This Celiac.com 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 Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Thanks for posting this. I've not been in an Olive Garden for years, and wasn't aware they had a gluten-free menu. As much as chain restaurants are maligned for factory food trucked in from central kitchens, OG opens up a whole new dining opportunity now, especially when traveling.
The Steak Toscano and Mixed Grill dishes look great. They're 'normal' food. Yey!
I recognize and agree that DH is a side effect of celiac disease, I'm living proof of that. But where are the numbers to support 20-25% of us having DH?
This forum has 73 pages of posts. Doctors has 94 pages. Coping With has 724 pages of posts. I don't see the DH forum "heaving" with undiagnosed patients that would support a 20-25% experience rate, or that any great number of patients are going undiagnosed.
As a celiac and DH patient, I believe we need to be honest with ourselves and others about these conditions. It's the only way to be taken seriously by the medical community. To plant a suggestion that a DH patient stands a good chance of not being treated properly at a dermatologist I believe sends the wrong message to celiac patients. It sets up an expectation of failure before they even get to the doctor's office.
When I went to the derm lab at OHSU, a major teaching hospital on the west coast, they knew what it was when I walked in the door. But the teaching doctor on duty had me hang around so he could round up a group of residents to see it first hand. Most of them had only seen pictures of it. A real live DH patient is that rare of an event for them.
I'm truly trying to wrap my head around the 20-25% figure. First hand experience with this disease isn't supporting those kinds of numbers.
What percentage would you say is "many"? If you walk into any reputable dermatologist's office and they see watery, itchy blisters covering joint areas, they can dx DH by sight alone. If 20% or so of celiacs have DH, why isn't this forum heaving with "do I have DH?" or "what are these blisters?" questions? There are some, but not a lot given the site's size/traffic.
My local GI doctor consulted with Dr. Green about my case a couple of times by phone. While I appreciated the effort both of them made, I think my doctor benefited more as a doctor than I benefited as the patient. I still got the same standard lines and had to badger my GI doc into doing some of the most basic tests even after his consultations with Dr. Green.
Data points: My primary care physician has ~2,000 patients across all ages. If the numbers are right, he should have about 20 celiacs currently. When we last discussed DH, he said I was his only patient with it in his 25 years of practice. My GI doc said she sees so few cases that it's an automatic dermatology referral from her, because she sees so little of it that she has no experience in its diagnosis and treatment.
Yes, but the pain is over fairly quickly. It's about twice as painful as a standard blood draw, but lasts a bit longer. It's been a long time since I had mine, so I forget if they give you a shot of local anesthetic or just rub a numbing cream over the biopsy area first.
They do a punch biopsy using a bladed instrument to cut through the epidermis and dermis layers. The Mayo Clinic's site has a good drawing of one:
Mine required a few stitches.
Verdict: If this is what you have to go through to get treatment for your DH, by all means do it regardless of the pain and inconvenience. My diagnosis and treatment was a game changer for me.
A medication called Dapsone will do it. I can't imagine why your doctor didn't prescribe it while giving you your diagnosis. My experience was that itching stopped within 24 hours and blisters healed within a week.
I'd been on hydrocortone (an oral cortisone) for a couple of years, as one of the things my doctor found while searching for answers to a bad reaction to thyroid meds was that I had low adrenals, too. When I literally OD'd on thyroid, a psychiatrist ordered me off all of my meds cold turkey in order to stabilize, since he thought that combined they were all making me bipolar.
Within a week, these itchy blisters started to appear on my elbows, knees, buttocks, between my fingers, and in my ears (!!). The ones in my ears were especially bad. I never got the big rash, just the individual blisters. The nurse practitioner I had for primary care back then misdiagnosed the DH, and gave me a light cortisone cream plus an anti-fungal cream. All that did was make the blisters bleed.
Long story short, the dermatology dept. at the local teaching hospital dx'd the DH via skin biopsy and put me on Dapsone. When the DH cleared within a week, I was sent for blood tests and an endoscopy that returned my first celiac dx.
Fast forward 10 years, and I OD'd on thyroid again. In those 10 years though, I'd have occasional bouts of breakthrough DH, even while on 100mg. of Dapsone per day. But when I went off thyroid meds completely for a while, I had no episodes of breakthrough DH, so I tapered off the Dapsone. I've been off Dapsone for over two years now without a single DH relapse.
We've been slowly reintroducing thyroid meds again
Interesting links. Something to think about before you go for B-12 shots:
When I had an untypical bad reaction to thyroid medication some years ago, my doctor ran a battery of tests. After finding my B-12 levels were "dangerously" low (I think the reading was 90), I started going in for weekly, then monthly B-12 shots. But the shots barely moved the test results beyond 120, this was after he declared that I'd been shot up with "enough B-12 to last 5 years."
He then had me go in for a Schilling's Test at one of the local hospitals. What the test does is put radioactive markers on B-12 with and without Intrinsic Factor attached to it. I absorbed more without IF, to everyone's complete surprise. The radiology lab even had me come in to re-run the test for free just to make sure of the results.
Tired of forking out a $20 co-pay every month for a shot that was doing little good, I found that the cheap B-12 supplement under the Kroger stores in-house brand is derived from liver. I bought a bottle. Cost me all of 3 bucks. My B-12 levels shot up quickly to around 500 within the same period of time that shots only moved my numbers from 90 to 120.
My doctor said, "it's not supposed to work that way, but I can't argue with the numbers."
So before you resign yourself to paying for an office visit every time you get a shot of B-12, you might try a liver-based B-12 supplement first. The links you gave describing how B-12 is absorbed and processed, certainly point towards some credence for going this way.
You also need calcium to make the whole process work (probably why drinking milk works for you). I take a liquid form of triple calcium with fish oil from Applied Nutrition. It's expensive, about $10-15 for a 3-week supply at my local Walgreen's, but they don't sit in my stomach like a bunch of rocks like other calcium supplements can. The soft-gels also contain a fair amount of magnesium and 1000IU of Vitamin D per serving. I can't say enough good things about this product.
If your issues with stress, anxiety and OCD weren't caused by gluten in your diet, a gluten-free diet isn't going to cure them, of course. Four months is probably long enough to see if they were or not. You've said that the stress on your body of going gluten-free has only added to your other existing problems, and I believe you. An article I read on this site back in '08(?) equated going gluten-free to opiate withdrawal (affects some of the same receptors), which can be an incredibly stressful event.
It may be time to see a qualified professional to treat stress, anxiety and OCD separately from gluten issues.
I've got a left field recommendation for you that's helped me with energy issues, and I only mention it because you're male. If you're absolutely certain that you've not been absorbing nutrients fully, you may be anemic. As in iron-poor blood. Docs don't usually think about it for males, because we don't lose iron like females do once a month, to be frank.
The good news is that this isn't a budget-buster to rule out by yourself, if you don't want to see a doctor right now. Buy a cheap bottle of iron supplement. Take some for a few weeks. Don't overdo it. Read the label to help you decide on the dose.
A week or two later ask yourself if you did better on iron and see if you're sliding downhill again. If you did better taking iron, you won't have taken so much over a couple of weeks that it would impair an accurate test result by the time you do see a doc.
Heh. Got it, that'll be easy to remember. Bean flour is icky.
It's too bad that I'll be ditching dairy as well after the last of the milk is gone, otherwise I'd go out for some Rice Chex. Those I like. Too bad I didn't know they were gluten-free when I was looking for something else I could eat for breakfast. (And I don't know why someone can't just do a Kellogg's Corn Flakes w/o the malt syrup in it. This Nature's Path brand I bought are juice-flavored and way too thick to taste right, but if that's all there is, I still need corn flakes every now and then, so I'll eat 'em until the milk's gone and when I can have dairy again.)
Hi, and yup, I live about 4 miles from Bob's HQ in the Portland 'burbs, LOL, so easy access. I remember them when they were literally a hole in the wall. After my experience at the gluten-free bakery on Corbett on Day 3 of the diet (spitting out the apple cake after a bite or two, and ditching the bag of AP flour substitute after one use), I just don't think I'm ready for the alternate grains stuff just yet. I tried some of the gluten-free rice flakes I bought again last night after dinner, and decided I really needed to just toss the box out. They taste like slippery disks of stale white glue, not appetizing at all.
And yes, I realize this is the internet and people are going to take things wrong at times, not read everything, or read only what they want to read into a situation. I've been online for over 20 years, and I know that if I'm just consistent and honest about who I am and what I'm doing, over time people will recognize that, so I don't let anything where people misunderstand me get under my skin, even though I may point it out what's going on for emphasis sometimes.
Thanks for the tip on WalMart for the vitamins, we have one on the other side of the hill, and I can always use an excuse to stop by for some cheap Tide and Febreze!
I love Alton! Even have his first cookbook. I've always liked to cook, but when I'm in a state of distress, the last thing I want to do is get up and be creative in the kitchen, so it's nachos. Or chili over rice. Over and over.
Excellent point about absorption of meds, and I think I have that covered with my primary doc. He's agreed to let me come in a week before my follow-up appts. for the thyroid to have my blood drawn, so when we sit down we're talking about my current test results, not last October's. I go next at the end of the month. I believe those tests will become an important marker for where I am along the path.
You're the second person to mention B-complex. I can look up what's available, of course, but off the top of your head, do you have a brand/formula you prefer?
Yup! Wheat-free organic tamari by San-J. It's spendy, but it does taste great and does the job.
Thanks for your offer, I really appreciate it. I'm putting together a list of my most-often made meals for the dietician, and I'll post it when I'm done. I'm up to about 20 now, and will probably stop around 25-30. That should give anyone enough variety to pick a few things off of it for suggestions.
Wellllll, I take something a lot stronger than that already as a maintenance med. It could very well be that the gluten was oversaturating my opiate receptors to a level that the pills I take can't replace it, if gluten withdrawal is what's going on.
I saw that thread. Really interesting. I've a few things to consider about how to go forward. If I eat too much protein, I get gout. Now I'm not supposed to have gluten, and I'm learning that I need to avoid dairy as well, at least for a while.
A low-purine diet for gout would emphasize green veggies and tomatoes, fruits and fruit juices, non-yeast breads, nuts, milk, butter and cheese, chocolate, coffee and tea. Take away the dairy and I'm left with veggies, fruit, nuts, chocolate, coffee and tea. An earlier poster suggested that two apples and a handful of grapes is causing some of my problems. When you whittle it down, what's left that I can make a nutritious diet from? Not much, LOL.
I do think I should concentrate on what is as gentle as possible on me for a while.
Gluten has never had a bad effect upon my stomach. Having some chow mein yesterday has started to stabilize me so well already that I had a full night's sleep last night, and worked all day for the first time in 3 weeks or so, even stayed a couple of hours late, and I didn't feel tired at all. Went to my favorite Thai place for lunch, and had the red curry chicken over rice. Delish!
How funny, I started out on Levoxyl. I actually did better on one really old brand of thyroid, forget it's name, but when the FDA finally made the drug companies prove their thyroid meds were safe and effective (about 10 years ago?), that brand seemed to drop away, so we switched to Synthroid.
And how many times have celiac patients been on the receiving end of "it's all in your head" or similar? You aren't living in my shoes. But water off a duck's back, no harm done.
That's what this thread is about. How to accomplish just that. Never said it was about anything else except how to approach it right this time. (Don't know why I seem to have to repeat that so often in one way or another, but oh well.)
Thanks for all the help and suggestions, everyone, I really do appreciate it!
Fair question, but nope, I don't really drink that much at all, perhaps one or two drinks or a glass of wine a month. But put a Campari with grapefruit juice in front of me and I'll take two!
The only other things that have been a problem have been Synthroid and SSRIs. I had a terrible time with thyroid from the first hour I took a tablet, and my TSH has been all over the map (like it could be 1 on Monday, then 12 on Friday without a change in dose). They found that I have "empty sella syndrome" which means my pituitary gland is of microscopic size and there's nothing but benign fluid in the cavity where the rest of a normal gland should be. Early on in my thyroid treatment, my docs kept pushing Zoloft, Paxil and Prozac, but they triggered bipolar symptoms. Once they ditched those and gave me Dexedrine instead, those went away and never returned. I was monitored for four years by the same psychiatrist, and that was his opinion, not mine. For some reason, thyroid gives me depressive symptoms. My first endocrinologist literally begged me to take an anti-depressant, the change was so remarkable as my dose went up.
How did you get that out of "this wasn't done right, time for a do-over"? I'm beginning to believe that Must. Go. Gluten. Free. Cold. Turkey. is so ingrained that it doesn't allow for admitting mistakes and corrective action. That could actually lead to some dangerous diet regimes. In the Opiate Withdrawal link I posted above, the doctor who wrote the article concludes by saying: "The take-home appears simple: if these symptoms occur, do go more slowly on the Gluten-free Casein-free diet, respect the withdrawal process and support other nutritional and physiologic activities." I think the doctor's advice is sound. I have the symptoms of gluten withdrawal that he describes.
Interesting piece of advice! Sounds like a classic need for a "this wasn't done right, time for a do-over" to me. I'll take a look at mineral imbalances, and I've been eating gobs of beans on my nachos. When the GI doc did his latest set of blood work, he said I was slightly anemic. He didn't suggest I take an iron or B vitamin supplement beyond the B-12 I take already though, he felt I would get enough over time as I'm better able to absorb nutrients. I see him tomorrow, I'll bring it up again.
Never been a big milk drinker, and only did custard in the morning since it was an easy way to get some protein in from the eggs while I was looking for something else I could eat for breakfast. I have no investment in it otherwise.
No soy to cut back on, except perhaps a tablespoon of soy sauce in total per week maximum if that, so no action needed there. Last time I had tofu was when a few small cubes of it was in some miso soup a couple of years ago.
Agreed! Classic need for a "take a deep breath, then step back in order to see the forest for the trees".
Thanks for your input. I'm off to work now for the day. Have a good one.