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Member Since 01 Nov 2011
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#804087 Swollen Neck Absolutely Insane

Posted by squirmingitch 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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#803565 Fried Chicken Nuggets --- Crispy! Help! Recipe Please!

Posted by squirmingitch on 14 June 2012 - 04:24 PM

Hi all! Last night I tried 2 of the recipes. Catsmeow's tapioca starch recipe & maryshe's cornstarch recipe. Hey, I was frying..... might as well try 2 at one time.
I have to say they were both good. The tapioca one really did taste much like KFC! The coating was a little tough but I attribute that most likely to the fact that I don't use a fryer; I'm a cast iron, dutch oven fryer girl. Add to that the fact that we are renting fully furnished & my cast iron is in storage so I only have UGH! teflon to cook in & it makes it very difficult getting frying temps & times right.

The cornstarch worked like a dream. And it did stay crispy at least until after dinner when we promptly devoured what were to be the leftovers.Posted ImagePosted ImagePosted Image

And Skylark, I haven't forgotten about the Disney fried chicken. I have an email in to the Disney chef. Waiting for reply.
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#803561 Continuation

Posted by squirmingitch on 14 June 2012 - 04:12 PM

Well it sounds as if things are a bit better today. Yay for small gifts!Posted Image
I know it's very difficult to say things to our parents which we know will upset them. It's hard to take an immovable stance & lay down the law to our parents no matter how old we get or how unreasonable they are being. They are our parents! We are programmed to try & please them.
I was very fortunate to have parents who were very understanding even when they didn't understand.
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#803325 On The Subject Of Memory Problems

Posted by squirmingitch on 13 June 2012 - 05:01 PM

I was so bad off memory wise that I often could not remember the name of things like "fork", "plate", "knife" & forget (ha-ha) about me remembering just about anything at all! What's for dinner? I don't remember. Did I check the mail today? What day is this? What day is this? What day is this? all in the space of a half hour. My mom's side of the family had Alzheimers including mom. Uncle died of it at 61! I thought OMG! I've got it & got it way early. I'm going to die of it early just like Uncle Bob. I couldn't remember diddly squat.

Fast forward to 6mos. gluten-free & I'm baaaack! I still forget some things but I haven't forgotten the name of a fork in a long time now. I no longer worry about coming off as an idiot half wit when talking to people now. I used to have a fabulous vocabulary & it's coming back. It's so great to be able to call words into my mind again & use them!!!!!! YES!
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#803195 Newbie Looking For Advice...

Posted by squirmingitch on 13 June 2012 - 08:55 AM

Start with this Roxie:

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#803130 Dog Food

Posted by squirmingitch on 13 June 2012 - 05:38 AM

Do not see that one on PetSmart's web site. :( How big of a bag are you getting at $11?

I believe that's going to be a 5 lb. bag but not sure as I don't feed that to my dog. But just looking online it looks like the 5 lb. is around the $11 mark.

And one thing I would mention ---- you will find you don't need to feed AS MUCH of it as the crappy foods with lots of fillers. Why? Because the dog is getting more nutrients & absorbing the nutrients from the food. Cruddy fillers do nothing for nutrient value & you have to feed more volume which equals more volume in the ah-hem end product if you catch my drift.Posted Image
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#802953 Tiramisu

Posted by squirmingitch on 12 June 2012 - 12:03 PM

Tears running down my face from laughing so hard. Belly hurts & not from a glutening!Posted ImagePosted ImagePosted ImagePosted ImagePosted ImagePosted Image
Funny, funny song!
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#802698 Tiramisu

Posted by squirmingitch on 11 June 2012 - 04:15 PM

Well, I happen to need to gain a few pounds so I don't need to take my pants off but I'll join the party! I have only had tiramisu twice in my life & while it was good it was not to die for but I sensed inherently that I had NOT eaten good examples of it. I have read recipes for it & I KNOW it's right up my alley! I was rather frustrated that the ones I had did not live up to my expectations. Neither of them were home made. I never made any myself b/c it's NOT the hubs thing at all so i would have had to eat the whole thing by myself. No, I couldn't have. I would pop like a balloon!Posted Image
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#802423 Emotional

Posted by squirmingitch on 10 June 2012 - 06:02 PM

I know. I'm sorry you're feeling blue. It probably wasn't too great an idea to go out to dinner so soon yet. And I know all you can focus on right now are all the things you think you can't ever have again. But believe me, there are substitutions for all those things. Some are better than others. But I promise you it gets a whole lot easier. It really does. I no longer bemoan the foods I at first thought I could never live without. Honestly, I don't even think about those foods anymore. But right now you're hurting mentally & going through a grieving process. It's normal. You have to get it out of your system. Go ahead & have a good cry.
Here, I'll cry with you.

Waaaahhhhhhhhhhhhhhhhhhhhhh, waaaaaahhhhhhhhhhhhhhhhh, waaaahhhhhhhhh.

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#801663 Contamination On Food Boxes

Posted by squirmingitch on 08 June 2012 - 09:04 AM

Have the gluten-free family members ever considered gluten hands touching gluten-free canned goods in the store? Ooooooooo maybe they need to walk around wearing disposable medical gloves so they don't touch anything that gluten hands have touched. Or how about bags of flour breaking & spilling in the store room of the food warehouse or the grocery store back room & flour dust settling on everything in there? Maybe the gluten-free ought to live in a bubble like bubble boy on Seinfeld. Am I being over the top? YES!!!!!!!!!!!!!!!!!!!!!!
To the OP, WHATEVER you do, don't DARE mention the scenarios I just put forth --- they are likely to go to those lengths to protect themselves.
I stand with everyone except captaincrab. Take your frozen meals in the bag in the car. The celiacs in your family are being ridiculous.
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#800980 Another Does This Look Like Dh Post

Posted by squirmingitch on 05 June 2012 - 04:22 PM

Dr. Jackanapes.
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#800650 Thyroid +Gluten Withdrawl

Posted by squirmingitch on 04 June 2012 - 04:33 PM

It could be an ear infection. I don't think there's such a thing as "gluten withdrawl" since it's not a drug and there's no physiological addiction. That's like saying.. "Raisin withdrawl" or "Canola oil withdrawl". I'm glad you are getting it checked out, though. I just had surgery for a lump on my thyroid that they thought was cancer. Please have them check for thyroid lumps, because thyroid cancer often spreads to the lymph nodes in that exact area and can cause ear pain, too. Mine was NOT cancer, but it took going to a couple of doctors and the lump that was removed could have morphed into cancer in a few years because it was follicular. Hope you are OK.

I can guarantee there is such a thing as gluten withdrawal! I've HAD it. And just read the posts on this board & see how many have gone through it. It's REAL & it EXISTS!
If you haven't gone through gluten withdrawal then you are a rare bird & it does happen sometimes. I am overjoyed that you were spared the misery of that. Seriously, I mean that in all sincerity.

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#800408 Went gluten-free In Support And Found Out You Had It?

Posted by squirmingitch on 03 June 2012 - 04:15 PM

I cried reading your story of you & your daughter. I'm SO happy you both are doing great!!!!!Posted Image
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#800260 What Do You Think?

Posted by squirmingitch on 03 June 2012 - 04:52 AM

Squirmingitch: thank you for the link. I had no idea that DH could present after going gluten-free. It seems like most people go gluten-free because of the rash vs. develop the rash as an effect of accidental exposure after having been gluten-free. Does your rash get irritated by sea salt? I hope it's not 10 years! however the antibodies staying in the skin explains the mysterious outbreaks. Weird!

Jane: Sorry about the pictures! The majority of my rash is on my butt, therefore I don't have many pictures of it to show. I've followed some of your threads and I am so sorry the doctors haven't been more understanding/helpful/knowledgable. It seems like the skin biopsy also has a very high false neg. rate. :( I do hope you find a competent doctor. I hope your rash has gotten better?

diandliam:Thanks for the warning about the sals. I will definitely look into it if my rash doesn't calm down. Baths seem to work better for me, too. Yes, nothing like being woken by a stupid itch. It seems to have a mind of its own. And why nighttime?!

I think I'll try eliminating some more of the processed food and see if that helps, too. :)


I don't use sea salt. there is differing info. on whether sea salt is low iodine or not. I play it safe by using non-iodized salt. Just like the iodized salt you buy but on the container it states "plain salt"; "this salt does not supply iodine, a necessary nutrient". And iodine is linked to being a catalyst for dh flares. So iodine is where you would want to look first for controlling the flares. You don't want to go low iodine (li) for more than about 2 weeks at the time. But you can safely eliminate seafood from your diet until all those icky antibodies are out of your skin. Go here for info. on li:
http://www.thyca.org/ click on low iodine cookbook --- I think it's page 11 or 13 that gives info. on low, med. & high iodine foods.

Sals ---- You mentioned processed foods ---- VERY high in sals are all processed foods. Look through the threads here on the dh forum or put sals or salicylates in the search box & you will find links for that.

You would be surprised who develops the rash after going gluten-free! I was surprised. A number of celiacs who have been gluten-free sometimes for years end up over here in the dh forum when they get glutened & break out in their first experience with dh. Personally, I wonder & tend to believe that almost every celiac would eventually present with dh if they were not on a gluten-free diet. But that's just a hypotheses I have.

Yeah boy! We ALL hope the antibodies don't take 10 years to disappear! BTW, did you know that dh is called the "suicidal itch"? Uh, yeah! And I can relate. I often wonder what people in the 15, 16, 17, 1800's who had bad dh managed to live & not go insane. They had no idea it was related to eating gluten. Those poor souls.

I have found that nighttime is not the only time it gets really bad. I am fond of naps. The dh itches when I take a nap too. I often get a few new blisters or "insect bite" type of presentation when I've been down for a nap. Happens every time. Makes me not want naps anymore.Posted Image What is it about sleeping or is it being prone that makes dh go nuts?????!!!!!!
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#799457 Dermatologist Was Mean, Made Me Cry...

Posted by squirmingitch on 30 May 2012 - 03:07 PM

I also wish you a great night's sleep; please wish me one, too. I am in the same boat as you and have been trying to maintain a strictly gluten free diet since the last of Feb. - the first of Mar. My rash wakes me up nightly with horrible itching and pain.

In many ways, it seems that my symptoms have worsened, especially peripheral neuropathy and this rash. I have been unable to find a dr. who would biopsy my rash--gastrointerologist thinks it is DH but won't treat it; endocrinologist thinks it is ezcema but wants a dermatologist to treat; dermatologist has been on maternity leave since April and will be untll October. (OMG!! I was lucky to get to take my 6 weeks of leave that I had saved with each of mine!! Yes, I know; sour grapes!! LOL)

I really don't know what to do or whom to see. I am ready to get well.

I also had drs. who wanted to dismiss my celiac disease because I am overweight. As per my most recent blood tests, my iron levels are okay, but my red blood cells are way low. The endo said this was "puzzling" but offered no advice. He also did not do a vitamin k test and acted as though I had grown horns when I asked if he had and if he would. even though I have broken capillaries over ~ 1/2 of my body. I have been anemic most of my adult life and was even referred to a hemotologist even though the referral got lost and I never got an appt. I do drink a good amount of red wine, which could possibly explain the iron levels being near normal.

Does anyone have advice????

Why do you want a doctor's dx of your dh? From what I understand, you have been diagnosed with celiac disease. So I don't understand why you feel it necessary to get an official dx of dh.
You have been gluten-free for 2 months now. Even if you found a great derm well versed in dh then a biopsy would likely turn up negative. You need to be consuming gluten for the best chance of a positive biopsy.
If you have celiac disease & an intensely itchy rash that is worst at night then it's pretty much assured it's dh.
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