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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 FREE email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About FranDaMan

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  • Location Western NY
  1. 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.
  2. 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!
  3. 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.
  4. Frankenmuth Anyone?

    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.
  5. Tired Of Dapsone

    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.
  6. Scalp Outbreak?

    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: 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.
  7. Scalp Outbreak?

    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.
  8. Scalp Outbreak?

    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
  9. 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 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?
  10. 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
  11. Could This Be Dh? I Have To Ask....

    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.
  12. Could This Be Dh? I Have To Ask....

    I'm way late to this discussion but the symptoms are classic. The symmetry is uncanny with this stuff. I got it on both elbows first, then both "cheeks" and then the knees. My doctor was giddy when I showed him my elbows and knew instantly what I had. The Dapsone stopped the itch within a few hours and a day or so later the lesions were disappearing. The side affects are frightening so be aware of those and get those blood tests done. I was on 100mg/day dose for four months then stopped (with permission of my doc). I know I was gluten-free in all my foods as we prepare it all at home. It took eleven days for the first little itchy to reappear so I know I'm almost clean but have a few more months to go before the skin beasties all subside. I took the full dose again for two days and then went to 1/2 a pill. So far so good. I had been feeling a bit weak in the arms and legs on the 100mg but not so bad on half the dose. To answer your question though, before sophisticated tests the prescription of Dapsone followed by clearing up was proof enough that it was DH. So I'd say he reached his tipping point and it's no more cheating for him!
  13. I'm one of the folks who "only" has DH and really not much else in the way of symptoms. However, since my diagnosis in December I've walked the straight and narrow with regards to gluten. Emptied the cupboards, wifey now makes yummie gluten-free bread, etc. Problem is I'm a bit bored with just rice chex for breakfast and was looking for something different. I work evenings/nights and was shopping at 2:00am this morning and in my haste I grabbed a box of puffins peanut butter flavored cereal. I did take the time to see WHEAT FREE on the box and moved on. Anyway, I just had a big bowl and then I read the actual ingredient list to see oat flour. And it definitely doesn't say gluten free just wheat free. So, my concern now is that even though I'm mostly asymptomatic that after four months of clean living am I likely to get some stomach ills? Anyone have issues with this cereal in the past? Should I just ditch the box and move on? I doubt this is a real big deal for me but I'm mostly ticked that I slipped up and really want to stay clean for the long haul.
  14. Duke University Area

    Actually that helps quite a bit as there are links to various restaurants in the area that either are gluten-free or willing to try. Thanks so much.
  15. Duke University Area

    My father-in-law has some tests next week at Duke and my wife and I are headed down from Western NY. I need some input on eateries in that area (already did a search here and will look into Changs). Probably more problematic will be the twelve hours driving there. Since I can no longer just hit a fast food place on the fly while getting gasoline I need suggestions for mid-Pennsylvania as well. We'll be doing the I-15 to I-11 to I-95 corridor and heading through DC (shudder). There is a huge buffet place on the way, I believe near Lewisburg? Perhaps I can graze safely there? Pre-gluten-free it was a regular stop now I just don't know. Any info is appreciated.