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
I have spent the ladt few days trying to figure out where I got the GLUTEN.
Now that I remembered IODINE...no wonder. And of all places to break out...i will give you a hint...I thought the breakout was from the new toilet paper I bought despite the fact that I was told it was gluten-free. And I couldn't have eaten 6 or 8...had to eat the entire bag at one sitting.
But, I began ITCHING "down there"...and just happened to take a look. Omg. The BLISTERS. Just makes you want to ITCH your skin off.
After being gluten-free for 1yr & 3 mo, I have narrowed down my exposures to this...if I have eaten gluten, I get the rash on my lower back. If I am somewhere where bread or such is being baked and I inhale it, I start itching anywhere on my skin, wrists and such. Or if I use a gluten-containing product on my skin, I itch at that place.
But my iodine consumption is very low. I never eat shellfish (except for the bag I found in the freezer the other night), I use Himalayan pink salt, and am dairy free. I even declined a medical test where I was asked to drink a giant glass of contrast solution (iodine!). I used to sprinkle kelp on my food but tried that after 3 months on my gluten-free diet and threw up.
Btw, my inflammation levels are off the charts too now, since I have inflammatory arthritis...joints swollen, glands in neck swollen, fatigued, etc.
I can't believe I did this and didn't make the iodine connection for days.
I went on a self-imposed elimination diet last October, and did GREAT within a few days. Within a few weeks, I was dancing around after being practically bedridden.
A few months after that, I began adding a lot of my old foods back into my diet, with the strict exceptions of gluten, soy and dairy and have been doing fairly well, but not nearly as well as I did in rhe beginning. So now I am going to go back on my original elimination diet (as soon as my current supply of groceries runs out
What I did was net research on my symptoms and eminination diet and such, i.e., rheumatoid arthritis diet, inflammation diet, etc.
I found sites like these helpful:
This one on the elimination diet:
This one on symptoms:
The only thing I didn't do well was systematically add foods back into my diet. I knew I reacted to dairy and soy...and of course GLUTEN.
I kept cheating on the dairy, because I had such a LOVE for all things dairy and unlike the gluten, I had such a hard time finding suitable replacements (there are a few, but I believe it is the dairy protein I react to, not the lactose and that makes it even tougher, since many of the fake dairy products contain casein.
Another thing, is the folks here update their profile with their various food intolerances/diagnoses/info on their signatures (I haven't gotten around to mine yet) so you can read after someone posts what foods they react to, and hence you can see that many others here have problems with things like dairy and soy.
I know too, that there is a detox period for us, after years of eating what our bodies consider to be poisons. Who knows how long that detox period lasts for each individual?
But I think you are on the right track with the elimination diet...it helped me anyway.
Also, about 4-5 mo. into my gluten-free diet, I began breaking out in rashes...and what I now believe to be DH reactions from gluten containing body and hair products, pet food, etc. I have a pending appt coming up in August with a dermatologist.
It's a tough row to hoe, but with our friends here (and some good prayers) we will make it.
Thank you guys for the tips. I am trying to limit my iodine intake too.
I have used sea salt in place of iodized salt for many years now. Only now I am trying to limit my use of the sea salt, since it too contains iodine from what I have read.
I love salt, seafood, spinach and iodine-rich foods so this is a struggle. I have inflammatory arthritis and several other health problems (from undiagnosed celiac) and it seems the gluten-free vegan diet works best for me. It's just that the vegan part of that diet is really hard for me and I have not been strictly adhering to it.
I just had a depo-medrol shot on Wed.,which I have read can help with DH. It helps my RA a lot, and that was why I take those 2-4 x a year.
I noticed today that the tiny blisters around my ankles look diminished so maybe the shot is helping my rash after all
I still ache all over, which is a sign that I need to get back to the vegan diet.
When I can afford it, I will go to a nutritionist. Maybe the new dermatologist can recommend one for me.
Thanks again everone for all your support. I seriously don't know what I would do without all of you
My primary care doc and my physical therapy doc would not give me the dapsone.
Looks like I will have to wait until I see the dermatologist in mid-August
Perhaps since I am self-diagnosed at this juncture, the dr.'s are too scared to prescribe the dapsone given the bad side-efx of the drug.
At any rate, I am taking tepid clay-baths daily and that is helping a lot, plus getting all gluten containing topical products out of the house.
I still have yet to spring-clean-vacuum and mop since changing my birds over to Gluten-free diet, and I think that will make the difference in the last of the rash clearing.
Whew, what a nightmare, but the rash is better so that's good.
Thank you for the link and info on the biopsy, Westy, but...OUCH!!!
It sure doesn't look like fun, that's for sure.
Also, a few more questions for those experienced with the biopsy. I have been gluten free (including now all topical sources of gluten, like lotions, hair products, etc). Will that potentially affect my biopsy/diagnosis? Is it like the intestinal biopsy, where one must be EATING gluten for a positive result? My rash is getting much better now, and by the time my Dr. appt. rolls around, it may be nothing more than scars. Now, I will say this, it is fairly easy to get the rash active, with any gluten-containing lotion and the like.
I would hate to be turned away, and made to come back after either eating glutenband or putting it on my body to activate the rash.
Has anyone been diagnosed from scarring after the active rash has dissipated? My scarring is very...distinctive.
I am going to print & take to my derm dr. Appt. In August.
I thought it was interesting that they tested samples of DH, for one thing. I mean, of all the potential disease diagnoses out there, potentially verified by this type of testing.
Secondly, it seemed to me they were saying, for DH anyway, that a period of longer than 10 minutes in the "formulin" might possibly alter the specimen and resulting diagnosis.
I am not sure of all the possible implications for us regarding our testing and disease diagnosis confirmation with regard to this study,( I should know more after my appt.) but I had to wonder given the fact that DH samples were chosen for the study.
As I said, my DH has not been confirmed, but I will make sure to tell the doc in August not to leave my biopsy specimen in that solution for longer than 10 minutes
AAATRGGGHHHHGGGHGHH...THE RASH IS STILL ALL OVER, now on my upper back of legs
Okay, do you guys think my CIGARETTES are making my rash worse? I did do some cleaning in the bird room a couple of days ago...that is really when I noticed this new crop of rash. It is summer, and I go barefoot around the house or in flipflops but maybe I should see if NASA has some old spacesuits they can let me have.
I have a bunch of nicotine gum. Does anyone know if its gluten-free? The longer I have been gluten-free the more sensitive I become it seems.
I started using HEMPZ shampoo, etc...they say Glutem Free on the bottles?
Maybe I better contact them.
Omg this is unreal. If I go to the pool, will that help me?
I have to watch out for any G containg (paper) products, even one placed "down there"!
One might think a paper product would be safe but apparantly not, as I broke out all over from changing dryer sheets recently...made by the following co...
Here is a quote from their manufacturers site:
Our(maxi) pads are made of a combination of absorbent materials, polyolefins, adhesives, and a silicone-coated paper. The top layer is a non-woven polyolefin cover sheet. The absorbent materials consist of chlorine free wood pulp, and Lysorb, an absorbent gel. Lysorb, also known as SNAP (super absorbent natural polymer), is a polysaccharide derived from wheat. Polysaccharides are complex sugars found in many natural substances, like the fibers of cotton, wood, and wheat.
I don't care who says G can't be absorbed thru the skin. I know I have Celiac and DH, and I can't be in the same ZIPCODE as gluten.
Fyi, I had terrible "mosquito bites" as a child...now think it was DH. I was also hyper-active (now called ADD & ADHD).
I use Dessert Essence ORGANIC coconut lotion now (be sure to buy only their ORGANIC line of products) and I used to use Curel. I also use pure organic Shea Butter, that I buy online (no real scent, which is nice). You can google search it; I get mine from sunclaytherapy dot com, which is also where I get my dry clay I put in my bath and make my "anti-itch" paste with. I mention on another post that I found it when I was told I had Herpes
Hello all, I am self-diagnosed, so take this for whatever it is worth.
I have finally scheduled a derm appt., for sometime in August. I have taken pics of my rash (es) in the unlikely event they are gone by the time my appt comes around. I researched the net & found a derm dr that I know is familiar with DH. Also, my mom, a 30+ yr, biopsied Celiac, asked her Dr. For a derm dr recommendation, and it is for the same dr., so we shall see. If I don't have DH, I will eat my hat.
Remember too, DH's other name, "D multiformis"...which more accurately describes my rashes.
About 25 yrs ago, I came up with what I thought was a spider bite, on my hip. About 6 months later, damn if that spider didn't bite me again in the same place! The 3rd time, I showed it to my derm, who was treating me for adult acne...he took one look at it and said it was Herpes (no biopsy, btw). Six doctors have seen it since then...all said either shingles or Herpes (KC & Denver).
I went on the gluten-free diet, as a last resort last fall; I was dying. Rash gone, poof! (it came back with a vengence twice on my back only when I accidentally ingested G.) all other bad symptoms resolved, like a miracle.It was the head of our local Celiac org that told me about DH, after I told her my "herpes" went away.Gee, I sure am glad I took the megadoses of Valtrex for so many years...which never worked anyway.
4 months goes by, I slowly begin getting sick again. Same rash returns, only this time on my hands!
Find TRITICALE in my parrots sprouted seed diet, that I am rinsing in jars, 2-3 x a day, oodles of wheat in the pelleted diet they eat too. Start wearing gloves, not much help. I realize just opening the large seed & pellet containers (omg, G dust inhalation) is making me sick; mask not much help either. Changing a parrots diet is HELL. Then I figure out there is a multitude of G nanoparticles all over my house...try spring cleaning when you feel gluten-sick! I may as well have been living in a bakery.
Well, finally, I have a nervous break down, have a friend come over and get all the seeds OUT. That has helped tremendously.
Next, I am scraping wallpaper off my ceiling in an old bedroom...dust is STINGING my forehead. My daughter is calling me a lunatic. I look up wallpaper paste ingredients. Oh, hell. My poor hands are worse now. Then, like a moron, I change DRYER SHEETS. I am at the health food store, think, oh I need dryer sheets, these here should be healthier for me....NOT. I can't figure out why the rash has spread to all over my body. I am going to scratch off my skin and check into the nut house. I took a long warm bath, went to lie down on the bed, and my body began stinging all over.Then I realize...the dryer sheets! I look at the ingredients, which are several hugely long chemical names I cannot decipher, but in parentheses, it reads (derived from plant sources)! So I look on their website (7th generation) and it says since they don't test for G so they cannot say, but the maxi-pads DEFINITELY CONTAIN GLUTEN. Paper products? You mean like the PAPER dryer sheets? Like I needed to re-wash the 400 loads of laundry? But I am, and it is helping a lot.
Meantime, I want to have a little talk with all the doctors who say G cannot be aborbed thru the skin, if u know what I mean.
But about halfway thru this nightmare, I remembered a product that I have, that is useful for things like spider bites, even stomachaches, when taken internally...it is ultra-venilated french green illite clay. I researched it a few years ago, trying to get rid of my HERPES (which I do not believe I have). It is a dry powder, I mix with water, and make a paste, put a thick application on my rash and cover with saran wrap (important to keep moist). Voila, itch gone and rash cleared up as if 3-4 days have passed.
I could not live without it, buy it online.
There are many different types of clay, and you can email me for more info. I have used another type, came already hydrated, and it stung my skin, so I stick with what works.
Sorry so long...but I felt this was necessary in order to be of help.
Ps- I have no interest in any clay co., just a (unofficial) DH sufferer in KC.
Keep your fingers crossed for my derm appt, in August.
Yes, giving them all gluten-free seeds, legumes, rice, friuts, veggies, etc., now. I am currently in the removing-gluten-dust-out-of-the-house-hell, which I am sure accounts for my bad attitude. Grumpy would be putting it lightly.
The one little blind lovebird is sad, and keeps looking in his bowl for the barley pellets. :-(
But if I have to do it, so do they. They are just used to eating it, but there are no wheatfields in the rainforest, I am sure.
My DH has flared up with this cleaning effort, but hopefully that will go away. Good thing about the weather, because at least it is spring cleaning time and not winter; I can open the windows, clean cages outside, etc.
May I ask, if you could give ur birds gluten-free food too, why did you have to let them go?
Thanks so much for being here...my daughter's upset with me for talking about gluten so much (my cousins call it "Celiac-yak-yak") and today she accused me of wanting to be sick....OMG.