keep "Glutenease" capsules in my purse. At Christmas, my SIL made both gluten-free Chex Mix and regular glutened Chex Mix. I accidentally grabbed two small handfulls of the regular stuff and ate it before I noticed. I panicked , took 2 Glutenease and was ok stomach-wise. But I did get a minor DH rash several days later (I get DH mainly), but now I also get the big D sometimes from glutening. SO, it's up to you to do trial and error with the products made in a facility with gluten products.
  3. To be a little more specific..... Butchers, for many health reasons, unrelated to gluten CC (sanitary and disease related), practice some of the most diligent processes in cleaning their tables, knives, etc. They mostly don't use butcher block wood anymore as that harbors meat residue and grows bacteria. Instead they mostly use stainless steel tables. Most pre-seasoned meat comes pre-packaged and butchers don't put it on their table - and only supermarket and places like COSTCO's butcher shops would have pre-seasoned meats anyway. Most pre-seasoned meats don't contain gluten either. If you watch them, to avoid cross contamination between different types of meats, they laboriously clean their tables between each cutting - and larger market butchers have multiple tables so that they don't do chicken and beef and pork on the same tables. The slicers are cleaned frequently as are the hamburger grinders. I still say that getting meat directly from a butcher shop is probably the safest place to get meat. And liver doesn't require much butcher preparations to sell either. The most important thing about liver is that is is very fresh and kept cold.
  4. Why would the butcher's be too "gluteny"????? Meats (all that are just plain meat) do not have gluten. The butcher's is probably one of the safest places around! That's a very good place to get your liver!
  5. I have used many Sudaphed generics successfully: Walmart, CVS, Costco, BJs, Kroger. When I first tried each one I read the label. I've never had a problem with them. And I agree with "Moderator" all the companies DO tell you they are NOT gluten-free because they don't test for gluten and their lawyers have told them they HAVE to say that. So I no longer call companies. I read the label with Google open to search for ingredients I don't recognize. Been successful so far, for 6 year.
  6. Thanks Everyone for your input!! I have no known sensitivities to any of the mentioned ingredients (nor the ones common to these products). I eat soy all the time in other things and by itself (gluten-free soy sauce, soy milk), tapioca starch products, many many dairy products all the time, eggs at least twice weekly (scrambled, etc). I've been gluten-free since 2005 and never had this problem with anything other than gluten before. However, I did read somewhere (wish I could remember where) that BC and Udi's both use quite a lot of Xanthum Gum to get the great texture. And that same place mentioned that some people become sensitive to large amounts of Xanthum Gum (also Carageenan and Guar, but especially Xanthum). If that's what's bothering me, then that may now be a sensitivity for good and I'll have to watch baked goods that may have a lot of Xanthum Gum. I can't get Udi's very easily, so I won't miss that brand - but the BC mixes and Bisquick will be missed! I may do some more research on Xanthum Gum and post any siginificant findings here. Thank goodness it's not soy or I'd really be in trouble! I feel a lot of sympathy for people who are sensitive to multiple common ingredients like soy, eggs, dairly, potatoes, etc. Again thanks everyone for the input - greatly appreciated.
  7. A while back I remember a few posts about Udi's making some really sick and then also that BC Devil's Food and now the Biscquick do the same thing. The conjecture was that it is cause by a significantly large amount of Xanthum Gum in these mixes to make them have the texture they do (GOOD, Hold-together texture). I had been eating BC Devil's food for months when suddenly I ate a piece of cake and 20 minutes later was on the side of the road wretching with horrific stomach cramps and pain - the pain and wretching went away afer about an hour, but then got nasty "big D"..... I thought it was the eggs (maybe old?).....so I bought brand new eggs and made another cake. Same thing. So I thought the butter might be bad and tried again with new butter. Same thing. So I stopped eating BC mixes. Then I read about the same thing with Udi's and the Bisquick. I tried the Udi's and lo and behold I got sick from that. My S-I-L just made me a huge amount of coffee cakes and cookies with the gluten-free Bisquick and I'm afraid to eat them since I'm away from home at their house on the opposite coast from where I live. The only thing in common these products have does seem to be a large amount of Xanthum Gum, which I understand is not tolerated well at large amounts. Does anyone know anything about this, have the same experience. I think I'm going to stop eating "substitute foods, made to be like glutened foods" (Quinoa pasta makes me sick too - also has Xanthum Gum). But I'm embarrassed to just throw all this stuff out since my S-I-L just made these for me on a very tight budget@ HELP!
  8. So for those of us less familiar with the test terminology/procedures what is the interpretation of the results? I don't know what "hook and control" is nor "test line". I'm assuming that Corona has very little or undetectable amounts of gluten and the other two have a lot of gluten? If so, that's strange! Franceen
  9. 5 Yrs of gluten-free and this only recently came up for the first time! (We must not kiss enough). I came home late from work and went to give him a hello kiss and he was eating a sandwich and had crumbs all over his lips and teeth. I stopped short and so did he at the same time. Waited until he'd finished, and had something to drink and used a napkin before kissing hello. I've never been glutened by this before, but I bet we don't kiss enough around eating times!
  10. I had exactly the same thing happen to me with Betty Crocker's gluten-free Devil's Food Cake mix. I made cakes about 10 times and had no problem then out of the blue I started having the same reaction you did with the bagels! I thought it was bad eggs or rancid butter maybe. It was awful. Major stomach pain, nausea (while driving I pulled over a couple of times, but never vomited). It happened with 3 batches of the cake so I gave up making the cake. I have no idea what it could have been. I have no other intolerances or allergies either. And I made the cakes myself in a dedicated pan, yaddi yah. No cross contamination. Icing was definitely gluten-free and I 've eaten the icing alone since then with no problems. It hasn't happened with other similar products since then either. So, who knows what it could have been!
  11. No, never had a problem with nuts. I routinely check the label of anything and everything I eat too. I've been gluten-free for 4.5 years now. I don't generally worry about "made in a facility.........." and so far, haven't had a problem. I have eaten many different brands of nuts with no issues. The ones that are coated, candied, flavored, etc are the most likely to have gluten in them. I have seen wheat in some of those. But regular salted and dry roasted nuts have never been a problem - at least for me.
  12. I've been eating Curly's for several years now with no problems. I originally had emailed the company and received a reply that they were definitely gluten-free - the modified food starch is made from corn. I recently re-emailed them because they seemed to change to "new improved" this summer. Again they replied the same reply -gluten-free with Mod. Food Starch from corn. So chow down!
  13. I had no problems for the longest time then started having problems with the Cinnamon flavored ones. Haven't had them in about 6 mos because of that. Will be trying them again soon.
  14. I have been taking Mucinex for years with no problem. I also have taken the Costco (Kirkland) version (which is different - it's not time-released) with no problems. The Kirkland version is a lot cheaper, but you have to take it every 4 hours.
  15. Yes, it happened to me. I gave up on tests of all kinds because they were all negative. I was told that I would have to eat a lot of gluten for 3 weeks prior to the test. I had been gluten-free for about 3 months when I had the Biopsies (two, one from old lesion one from skin near that lesion, even though I thought it should be from new lesion - I had no new lesions!). Same goes for the blood work, negative, needed to challenge the diet and eat a lot of gluten. I was not going to do that so I've been gluten-free since Dec 2005 and FOR THE MOST PART DH free too. I get DH when I get some cross contamination, and that will always happen. I think you asked before about how long it takes to go away initially: A LONG TIME. It took more than 3 months for it all to stop appearing. After 3 months I finally stopped getting new lesions and then it took months for the old ones to heal. They itch and get scratched even after they've scabbed! NASTY STUFF. The purple scarring is typical of DH, and eventually it will turn into white scars that look like pox scars, some dimpled, some flat. Good luck!
  16. I looked up all the sour creams in the Clan Thompson Food Smart List and all the basic, non-flavored sour creams were gluten-free. One "Fat Free" however, was listed as Maybe not gluten-free (yellow flag). Several sour creams "with onion" were listed as NOT gluten-free. Generally I have never questioned pure sour cream, plain, full fat, and I've not gotten glutened from it yet. I usually just read the label and like one other member said, if made in USA and has Modified Food Starch I don't worry too much, but if there is a choice I pick one without starch of any kind.
  17. I was diagnosed with DH and Celiac by success of the Gluten Free Diet. I had amazing success, so much so that my allergist said that if I wanted the Endoscopy that would make the medical community happy, but because I had been gluten-free for 6 months it would be positive unless I ate a LOT of Gluten for a LONG time! I went to the Gastroenterologist who was supposedly the best in the area and he was surprised to find out that there could be a link between DH and Celiac!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I never went back, I never got the test. If there was any damage to my villi then it is gone now since I've been obsessively gluten-free for 3 years or more. My allergist said that's fine with her and I have the Celiac or Gluten Intolerance and DH documented in my medical record. I don't know what's right for you, but read my signature block below!
  18. Happy birthday and may God bless you today!

  19. I never can pinpoint it exactly for sure but suspect the following: Cinnamon Flavored Chex (almost certain) - do fine with the corn and rice and honey nut. Van's Waffles (almost certain because reaction is consistent every time I eat them) gluten-free Menu items at Uno's (Cheesburger item - just a cheeseburger w/o bun - suspect cross contamination in kitchen) Outback Restaurant - unknown which item eaten. But that was once out of about 50 times I've eaten there - They are the SAFEST gluten-free restaurant I've ever been to. I seem to have better luck with the European brands (Glutano, Scharr, etc) made in Europe and imported. So far also ok with Glutino pretzels. The more mainstream Celiac becomes, the more companies are jumping on the bandwagon - and rushing to the market with stuff - hence the cross contamination issues and the unintentional hidden ingredients. They get bad info, and 3rd party suppliers don't comply and they don't know it. It IS a significant problem. Right now I'm suffering from repeated glutenings from having to travel unexpectedly for a funeral and not being able to take food or choose restaurant. Did the best I could, but I'm suffering! I'm guessing this problem will never go away completely. I'm hoping for the "morning after" pill someday or the "in preparation for" pill someday (they are doing clinical trials on some now)........
  20. Dapsone is a very dangerous drug and can cause some very serious side effects. I almost died from it - although it did wonders for my DH until I hit a certain dose (100 Mg) Here's what happened - taking 50 MG I got hemolytic anemia and all the side effects of that. My liver enzymes went way out - pointing back to a hepatitis infection I'd had 35 yrs prior. I got sick like I had hepatitis again. But, those symptoms are pretty insidious (not recognized for what they were). My rash seemed to be getting worse, so the Dr. had me go up to 100 MG. Within a couple of days, it went way downhill for me. Then the rash got WAY worse and my skin started peeling off. I immediately stopped taking the Dapsone. The skin took the longest to heal (2 years). The anemia and liver problems abated over about a month or two. It was about 3 or four months before I was completely back to good health. I would NEVER touch that drug again! The info on it says all of the above are likely to happen but because the DH is SO DARN AWFUL I didn't seem to care. But, going obsessively Gluten Free finally did cure the DH! And now I'm DH Free - unless I get badly glutened. (I took the Dapsone in Feb-April 05). Good luck.
  21. All of my research has found the same thing - gluten is not absorbed through the skin - but can be absorbed through mucus membranes (inside nose, mouth, etc). I've checked all the leading authority people (U. of MD, Mayo Clinic, UVA, other famous places abroad, etc) and had it confirmed by my own 3 doctors. I have no problem using non-ingested products with Gluten either and my symptoms were Dermatitis Herpetiformis (skin rash), followed by GI symptoms after I went gluten-free. I DO, however, watch out for lipstick, nose sprays and other things that can be ingested, even if accidentally. I use shampoo, lotions, makeup (except lipstick), hair conditioners, powders, etc that have oats and wheat and have never had a problem. I can't speak for others though, but am glad I don't have to look at the ingredients of cosmetic items, since they are not required by law to disclose anything!
  22. There are many out there. The best ones (most comprehensive) aren't free. The one I use is Clan Thompson's. www.clanthompson.com His celiac site is specifically: http://www.celiacsite.com/index.php3 All the options for both the Gluten Free Food Guide and Gluten Free Drug Guide (they are software programs) are on the site. You can buy the static versions (no updates) or the database plus upgrades (additions/changes/deletions, etc) for a year. I use both databases, but the food one is quite comprehensive. Good luck!
  23. I THINK I had a problem with the Cinnamon Chex, but am not 100% sure that was what it was. A Wegman's just opened up here and I've been trying out a lot of new "gluten-free" stuff. I LOVE the Cinnamon ones to eat for a snack just plain, but for now will stop. The Chocolate ones are also on my shelf now (my Hubby bought them for me as a surprise), and I'm reluctant because they, too, are flavored. In any case, my reaction wasn't severe, so I suspect it might have been just a bit of cross contamination - which I can normally tolerate. I have no problem with the Honey Nut, Corn, and Rice ones though. Hopefully some of us are telling General Mills so they can investigate if they have any training, cleaning or ingredients problems.
  24. Of all the products you mention (milk, butter) the one you have to really watch is yogurt. Dannon has made a public announcement (somewhere, don't know where, but I saw it), that Celiacs should NOT eat their yogurts. Many have gluten and they do not do a good job of labeling, apparently. I've been glutened by Dannon (including the plain) several times. On the other hand, YOPLAIT, responded to their competitor that they would label Gluten Free yogurts with GLUTEN FREE - and I've had no problems with the ones they label gluten-free. You really have to watch the "fat-free" and "low-fat" varieties. Also the ones with all the Spenda and sugar substitutes. It seems that to make these otherwise bland yogurts better-tasting, they add glutenous products, sometimes. Also "organic" and "all natural" tends to also have a higher incidence of gluten ingredients! I stick with Yoplait "thick and creamy" and "original" and the "whips" and also the ones that are for kids in the tubes (I freeze them and take them to work). So far, so good. I also love the Greek Yogurt from Trader Joes, but don't have any Trader Joes near me. And that is also gluten-free. Good luck with the yogurt dilemma! "
  25. Definitely blowing smoke from multiple places that don't see the sun! Water is Hydrogen (2 molecules) and Oxygen (1 molecule). It can have minerals in it from the ground, like iron, magnesium, etc. But DEFINITELY not gluten which is a protein (not a mineral) found only in Wheat Barley and Rye - none of which are found in water, EVER.
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