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
Sorry you have joined the world of Celiac. Not a fun club. But a glute-free diet is going to make you feel new again. Some of us are more sensitive to gluten than others. Some of us cannot lick an envelope. Some of us can. It will take some time for you to sort out what you can and cannot do/eat/use/take.
I assume that since you are newly diagnosed, you have had some serious symptoms. Usually digestion. Rapid transit. And pain. And malabsorption. If you are lucky, you have caught it early enough that there may not be permanent damage. I was diagnosed at age 40. The secondary problems are many. But more about me later!
Tell me (us) about you. How old are you? (approximate is fine!) How long have you been exhibiting symptoms? Absolutely miserable or: kind of yucky or: this and that weird symptom or: almost incapacitated for years. This evil disease can take many forms. The exciting and great news is that you can recover. In many cases 100%!
Do not for a moment think that the symptoms (evil demons ) will go away after a few days or even weeks or months. It will take some time. It has been wreaking havoc on you and your body for a long time. Be patient. Do not for moment think either that you can change your diet a little. Or just modify. Or just reduce. Or eat something on a special occasion. Or just on the weekend. This is serious business and if you want this rash and any other symptom to go away you have to get every speck of gluten out of your house! Stay away from restaurants for a while if you can. Things are much easier these days and restaurants are certainly more aware but the more thoroughly you can eliminate any possible trace of this stuff the faster and easier will be your recovery.
Again, there are many silver linings. There are intestinal diseases that cannot be controlled with diet. This can be.
The rash sucks. Period. It is insidious, crafty, mean and determined. Many of us have been playing around with it for years. Some things work for one, not for another. It will be a guessing game for you for a while. It could leave you in two weeks or hang around for two years. There are many wonderful suggestions on this Board for itch relief and pain control. Again, what works for me may not for you. We are all unique.
As for medications. Most can be researched on-line. Trazadone is used for sleep issues and depression. There are alternatives for both if you are not happy with it. But I can definitely tell you that there is no way that two days of a gluten-free diet will tell you anything yet. Don't get discouraged. Be diligent. I would love to hear your progress. Even day by day. Keep in mind that you will not just regulate your diet. You will completely change it. (you will love the results)!
YOU ARE NOT ALONE!! There are so many here that will hold your hand (itchy as it is!) and walk you through each of your fears, experiences, questions, discouragements and victories!
Stress!?? What stress?? Let's see, my mother died last November after I had to basically kidnap her to bring her across the country to place her in assisted living. Why kidnap? Chartered jet and all? Because my nephew had been financially exploiting her for about ten years. About 1/2 million gone. Let's see, stress? then my husband and I separated after 20 years because he doesn't get the concept of no dating after marriage! But hey! I'm good! I am trying to sell some property in NYC (I'm in the midwest) and I have had 2 deals fall apart. My daughter is getting married in February. I have been coping with post-menopausal bleeding and have to have a biopsy soon. Ultra-sound ruled out ovarian cancer. I am perfectly fine! No stress. That's just silly
And then there is the the "don't think about it". When it's calming downing I worry that it will come back. When it's flaring I worry that it will never go away. But what, me worry??
You know, maybe if we all try to embrace this rash. You know, love it. Try to pretend that we love the itch and welcome it when it flares. Oh, there you are, you sweet rash!! I've been missing you! Reverse psychology. Same concept with weeds. They are only weeds because we don't want them. I know in my heart that if I loved dandy lions and TRIED to grow them, they would disappear. We've all tried everything else!
So for today, hello!! darling little rash!
I have an appointment with a naturopath but he can't see me until January. I am calling an allergist/immunologist today.
So once again, thank you all for listening and caring. Honestly, I am too embarrassed to talk to anyone else. I feel all whiney and "poor me" You know, you get together with your friends and they say, "how are you?" you respond, "I'm great, thanks!" So thanks for letting me say "the ****ing rash is back and I'm obsessed with food and feeling so blue!!" (a little blues guitar riff now!)
Anyway, thank you again. I have fallen in love with all of you.
Well, you ARE thinking! I take my "dog" to a groomer. NO perfume. She doesn't use it at all on anyone. I'll ask about shampoo and other products but it just seems far-fetched. Also, my groomer is very into organic and pure. Ten years with her. Also, she doesn't play with with dogs at all! Really, she's just too little. 6 pounds. Too dangerous even in play. She had a few incidents and so we don't even bother.
I wash all vegetables with soap. I wasn't thinking about gluteney fingers.... I was thinking about where the fingers and hands had been that touched it before it landed in the grocers.!! (Yuck) I even use a tablespoon of bleach in lettuce to kill everything bad and then rinse 3-4 times.
I did get the name of an allergist/immunologist here. I will call tomorrow.
You described the rash exactly. Itching fades as scab appears. Blanching when pressed. Oh dear Lord, I am so tired of it.
I know Celiac is truly evil and will affect every part of your life for forever. I was told to get a wheel-chair in 1978. Misdiagnosed. Of course! I know that the leaky-gut syndrome has ruined my auto-immune system so this could be some weirdness from that. I am a bit of a control freak so of course, I want answers!
BTW...no wheel-chair. Honestly, other than occasional joint and soft tissue flare-ups (minor) I am in great shape. Pilates, Physical therapy with work-outs, no sugar, clean diet....I am at a loss. And crying often.
I'm not concerned about insurance. I'm blessed there. That's why God made credit cards!! I would LOVE IT if we could nail this! I've even considered the fact that I feed the birds. Reaction? Allergy? Who the bleep knows.....? But I am truly loving this site.
I actually found it when it began. Scott Adams. Back in the early 90's. Before it was this huge. I always got e-mails. Bought from the gluten-free mall when it first started. But being able to talk to someone (anyone) who doesn't eye-roll is more than great. Thanks so much. Keep the ideas coming. I love it!
With the first go-round of this he (derm #1) misdiagnosed me with folliculitis. Prescribed Septra and then Prednisone. That was in early May this year. I had been able to take Septra before. No problem. Big problem this time. My immune system is having a HUGE party!!! I'm going to try to find a good allergist/immunologist. Meanwhile, I am trying not to rip my left breast apart.
What dog? She's NOT A DOG!! And yes, she is also gluten-free. Believe it or not, she has Inflammatory Bowel Disease. I thought I was going to lose her a few years ago. Lots of tests and $ later (worth every penny) she was diagnosed. But there is no gluten in this house for anyone ever!
Beginning uti. Drinking cranberry tea, TONS of water, cranberry pills. Hopefully, I caught it. Don't want another round of antibiotics. Can't do tetracycline either. I am a delicate flower, after all. We are ALL delicate flowers! I'm supposed to see the derm Monday. I don't know. Why should I bother? Really, really, frustrating. I need Dr. House! I am considering a Naturopath. Am also considering drinking heavily
Thanks for the hugs. I need them. Honestly, I have changed my laundry detergent, my hair and body products, I have sent all of my pillows to the dry cleaner, I have changed my diet. I check labels obsessively. I don't eat any pre-packaged anything. I even gave up bacon for goodness sake.
Is there such a thing as a good derm?? My PCP said all they do when they don't know what it is is prescribe antibiotics and steroids. I have seen two derms since this began last May. This last one initially gave me a shot and when that did nothing he said that given my history of celiac it must be that and he prescribed Dapsone. Biopsy neg for DH but I had been on steroids. Both with an injection and oral prednison. The pharmacy and 3 other doctors told me NOT to take the Dapsone as I had an anaphylactic reaction to Septra. Sulfa-based. Swollen tongue, angio-edema, hives the size of dinner plates.....a nightmare.
I'm not certain it's DH at all. It just doesn't make any sense. But then what the *bleep* is it??? Itches to the bone. Bordering pain.
I always know when I am going to have an outbreak because there is a pricking sensation. As if a tiny needle poked me. The area surrounding that subsequently reddens. Within 24 hours there will be a cluster of little bumps. Maybe eight or ten. They develop a tiny blister in the center and then they scab and simply dry up. Until the next cycle. I have some pictures on my phone from the beginning. I just don't know how to load it to this forum.
Itches like a mother. They seem to return to the same areas. Right now it's my left shoulder and right breast. I will also sometimes have a random one itchy. From beginning to end of the cycle is about 5-7 days. When it's peaking, it is almost unbearable. I will say, that the outbreaks don't seem to be as intense as in the first month or two. My back was covered at first. My friends said it looked like chicken pox. I really thought I was over the hump until yesterday. Honestly, no one has a cleaner diet than me. I buy organic meats and vegetables. I cook myself. Over the last 3 weeks I have been also on a LI diet. I really thought I was done. I am wracking my brain to figure out what I did differently the last day or two. Nothing.
My PCP doc said she thought it could be a perfect storm of virus and auto-immune reaction. It was practically completely gone when I saw her last week. My immune system is definitely compromised. (thank you Celiac) But this is new.
I am probably rambling. Honestly, maybe an exorcism is in order! I had a dream that teeny, tiny bat-like creatures were flying out of skin.
Thanks for your time. You truly are great.
P.S. Started on my scalp and nape of my neck. It's a mystery......
I'm about ready to throw in the towel. I am so frustrated. Just when I think it's leaving and I have a day or two of serious relief a new crop appears. And now I have the beginning of a bladder infection. But Septra is out. ****
I have been sticking to the low iodine diet faithfully. And of course gluten-free. I don't eat out. I am starting to think that this isn't DH. Perhaps tiny aliens trying to colonize in my body.
Sorry....I'm feeling down today. There's not even an emoticon for what I am feeling.
Toast...Squirmingitch recommended Glutino Genius. Just egg whites and non-idodized salt. I don't think it's as good as Udi's but toasted well it's pretty good.
My rash seems to be really settling down. I have the spot here and there. I have been LI for about 2 weeks. I will wait another week before I try anything. I am off to my PCP in about 10 minutes. This is the first she has heard of this with me. And of course, I'd say I'm 90% better. I still don't understand if this is DH what triggered it? Too much iodine?? I'd never heard of such a thing before this. Still, if it was a CC would I be so bad for so long after being totally gluten-free? I may never know. But I am not willing to add anything like dairy back in yet. Oh, for some parmesan !!
BTW the apple cider vinegar directly on rash applied with a cotton ball is the best I have found!
I have the same job!! I also make my own ketchup. Oh, homemade pickles are the best. I hadn't thought about that. I was thinking that it was the pickle itself that was iodized. But I guess you're right. It would be the salt. Shoot! Why didn't I think of that. There is another website out there I like to use. I can't remember the name right now, but I'll get back to you. I think it's something like Sugarfreegirl. She has a sugar-free, soy-free, gltuen-free, vegan, corn-free, ketchup recipe that I LOVE! I just can't think of the name. (I think I am going to start blaming my memory on gluten too!) And horseradish. Mmmmmm. I also found a site for gluten-free make-up. Oh jeesh I am getting obsessive. Speaking of that, there is another company that makes soaps. body products and cleaning products that are all good for us. And the scent is unbelievably phenomenal. I think I mentioned it somewhere already but it's worth repeating; the company is Indigo Wild and the products are called ZUM. The scent I am obsessed with is Frankincense and Myrrh. The laundry smells heavenly not to mention my own self. I will get back to you about the name of that site as well.
Well, I'm off to drink my black coffee, dried toast with apricot pure fruit spread.
ItchyAbby: can you post the pickle recipe?
Okay, I found the sites: www.spoonfulofsugarfree.com and www.indigowild.com.
Lord have mercy! Do NOT tell ANYONE I moved from Hellman's to anything with the word "vegan" in it!! But I have not done anything with soy in it for years. Soy affects me as well. Like you said, "if it's not this it's that..."
What I would do for a big ole' BLT! I can handle Udi's or Rudi's or Schar's or Glutino bread!! That's fine. But now no Hellman's!!! Shoot!!
I swear....if they told me the world was ending tomorrow....the things I would eat would make you blush!!
Everyone in the Universe knows I have Celiac! I think they are all sick of it! Yes, my PCP knows. Does she get it???Doubtful....
If they tell me I can't have my red wine, I'm shooting myself and anyone in my way
Honestly, I am boring my own self with this.
Mottled skin. Kind of purplish, pink. All over. But I swear I have been gluten-free for years. Even if I accidentally ingested anything........it's been since May. This makes no sense. AAAGHHHHHH
I'm with you at the Pity Party. WooHoo!!! Fun!!!
I'll let you know what doc says.
Off to bed.
BTW...did I tell you how my acupuncturist gave me a concoction of herbs for my rash and how I woke up at 11:20 p.m. with my heart banging and my head throbbing???? Give me one of your balloons at our party