angieInCA

His skin isn't broken out, that I can tell. He says his arm hurts, but when I ask him to tell me how it feels, he says "it hurts like brown." So, I'm not really sure that I proved anything or not. The solution was 2%, but I thought it was worth a shot.

I've been thinking about his statement, I love how kids express themselves

Maybe he means it hurts like a bruise or tender to the touch, that is how mine felt before it scabed over.

He totally dismissed the iodine patch test.

Unbelievable! My Dr used the iodine patch test to raise a blister to do a biopsy and yours totally dismisses it! I wish these Doctors would get on the same page

Mine was done on my arm, outside above my elbow. BUT, I have had breakouts in tha area before. I tested my Daughter in the same area because she has had breakouts in that same area.

How old is your son? I would try to test in an area that is close to his normal pattern of breakout but won't be easily scratched by little hands. THe Dermatologist explaind to me that they think (but not sure) DH travels around the body much like Herpes or shingles along the central nervous system and erupts in areas that are weak. I have had DH patches for years in one area that now hasn't had a breakout for 3 ro 4 years but have breakouts in new areas. Hard to explain but I have had DH eruptions in every place imaginable but never all at once. For a while it concentrates on my legs then move up to my hips and buttocks and then to my back and scalp and then down my arms then back to my shins.....never a rhyme or reason but when I'm breaking out on my legs I don't have breakouts on my arms....it moves.

His skin isn't broken out, that I can tell. He says his arm hurts, but when I ask him to tell me how it feels, he says "it hurts like brown." So, I'm not really sure that I proved anything or not. The solution was 2%, but I thought it was worth a shot.

meant to comment on this........

Watch it for a few days. If the sopt is hurting it may still develope a blisters or it my be more like a chemical burn and scab over.

The biopsy is really painless. They just scrape a few skin cells of the skin surrounding a breakout not the blister itself.

For years I had Dr's aspirating the blisters and testing the fluid with nothing ever coming back conclusive. They just weren't testing the right way or for the right thing

When I was diagnosed with DH I did not have an active blister but I had an appointment with my Dermatologist so I went anyway. He did the Iodine patch test on me. He applied the iodine and a bandage and told me to come back in the morning. The patch itched and hurt all night long and wne I went in to the Dr. and removed the bandage I had a cluster of blisters, he biopsied and DH was confirmed.

Recently, I have been suspecting my Daughter (20) had DH so I did the patch test on her at home. To make her feel better my Husband and I did it with her. I have been gluten-free for almost a year at this point. My Husband had no response whatsoever, while the patch was on no itching or burning. My Daughter had one very large blister raise up and she complained of constant itching the whole time she had the bandage on. I (with confirmed DH being gluten-free) had a reaction of feeling like I was being burned with a cigerette the whole time the patch was on. When it was removed I had a large cluster of very tiny blisters that itched and burned. They scabbed over and it looked like I had a second degree burn, much like I had been burned by oven door or rack.

My Daughter has an appointment with our Dermatologist in a couple of weeks. She is really bummed at the thought of having DH but I'm happy she is finding out now instead of 47 years later like me.

I agree completely with the recommendations of B vitamins, magnesium, vitamin D3, etc. Vitamin B12 is involved in the production of serotonin and melatonin, as are numerous other nutrients. Taking these in supplement form has helped me immeasurably, and that includes neurological functioning. Magnesium is also known as the calming mineral. Look for the methylcobalamin form of B12, preferably in a sublingual lozenge/tablet. Make sure your B-complex has the co-enzyme forms, as this is needed for effective absorption.

In working with my endocrinologist I was put on all of these supplements as well. A few weeks later she added SAM-E which is a great mood leveler. I take a daily dose of 400 (mg?) which I get at CVS (their brand) and is Gluten free. I have noticed a hugh differance in my anxiety issues and can tell if I forget to take it.

https://www.celiac.com/catalog/product_info...products_id=477

This book is highly recommended.

I agree with this one. Not only did I find it helpful but it helped family members understand what was going on.

Yes, one can react to too much of anything. Especially if you have drastically increased your intake suddenly.

My Stepdaughter cannot tollerate to much rice of any kind. In small amounts or maybe a serving or two a week she is OK. She cannot tollerate Jasmine Rice or White Sticky Rice at all.

If she eats any of my home baked Gluten Free breads or cakes with rice flour it make her sick and causes discomfort.

My whole problem with the "alright to cheat every once in a great while" sceanario is, while we all have the best intentions to be good on our diet, if we give ourselves a pass 2 or 3 time a year, that 2 or 3 could easily and quickly turn into 4 or 5 or once a month or everyother week before one knows it.

For me, there is no other option than being strict about the diet. Lord knows I get accidentially glutened often enough, I don't need to do it on purpose.

Besides, the one thing I noticed is after a while the gluten cravings went away and even the smell of gluten isn't appitizing. By reintroducing it into my diet I would wake up the whole craving process again. It would be like breaking myself from a drug over and over and over.....what a nightmare

My Doctor actually said kind of the same thing. Said cheating every once in a while if I could tolerate it probably would hurt too much

I decided to take the advice of the good people here who have lived with this disease for years and stay far far away from the stuff. Besides, for me small accidental glutenings are just terrible to deal with for days....I can't imagine doing that to myself on purpose.

Have a nice big warm Chocolate Eclair for me with the real cream filling not the cheap icing stuff

For the Ladies Only! Has anyone had any bleeding? I have back pain something fierce along with bleeding.

Help please!

Please see your OBGYN. Remember that celiac disease affects all your organs. Your uterus is an organ. The summer before I was diagnosed I had a hysterectomy at the age of 47 due to sever pain and bleeding. Post biopsy reveled I had Adenomyosis which my Dr. now says was might have been directly related to having unchecked celiac disease. Adenomyosis is usually not diagnosed until after biopsy because they have to view several cross-sectons of tissue.

I'm not saying this is what you might have but that you have to be aware your organs can be affected and you still need to have proper medical care for those organs and not be careless in thinking all symptoms will go away by going Gluten Free. In my situation the damage was done and the uterus had to go. The advanced Adenomyosis could not have been reversed.

Before my diagnoses I had terrible lower back pain and left hip pain that would shoot down my thigh and would inhibit my ability to walk. I had a several tests that included 2 MRIs. The Doctors were at a loss and told me that I must have sinovial cysts that would eventually put me in a wheel chair. They said there was a surgery for it to relieve the pain but they wouldn't do it till I couldn't walk anymore becasue the surgery was very invasive and would render me unable to walk. No pain killers touched the pain.

I went Gluten Free last Oct (almost 1 year ) Within 2 weeks the pain had subsided considerably. After 6 weeks my back and hip were pain free and I was able to walk freely. Also, the athritis in my hands had virtually disappeared.

Now, if I get glutened, I feel the pain within 24 hours and it takes 4 to 5 days for it to go away.

I had sever lower back and right hip pain to the piont it was causing problems walking. Nothing I took touched the pain. After 3 MRI sand countless tests which showed dark or grey spots, the only thing the Doctors could come up with was that I had Synovial cysts in my lower spine and hip joint which were inoperable and would eventually lead to me being wheelchair bound. This went on for 4 years with the pain getting increasingly worse. Then I went Gluten Free. Within 6 weeks I was pain free and all the Doctors can do is scratch their heads. Even with accidental glutenings this pain has not reappeard, Thankfully!

I take lunch to work with me everyday. I either take leftovers from dinner the night before or I make veggie-coldcut wraps that I dip in salad dressing. I will slice fresh veggies in long thin slices (carrots, zuchinni, green onions, cucumber, basically what ever I have on hand and floats my boat that morning) lay them on a slice of gluten-free ham or turkey or roast beef and roll them up into finger food. I then lay them in a container or baggie and take a container of homemade salad dressing for dipping. Easy finger food. I also will take a sliced apple with a small container for peantbutter for dipping. I place all of these in an insulated bag with some blue ice in the bottom to keep them cool. I alway balance protien and carbs to help stave off hunger.

I also never ever go anywhere with out a baggie of raw almonds. Since I suffer from Hypogloxemia as well I have to maintain constant blood sugar levels and almonds are high in protien and slow to digest so in emergency hunger situations they are my life line.

fatigue and brain fog are biggies for me as well, along with deep muscle pain, shooting pain in arms and tingling and itching (DH). Starts within an hour and can last 3 or 4 days for me.

I start feeling tingling and itching within hours of ingesting gluten. THe blisters and rash show up 24 to 48 hours later.

I agree with jststric, Honesty is the best policy. Explain you new found dietary needs and tell them not to worry about creating a special environment just for you but to please not to be offended if you turn down any food offered. Pack some safe food to take with you or visit a store when you get there.

If they are great cooks they might surprise you and be very interested and will certainly be able to help you navigate through the selections they have prepared. Who knows you might teach them a thing or two. I have found thet when you involve people in helping to root out gluten in products they become quite intrigued by how much is used without our knowledge.

I have found that I have to take control of my diet. I don't hide it and I don't apologize for it. It is what it is. To be honest I have found that I have become a more assertive person since finding out I have Celiac and DH and the people around me respect me for it. Family member who used to push me a little now take everything I say at face value and don't push me to eat something I shouldn't.

That is exactly what I was wondering. I know it is ""stickier" than regular white rice flour but I was wondering if anyone had used it in a small protion to help with the crumbly effect that we see in many cookie, cake and bread products.

Thanks nasalady....that looks like the proportions I was thinking about.

Trying a new recipe for pineapple upsidedown cake. I'll let you know how it works out.

Can sweet rice flour be used in place of white rice flour in recipes? Not talking about gravies but for cakes and cookies and such.

I always have almonds in my purse.

I forgot to add CHIPOTLE Mexican Grill to the fast food list.

EVERYTHING on their menu is gluten-free except the flour tortillias

I hope you have a wonderful trip!

I am 60 miles North of LA so I really can't be of much help as far as actual address locations but most of these are chains you can look up locations before you go.

Fast Food

Baja Fresh = fresh baja mexican food. no actual gluten-free menu but there are many options and you can order with out flour tortillias, like a bare burrito.

In-N-Out Burger = Order Protien burger (wrapped in lettuce), special sauce and everything on the burger is gluten-free. When a protien burger is ordered they are cooked on the same grill but prepared on a separate line to avoid cross contact, french fries are gluten free too.

El Polo Loco = Flame Broiled Chicken , no brine in the chicken and the seasonings are gluten-free. I get the grilled chicken plate. Two pieces of chicken and choice of two sides. I usually get double veggies but the beans and rice are supposed to be gluten-free. You can get a salad but ask for no tortillia strips. I don't eat the chips here because there is no dedicated fryer but they do serve soft gluten-free corn tortillias and all the sauces are gluten-free.

of coures there is Wendy's

As for Full Service chains with gluten-free menus, there several all over the place.

Outback

P.F. Changs

Chili's

Claim Jumpers

Also google "Gluten free resturants in L.A." and you will get several hits.

I'll ask around of people who knows that area better and find out if there are any "local" spots you should check out.

I have what I think may be DH however it is mainly on the right side of my body (right pinky finger, elbow, knee and buttox.. and I do have a small patch on my left elbow).

From what I've read DH is usually symmetrical but can it be a symmetrical?

The key word here is USUALLY. This does not mean always. Yes, DH can and is many times asymetrical. And there have been times that I have had just one blister.

For Taco meat you can use ground Cumin (actually what gives chili powder it's flavor, chili's git it it's kick), salt and pepper. After browning the ground beef, drain fat and seasoning and add some water and simmer uncovered for about 5 min. The amount of seasoning and water will depend on the amount of beef. I use about 1/2 cup of water to a pound.

I don't have a nightshade problem and I do eat tomatoes but I'm not a real big fan of them. I don't have a recipe for red spagetti sauce. I do pesto most times.

As for Pizza, I will use Pesto or I make taco pizza where I use refried beans and taco meat for the base

Yes, that could possibly be DH. THe DH rash I get on my shins looks like that. The DH Rash I get on my arms and scalp look different. And the DH rash I get on my hands looks different still, so I get at least 3 different looking rashes that have all been diagnosed as DH. The one thing they have in common is that they all itch and burn like crazy and they all have clear fluid blisters ranging to extremely small to very large. I have some blisters that have been pin-points and I have had some the have measured 2 inches across. My rashes usually show up within 24 hours of gluten exposure and last for several days. If you really need to know get it to a Dermatologist and have a test done.