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I Am New To This... Help


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#1 Cole Jones

 
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Posted 04 October 2012 - 01:18 PM

Okay, so I am new to all of this, and I also do not have insurance, so please don't judge the fact that I am self diagnosed... I am 21 year old female, and since I was 12 I have had this ridiculous rash that I could never get rid of and I could never find anything that looked like it until a nutritionist at my work and I started talking. She noticed that I am always tired and I told her I have a tendency to feel moody and headaches and gassiness yeast problems and a number of other things. Well she told me I should look more into it and once I started looking and reading many many other peoples stories and doing a little experimenting of my own I feel as though this is the only thing that makes sense and adds up. Well I have been eating gluten free for almost a month maybe just a tad less. I do feel better in some departments, but my rash is still there and just as painful... I do think I have been glutened once during this time a small packet of soy sauce... ugg... and I'm scared that if I am reacting to SOY SAUCE ONE PACKET!!! then how sensitive am I? I also wondering if I should be worried that this isn't my issue but I don't see what else it could be... Any advice or anything would be great.

ps. I have anxiety if you can't tell lol I have heard that goes hand and hand with gluten.

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#2 mushroom

 
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Posted 04 October 2012 - 01:46 PM

Hello, and welcome. And congratulations on your forensic abilities. If you are starting to feel better, that is a hopeful sign.

The rash is quite possibly dermatitis herpetiformis, which is the version of celiac where the antibodies attack your skin. It can be both extremely painful and itchy, leave scarring, and hard to get rid of. Besides being sensitive to gluten, it is also aggravated by iodine, so you should try to eliminate iodine-containing foods from your diet -- eggs, iodized salt, anything with seaweed (such as sushi), and by the way, definitely ditch that soy sauce in favor of Tamari which has no wheat. One packet of soy sauce is more than enough wheat and does not put you in the super sensitive class. Even a crumb of wheat from a toaster would be enough to set you off.

A month isn't very long in the scheme of healing from gluten damage. Even after all the antibodies have left your system, if you are celiac you still have a lot of healing to do. Depending on the severity of the damage it can take six months to years. And yes, anxiety does tend to follow gluten around and it will go away - be patient.

Ask any questions that you need answered - there is always someone here to help. :)
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"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

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Caffeine free 1973
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Diagnosed psoriatic arthritis 2004
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Citric acid free June 2009
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Legume free March 2010
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#3 Celiac Ninja

 
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Posted 04 October 2012 - 02:12 PM

Okay, so I am new to all of this, and I also do not have insurance, so please don't judge the fact that I am self diagnosed... I am 21 year old female, and since I was 12 I have had this ridiculous rash that I could never get rid of and I could never find anything that looked like it until a nutritionist at my work and I started talking. She noticed that I am always tired and I told her I have a tendency to feel moody and headaches and gassiness yeast problems and a number of other things. Well she told me I should look more into it and once I started looking and reading many many other peoples stories and doing a little experimenting of my own I feel as though this is the only thing that makes sense and adds up. Well I have been eating gluten free for almost a month maybe just a tad less. I do feel better in some departments, but my rash is still there and just as painful... I do think I have been glutened once during this time a small packet of soy sauce... ugg... and I'm scared that if I am reacting to SOY SAUCE ONE PACKET!!! then how sensitive am I? I also wondering if I should be worried that this isn't my issue but I don't see what else it could be... Any advice or anything would be great.

ps. I have anxiety if you can't tell lol I have heard that goes hand and hand with gluten.


There are gluten free vitamins that a new found gluten intolerant person/celiac person should be on from the get go and consistantly. The body will be going through a ton of healing while on a gluten free diet and to aid that healing the gluten free vitamins will help. Never eliminate iodine from your diet, you will die, literally the thyroid needs iodine to function, a proper does should be in the gluten free vitmanins.

Drink a ton of water, until you pee clear, daily. This will help your body flush the toxins and dead cells, evern the white blood cells that have attacked gluten recently will show up in the urine, you want the old out and allow fresh water in for new healthy cells to replenish. About a gallon a day is currently what I drink but I am also nursing, so a gallon is what I'm use to and currently needing for breast milk. A gallon may sound huge for most people, and shouldn't be done suddenly. Slowly working up to a gallon is good, especially during and after a gluten episode.

Soy sauce is a killer, for me too, it is just too consentrated (full of soy and wheat :P) There is gluten free soy sauce, you could find it through google (I don't think I'm allowed to post web addresses in forums).

That's the best advice I can give you to start out, Vitamins & Water. No glutened soy sauce ;). I think San-J is the gluten free soy sauce brand.

I've known I'm a celiac and fought for a gluten free diet for about 6 years now. I'm still researching ;)Had two celiac panels doen and tested positive on both for celiac. (Igg and Iga immunoglobulin count). If you find a doc (and the money) to get a celiac panel you'll have to have some amount of gluten in your system (eat gluten or cross contamination) in order for the test to see the white blood cell count rise to an autoimmune response. I could give you tons of info but it's probably better for you to research and explore.


Take care
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#4 shadowicewolf

 
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Posted 04 October 2012 - 02:20 PM

Soy sauce generally isn't gluten free dear. All of us would probably react to it lol.
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#5 rosetapper23

 
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Posted 04 October 2012 - 02:49 PM

Yes, it may very well be that you'll need to eliminate iodine from your diet for a while. Sometimes, the iodine plays an even greater part than the gluten in how it keeps the rash going.

Unfortunately, if it IS DH and doesn't clear up with the elimination of iodine, you may be suffering from DH that has become infected with staph. This can only be treated with antibiotics, as you know.

Recently, I suffered from a terrible case of DH (from an inadvertent glutening that occurred last February). No matter what I did, the DH would not resolve. Finally, I noticed that I was getting sores inside my nose and sties on my eyelids. Then I knew that what I actually had was a staph infection of the nose and eyelids...and that it had spread to the open blisters of my DH rash. A course of Erythromycin cleared up the rash in five days. Now I only have to contend with the scars.
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#6 MitziG

 
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Posted 04 October 2012 - 06:44 PM

If your rash is Dermatitis Herpetiformis, then you are celiac and need to avoid even trace amounts of gluten. This means you have to be careful that nothing you eat comes in contact with gluten. If you live with others who eat gluten, then you need your own toaster, cookware, food storage containers, cutting board, etc. You need to be certain no one is touching your items with gluteny hands either. Your toiletries also need to be gluten free. Regular small exposure to gluten is likely what is keeping your rash fromm healing up entirely. No need to apologize for self-diagnosing. Many here have done the same after doctors failed to find out the cause of their suffering. You are ahead of the game!
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#7 Pegleg84

 
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Posted 05 October 2012 - 09:08 AM

Welcome Cole! as a fellow self-diagnosed Celiac, trust me, no judgement here. The gold standard for us is that you get better without gluten.

It's going to take a while before you really get better, at least 6 months but probably closer to a year before you can say, hey! I feel good! I went through a lot of anxiety before going gluten-free, and it's still one of my least pleasant reactions if I get glutened. I don't have DH, thank god, but it sounds like you do, and it does take a long time to heal. If it keeps getting worse on a gluten-free diet, then you might need to have it checked out.

As others have said, gluten-free means NO GLUTEN WHATSOEVER! That includes getting a new, separate toaster, new pots and pans, cutting board, etc. Anything that you have previously been using for gluteny stuff has to go. If you live with others, then you have to be clear that you need your own stuff in the kitchen, and they'd better keep their gluteny debris far away from you. When you're shopping, read all the labels. Even if it says gluten-free it might be processed in the same facility as gluten, so you shouldn't be having it (after you've healed, you'll be able to tell what your actual sensitivity level is. Some of us can handle the risk of cc, some of us can't). If you're eating out, ask a million questions and if you're not sure, don't eat it.

There are several brands now making gluten-free soy sauce and tamari. Check your local health-food store, or even some supermarkets. There's nice thick gluten-free tamari, and good ol Braggs Liquid Seasoning. Just be careful, some of us develop an intolerance to soy after a while (like me. aargh! I now use fake soy sauce made from coconut).

Sounds like you're on the right track though, so keep it up and I'm sure you'll be doing better soon.

Happy Healing!
Peg
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~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


#8 SWofKY

 
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Posted 06 October 2012 - 09:19 PM

I really empathize with you, my dear! I'm fairly new to this too, just 5 weeks for me. At first it was really difficult to totally avoid gluten, but I'm learning more every day. You'll find it easier as you go along. Hang in there and know there are folks out here thinking of you and wishing you well.
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#9 LauraB0927

 
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Posted 07 October 2012 - 07:20 AM

I agree with the above comments - getting sick off of a packet of soy sauce doesn't mean you're sensitive, its filled with gluten! Any one of us would have dropped to the floor and been laid up for about a week or so! I ate gummy bears (labeled gluten free) and got extremely sick - when I looked closer at the package it said that they were made in a facility that also produces wheat - I'll never make that mistake again. Keep researching about how to read labels and definitely read the newbie thread - you'll find a lot of information helpful on there. Best wishes!
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Diagnosed Celiac in May 2012 by TTG level and endoscopy
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