squirmingitch

DF Ann,
Okay, are you low iodine? Many of us have to go low iodine for a while to get the rash to calm down. Iodine really fires the rash --- it's documented in medical texts. For low iodine guidelines see:
http://www.thyca.org/rai.htm#diet

As to the possible cross contamination issue. Read or re-read the newbie 101 as a refresher course. There is a link in there about how to make sure your dishes, pots & pans, utensils, toasters etc.... are not cc'ing you. Also other great info. in that.
http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

I strongly recommend you also eat only whole foods - strictly. Forget the processed  foods. This is how you can insure you are not getting cross contamination until you get this stuff under some kind of control.

Are all your shampoos, conditioners etc.... gluten-free?

You have not been on Dapsone all that long yet & as we are all individuals then sometimes it can take a while for the Dapsone to kick in good. Also worth mentioning is the Dapsone is only going to help the itch at this point --- it is not going to heal the sores & lesions you already have going. They are going to play out their process regardless. AND Dapsone will not necessarily stop ALL the itch & mask ALL the dh from what I have read but it should make things far more bearable.

I remember reading on one of your posts that you have been gluten-free for 9 months now. You do realize a dh biopsy will be a false neg. since you have been gluten-free unless you ARE getting glutened. Also, topical or oral steroids used within 2 months prior will make a dh biopsy a wash.

AND dh can continue to react or present for up to & even longer than 2 years (maybe 10 years ) after going gluten-free. ALL the antibodies have to get out of the skin. Dh can flare & then go away & flare again & so forth anytime until all the antibodies get out of the skin. I have been squeaky clean gluten-free since Dec. 2011 & in Sept. I began a dh flare that is continuing as I type & it's as bad or very close to as bad as yours is. My entire body has been affected --- many portions multiple times. I do not have the option of taking Dapsone as I am allergic to sulfa drugs. And yes, my hubs & my sheets look like yours each morning with the skin shedding on them & naps too.

I know you are hurting & suffering & very, very scared. Dh is scary stuff & it loves to terrorize us! It isn't called the suicidal itch for nothing. And it will make you question everything you eat. It will make you crazy like a loon. I am so sorry that you are going through this. I wish not one single person more in this world had to go through dh. It's pure hell. Been there, done that, still doing it.

Dh also flares with stress. Yeah, I know --- dh stresses us out so how do we de-stress? I wish I had the answer.

I can't tell you much on the infected spots. It is what it is. I use a lot of witch hazel --- drying yes, but then you moisturize but witch hazel keeps infection down. Have you tried peroxide on the infected spots? Then you can coat with honey & go back & forth several times a day.

For what it's worth you are not alone in this. It doesn't help much but during the worst times it can help a bit to think about there being others of us out there who know what you're going through. There are those who have posted here who have made it to the other side of this viscous beast. That knowledge is what helps me most when things are the worst. When I first came here these people were actively posting on here & they helped me to learn all the ropes. Some don't post at all now & some are infrequent but I want you to know that there are people who have made it to the other side.

And tell us how your derm appt. went today.


Rant, rave, scream & cry --- it's allowed here.



Again, I send you huge & very tender hugs. ((((((((ANN)))))))))

Boy Katty, you are the model spouse of a celiac! Kudos to YOU! The others were spot on with their advice.
Based on your last posting I will add that gluten withdrawal can take some time & it can seem gone & then it comes back ~~~ another good days, bad days kind of thing. The first 6 months, at least, of gluten free can be wonky so just try to roll with the punches as you have been doing. He will have advances & set backs. What seems like great healing followed by regression --- up & down.
I will stress that it seems most of us need LOTS of protein & especially in the mornings. I am 1 year gluten free & still find myself needing gobs of protein in the morning. Sort of like turning your meals upside down ~~~ dinner for breakfast & breakfast for dinner.
You did perfect at Thanksgiving! Eliminating the stress is half the battle.
You can give him fortified orange juice to help with the D. When we have celiac disease the villi become blunted (or worse) & the tips of the villi are what dealt with lactose (dairy) but they aren't there anymore so diary is difficult or impossible to tolerate & that can include yogurt so watch for that. Culturelle makes a gluten free, non dairy probiotic capsule if he should need it.
The doc provably said the dark chocolate for the antioxidant factor but check as even dark chocolate can contain dairy.
I have no idea why he said coffee. If your hubs isn't into coffee then I see no real reason for him to force himself to drink it unless someone can come on here & tell us both why he should.
Beans are only bad for him if they cause him gastric distress. Again, I don't know where the doc was coming from with that one.
It's fantastic that you are a baker & seem to love cooking in general. You will transition easily to baking gluten free breads & goodies!

Welcome to the board!

For the low iodine diet see http://www.thyca.org/rai.htm#diet


For help with the itching etc.... see:
http://www.celiac.co...ing-pain-of-dh/

BTW, regular calamine lotion won't do it --- see the link for the exact product.

Also, make sure your shampoos, conditioners & soaps are gluten free. I use Suave Naturals shampoo & conditioner --- cheap, works great & gluten free.

Read this:
http://www.celiac.co...ewbie-info-101/

Iodine in dairy products:
http://www.celiac.co...dairy-products/

And more info. on dh:

Interesting Reading on DH:

http://www.celiac.co...-reading-on-dh/


Descriptions of DH Types:

http://www.celiac.co...ns-of-dh-types/


Help for the Itching, Stinging, Burning, Pain of DH:

http://www.celiac.co...__1#entry823195


DH Photobank:

http://www.celiac.co...-dh-photo-bank/


And welcome to the board! Ask away. Feel free to vent & whine & stamp your feet --- we get it!

There is no real answer as to how long before it goes away. Everyone is an individual. And the bad news is that dh can present ANYTIME it darn well feels like it even if you have been strictly eating gluten-free. It can do this for 2 years or even longer until all the antibodies get out of our skin. For more info. on that see the link for "Interesting reading on dh"

Now aren't you glad you joined our club?

I did chuckle a bit in finding that the article is from 2005.

Besides it being from 2005, I don't see how much this relates to the OP's situation of already having a positive on the bloods.
And to think *I* keep hearing accusations of going OT. (Which I disagreed w/, for the record)

A lot has changed since 2005. Imho just about everyone who wrote technical articles on celiac in 2005 would write them differently in 2012.

It relates to the OP's question:
"Does anyone know if 4 weeks of eating gluten light would lead to a false negative on biopsy?"

Read that last word ------ BIOPSY.

Now, remember, that question was based on the celiac blood panel & I did not specifically ask them about the challenge time for the endoscopy sooooo.......

Not long ago I wrote The University of Maryland Center for Celiac Research     http://www.celiaccenter.org/    asking them these questions:


What is the recommended number of weeks or months a person should be eating gluten in order to have the celiac blood panel after having been eating gluten free?





Does it matter as to the length of time the person has been eating gluten free?





What amount of gluten should the person be ingesting for the challenge.





All of the above questions pertain to adults.

**************************************************************************

This was their reply:

Unfortunately there is no accurate answer to these questions.  It tends to differ person to person.  What we usually recommend is 6-8 weeks of eating gluten before testing.  However, if you have been on a gluten-free diet for a year or more, then more time may be needed – so yes, the length of time on the gluten-free diet matters.  As for how much gluten each day - base it on how much you can tolerate, but at least the equivalence of 2 slices of gluten-containing bread per day.




Elizabeth Fouch

Development Associate

Center for Celiac Research

20 Penn Street, Rm S303B

Baltimore, MD 21201

T. 410-706-5516

F. 410-706-5508

www.celiaccenter.org

When was the last time you came home from the grocery store with ONLY whole foods? It's actually cheaper than "the old" way of shopping. Cheaper by a LOT!
Go to the store & rediscover food! Go through the produce section & really look at all those fruits & veggies you have been whizzing past for years & years. Apples, pears, oranges, tangerines, avocados, mangos, pomegranates, plums, grapes & the list goes on. Snap beans, pole beans, chayote, winter squashes, summer squashes, cauliflower, leeks, tomatillos, tens of kinds of lettuce, fresh spinach, swiss chard, rhubarb, snow peas & on & on.

Eat Lola, eat! Bartful is right --- gluten withdrawal. Starving, unending hunger!!!!! I literally would vacuum with one hand while eating an apple with the other. I could not stay away from food for 10 minutes. I was ravenous constantly! Your body is trying to heal. Don't worry about weight right now; just eat! Your body needs it. Eating more protein will help as well as some good fats --- good fats help digest protein & carbs. If you eat an apple then have a few cashews or peanuts with it or smear the slices with some peanut butter or nutella. And UP, UP your protein in the morning.

Welcome to the board! And we're so glad you finally have found out what your problem was.

What about calling your gastro & telling him the ped refuses to test your boys as he (the gastro) advised. Ask the gastro if he will test the boys. it's only a blood test --- no biggie for a blood draw --- it's not like only peds can draw blood from kids.

I just happen to know that Wish Bone Russian Dressing contains wheat. It was my hubs favorite dressing but it was clearly labeled as having wheat in it.

And Sage, b/c you have anaphylactic reactions this needs to be talked about. You are 14 & at that age where soon you will think about kissing & I don't mean kissing on the cheek right? You need to know that is not okay. That person is going to need to brush their teeth WELL & maybe even use mouthwash. This is to save your life dear. Anyone who is not willing to do that for you is not worthy of YOU.

My hubs nephew has anaphylactic reactions to --- everything --- wheat, dairy, eggs, nuts, bee stings, wasp stings ---- I think he lives on soy & I know that if someone has eggs for breakfast & then kisses him on the cheek his cheek breaks out big time. They have to brush their teeth & wash their face (food gets all around your mouth area) before they can safely kiss him on the cheek.

Sage, without being tested it's hard to say if you are celiac or gluten intolerant. BUT your dad having celiac is a big clue. And just b/c you don't have big reactions doesn't mean you are not celiac --- just like your friend who is celiac & doesn't have big reactions.  There are even what are called "silent celiacs" who have no reactions at all. But any celiac who eats gluten even cross contaminated oats is doing damage to their intestines & this is a very serious disease. There are many serious illnesses which can develop from this if one keeps eating gluten. Things like insulin dependent diabetes, lupus, lymphoma (cancer) & the list goes on & on; plus there are neurological things that can & often do happen. Celiac is a genetically inherited disease. Your dad has it. The odds are that you do too considering the reactions you are having at this stage of the game. I remember your posting before & most of what you told us then & about how much better you feel off of gluten. You said your family (parents) weren't really on board with you not eating gluten & that you had to buy your own gluten-free foods. This is very interesting that your dad has now tested positive for celiac. I hope that now the situation at home has changed somewhat.
And I want to add too that celiac, especially in someone your age, can go into "remission" at times which means you could eat gluten a year from now & have absolutely no reaction at all --- but that does not mean that damage is not being done to a celiacs guts & the rest of the body.
There are a couple ways you could go with this if you want to find out if you are or are not celiac.
1) You can do a gluten challenge which means eating gluten for a specified time & get the blood work done & an endoscopy.
2)Or maybe you should talk to your parents about seeing your dad's doc who dx'd him. It might be that doc will consider your reactions to gluten along with your dad's dx & do an endoscopy on you to see if there is visible damage to your villi & dx you based on that.
Honestly, since your reactions are not all that bad yet it might be best for you to do the whole thing --- the gluten challenge, celiac blood panel, & endoscopy. Also, if you have siblings they should be tested.
As eatmeat said --- the rash & hives you get could be the early stages of dh which is the skin manifestation of celiac disease. This could also explain why you do not have such strong reactions b/c most of us with dh tend not to have many GI symptoms & even when we do they are not as severe. BUT that does not mean damage is not being done to our guts b/c it is!
Sage, we would welcome your friend as well as your dad if either should decide to join us here. We are always happy to help.

Wow. What a surprise Lisa. I too see celiacs but they don't want to know about it. When I found out about myself I did look up my nephew sort of long lost b/c of my sister & my horrid relationship. I wanted to let my nephew know especially as he has a child of his own now. I can only give the  information & then hope they have enough sense to watch for signs & heed them when/if they come.

When I contacted my nephew, he informed me my niece had died a few months prior. I loved her & we got along very well but she was having a "rough life" & it was hard to get in touch with her. All things considered when everything came to light --- I have no doubt my niece was a celiac.

My diagnosis, in my real, everyday world, began with an endoscopy exam. No need to be specific, when nothing is specific.

Lisa, please re-read what i wrote & you quoted ----- I said "all but a FEW exceptions" --- that would be YOU.

And YES, we DO need to be specific. We are trying to get a consensus from the major celiac centers on what would be the time duration as well as the amount of gluten to be consumed for a gluten challenge in re: the BLOOD panel!

Somehow you always seem to miss the point. And when you reply you hardly ever make sense. Write in whole sentences explaining what the heck you are trying to say please.

And since we are on this subject.......

I posted this thread not long ago. A PubMed abstract of a study done by UofC.

http://www.celiac.co...__1#entry815627

Of course, this only deals with the GI's.