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About FranDaMan

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  1. Quick search gave too many responses to TGI Fridays but none to TGI Fridays Buns (or similar) so... I was talking with my sister-in-law (Gluten Intolerant) and she spoke highly of a pre-packaged bun from Fridays. I was hesitant but she gave me one (apparently you can buy them from the restaurant?) and I tried it. Since I'm slow to react I won't know about gluten for a bit but I can definitely say it is the closest to "real" I've had in years! Spongy, doesn't crumble while eating a sandwich and tastes good. Color me impressed! I tried to determine the manufacturer or if Fridays actually makes them but I can't locate anything worth pursuing. Anyone have information on this? Thanks in advance.
  2. I've been tempted lately to buy Cheerios but I'm wary of their gluten-free claims. The uproar last fall over the recall and the lawsuits seems to have died down yet I'm concerned. A search didn't provide anything more recent so I'm looking to all of you to fill me in. Did I miss something, has this been resolved, or am I right to remain on the sidelines for a while longer?
  3. Thanks. I couldn't remember the name of the cream. Seems it is acne oriented and I haven't had that in 40 years. Although I will discuss it with the dermatologist. I eat mostly at home but there is one weakness and that is a fish fry. I know the ingredients are all gluten-free but I need to talk to the owner to see about the oil. That could be the culprit.
  4. Infrequent poster as I'm "normally" under control. I was diagnosed with DH/Celiac in early 2009. My primary physician put me on Dapsone and it was amazing at how rapidly symptoms were abated. Jump on the gluten-free diet and move on. After about a year I'd had enough of reading side effects of Dapsone so began weaning off. One pill every other day, 1/2 every other day, etc...until I'd gotten off and no more flare ups. In September of 2012 I traveled to Europe (Oktoberfest and ALL that brings). As expected my rash reemerged a month later. Back on the meds (already back on the diet). We're now well over 3 years and I'm still struggling with the rash. My primary was concerned with some blood work (every 6 months) last month and I got off Dapsone completely. About 7 weeks now. Follow up blood work a month later and much improved. The DH flared right up of course and I'd hoped it would be a parting gift but it is still going strong. I'd forgotten how horrible it is! Anyway, my primary now has me heading to a dermatologist at this late stage in the game. I'll keep the appointment as I should, but I'm curious if there is really anything to be done beside the diet and waiting it out? I've heard of a Dapsone cream but have no idea of it's efficacy or effect on blood and liver. Looking for information prior to the visit on the off chance I'm getting someone who will want shots and steroids and all of that stuff and dismiss the rash for what it actually is. Thanks
  5. Sooo, per the GFWD posting it seems that there could be many boxes of contaminated cereal out there (how many boxes do they produce in 24 hrs?) but when averaged out the batch tests to under 20 ppm and is labeled as safe. I'm not liking my odds on this and I sure do miss Cheerios! I think I will continue to wait.
  6. Diagnosed about 5 years ago. 100mg Dapsone for 6 months or so really did the trick. I stopped because of the med power and broke out again. Sooo, another 6 months on the 100 and then I tapered to 50 for 6 months and all was good. Until I wasn't good! went to Europe a tear ago next week (I'm in the U.S.) and went off plan. Figured it was a last trip for me so what the heck. Broke out a few weeks later of course. My dilemma now is that no one seems able to fill my prescription. Is there a substitute of any kind? Oh, more to the original question, I took about 16 months to shed it the first time and was very much gluten-free the whole time. Right now I'm approaching a year. I had a doc appt this week so stopped for two days to see and popped out all over so I'm not yet clean. Like I said my issue right now is getting refills! Good Luck!
  7. Infrequent poster but very frequent lurker. Diagnosed via skin biopsy in January 2009. DH is my only "obvious" symptom. So, having been gluten-free for nearly 4 years we were going to Europe in the fall of 2012. I'd decided I would indulge myself as it will likely be my last trip to Europe with retirement approaching and the need to really tighten the grip on the pennies. I did bring a supply of Dapsone just in case but I was really concerned with a total meltdown since I'd been clean for all that time. Would I get the full on stomach response? Brain fog? I didn't know and thankfully the answer was no. (Again, don't try this at home!) It was nice to drink a real beer and eat real baked goods even though I knew in my heart it was a fools errand. Anyway, I escaped without any gastro issues that I know of and immediately returned to total gluten-free. The expected rash DID arrive about three weeks later. I thought that was quite a bit of time but there it was. I went through the Dapsone I'd saved from my issues in 2009 and recently got a fresh supply as it is an ongoing thing. I find that if I use a full dose for a few days I can then go to a half dose with no issues. (Unfortunately I ran out of the old a week before I could get the new. I now remember just how awful DH can really be.) My question here is really about the Dapsone. I know for me it knocks the itch down in 24 hours and very soon after the rash begins to subside. What I don't know is whether it is doing any healing for the innards or just the skin? Does anyone have info on that? Thanks in advance.
  8. I've read a few posts about Frankenmuth but most are a bit dated. So, now that I can no longer just eat and drink to my heart's content I'm wondering if anyone has more recent experience there? My wife and I had the privilege of visiting Germany and Austria a few years ago in my pre-celiac days and will be going from Rochester, NY to Green Bay and realized a slight adjustment in our travels would put us in Bavaria! Any information would be appreciated.
  9. I also think there are other variables involved. I was fortunate to get a quick diagnosis of DH mostly because of this site, webmd and others. My initial outbreak was beginning to spread when I got my doc involved, skin biopsy and Dapsone. I took the 100mg for about 8 months and then started cutting them in half for an additional 4 months or so. January first I stopped it entirely and so far have no outbreaks. I am very strict in my diet, eat out very infrequently and made darn sure my relatives started to "get it" with regards to my issues. Also like I said this was my INITIAL outbreak. I didn't have symptoms misdiagnosed for years and oodles of anti-bodies fighting me every step of the way. I was fortunate from what I can tell. Like many of us north of the Mason-Dixon I am low in vit D (doesn't help when you work nights as well...sleeping when the sun is out!) and compensating that as well as a good gluten-free multi. Other than the diet that is all the changes I've had to make. Like I said, I'm fortunate to have caught it so quickly. If you had the outbreaks for an extended length of time your anti's built up much more than mine most likely. I guess what I'm really trying to say is that all of us have different symptoms, issues, lengths of time in this and no one solution fits everyone. If you are strict on the diet, and I do mean strict, with the Dapsone your outbreak should be in better shape than it was. With a consult with your physician perhaps you can begin weaning off of it? On the other hand there are people on this forum who have taken the drug for decades with no apparent side effects. Best of luck.
  10. I live on the west side (Mumford) and spend a lot of time at Agatina's Restaurant in Gates. Not only do they have a gluten-free menu but if you select from the main menu they will check with the kitchen to see if it is naturally gluten-free or if they can alter it to be so. They also have for desert a gluten-free cholocate truffle with raspberry sauce that is to die for. Our favorite waitress knows now to pull a piece from the fridge when I'm halfway through dinner so it warms up before serving it. Nick's Deli and Pizza (also west side...Chili) has pizza shells, bread, cookies, pumpkin loaves, etc. as well as gluten-free pizza. I'm partial to the white version. The Rochester Celiac Support Group is at: http://www.rochesterceliacs.org/ and they are very active. I've only attended three meetings as my work schedule just doesn't fit but they are an awesome bunch. Wegmans of course is really on board. They have recently remodeled the Natures Goodness areas (I think that is what they call them) and expanded the gluten-free area and better labeled it. Hope this helps.
  11. Just a follow up to my original post. I finally did kick the Dapsone. I have zero outbreaks (other than funny itches on the scalp). On the plus side I was diagnosed very quickly with DH during my first outbreak so it's not like I had the rash for years and built up all the antibodies in ridiculous quantities. To be honest I was quite nervous about stopping it as the itching seemed to me equal if not worse than ivy and I'm unfortunate enough to find that at least once a year. I'm also fortunate to live near Rochester, NY (if you exclude our marvelous winters) as there is a very active gluten-free community with stores and restaurants that "get it" and actually respond to our needs. Fortunately I'm not highly sensitive (since I wasn't breaking out or worse for a long period of time) but I'm still very strict on what I eat and where I eat. Anyway, blemish free for about eight weeks so I think the diet has worked its magic.
  12. I've been gluten-free for a bit over a year now. I rarely eat out and I do the shopping and food prep. Our house has also been "altered" to be gluten free. I am a DH sufferer and have been on Dapsone for a year now. Initial dosage was 100mg and it kicked the rash very quickly. After 5 months I stopped taking it to see if I was good to go or if it was still in me. (I'd only had one outbreak and was diagnosed quickly so maybe not too much buildup)It took 13 days for the dots to begin so back on the Dapsone but i cut them in half and that worked for the past seven months. I have several months supply and thought it was time to try to get off it again after the new year. So far the old areas (elbows, knees, etc.) haven't flinched. However, I now have many areas on the edge of my scalp that are breaking out like I have acne. Let me point out that it has been forty years since I experienced that! Anyway, they begin as hard bumps under the skin and then surface just as a pimple might but there is never a proper head for a pimple, no itching to speak of and no burn like in "proper" DH. I could get back on the program for a week or so and see if it magically clears up but wouldn't really know if that was it or not. Anyone have this type of outbreak? I'm not really afraid of the Dapsone per se but if I don't need it all the time I'd just as soon not be taking it. Thanks
  13. OK, so it looks like we're all drinking the Kitchenaid Kool Aid! So the question still lingering here is which model? Pro line 6 series or the Artisan? Cuisinart has a 5.5 quart version with a stronger motor and won in cooks.com competition and I'm considering it but read a few reviews where people thought they were poorly or cheaply built. Anyone have knowledge on this one?
  14. Since going gluten-free my wife has been killing herself (and subsequently the hand mixer) trying to provide us with at least one loaf of bread per week. We have a breadmaker now and it does quite nicely but we still have a need for a new mixer for anything we want to actually bake. I searched the forum and see threads about stand mixers that are about three years old now and I'm wondering if anything has come onto the market we should know about or if we should just head out and grab a Kitchenaid and get on with it. Thanks
  15. Yea, lightheaded, dizzy... I asked the doc to check the B's and the D's in my bloodwork and my vitamin D level was way low (double whammy for me working nights so I don't get much sun and living in the north so there isn't much sun to begin with!). Now that I have that in check I don't feel like that anymore. Plus going to 1/2 the original dose probably helps as well. But I did notice relief when we got the D levels up.
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