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squirmingitch

Member Since 01 Nov 2011
Offline Last Active Private
*****

#898340 Should I Test For Iga Deficiency?

Posted by squirmingitch on 05 December 2013 - 11:17 AM

My hubs had been having dh but he was sailing down the river of Denial. I knew what he had but he was not willing to admit it. Finally, he could ignore it no longer & had to admit dh was what it was. And for the first several weeks he only went gluten-free but kept the synthroid & iodine. His dh did improve some but well, dh is dh & makes you insane & so that was when he decided to withdraw iodine. 

 

The signs were there for years about celiac but at that time we were not astute enough to pick up on them. We didn't even know what celiac was. He would have D for days followed by C for weeks, off & on it went with periods of "normal" (a relative word) in between. He had rashes on his legs. What brought it all to a head & exposed it was a crushingly, tremendous amount of stress along with cancer for a number of years. Then the rash became well defined as dh & presented on his feet, ankles, calves, thighs, buttocks, hands, fingers & arms with some mild ones on his back.

 

We already knew I had dh & knew how difficult it is to get an official dx. We discussed, at length, whether he wanted to try to get an official dx (he was gluten light already b/c of me) before going gluten-free. I called all the derms within any reasonable distance & they had no clue about dh & doing a biopsy for it. Since the blood panel for celiac turns up false neg. 60% of the time with dh the decision was made to forego an official dx & go gluten-free. We know what it is. And we don't need anyone's permission to go gluten-free. He had also seen how I was suffering (having it way worse than him) & wanted no part of dh worse than he was already dealing with. Neither of us have had any trouble staying on the gluten-free diet. It's gluten that scares us, not gluten-free. 


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#898307 Newly Diagnosed

Posted by squirmingitch on 05 December 2013 - 07:48 AM

Be careful on the vodka, only ciroc (sp) is gluten free. however rum, tequila, Cognac, and wine are gluten free. 

I have to argue with that statement. There are many vodkas not made with wheat. All you have to do is Google it. Chopin is one. But regardless of that; the distillation process for hard liquor removes any gluten so let's not go promoting fear for lack of knowledge.


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#898026 Should I Test For Iga Deficiency?

Posted by squirmingitch on 03 December 2013 - 05:37 AM

60% of celiacs with dh test false negative on the celiac blood panel so there goes that neg. result. Plus they often miss tests in the blood panel --- more often than not. So many people don't end up with a FULL blood panel but that is sort of a moot point here in this case.

If you've been taking steroids in the past 2-3 months before any of the celiac tests (blood or dh biopsy or even endoscopic biopsy) then the result will be a false negative. It's very difficult to get dx'd with dh b/c docs just don't understand/know this. It looks like you were on the steroids when the dh biopsy was done which makes the biopsy a wash. In other words, you still don't know. You might as well not have had the biopsy. Even when a biopsy is taken correctly & you have been actively eating gluten for the proper amount of time & not been on steroids for the proper amount of time ~~~~ the LAB that examines the biopsy has to really know what they're doing & the tests they perform are subjective so there's a ton of room for error!

 

Since you were on steroids then I'm betting (but can't say for positive) that all those tests for anything autoimmune are junk. Steroids ramp down the immune response which is contradictory to the tests to discover immune problems.

 

A couple things stand out to me though in your case.

1) DH is insanely itchy. Absolutely drive you out of your mind. crazy, just shoot me & be done with it itchy!!! You didn't really mention anything like that.

 

2) When ppl with dh take sreroids the steroids work to control the dh & you thing YAY! BUT the moment you go off them the dh comes back quadruple fold & punishes you like you wouldn't believe for using steroids for it & then removing them. You didn't mention either of these things happening.

 

I'm going to have to say, IMO, it doesn't really sound like you have dh. Not saying it isn't possible but it doesn't seem like it.

 

As far as a test for Iga -- you can get one but that's up to you. It would be better to go back to the derm in 3 months after you've had NO steroids & get a dh biopsy performed again.

 

I hope this helps. 


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#897771 Please Help Me, Help My Mum

Posted by squirmingitch on 01 December 2013 - 09:52 AM

You need to make sure her meds are gluten free or she won't be gluten-free. She could be having problems with the dairy. IF she has celiac disease then the villi get destroyed & the tips of the villi are the 1st to go ~~~ the tips of the villi is where the digestion & beak down of dairy (lactose) is done. Many celiacs, once they've gone gluten-free, find they can not eat dairy for a while ~~~ some for months & some for a year or even more until those villi heal.

When one 1st goes gluten-free, it can be a rocky road. Ups & downs with the symptoms coming & going or even seemingly getting worse. The body is adjusting & has a lot of adjusting to do. There are lots of subs for dairy. Almond milk, rice milk, etc.... Google on here to find lots of options or post a thread about subs for dairy. She could use a good probiotic. Culturelle makes a good dairy free, gluten-free, capsule. I'm speaking from the US though & since you said your "mum", then I'm guessing you're in Great Britain or Australia so you need to check if the Culturelle is available there & if it's gluten-free.

Also, you mentioned the gluten-free gravy. When ppl go gluten-free, we suggest they eat only whole foods for a minimum of 3 months (meat, fruits & veggies) & that means no processed foods even if they're gluten-free ~~~ they're still processed food with a lot of stuff in them that can upset the system.

Read this too:

Newbie 101 for celiacs
 
 
I will add too that many celiacs can not tolerate soy so that may be a factor for you to consider. I agree that the sodas are not good & am glad you have her off of them.
 
Keep a food log as it can help immensely to track down problem foods.
I would say to keep her gluten-free & drop the dairy but not to worry about the acid foods for now & see how she does.

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#897606 Newly Diagnosed

Posted by squirmingitch on 29 November 2013 - 07:59 PM

First, you need to decide if you are going to have a gluten-free household or a shared household. It gets tricky having a shared household & you & EVERYONE ELSE in the house have to be extra careful & that goes for visitors as well.

 

Take a magic marker & go through each food cabinet & read labels carefully, when you find things that are gluten free then write a big gluten-free on them. If it doesn't have a gluten-free on it then you don't eat it. This is all going to be overwhelming at first but try not to panic. Shop the perimeter of the grocery store. Go with whole foods for the first 3 months bare minimum --- IMHO 6 months is better. This will give you time to get the diet do's & don'ts down & also keep you from accidentally getting cross contaminated or glutened. It will also take a lot of the stress off you until you get used to everything.

 

Read this:

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

 

Remember, if you wonder about whether anything is gluten free or not then just go to the computer & put in whatever & gluten free & you can get your answer or post on this board but you can find out real quick just by Googling. 

 

You need to check ALL your meds to make sure they're gluten-free. This goes for your OTC stuff too.

 

Even though you don't really have much in the way of symptoms; I want to warn you that you still may go through gluten withdrawal. Put gluten withdrawal in the google search box here on the board & you will come up with tons of info. on it. Go ahead & read lots of threads on the subject just so you know what can happen so if it happens to you, you won't freak out & you will know the signs & symptoms.

 

Ask, anytime. If you aren't sure then ask. 

 

Welcome to the board.


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#897314 Dh While Pregnant, None (Maybe) After?

Posted by squirmingitch on 26 November 2013 - 10:41 AM

I don't know how accurate that info. is that males get it more often. Maybe it's just that females are more apt to come onto a site like this but since I've been on here; I'd have to say the females outnumber the males 100 to 1. I know the "medical" texts say that about males. The medical texts also say it occurs on the elbows & knees & so forth but ask anyone here with dh & we can tell you it occurs any old where it wants to; in fact my elbows & knees were the last place it showed up on. Same goes for my hubs.

I can't really answer your question as I have never been pregnant but it is known that dh seems to be spurred by pregnancy ~~~ the hormones bouncing around I suppose.


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#897193 I Have Much To Be Thankful For This Thanksgiving. Help Me Celebrate!

Posted by squirmingitch on 25 November 2013 - 01:00 PM

This time next year or before & you will be eating greek yogurt & sharp cheddar Jamie. And having pumpkin pie too.


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#897119 A Concerned Husband With Questions...

Posted by squirmingitch on 24 November 2013 - 05:06 PM

Len, Gluten turned sweet lil ol' loving me into a dyed in the wool fire breathing dragon lady. I could easily have been an ax murderess. I didn't want anyone to even speak to me & for a long time I could not see what a harridan I had become. Sex? Forget about it! 

You see Len, celiac disease affects every. single. cell. in. your. body. And it doesn't matter if we realize how we're acting or not ~~~ it's sort of like you could say, "the gluten made me do it".

The others gave great advice. Both of you should read the newbie 101 & the book IrishHeart suggested. Have patience, we did not get sick overnight & we will not heal overnight. It takes time. But that time will come, I can guarantee you that. 


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#897038 Finally Diagnosed And Wondering If I Have To Live In A Bubble...

Posted by squirmingitch on 24 November 2013 - 06:40 AM

Organic restaurants do not mean they are "safe" restaurants for you. You can get as much cross contamination there as anywhere. Since you live in SF & there are many options for you then I would suggest you ONLY eat at totally gluten-free restaurants. Then you don't risk getting cc. 


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#896172 Best Way To Deal With Servers?

Posted by squirmingitch on 16 November 2013 - 07:26 PM

annajazz, Your question was how do we deal with the server? The first thing wrong with your question is that you seem to think the server is the only person you have to worry about. That's the first mistake. You have to worry about every single person who works at that restaurant & enters the kitchen. You not only have to worry about the chef & other cooks who are on duty while you're there but the chef & other cooks who took the shift prior or even the day prior. There are 1001 ways to get cc'd in a restaurant. 

gluten-free Lover (Colleen) was not being insensitive in the least! She was trying to help you & teach you. If helping & teaching is insensitive then count me insensitive also. Colleen was being caring & trying to protect you. It was insensitive of you to throw that back in her face!

 

I have worked in restaurants (some of them very upper crust) & been back there in the kitchen. I know what goes on back there & it isn't pretty! It is disgusting even when one does not have to be gluten-free or does not have severe allergies to foods. Employees putting their fingers in foods & taking bites b/c they are hungry & don't have time to eat or just "feel" like tasting this or that. I have seen butter come back from tables that got scraped into a big bowl & then used in the mashed potatoes or to fry eggs in. No, they aren't supposed to do these things but sister, if you think for 1 minute that stuff doesn't go on then you need to think again. Spoons or spatulas dropped on the floor, picked up & used; maybe they got wiped off on a filthy apron. I could go on & on with what goes on in the kitchen alone.

And then there's what goes on outside the kitchen that you can see if you observe long enough. Wait staff putting their fingers in drink glasses to pick them up 4 or 5 at the time to clear a table & then turn around & come right back out of the kitchen with their fingers on the rim of YOUR drink. How many times pre gluten-free did my hubs & I find lipstick on our glasses? It may have gone through the dishwasher but there was still lipstick on them when we got our drinks served in them. Silverware with fingerprints on it or dried food particles on it. What is laying on my plate beneath the food that is piled on it? I can't see it so I don't know.

Your life changed forever the day you were dx'd with celiac disease. Please wake up & realize that fact. You can not safely do the things you used to do. None of us are happy about that but we deal with it & are thankful we don't have some disease there is no treatment for. Annajazz, please realize I'm truly only saying this for your good. Eating out now is very serious business & you need to realize just how serious it is & how easily you can get cc'd. Eating out is playing Russian Roulette every single time. 

The others have given you great tips for dealing with the eating out thing. Call ahead & explain you have to bring your own food & you will find most restaurants agreeable. Eat before you go. Have a drink & enjoy the company. Treat yourself with something special to eat when you get home. Carry snacks always!!!!! But please don't think you only have to worry about the server or the ingredients list on a particular BBQ sauce. There are 1001 ways to get cc'd.


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#895956 DH Photo Bank

Posted by squirmingitch on 14 November 2013 - 07:50 PM

Ohhhhhh, nooooooo, steriods, topical or oral are no nono !!!!!! Especially the oral!!!!!! They will help a lot but the second the steroids are withdrawn the rash will punish in SPADES!!!!! You don't want to put her through that hell.

This stuff is a bitch!!!!

It can take 2 years or more for the antibodies to get out of the skin. We are all individuals & there is truly no set time. I'm sorry. So very sorry to tell you that but .......

I'm coming up on 2 years sooooooo strict gluten-free on Dec. 1st & I'm still having the rash BUT I'm 3000 times better than I was.

Dapsone..... is she allergic to sulfa drugs? Dapsone is in the sulfa class. There are many side effects. Blood monitoring should be done. It can make her anemic. Do your research before you decide to do that. 


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#895930 DH Photo Bank

Posted by squirmingitch on 14 November 2013 - 04:31 PM

I'm having major computer problems (repeatedly crashing) & am trying to fix it so I'll have to be brief. IMO that's dh!!!!!

If you had been gluten-free when the biopsy was done then OF COURSE it would come back inconclusive or negative. If the biopsy was taken directly ON a lesion then it was done wrong & OF COURSE it would not be positive for dh. Damn doctors who don't get it!!! :ph34r:  :ph34r:  :ph34r:

 

For most of us, iodine makes the rash go bonkers. It's like throwing lighter fluid on hot coals. The soy most likely has carageenan in it which is insane with iodine & milk has a lot of iodine too. Try a low iodine diet for two weeks. See http://www.thyca.org.../lowiodinediet/ for low iodine diet (of course cut the gluten). 

 

The rash can present anytime until all the antibodies are out from the skin. The antibodies get deposited under the skin for those of us with dh. So she can have the rash until they all get gone. Also, you need to be rabid about cross contamination b/c the rash is ultra sensitive to the tiniest amount of gluten.

 

Read a whole bunch of threads on here & that will be your best source of info.

NSAID's make the rash flare too.

 

If I don't crash into oblivion & can get this thing fixed then I'll be back in the next few days.

 

((((((HUGS)))))))


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#894423 What Did I Eat?

Posted by squirmingitch on 03 November 2013 - 10:26 AM

http://www.celiac.co...ing-pain-of-dh/

 

Abby has been a very quick learner so you can bank on what she says!  :)

 

It could have been something you ate like the feta (iodine) or it could be nothing you ate. This darn rash will vex you to no end!!! :ph34r: I have no idea if artichokes are high iodine or not. I haven't seen them on any list but something in my gut is telling me they may very well be high iodine. Just guessing mind you.

 

An example for you is this:

I have been squeaky clean, strict, 200,000% gluten-free since 12/01/11 & was low iodine from around Feb or March of 2012 all the way up until 9/10/13 & I STILL have the rash. It has improved 1000% but I still have it & it will flare & recede, flare & recede as it pleases. It used to make me nuts wondering what had set it off since I was so pristine in my diet. I would question if this or that made the rash flare, does it not like chocolate? does it not like tomatoes? does it not like..... & the list was endless. I don't drive myself nuts anymore. IT does what it wants & at times there will be a pattern of days you can sort of count on but in the end, bottom line, it has a mind of it's own & will do it's own thing regardless. The only control I have is to be certain I am not getting any gluten from any where. I also know that stress has a big effect on my dh. When I quit worrying about what had set off the rash this time or that time; I have done better. Accept that you only have X control over it. I am improving but it's like baby steps, very slowly & sometimes it even seems to go backwards but you just make sure you are not getting any gluten & forge ahead. One day we will be on the other side of this. Some of us sooner than others but 1 day we will ALL be on the other side.


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#894282 Skin Biopsy For Dh

Posted by squirmingitch on 02 November 2013 - 12:05 PM

First let me tell you about NSAID's. They are known to make the rash flare. Some of us can use Tylenol but personally, i have to really monitor my use of even that. I used to couldn't take it at all w/o a flare & now almost 2 years gluten-free, I can take it in strict moderation. There is a product called Arnica gel (OTC) that 1 can use for muscle aches etc.... as it's not an NSAID.

 

I'm really glad to hear your doc thinks gluten was triggering the asthma ~~~ I was just thinking about that & wondering so maybe (let's hope) that's the case & you won't have to deal with being caught between a rock & a hard spot.

 

Well, "officially" the med professionals say that topical gluten will not hurt you. But those of us with dh have a different story to tell. We get lesions, & that's an opening in the skin & where there is an opening in the skin, gluten can get. That's the way I look at it. And I will say that I am not a reactionist. I really try to look at things logically & not just freak out. Shampoo ~~ it can get in your mouth as can conditioner you use or anything else you put on your hair. Lotions ~~ you touch your leg & then later maybe put your hand on your lips or whatever. I don't use any topical products w/ gluten. Sorry, don't care what anyone else says about it. I can't afford to have this rash punish me anymore than it already has/does. I'll challenge anyone who says different b/c until you've experienced this rash, you will never fully know the hell it is. My dog is also gluten free. Why? I kiss my dog. Yep, I do. My dog licks herself & I kiss places she may have licked. So she's not eating anything with gluten in it. Grain free dog food. Also her shampoo is gluten-free. The rash is unbelievably sensitive to the tiniest amount of gluten. i can not stress that enough! You need to get absolutely vigilant not to get cc'd now. Do yourself a favor. It's not fun but I guarantee the alternative is far worse.

And, I haven't seen any medical studies that tested celiacs with dh using topical products with gluten in them so they are just talking out of their hats on that score & until they can prove it with valid studies then I will continue the course of gluten-free topical products.

I may or may not have a topical wheat allergy?????? Sort of????? but long before (years) I knew I had celiac & dh, I quit wearing makeup. When I wore it even for an hour, i would get itchy, puffy flesh. I now use gluten-free makeup & have no problems. Nuff said?


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#894039 Another Newbie With Questions And 2 Glasses Of Wine

Posted by squirmingitch on 31 October 2013 - 02:25 PM

I think most of the dh sufferers that did try Dapsone & could not tolerate it (side effects) as well as those who did fine on it do not visit the site anymore. I will say that from my experience on the site; the majority who tried it had side effects too badly to stay on it. I have never tried it & don't believe I can b/c I'm allergic to sulfa drugs as is the case with many it seems.

 

Also, from my experience on here; pretty much 100% had crazy bad, bone deep itch. You can't sleep @ night & if you fall asleep you will be woken in short order from the itching. It's just insane!!!!

 

I found a couple links for you re: the steroids affecting biopsies. The biopsy is looking for IGA deposited under the skin which is what the rash results from. These links refer to steroid use affecting the IGA in the celiac blood work & state 1 month. The skin is different & would take longer (just as it takes longer to get the antibodies out of the skin) to get out of the skin. But judge for yourself.

 

 
 
Now, I'm outta here. It's our 40th anniversary today & I intend to enjoy what's left of it.

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