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
You are absolutely right it will help someone else. There were many times I sat there in the dermatologists office crying and saying that my migraines were connected to the face sores...and my "fibromyalgia" is worse when the sores are there. And I would say "These sores are burning my brain." They would just shake their head and tell the PA who was standing there wanting to help, "She is a skin picker. We call it neurotic excoriation." Then he would turn to me and say, "You see how you are scarring your skin?" and walk out of the room. I was angry because I knew he was wrong but I couldn't explain it. None of it made sense until you look at what Celiac is and what it does. Then it all made sense. My sores didn't look like classical DH either. I'm so glad he brought a few PA's in to look at yours. You probably saved a lot of lives and spared a lot of people misery by letting them see the way your DH presents. Thank God that Dr. recognized your DH.
Enzymes, Probiotics, and Vitamins can all be found over the counter. No prescription needed. Make sure they are gluten free.
I stopped eating out or eating food prepared by others. It made a world of difference and I feel so much better. The Outback is the only restaurant I will go to and that is only on a birthday or special occasion.
It sounds like you should not eat at your in-laws. They probably use their pots and pans that have cooked gluten. Even if they make potatoes and strain in a colander that strained pasta you can get glutened. I realized it was critical to replace pots and pans and that it would be unreasonable to expect that others would have pots and pans that had not had gluten in them and therefore I could easily get sick. So basically if others cook gluten in their kitchen I will not eat there. That's pretty much everyone except a Celiac.
Take control of your diet and don't let others cook for you. They cannot be expected to see that you are not cross contaminated. There is way too much involved in cooking gluten free to expect irritated in-laws to be able to do it responsibly. Your body seems to be saying so too. Same thing with cooks in restaurants. Unless the restaurant is certified to be able to cook gluten-free. Some things you have to take into your own hands in order to heal. Cooking is one of them.
Probably CC from every surface. Benches, chairs, tables. And flour in the air too. I once had a meeting at Panera Bread. I arrived early to scope out the seats. All covered in crumbs and I wiped them with a napkin the best I could. I decided not to even drink anything during the meeting as I could see flour dust on every table. I never noticed this before I went gluten free. I can see how easy it would be to get glutened in a pizza place. Hope you feel better soon.
It took me a year and a half to heal my DH.
Any cross contamination would cause the lesions to weep and peel and sting again....for several weeks.
I recommend you do not use any products that are manufactured in a facility that processes wheat. Limiting iodine won't really help if you are getting contaminated from gluten. I think you are getting a lot CC from your description of things.
I had to get very strict. No eating out. Not only no gluten, but nothing processed in a shared facility or on shared lines. I had to limit iodine. My experience was much like Prickly's. I ate a lot of shrimp when I went gluten free. Thinking I would eat better food since I had to be gluten free. But I didn't get any better. I finally gave up iodine and eggs, dairy, asparagus, canned goods, anything with carageenan, iodized salt and sea salt. Then I started to get better. I had to limit iodine for many months. I tested it from time to time and the result wasn't good. I finally healed and after a few weeks after I was totally healed I was able to use small amounts of iodized salt.
Make sure you eliminate possible sources of gluten. If they aren't labeling accurately you may have to limit yourself to meat, vegetables and fruit. Even nuts are often packaged on shared lines with wheat. It's a nightmare trying to figure out all the ways you could be getting contaminated, but once you do figure it out, it is so much better.
Are you sure it's yeast infection spots that you have? Have you read about Celiac DH? Dermatitis Herpetiformis is the skin form of Celiac and it would be very sensitive to the cross contamination of gluten and it also can be sensitive to iodine. Would you mind describing your rash? Or spots? Do they itch? Burn? Sting? Are they worse at night? Do they weep or ooze? Has your Dr. said this is a yeast infection? Many people with DH do not know they have it. Often we are treated for fungus, yeast, impetigo, neurotic excoriation, anti-virals, antibiotics and all sorts of medications that will not work because the only thing that treats DH is gluten free and for some it is important to limit iodine to heal. Thyca.com is a low iodine diet if you find that your rash is sensitive to iodine.
Check out the DH forum. There is a photo bank for the various presentations of the rash.
I hope the Dapsone works for you. Are they going to do blood tests in 2 weeks? You should be monitored by blood tests to be sure you don't get anemic. I had great relief from Dapsone and then a terrible reaction so I couldn't take it anymore. Just be aware of what to watch for with side effects. Many become anemic. Some have no problem taking it. You will know very soon which one you are. So happy the Dr. recognized your DH!
Before I went gluten free, I was invited to dinner by regular eating folks. They served chicken breast, green beans, mashed potatoes and salad. There was no bread served. So it is perfectly appropriate to omit the bread from a meal. It didn't seem odd to me at all. I doubt anyone will say anything. I surely did not miss the bread when it was omitted from the meal. It didn't occur to me anything was missing because it was a full and delicious meal.
On the other side of things, I often have to cook for people as part of my job. I have learned to wear gloves and mask when baking gluten things, I never, ever, bake with flour. But I do make those pillsbury dough biscuits and crescent rolls for people I have to cook for. I serve them on little bread plates that are kept totally separate from the main meal dinner plates. I wash my hands frequently and change gloves frequently and always use gloves with the plates after the gluten eaters have eaten because they get it all over the place. So it can be done the way you had planned, it's just that you have to be very careful and not accidentally touch your face. The gloves help you remember not to do that. It's not that touching gluten will hurt you, but it's impossible to keep it from getting under your nails if you don't wear gloves. I also wash gluteny plates with paper towels and throw them away so I don't contaminate the common sponge. Just a few thoughts.
Yeah learning about cross-contamination is a hard lesson.
I tested french fries, then kissing a gluten eater, then products made on shared lines but with no gluten ingredients. Ugh to all of them. The reaction lasts weeks and it is hard to get out of bed and I can't wait to get back into it. I can't take all my vitamins either when healing. After a week or two I can.
I hope your reaction doesn't last long and you can stay gluten free.
Good for you mom! He needs you in his corner with all that is going against him physically. So glad you trusted your instincts and investigated until you found the source of gluten ingestion. It is so hard to know. You are a great example of Mother Knows Best!
I agree with telling your gastro that the ped won't test.
Then ask for a referral to a ped that will. Let your ped know that you will be going to another ped until you find one that will test your children since this is an inherited disease. You can tell him you are happy with his work except for this situation which is serious to you and your children.
Or see if your gastro will do it.
Or your GP.
Took me two years to find one that would agree to test my son. The excuse was that he didn't have classic symptoms and wasn't emaciated. Wrong.
He tested positive.
I had to go Paleo to get relief, so maybe the article is right and I was reacting to other foods, particularly the grains. I don't know. All I know is I feel better without any grain and kind of ok if I eat a little rice. It certainly is a battle trying to figure out what you can eat the first year. Is it cross contamination? Cross-reactive foods? Things eventually settled down, but I do know the first year was a roller coaster and the most important thing I learned was not to eat things made in a facility where wheat is also processed. I didn't think I'd be that sensitive but I was/am.
Can you post the articles? I'd be interested in them.
You are very astute.
I admire your observations of her reactions.
Are YOU getting tested?
Are you gluten free?
Sounds like you know how to fight for testing.
Either way the testing goes, you might want to both be gluten free.
Hey Dave! I hate avocado's too! But I make myself eat one every day because they are so darn good for you. the trick is to find exactly the ripeness you like them. I like mine just barely ripe...soft enough for the pit to pop out but not to the mush stage...yuck. And if there is any brown...I cut it off...it can't be good for you I figure...but I know others who eat it even if it is brown. Anyway, the firmly ripe not mush ripe is the way to go. I like slightly green banana's too and I never eat them ripe! We must have the same taste bud genes...