ellen123

Thanks, everyone, for your great suggestions. I'm not sure which one I use but if whatever I do comes out successful, I'll let you know.

Ellen

Does anyone have a tried and true stuffing recipe that's gluten-free but also doesn't rely on cornbread? I have family members who have multiple food allergies (corn, casein, eggs) in addition to gluten intolerance. I've tried two experimental stuffings so far (stuffed a chicken each time) using gluten-free bread made primarily from brown rice flour and no corn (or dairy or eggs) but the texture is mealy and yucky, which was kind of predictable given how most gluten-free breads have a tendency to be dry and mealy. I'm thinking of experimenting with gluten-free crackers instead to see if that improves the texture, but I'm running out of time, and these experiments are getting expensive!

I'm not sure if this links to the same article but my son just sent me this link to a Chicago Tribune article about Whole Foods labeling issues.

Open Original Shared Link

Ellen

I have not sought an official diagnosis because, as a retired lawyer with a lot of negative experience with the insurance industry (and also as someone who knows from personal experience how tenuous health coverage is when you're not in a group plan), I don't want to take the chance of being denied coverage, or terminated from my individual plan, now, or somewhere in the future. I also have a long-term care policy which I may not have gotten if I were diagnosed. I don't need the official diagnosis: I am 99.9% sure I have celiac disease, both because of the nature of the symptoms I've had and my miraculous recovery from most of them since I became completely gluten-free last February. If I seriously need to test the waters, I can always revert to a gluten-filled diet and see what happens. But why bother? I'm so incredibly relieved to be without the pain I had (and the dermatitis herpetiformis that drove me crazy with itching), and eating gluten-free is not that difficult once you get the hang of it -- well, at least for those of us whose kids are no longer living at home. So I can't see the advantage of a diagnosis as a general rule. There may be specific situations in which it might be helpful or necessary.

Are you sure there's not another cause lurking out there? For instance, many DH sufferers find that iodine (such as in iodized salt, shellfish, seaweed) and NSAIDs such as ibuprofen, advil, etc. aggravate the rash and can cause an outbreak. This appears to be the case for me, and I've read similar comments on this forum.

Many people on this forum who have those itchy bug-bite-looking bumps say it can be DH. I have them too, and although I haven't had them biopsied, I believe it's DH. I had it only occastionally, a couple of times a year maybe, before I went gluten-free. Since becoming gluten-free last winter, I now get the bumps much worse if I accidentally ingest gluten (I get more of them, for a longer time). and it's also aggravated (in me, and in others on this forum) by iodine in salt, shellfish, seaweed, and also by NSAIDs (non-steroidal anti-inflammatory drugs, such as ibuprofen, advil, motrin -- maybe even aspirin).

To relieve the itching, try applying moist teabags directly to the rash (regular black tea like Liptons). It really helps me. Sometimes it makes the difference between being able to sleep and staying up scratching. Good luck.

Ellen

I am happily gluten-free since February 08. My severe daily neck pain is gone as are the frequent migraines associated with the neck pain. Peripheral neuropathy is improved, although not completely better. DH has gotten worse if I get cc'd (or it could be from seaweed, iodized salt, or shellfish, which I now try to avoid. The only problem I'm having is that I now have gas and stomach bloating, which I didn't have before going gluten-free. In fact, I had no GI symptoms before. Any ideas about what's going on?

I have DH and neurological symptoms but no GI symptoms. I haven't had a biopsy or endoscopy so I don't know what my villi look like. I consider myself to have celiac disease based on the fact that I have DH and neurological symptoms and that a gluten free diet has dramatically improved all symptoms overall in the 4 months I've been completely gluten free. Both the DH and neurological symptoms come back pretty quickly if I've been glutened (the DH within hours, the neurological stuff within a day). For the most part, if I've had an accidental ingestion of a small amount of gluten or get cc'd, the DH appears in a few places and the itching goes a way in a few days (the red bumps stay longer). From time to time I get a small outbreak of DH even without gluten -- I used to take ibuprofen and that set it off; or if I have a lot of seasalt or iodized salt, that sets it off as well. Once in a while I get one or two itchy bumps somewhere and have no idea why. On the sole occasion that I ate a lot of something that I thought was gluten-free but later learned was not, I had a major outbreak of DH that covered a lot of places on my body and lasted 2-3 weeks. That was the exception, however. I'm waiting for the day, somewhere down the line, when the DH will be almost non-existent.

Be advised! The biopsy for DH is quite deep, and is almost certain to leave scars--which for me, were nearly as itchy as the DH for about a year and a half. They have since faded to white, but during that first year and a half, they were quite red and very noticeable.

Wow, that's really good to know. It's amazing what I've learned from others on this site in just a few months! Thanks.

Ellen

I will be 55 tomorrow, so not quite 'old enough'. But there are a few people over 60 here. I am sure they'll reply soon, but it being a Sunday, the board is predictably slow today.

Mind you, I don't know if I will ever be well. I didn't figure out I have celiac disease until I was 52, and I believe I have permanent damage, as well as having developed other problems as a result of being undiagnosed for so long.

First, HAPPY BIRTHDAY, Ursa.

I'm also 55, so haven't quite made the 60 mark yet. I haven't been gluten free for that long, only a few months, but I am still mystified by the sudden onset of symptoms when I cannot for the life of me figure out how I could have gotten glutened. I tend to feel like the many good days I have are lucky, but I've stopped questioning why some days I don't feel well -- it took me years to get damages, so I guess it'll be a long haul reversing that.

Does any one know if just having a strong wheat allergy will cause DH, but you technically are not considered a celiac?

According to Dr. Peter Green [Celiac Disease: A Hidden Epidemic], If you have a positive diagnosis of dermatitis herpetiformis, you have celiac disease. And you must adhere to a gluten-free diet no matter how "normal" your intestine may appear. (Emphasis his.) There is no other known cause of DH other than celiac disease. Apparently the only really reliable way to diagnose DH is through a skin biopsy taken near, but not at, the site of a DH lesion. A skilled dermatologist should know how to do it. Dr. Green says there is another, almost identical disease called "linear IgA disease" and a biopsy will reveal whether it is DH or the other.

Having now learned that a diagnosis of DH means a diagnosis of celiac disease, I am still reluctant to get a skin biopsy for the same reason I expressed earlier: while I want to educate my doctors and I also think it's probably wise to protect myself with some sort of "gluten intolerant" note in my records, I don't want to be denied insurance or have any kind of celiac-related symptoms excluded from coverage. Health insurance is supposed to help us with access to medical care, not punish us for getting sick -- but that's not the reality at this point.

You can always ask your doctor to label you as "gluten-intolerant" on your records, if she feels she must write something down.

That sounds like a good idea. Or maybe I can have them write "allergies: wheat, barley, rye." I'll give this some thought. Thanks.

I've been gluten free for about 3-1/2 months now and I also noticed I was gaining weight. In addition to the explanations above, I found that I was eating a lot more carbs than I had been before and I'm guessing that contributed to my weight gain as well. In my effort to find gluten-free foods, I was relying a lot on rice and noodles for both lunches and dinners, plus rice crackers, gluten-free toast for breakfast, even noodles or rice crackers for snacks. And like the others, I found I was hungry earlier in the day after breakfast. My stomach began "growling" by 11 a.m. or even earlier. I am now trying to cut down on the carbs a bit, trying to eat more salads and protein at lunch time and saving the noodles, rice or potatoes for one meal at dinner, cooking a lot more vegetables and eating less of the carbs even at dinner. I've been using fruit or vegetables for snacks too. So far, I haven't notice big differences on the scale but my body seems to be redistributing a bit for the better. If you're eating a lot of dairy I'd cut down on that too. If you're ready to deal with the weight gain, those are my suggestions. On the other hand, many people feel deprived at first when they go gluten-free, so you may want to just let yourself get used to that before reducing carbs or doing anything that will make it harder for you. Good luck!

Ellen

I agree if you have been diagnosed with DH you have been diagnosed with Celiac.

Apart from that, if you ever have the misfortune to land in a hospital, it would be imperative for your doctor to know you have Celiac or are at least gluten intolerant.

Has your doc not wondered why you are feeling better by the way? Or is that beyond his/her ken?

All this insurance business seems like so much bother if you can't even use it. I would bet though they don't even recognize your disease officially like the others suggested. However it should be on there unofficially with your docs that you are severely gluten intolerant.

Thanks, Yolo. Please see my reply to Ursa's comment for the answer to why my doc hasn't noticed that I'm feeling better now. In short, I don't go to doctors unless I'm scheduled for my 100,000 mile service, or I feel like I'm dying.

But you're right. It feels like my doctor should be informed, not so much for any reason I can think of but more so for the reasons I can't think of. What if I wind up hospitalized and they feed me some kind of gluten-laden intravenous solution or something? (If there is such a thing. . .) In any case, this insurance system in this country stinks, doesn't it?

Ellen, you are saying you have DH. Were you officially diagnosed with that? If you were, than you have been diagnosed officially with celiac disease, even if your doctors didn't understand that. And I suspect neither do a lot of insurance companies.

The ONLY cause of DH is celiac disease (even though not all people with celiac disease get DH), and the ONLY valid cure for it is the gluten-free diet.

And an awful lot of people with celiac disease have thyroid problems, there is definitely a link.

Thanks, Ursa Major. In fact, it was your comment on another thread that made me understand for certain that I do have celiac disease. I am positive I have dh, but no, I have not been tested. I am a person who seldom goes to doctors. In fact, in spite of years of pain in my neck, for the most part I didn't seek treatment, as on the few occasions when I mentioned it to doctors, they didn't seem to take it seriously or know what to do -- so I just coped with it. I tend to be kind of stoic about pain and I don't have much confidence in western medicine as a rule. After I developed peripheral neuropathy in addition to increasingly unbearable neck pain (for which physical therapy did nothing), I researched, learned about celiac disease, and treated myself with a gluten-free diet. Before that, I always thought of myself as a really healthy person who just was unfortunate to have a bad "weak spot" -- my neck, which has given me 25 or more years of chronic pain and frequent headaches.

I will look into Enterolab relating to my daughter. Thanks again. Your replies are always helpful.

Ellen

Why do you feel you have to share this info with your doctor? First off, they'll discount your self-diagnosis and they almost certainly won't diagnose you based on that. They'd probably want to take blood tests and do endoscopy, which will be negative most likely since you're gluten free. Just save yourself the hassle and anger and don't involve your doctor.

Tell your friends, family you're a celiac or allergic to gluten (expect limited understanding) and don't worry about not having a note scrawled in your file somewhere. Chances are the doctor will decide you're depressed, not gluten sensitive, and should be on antidepressants, because you're making up weird diseases to have.

Sorry, I guess I wasn't being clear. I don't need the official diagnosis or a note scrawled in my records.

I want to tell them because I feel it's important to educate anyone and everyone who needs to know, not just family and friends, but health practitioners too. Especially since my daughter was given misinformation about it and they are likely to similarly misinform other patients. My question really was: assuming they do believe me or at least believe celiac disease is a viable possibility, are they obliged to put it in my records? Even if they're not obliged to do so, would a conscientious doctor feel it necessary to note it in my records even if I don't want it in there and don't want to be tested? Can I tell my doctor about it and then insist that it doesn't get mentioned in my records, especially if they don't test me and it's just based on my "belief."

I am wondering about this because I actually think my family doctors are caring and concerned, not stubborn and arrogant as many doctors seem to be. I don't blame them for not picking up on celiac disease in my case, since I myself did not tell them all my symptoms (because I didn't make the connection myself, and I have a pretty skimpy medical file -- I don't go to the doctor unless I really have to). Their failure to test me for celiac disease is understandable under those circumstances. I just think they are ignorant of the ramifications of celiac disease (at least the nurse was) and I feel like it's important for us to educate the medical community as well as friends and family, at least when it's possible to do so, instead of blowing them off like so many of them blow us off. Of course, I can always send them an anomymous letter or send my daughter's nurse the Dr. Green book with the thyroid pages highlighted. I'm just wondering what a conscientious doctor's obligations are relating to noting this in medical records. Can I discuss it freely and then insist they don't write it in there? Or will this just open up a fear-of-malpractice can of worms?

I am anxious to inform our family doctor about the fact that I have celiac disease but I don't want it in my medical records because I am afraid it will result in a hassle with my current health insurance company as well as hinder my ability to get health insurance in the future. Even though I wasn't aware of celiac disease when I got my insurance I know from past experience that the insurer will likely question whether we "failed to disclosed" something and delay claims, threaten to discontinue me, etc. (it's an individual, not a group plan). I also fear that it may hinder my ability to get insurance in the future. Since there's nothing my doctors can do for me at this juncture, I haven't informed them. However, I feel they need to be educated about this, especially since my children both go to the same medical practice and they haven't yet been diagnosed.

I diagnosed myself through research of my symptoms, successfully overcoming symptoms through a strict gluten-free diet, and observing the consequences when I accidentally ate something with gluten or was exposed to cross-contamination. Celiac disease didn't occur to my doctors when I went to them for longstanding neurological symptoms (pain, headaches), although in their defense, that's the only symptom I presented to them (I don't have GI problems, and I had not connected my DH to the neurological symptoms at that time, so I didn't mention the DH). But now that I am aware, I suspect that my 18 year old daughter may have celiac disease. To make matters worse, when her recent blood tests showed slightly elevated thyroid numbers and my daughter said "My mom thinks I have celiac disease," the nurse practitioner said, "Oh, there's no connection between celiac disease and your thyroid." So of course now I HAVE to educate them and I will. I may even donate my copy of the Dr. Green book to their practice. But my question remains: can I inform my doctor that I am certain I have celiac disease and insist that they do not include it in my records? Do any of you have this same issue, and how have you handled it?

Incidentally, I understand Congress just passed a law preventing the results of genetic testing from being used to deny people insurance coverage. But that's a little different, since in most cases genetic markers don't clearly show the existence of a disease, just the tendency toward it.

Ellen

About the only thing I can tolerate anymore....and not get DH is Tylenol. My DH outbreaks WERE getting less and less and smaller bumps. Somehow I got glutened (I think from a product that I thought was gluten-free and apparently wasn't), and I had a MAJOR outbreak of burning blistery rash. Guess I'm starting at ground zero again to get the DH out of my skin. Does the danger of DH outbreaks ever really go away again? Hope so!

Me too! I had begun to think I was getting off easy, as my DH outbreaks were getting milder after only a few months of being GH. Then I got glutened by assuming something was gluten-free that wasn't, and I had a major outbreak too. It lasted 2 weeks and covered places I didn't even know I had! Sorry to hear you're in the same boat as me, but since we've been successful before, we can do it again.

There are I think five types of anti-inflammatories. One is the advil/ibuprofen/motrin category - the stuff you get over the counter. If one doesn't work for you, it's likely that the others won't either. Mobic is another type. It's a prescription drug, once a day. Relafen is another prescription drug. So if ibuprofen isn't helping, you might ask your doctor if you can try a different one.

Thanks for the info -- but the problem is not that advil/ibuprofen/motrin don't work. They work great for my headaches if I take 2 or 3. The problem is they aggravate (activate) my DH, which lately has been more irritating than the migraines! I wonder whether Mobic or Relafen would have the same effect as advil/ibuprofen in terms of instigating a DH outbreak.

Ellen

Motrin or Advil really are the same thing as Ibuprofen, I'm afraid.

I also can't tolerate Aspirin, Ibuprofen or any related drugs. The reason is, that they are extremely high in salicylates (in fact, that is all Aspirin is).

I tried lots of things, but the only thing that will stop a migraine for me (if I take it early enough, there is a point when nothing will work any more) is the combination of one extra strength Tylenol, and one Tylenol with codeine, which you can buy without a prescription here in Canada, but need a prescription in the U.S.

You could try a homeopathic migraine remedy, it works for many people. I also find that when I see my chiropractor when I have a migraine, he will do a special adjustment that will often stop it.

Thank you, Ursa. I'll try playing around with E.S. Tylenol first, then if necessary will try to get a prescription for the one w/ codeine. I'll also look for homeopathic migraine remedies -- I have one for "trauma" type joint and muscle ache that I've used with some success, but not one specifically for headaches.

For some good info to get you started about DH/Celiac, see Open Original Shared Link

"Less than 10% of patients with DH have GI symptoms, yet if you have DH, you always have celiac disease. "

Wow. I didn't know this either. Thanks Happygirl (and Ursa) for this information. I clearly have DH and other symptoms but am self-diagnosed. Since going gluten-free and seeing obvious improvement, I've been telling myself and others that at most, I can say I'm "gluten intolerant" or "gluten sensitive" while being unsure that I have celiac disease. Hmmm. This kind of takes the wind out of my sails. Although I've been committed to staying gluten-free forever, I was hoping somehow I'd have a reprieve from the actual diagnosis.

Hello friends,

Now that I have learned that anti-inflammatory drugs like ibuprofen (and aspirin) caue new outbreaks of DH in many people, including me, I need some suggestions about the most effective pain-relief for headaches and/or neck pain. Since becoming gluten-free, I now have far fewer episodes of severe neck pain and migraines, but they do crop up from time to time, and I really need to kill the pain in order to function. Massage, stretching, etc. are not enough. What do you use?

Since I normally avoid medication unless I really have to take it, I'm hoping some of you use something not terribly hard on the body -- but maybe that's asking too much.

Thanks! Ellen

Oh of course! Liquids and gels . . . . I guess I was picturing the Tasty Bite boxes in my mind and didn't think about what's inside them! I guess all the Tasty Bite curries have to go in luggage.

My understanding is that the TSA prohibits liquids or gels and won't allow the pouches in the cabin. I could be wrong. But they still have the rule that you can only carry on 2 ounces of shampoo. Baby formula and some other required medicines are exempt. I don't think they'd make an exemption for celiacs because we can always eat crackers or Lara bars, right?

~Laura

While everyone's advice has been great, I feel like Happygirl really summed it up: if you have any doubt, just don't eat it. If you haven't read enough yet on any given day to know that what you're eating is safe, and that it's been prepared safely, just say no. I have learned this the hard way, and I have to keep reminding myself every day. Yesterday, for example, I was visiting my dad in the hospital. There was a cafeteria full of many many choices -- salad bar, grill food, "healthy" vegetarian dishes, meat/potatoes/vegetable, so many things, and I started thinking "There's got to be something here that's safe." But in the end, as I walked around and looked at each thing, I realized I had no idea what was in each dish, how it was made, what spoon may have been first used to spoon out gravy before it was used to spoon out chili. Even the salad bar wasn't 100% reliable. So I just ate a banana and a bag of potato chips (after reading the label), and didn't have the energy to get into another discussion with my table-mates about why I wasn't eating something "better" so I just shrugged and said I wasn't very hungry. I was actually fine with what I was eating because I didn't want to get sick and I figured eventually I'd get home and eat what I wanted.

So my advice to you, in addition to everyone else's great words of wisdom, is to not get too wrapped up in worrying about these situations. If you know you're going somewhere where the food situation might not be easy (including a restaurant with family or friends), just eat before you go, and have something really light once you get there. If you're going to a better restaurant, or even your regular favorite restaurant, the chef and wait staff will usually try harder to understand your needs and accommodate them and you can often eat out safely. But if you're not sure, eat little and don't worry about it. There will be more food later.

Beware of green tea in Japanese restaurants! Glad to hear you know about soy sauce (and you can buy individuall gluten-free packets, by the way), but I discovered the hard way that green tea is sometimes made with barley.

Four months into eating gluten-free, I find it gets easier every day. I'm cooking more, shopping faster, and still eating out, but just choosing more cautiously. My symptoms were markedly improved within the first week. My relapses (due to accidental gluten consumption) occur less frequently now. Best of luck! Feel better!