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New To This And Feeling Desperate

KaleidoscopeDream

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KaleidoscopeDream Newbie
KaleidoscopeDream
Posted

Hi everyone. I've only been gluten-free since Friday, when I decided that enough is enough. Celiac runs in my family and recently my health has declined rapidly. I have terrible GI problems, extreme joint and bone pain, THE RASH (oh god, help me!), and a myriad of other health problems that, over the past couple of months, have rendered me almost an invalid. I have not gotten a diagnosis yet, as I am uninsured, but I have gone gluten-free at my Mother's urging (she had similar symptoms to mine and they are clearing up now that she's gluten-free). I am only 28. I'm too young to feel like I can't function. So that's why I've been here, reading all your posts and trying to make sense of this. It has made me feel less alone and helpless.

I'm posting now because, while going gluten-free has already improved my stomach problems noticeably, the pains in my legs have gotten worse. I know I'm only a few days into this, and I haven't really had the energy or ability to completely de-gluten my home (though I have made great progress thanks to my incredibly supportive boyfriend, who has gone to great lengths to help me through all this), but now I'm just overwhelmed. I've been sitting here on the couch with my laptop, crying through the pain and trying not to scratch all my skin off.

I feel really lost and overwhelmed. Where do I begin de-glutening my home? How do I explain this to family and friends? When will my energy come back? How long until the pain stops or the rash clears up? What else can I do to make this easier?

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Adalaide Mentor
Adalaide
Posted

Welcome! How can you make it easier? Breathe, take it easy and go to your nearest Walgreens and buy a backscratcher. (I'm only half kidding, I have 2.... who needs skin? :lol: ) Head over to the DH section of the forum to get all the super secret info about iodine and the rash. If I'm totally honest, I'd rather have rampant, explosive "D" that keeps me running to the bathroom every 15 minutes than itch like I have a bazillion bug bites and chicken pox and am covered in fire ants and itching powder. But I suppose we all have our preferences. After my rash showed up, I went to the doctor for some steroids and immediately went low iodine. It only took a few days for the itching to begin to subside and become bearable. I'm not sure how you find things at your doctor's office, but I find that I can pretty much get what I want when I go in. If I've decided I need steroids for a rash I'll get them.

I was sick pretty much my whole life, so I can't compare symptoms in that way, but I can say I felt WAY worse before I felt better. My GI symptoms were improving right away, with my C and D and gas. On the other hand I slept for weeks I think, or at least it felt like I did. Check out the newbie post at the top of this coping thread and you'll see lots of great tips on how to degluten your home.

Mostly if you have any specific questions we're all here. And we were all overwhelmed at the beginning so don't fret. It is a lot to deal with, just take baby steps, don't sweat the mistakes and don't be afraid to cry, scream or generally feel however you need to until you get adjusted.

KaleidoscopeDream Newbie
KaleidoscopeDream
Posted
  • Author

Thank you, Adalaide. :) I'm so glad I found this place, it has been a huge source of comfort and information.

The improvement on the C and D front is how I know I'm on the right track, really, so that's a relief. I was not aware of the iodine issue with DH. I'm going to go to the DH section and read up on it right now.

shadowicewolf Proficient
shadowicewolf
Posted

It does get better :) Hang in there!

Adalaide Mentor
Adalaide
Posted

Low iodine means... *gasp* giving up dairy. At least most of the time. While milk has an inherent amount of iodine, I would not do well without my milk. If you live in Utah I can direct you to a dairy that sells raw milk and that does not contaminate the milk with betadine through the milking process. Most go with a dairy substitute since it can be difficult to digest in the early healing stages anyway. Again, I wouldn't do well without milk. I tried every sub I could and the only thing I liked lied about being gluten free. (Don't buy Rice Dream, it is a lie.)

And yes, this place is great. It kept me from going actually crazy instead of my normal crazy.

1desperateladysaved Proficient
1desperateladysaved
Posted

I hope you will be feeling better soon. Hang on, the withdrawl can make one feel depressed. I always think that when I have any reaction at all (good or bad) it is a good sign that something is happening. Also, when I am feeling my worse, it is often right before the highest high to date. I am about 6 months grain free and feeling very well today.

To speed healing I take supplements, rotate foods I am intolerant to, and read the forum for ideas. I trust you have found many ideas of how to clean the gluten out of your house.

Friends and family will take time to adjust to this. You will too. I am still adjusting and my body is doing some profound healing. I had 30 years of unrealized celiac.

Get well, soon,

Diana

GFinDC Veteran
GFinDC
Posted

Hi Kristen,

Getting started can be confusing and take a lot of effort. But You can get there by taking one day at a time. Since you have an itchy rash it is possible you have dermatitis herpetiformis. DH is a skin rash some people with celiac get. They diagnose DH by taking a skin sample (biopsy) from the clear skin right next to a lesion and test it for IgA gliaden antibodies. People with DH often report rash flares from small amounts of gluten and they are worse when eating iodine. There is a whole section of the forum for DH with lots more info. All that to say you might want to limit foods containing iodine and iodized salt. If it is DH, then you have celiac. Only celiacs get DH. So that is actually kind of a good test. If your rash goes away after a while on a gluten-free and low iodine diet, and comes back with iodine and gluten, then it is most likely DH. And DH is definitely celiac. Isn't it nice to have a self-testing body? :blink: Well, maybe not. :( But it is nice to know what is going on. :)

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

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