angieInCA

Congrats! I can relate to your elation on realizing what has really been going on all these years and can now take control and regain your heath. Life is Good!

Thank you for posting this. I agree it is very informative and through in it's content. I am printing it off and sharing with family members who still don't get what celiac disease is.

Angela

My family purchased an extra grill rack from home depot for me and just sit it on top of their grill. I've also seen foil type grill racks ( a little thicker) for covering those nasty ones you see in parks.

Wow Great Idea and such a simple solution, Thank you, I'm stopping by Home Depot today.

I eat out quite a bit (at least once during the weekend and a couple of lunches during the week with business associates for meetings) I actually do pretty well eating out even at smaller privately owned resturants without an actual gluten-free menu. I always smile nicely to the waiter or waitress and tell them that I'm going to be a bit difficult. I ask if they know what Gluten is (if not I give them a bit of a run down) and then proceed to give them my order with my specific instructions. So far I have never been glutened in this situation and the server is usually extremely careful and helpful (if they are not sure about something they ask the manager or cook). WHere I have been glutened or had server mistakes is at the larger resturants with gluten-free menus.

I am always cautious and I never get angry. I'm a true believer in killing them with kindness and humor. The only place I actually got upset was at Claim Jumpers where when my Gluten Free Menu steak was delivered to my table with a big fat fried onion ring sitting on top and I asked to speak to the Manager and he said "here let me take that off of there for you" and started to just remove the onion ring. Both my husband and I went into a tirade about how wrong that was and how ill informed and trained he and his staff were. We have never been back.

My best experience has been at Outback. Our local one has a manager who has Celiac Disease. SHe came by our table one night when we were there after the hostess told her we had asked for a gluten-free menu. SHe wanted to assure me that the staff is very informed and make every effort to be careful of any cross contact.

We also have a local Italian resturant that my business associates just love. I eat there at least twice a month. When I first found out I had celiac disease I visited with the manager and discussed what was safe and what was not. Now when I know we are eating there I call ahead and order a special eggplant chicken lasagna they make just for me (chicken breat, eggplant, sauce, a little hard cheese baked). Alot of my associates are so intrigued they want to try it. THe manager has told me last week he is thinking about puting it on the regular menu as a healthy choice

I think part of my success is that I am a pretty experiencded cook and know where alot of hidden gluten might be so I ask a ton of questions when I'm not sure about something. Also I have gotten over being embarassed about it. I realized they get a ton of requests from people on special diets and I'm really not all that special. I just handle it matter of fact and make no apologizes about my needs. I'm always firm in my requests but polite at the same time.

Great Post! You made my day. OMG OMG OMG We've all been there

It is very possible that you are still getting traces of gluten in your diet. You have to read all the lables. Caffine will not cause DH outbreaks. But be aware that it can take months for your outbreaks to get completely under control. Just 2 weeks into the diet you still have antibodies deposited under the skin and they will continue to erupt (though it will deminish) untill they are depleated.

Be aware that it can take months for DH to totally die down. You should see improvement anywhere from 2 to 6 weeks with a continuous gradual tappering off of constant flair-ups. Any time you accidently ingest gluten you may have flair-ups within hours to 6 weeks later. I have never taken meds for DH as I didn't want to contend with possible side effects. Now, when I get accidently glutened I will start itching all over within 24 hours and then I may have a few small breakouts but nothing like I used to get.

I use ground flax seed in all baked goods. I just add a tablespoon or two depending on what I am making, pizza crust, pancakes, biscuits, cakes, bread, etc.....

I also add it to my homemade salad dressings or sprinkle it on salads, I put it in potato salad and cole slaw. You could even add itt o scrambled eggs. I find it has no taste when add to recipes.

Sounds like a blood sugar crash to me also. Which can happen in times of extreme anxiety also.

Don't you just hate when you do that to yourself? I always say If I wanted to feel bad I would have done it on something I really like Yes, my deep muscle and joint pain comes back when I get glutened and stays around four to five days.

I had severe rashs when I was a kid that ran up and down my arms and down the back of my legs. I don't remember what was done about them but I do know I was never diagnosed with DH till I was 48. All my life I would get rashes or itchy bumps and I saw countless Dr.s and Dermatologists and none of them ever tested me for DH. I was given pleanty of creams and sent on my way to try them out. Of course the rash would clear up some and then I would break out again and be given yet another cream to try. It wasn't until I asked to be tested for DH that I was finally tested and diagnosed.

At first I was hesitant to participate in this board because techincally, I don't have celiac. Neg blood and biopsy. It surprises me that so many people aren't "Gold standard" diagnosed, but we all fit in here. It doesn't matter what you call it. I am glad I spend more time here figuring that out. I wish the doctors felt the same way.

Funny, I felt the same way at first but soon realized that researching on this board convinced me I was right and my Dr.s were wrong. I can't begin to thank all the people on here that helped me in the beginning.

Finally found them at Albertson's in Camarillo. $4.69 each. Haven't tried them yet as I am still grain free.

Doesn't the diagnosis of DH mean you do have celiac disease?

I by no means claim to be an expert on DH but I think the jury is out on this as much as they are on how "rare" Celiac Disease is. I should have stated may or may not have celiac disease of the gut. DH is considered celiac disease of the skin and not all people who have DH have gluten-sensitive enteropathy.

If you go to the AOCD site Open Original Shared Link

it will tell you what I stated and that is what my Dr. told me.

IF you go to Celiac Spru Association Open Original Shared Link

they will tell you it is a complication associated with Celiac Disease.

But does it really matter, you still need to live Gluten Free.

You can go to a dermatologist that is familiar with DH and DH testing (not all are) for a skin biopsy. THey test the skin surounding the blister area not the blister itself. If you have DH you are Gluten Sensitive or Intollerent or Allergic and you may or may not have Celiac Disease.

As with Celiac Disease they only way to really treat DH is to live a Gluten free lifestyle. There are some drugs but to me they are not worth the risk.

It sounds like DH to me. I have had blisters everywhere. Watery blisters that have come up in clusters or singlely. THey are very deep, very itchy, and sore to the touch. I have had them on my face, neck, scalp, ears, torso, arms, shins, lips, toes. fingers and vaginally. I've had them on the palms of my hands and the soles of my feet. Fortunately not all at once but anywhere they appear they are miserable. Since going gluten free I seldom have breakouts except for when I have an accidental glutening. Now they are pretty much confined to my forearms or hairline of my scalp.

I guess you could say I self-diagnosed about 4 years ago but listened to Doctors who laughed and said it was not possible and couldn't get the tests I asked for. I listened to those I thought all wise and continued on my merry way of eating Gluten and trying to find out what the heck was wrong with me for the next 3 years. Finally, after not being able to get off the bathroom floor for 7 days, my GP stated "Maybe you do have a problem with Gluten." I found a new GI Dr. and while I did not have enough anit-bodies for a positive test (I had been eating very gluten light) he felt due to my extreme positive response to the Gluten Free diet I had a 99% chance of having Celiac Disease. A month later I tested positive for DH which confirmed it for me but I have never had the endoscopy and biopsy done.

Debilitating Fatigue took control of my life for years before my diagnosis. It also took several months before I even started to feel close to normal. About 3 months ago I started getting bi-weekly B-12 injections which has helped tremendously. I also take 1mg of folicate acid daily and a daily dose of SAM-E.

Also, remember that he is dealing with a life changing diagnosis and he may go through a period of depression which can cause you to shut down and want to sleep. I know I went through a period of mourning which is very normal.

This is worth repeating.

Why don't you do an experiment and be very careful about all sorts of contamination for two weeks, and see if you start to feel better. I just had a conversation with a friend of mine about this, who is also gluten intolerant/possibly celiac. She would eat bread occasionally. I told her the same thing and this is the second week of her being truly gluten-free... she told me today that she had no idea how bad she felt until she felt better.

This diet is all or nothing.

Amen! And it all depends on how bad you are willing to feel on any given day.

Anybody find the mixes in California????

I have not found them yet in West Ventura County.

I was tested for enough stuff that my diagnosis was hypochondriac. They actually had that written in my file.

I told my new doctor that I use to be a hypochondriac but now was a celiac. She laughed, apologized and said I was right.

OMG.....You Are ME!!!!!!!

I know my Dr. was getting so tired of me coming in and saying something just isn't right can we test for______(fill in the blank)__________.

I had tests for everything I could think of and some that the Dr. thought of. I know they tested me for cancer 3 times. Scans galore, 3 MRI's in 4 months, 2 colonoscopies in 6 months.

My Step-Daughter ws diagnosed with Crohn's 2 years ago and that was the first time I had heard of celiac disease. I asked my GI to test me and he brushed me off saying I couldn't had celiac disease because I wasn't skinny.

I had to find a Dr that would take me seriously.

I've suffered from migraines my entire life (first one at age 10). I would get them in clusters 2 to 3 times a month. After going Gluten free my migraines disappeared. If I get glutened one of my first signs is a headache.

NO! NO! NO! At least for me anyway

The longer I am on a gluten-free diet the worse I feel after an accidental glutening no matter how small. My last accident was a couple of bread crumbs in my peanut butter (CC'd by a family member). I was very sick for four days and the symptoms seemed worse than ever before.

To help me stay on course I imagine that each and every time I get glutened, while I may not feel the effects, my intestines are getting attacted and have to start all over at ground Zero to start healing again.

Body type/blood type is useless BS.

richard

I agree.

I was always very "healthy" looking even as a child. Meaning I always had about 5 lbs extra weight. I could eat anything I wanted and never gained past my "normal" weight. The only "Celiac Look" I had was a pouchy tummy. No mater what I did it never went away. But I had all the curves to hide it, big breasts, rounded hips and butt and great leg and arm definition. It wasn't until my 40 that I started to gain unhealthy weight. IT crept up slowly and then stayed put. 50 lbs later I was not a poster child for celiac disease so it really made it harder for me to get a DR. to take me seriously. I had 2 GI's take one look at me and say "You can't have celiac disease, you aren't skinny"

BTW, I was one of those people that didn't know that constant "D" wasn't normal for most people.

I vote we start a new thread.