There are many rashes that LOOK like DH. And dapsone is used for other skin problems besides DH. No reputable doctor would diagnose someone with DH just by looking at it, especially if five biopsies had negative results. You may have been to dozens of doctors but remember, a lot of us had to go through dozens of doctors before we got a correct diagnosis. There are a lot of doctors out there who really don't know anything about celiac (or much else for that matter.)
Mitch, Mitch, Mitch. I'm so sorry you have been mislead to the point you are suffering for it. Please, read these articles (plus the one I linked to earlier from the NIH). National Institutes of Health, The Mayo Clinic, and the University of Chicago know what they are talking about, and yet because your doctor who didn't even do a biopsy on you gives you false information he has not only mislead you about your condition, but I believe he has actually put your life in danger. Celiac will kill a person slowly, but a true allergy can kill a person right NOW.
Please, go get a biopsy. And get it from a GOOD dermatologist. SHOW him the links provided here so he will know how to do it right.
CELIAC is an autoimmune disease. And DH is the celiac manefested in the skin. And no matter what your doctors may have said, if you haven't had a biopsy, especially with your far from typical for DH symptoms, odds are strongly AGAINST you having actual DH, and strongly in favor to your having a wheat ALLERGY.
Mitchgam, pardon me for jumping in here, but you DO realize that celiac is NOT an allergy, don't you? It is an intolerance, which is a totally different thing. It sounds to me that what you are dealing with is a true allergy. Did your doctor do a biopsy of your DH, and if so, how did he do it? Did he take a biopsy of an active lesion or did he biopsy the skin right near an active lesion?
Oh, and here is an article from the NIH that explains that it is common for people who remain strictly gluten-free to still have DH flares even two years later: http://celiac.nih.gov/Dermatitis.aspx
OK, I'm done. We are trying to help you but you don't want to be helped. Do what you want. Eat what you want. You are a drowning person who keeps batting away the life preserver people are throwing your way. I wish you well but I'm done beating my head against your brick wall.
SMRI, what you need to remember is that if it has wheat, the law is that it has to say so. So for an ingredient you never heard of, if it is made with or from wheat it'll say something like, "ambirentinutios D (from wheat)" (Pretty cool name I made up, Huh? )
Now rye is something I don't think any of us has ever seen outside of bread or crackers so that one is no worry.
Barley is the only one you have to worry about. Mostly you will find it in the ingredient malt. And the thing is, barley is expensive compared to things like corn so if a product DOES contain barley, a company will most likely let you know. It's kind of like they are bragging about what costly ingredients they use.
So wheat will always be labeled, rye is a non-issue. If you want to learn about ingredients that may contain barley you could look it up and make a list. Then if you see an ingredient that is on that list, you could either not buy it, or contact the company.
I myself am intolerant to corn and they don't have to label for corn. For a while I kept a list of all the things that potentially are made with corn, and I limited my diet so much! After a while I started contacting companies to find out for sure. (For example, xanthan gum is USUALLY grown on corn, but not always. And that shredded cheese we were talking about in the other thread? SOME shredded cheeses have corn starch. Most though are celulose starch.)
Anyway, it really isn't as hard as you're making it. I understand the paranoia. I've got that! But you're limiting yourself in ways you don't have to. Honestly, we've all been through it and we came here for help from the old timers. Some of us have stuck around to pass it forward. There is not a one of us old timers who would give you false information. If we're not sure of a product we'll say so. But if I or Karen or Irish, or any of the members who have been here for a long time tell you something is safe it is because we have done the research. We would NEVER calim something is safe if we were't sure. We don't want YOU to get sick any more than we would want ourselves to. Honestly.
This forum is here to help newbies. "According to my opinion" we DO need to discuss things, and when those of us with years of experience can ease the minds of newbies about the safety of certain products, we have done our job well.
When other newbies come here and try to scare people away from perfectly safe products, they are being counterproductive.
The bottom line is, no matter what YOU think, Kraft is a great company that is extremely celiac friendly for those who are willing to read labels, and their products are available at reasonable prices.
And I must say, I notice you were "diagnosed" by Enterolab. If you had applied the same stringent demands of your "diagnostician" as you do to food companies, you would have learned that Enterolab is a scam. I'm not saying you don't have celiac, but the "test" you had is not recognized by the medical community nor celiac specialists. There are tests available in which the science is solid and has been peer reviewed. I suggest you do better research in the future because when it comes to one's health, shaky science can be dangerous.
Read the law again. They DON'T HAVE TO TEST TO CLAIM SOMETHING IS gluten-free. If enough people complain about a product labeled gluten-free, the FDA can come in and bust them, but until that happens, companies like that coffee substitute and that beer labeled "gluten removed" can continue to claim gluten-free status. So while the new law is a start, it really hasn't changed much for us. We HAVE to read the labels. EVERY TIME.
If you read about the certification process (google it), you will see that it is very costly. That is why cerified gluten-free products cost the consumer about twice (or more) what regular products cost. If I can read a label from a trusted company and see that it is gluten-free, I will buy that product rather than relying on the certified gluten-free label. If I were too lazy to read labels or to do research about which companies to trust for accuracy in labeling, I couldn't afford to eat! I believe it was on the first page of this thread that the list of companies that are trustworthy (Kraft, Unilever, Con-Agra, etc.) was posted. So you don't even need to do the research because it was already done for you!
So rather than demanding that these good companies spend all that money for certification just so you won't have to bother reading the labels, let those of us who DO read labels and DO know which companies to trust, continue to buy these products at a reasonable price.
OK, one more time: Many products claim to be gluten-free but if you read the label you will find out otherwise. For example, I just read a thread about a coffee substitute (Dandy somethingorother) that is labeled gluten-free, but it is made with barley.
That's just like that beer folks have mentioned that claims to be gluten-free because the gluten has been "removed", but it has made every celiac who has tried it sick.
The new law does NOT require that companies test their products so there are still companies using the gluten-free claim where they should not. The only thing that is meaningful is something labeled certified gluten-free, because those things ARE tested.
Which leaves us back where we started. We HAVE to read the labels on everything we eat. If we just go by a claim of gluten-free, we might get glutened anyway. So we read the labels. And Kraft products are one of the few we can trust to name any source of gluten.
Not only that but they ALWAYS let us know if one of their products are made in the same facility or on the same equipment that processes gluten. And believe me, that is a voluntary statement that a LOT of companies don't bother with. Every day I read something written by a "supersensitive" that says they got glutened by something with no gluten ingredients, but they found out when they called the company that the stuff was made on the same equipment that processes wheat.
With Kraft, you never have to call the company because it will say so on the label.
Honestly...Kraft is about the most trustworthy company out there for a celiac. Honestly.
SMRI, you've been told and it has been explained to you over and over again. Kraft products are safe. They are one of the best companies out there when it comes to labeling for gluten.
For example, the law says if a product contains wheat it must be on the ingredients label. There is no such law for barley, but Krafte WILL tell us if for example there is malt from BARLEY. Other companies might just say malt and it is up to US to know that the malt they contain is PROBABLY from barley.
If you want to let the CYA statement deter you from eating some of the safest foods on the market, fine. It's your loss. But you really shouldn't trash a company that has been so celiac friendly for years, long before the new law took effect. Kraft is one of the good guys. We "old timers" appreciate them and have complete confidence in them. ALL of us who have told you this have been eating Kraft products for years and have NEVER been glutened by them.
So please, if you don't want to eat Kraft, fine. But you are possibly scaring off some newbies who are having enough of a hard time adjusting to the diet. If they listen to us "old timers" they will know that if it is a Kraft product, they can trust what the label says. That will make their life easier. We are here to help make their lives easier, not to scare them with unfounded accusations.
Squirming, you have been one of the most informed and helpful people here on the board. You may never know how many people you have helped, but they know. You deserve perfect health and it's so good to see you well on the way. (((((HUGS)))))
If you read the labels on products you will be safe. That's the bottom line. Wheat in some cheeses? The label will say so. If it does, don't eat it.
And for those of you who insist Kraft products are not safe, just don't buy them. That will leave more for those of us who know better. And by the way, I'm one of those "old timers" who has been glutened exactly ONCE in three and a half years. (And it certainly wasn't by cheese, nor a Kraft product.)