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Member Since 01 Nov 2011
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#806535 So Long For Now

Posted by on 26 June 2012 - 05:52 AM

(((HUGS))) Diana
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#806395 2Nd Set Of Blood Results

Posted by on 25 June 2012 - 03:25 PM

She's an idiot. Dump her & get a new GI.
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#806393 The Tale Of The Lemon Bars

Posted by on 25 June 2012 - 03:21 PM

Methinks when you were little were not the only escapades you had climbing back & forth to the backseat nor performing hump sitting maneuvers megal. Nah, you ain't got me fooled fer one darn minute thar. Irish gals be wild young uns I be told.Posted ImagePosted Image
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#806331 How Often Would Dh Show Up In Someone Who Is Not Gluten Free?

Posted by on 25 June 2012 - 12:41 PM

Abby, I'm sorry to tell you this but it's going to be a bigger fight than you think. It is harder for a celiac with dh to get diagnosed than a celiac. I want you to read these 2 threads; they explain much about dh & getting a diagnosis.



You might want to take notes.

Now, I will say this: If your mother has dh then one day -- who knows when --- it will run rampant on her & there will be NO WAY she will be able to ignore it!!!!! If she doesn't listen to you before that day comes then she WILL listen to you when it does. I hope she doesn't wait that long but believe me there will come a day when she will have to deal with it or go insane.

Also, the rash may vanish for months or even possibly years at a time but it will come back.

We are still here for you & for your mom too whenever she comes around.

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#805870 How Often Would Dh Show Up In Someone Who Is Not Gluten Free?

Posted by on 23 June 2012 - 05:29 PM

Abby, not stupid questions at all. Short answer: YES, dh can come & go even when you're eating gluten. Mine came & went before I knew what it was & while I was eating gluten --- for years. I believe my mom had it too. She used to get places in her scalp that I NOW know were dh b/c I get the SAME thing & they are dh.
DH can come & go gluten eating or gluten free. But if your mom is getting the rash & it's dh then one day it will likely flare very badly. If it's dh then she has celiac disease & needs to go gluten free. It can take up to 2 years (or more) gluten-free for the antibodies in the skin which are what causes the rash to get out of the skin so it no longer flares. Ppl with dh tend not to have the GI symptoms, instead the immune system attacks the skin. Or they have fewer, less sever GI symptoms. Since you have been dx'd celiac then there is a good chance that what your mom has is dh. A 50/50 chance or better depending where the genes came from you see?

Here are some links with photos of dh:


DH can take many forms so if your mom's doesn't look like one of the photos it doesn't mean it isn't dh. The hallmarks are the intense itching, especially at night. An itch like you've never known in your life! It often presents bilaterally, ie: the same places on opposite sides of the body. It stings, burns, itches. There may be water blisters.
She can get a biopsy but there is a false neg. rate of 37% even when a really good dermatologist who is experienced in dh biopsy does it. Also she has to continue eating gluten until the biopsy or it will be negative. If she's been on any steroid creams or pills in the 2 months prior to the biopsy then it will turn up negative.
OR, she can just start eating gluten free.
This info. will get you started. Talk to your mom. Ask questions of us anytime. Invite your mom to the site & she can ask questions. We are here to help.
Here is the link to the dh forum:
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#805726 DH Photo Bank

Posted by on 23 June 2012 - 09:44 AM

These first 4 are from Sept. 2011 when I was on the verge of discovering this was dh.
http://rainytown.se/...si/DSC00867.JPG This 1 shows the clear amber fluid. The blisters were coming up so fast & bursting all by themselves.
The following ones are after 6 months gluten free & several months low salicylate & not a lot of iodine but I had been doing so well that I couldn't resist eating 4 tsp. of strawberry banana yogurt & during the night I woke itchin like mad & my neck all broken out in dh. Then other places began to break out again.
http://rainytown.se/...si/DSC02929.JPG Shows the scars on the back of my leg from earlier.
http://rainytown.se/...si/DSC02930.JPG Other leg. Scars will fade away after about 5 months.
http://rainytown.se/...si/DSC02940.JPG Blister on lower abdomen - just formed.
http://rainytown.se/...si/DSC02945.JPG Brand new blister in crook of arm.

I have been adamant NOT to scratch! None of the lesions or scars are the result of scratching them. It's bad enough w/o making bad scars from scratching them. I will scratch around them but never on them. I will rub on them and press on them.
The only place I have not had them yet was on the soles of my feet. I get them horribly in my scalp & they tend to be very large there --- the size of a quarter. They look different than these photos but there is no way to seperate the hair well enough to get a good clear photo. In the scalp they generally take 6 weeks to heal. All others run a course of 2 to 4/5 weeks depending on if I was gluten free or got cc'd (only once) & if I got too much iodine or salicylates.
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#805552 Heat Rash

Posted by on 22 June 2012 - 02:54 PM

I'm glad I could give you a laugh Marilyn. Laughter really is the best medicine.

Gunkie, I do want to caution you about going gluten free BEFORE you get any celiac testing done. DO NOT go gluten free OR gluten light. Not until ALL testing is done including an endoscopy OR a biopsy for dh (Dermatitis Herpetiformis). You must be eating gluten for all the tests. Just so you know.....

And have you tried ice packs for the rash?
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#805485 New To Here But Await Tests

Posted by on 22 June 2012 - 09:07 AM

Okay, calm down. You're in panic mode right now. Take a breath. Breathe.

#1 --- DO NOT, that is DO NOT stop eating gluten!!!!!!! I can not stress this enough! You MUST be eating the equivalent of 4 slices of bread per day all the way through until ALL testing is finished & that includes an endoscopy! Do not go gluten light. Do not go gluten free for a day or two days or a week & then think if you eat gluten for a week before the tests that you will have enough gluten in you. There are enough false negatives on the tests in the first place. You want the best chance of a correct diagnosis & do not want to mess up that chance by not eating gluten.

And print out these tests & take them to your doctor & INSIST they do all of these. This is the current FULL celiac panel. Anything less is not a correct & full celiac panel.

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

The DGP test was added recently to the full panel.

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA
Total Serum IgA

Deamidated Gliadin Peptide
(DGP) IgA and IgG

Also if you are on any kind of steroids or HAVE been on any in the last 2 or 3 months then the tests will turn up negative.

Now, let's talk about an endoscopy. It is not painful. You will be asleep. Plenty of people on this board have had them including little children & all say it's a breeze. Do not be afraid of it. It will be over before you even knew it happened.

And you are very young yet. Your odds of having any chance of lymphoma are so small as to be nil. So don't worry that your future baby is not going to have a mama. And as far as your future baby having celiac disease --- even if it did --- it's really not a bad diet. It's not like being deprived. It's not a horrible thing. And in the future there are going to be so many more diagnosed celiacs that it will be a common enough thing.

So settle down, eat your gluten & the very second the endoscopy is finished you can go gluten free.

We are here for you. We will hold your hand. Ask any questions at any time.

And welcome to the board!Posted Image
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#805453 Heat Rash

Posted by on 22 June 2012 - 05:10 AM

Hi Gunkie, and welcome to the forum!

TY squirmingitch for alerting me to Gunkie's post. Reminds me of Tonto, you're a good heart babe. :D xxx

Your rash looks like Lupus to me, I looked at your photo's closely, but I'm not a doctor. I used to call it my road map rash, or Atlas rash.

You said you didn't know what to do.

Here's what I suggest in order of priority.

1. Take sun precautions. Apply sunscreen containing Titanium dioxide and/or Zinc oxide every two hours when you're in the sun. (That's what my new improved derm recommended.) Buy a good hat with SPF that fits you well. Get SunGuard laundry additive but do read all the precautions and instructions (it takes your clothing from SPF 5 to 30 plus for 20 washes.)

2. Establish with a new derm.

3. If you're established with a doctor, tell him or her you want the celiac panel ordered. If you've been with them awhile, that may just involve a phone call, vs. an office visit.

Even if you don't have Lupus, taking sun protection is worthwhile.

You can start that all in one day even if you're exhasted and feel like crap. It's two phone calls, a visit to WalGreens (Vaniceam SPF 60 is safe) or Wal-Mart has a good store brand. If you want more info on sunscreen, feel free to send me a message.

Coolibar dot com is a good place for sun protection clothing. I shop their sales

At your service Keemosabe.Posted Image

Gunkie, Marilyn forgot to tell you she has lupus so she knows what she's talking about too.

And what little I know about Lupus, drinking alcohol is very, very BAD for it. Makes you feel like crap!

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#805276 Fried Chicken Nuggets --- Crispy! Help! Recipe Please!

Posted by on 21 June 2012 - 11:38 AM

I see you have plenty of good advice but I thought I'd throw mine out there. We batter everything in egg and roll in the gluten free bisquik. I make the best motzerella sticks that way, too. Just buy the string cheese...dip in egg, bisquik, egg, bisquik and deep fry. (double battering keeps the batter from just floating off in the deep fryer) I don't double batter my chicken though. All the "reg" eaters in the house all love it...can't tell the difference. I just made fried donut holes with it this morning rolled in powdered sugar. We are in the South and deep fry everything. : )

My mom was born in Montgomery, Al. as was I & we deep fry everything too. Pork chops, zuchinni, yellow crookneck squash, bell peppers. Hubs & I have (had) a saying: Deep fry a paper towel - we'll eat it! LOL!
I used to make something called Ollie Bollins which were somewhat like donut holes only even better. So now you have to give me the donut hole recipe - please. Posted Image

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#804747 Could This Be Celiac?

Posted by on 19 June 2012 - 03:10 PM

Carolyn, please read this & especially the portion under "Screening". As follows:

Although celiac disease is fairly common, is underdiagnosed, and can lead to serious complications, mass screening is not yet recommended. Screening with EMA and tTG may be warranted in patients with high risk factors, notably first-degree relatives of patients with the disease.


Perhaps you should print it out & highlight pertinent parts & take it to your doc.

You know, the doc could easily do the celiac panel on you at the same time he is doing this other stuff. Sort of like --- why prolong the dx, why hunt & peck, let's just get all the tests done at one time & get to the bottom of this whole thing. Just b/c they did a biopsy in 2004 & it was neg. does not mean that you will never have celiac disease. My goodness! That was 8 years ago. They are acting like if you get tested once in your life & do not have it then that's IT --- you will NEVER have it. Shortsighted.

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#804624 Accidental Discovery

Posted by on 19 June 2012 - 09:51 AM

There could be something to this. If you want to do a really good test of the gluten-free diet then be very strict about it & stay on it for 6 months. But I will warn you that if you try to go back on gluten even now (after 3 weeks gluten-free) for testing; you are likely to have worse symptoms than before. This is the norm for almost all celiacs who go off gluten & then try to go back on for a challenge or for testing.

If you don't care about an official dx then you're already on your way!

And welcome to the board! Posted Image If you need help --- just post.
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#804342 Lost And Confused. So Sick. Please Advise.

Posted by on 18 June 2012 - 11:31 AM

I don't even know what to say b/c I'm soooo steaming about the *&*%%$ doctors who told you you could eat gluten!!!!!! Positive blood work for celiac & they say you can eat gluten. Shaking my head in disgust. There are no false positives on the blood work for celiac only false negatives.

Dear, STOP eating gluten this very moment. And you were likely getting cross contamination the first 5 years that you were eating what you thought was gluten free & that's why you didn't feel better. Start over. Learn. We are here to help you. Start here:


Ask questions any time.

Humongous hugs to you!
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#804089 Fried Chicken Nuggets --- Crispy! Help! Recipe Please!

Posted by on 17 June 2012 - 05:59 AM

Thanks for the review. I've never made mine in a skillet, and it is a dream in a deep fat fryer....just like KFC to me.

It's good to know that corn starch works well too, if I ever need to fry it in a pan versus my DFF, I'll do the cornstarch one. I wonder how it compares to the potato starch? I use to use it instead of the tapioca, and liked it. However, if cornstarch works, It would be better on the pocket book, the potato starch is a little spendy. Thanks again for the review! :)

The cornstarch doesn't have any potato flavor & when fried up tastes like fried chicken done with wheat flour. Yes, the cornstarch is much easier on the pocketbook than tapioca flour. Also, the potato flour really, really stuck to your fingers, the bowl, anything it touched --- very difficult to get off. Cornstarch was easy peasy --- so was the tapioca.

BTW --- here's the Disney fried batter recipe that Skylark raved so about. I'm going to try it too.


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#804087 Swollen Neck Absolutely Insane

Posted by on 17 June 2012 - 05:51 AM

You can't save the world. You can't save your family if they aren't listening or willing to save themselves. And I don't mean to sound cruel saying that. I liken it to alcoholics -- no matter how much family members want to save the alcoholic; the alcoholic has to want to save themselves.
It sucks that the testing is so imperfect. Further sucks that so many docs don't have a clue. All I can say is that when your family notices the immense changes in you & they surely will then they will realize that you're on to something. And maybe then they will try it themselves.
But you have to save yourself FIRST. When they are ready to come around then you need to be there to help them so you go girl & get well!
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