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LISMom

New To All This & Confused!

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Hi All,

I am new to this board and am so confused.

Long story short: I've had IBS since the early 80's. In the mid-90's I had a sudden onset of autoimmune symptoms complete with positive ANA & rheumatoid factor. Many rheumatologist, endocrinologist and GP visits with speculation of fibromyalgia, chronic fatigue, lupus, MS, etc. over a 7 year period. Nothing ever got solved (although there was some consensus around a possible adrenal insufficiency.) And I got sick of Dr's, went the acupuncture route (which did help) and got on with life. But pretty much always tired & achy with IBS flare ups.

Fast forward to a few months ago: I started Weight Watchers & my pasta loving daughter went to college. About a month ago I had my first pasta in about 4 months and before I could even finish eating I was doubled over. A night of intestinal fun followed by waking the next morning as sore and exhausted as I've ever been. Dr's office suspected a gluten/celiac issue & did bloodwork. They told me not to avoid gluten yet so this weekend I had pancakes and pizza (which I've been avoiding because of Weight Watchers) and spent Sunday with IBS symptoms, joint pain and fatigue.

Just heard back about the bloodwork: negative. But when I pushed back and mentioned the reaction to the pizza/pancakes they said they bet that I'd feel much better when I went gluten free. So...

1) do I need to follow up with the doctors? Does it even matter if I'm going to try gluten free?

2) what is the best way to begin a gluten free diet? I've bought a book and read some stuff on the web but it's so overwhelming!

3) how quickly do people start to feel better if it is truly a gluten issue?

Thanks so much in advance for any insights :)

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To encourage you, my guess is that you will start feeling better right away since your symptoms are so immediate after eating. You need some of the advanced member input here for sure but.. from a newbie (9mths gluten free) I didn't actually find it that bad.. even though it did seem overwhelming. I started eating from 'the perimeter of the store'. Veggies, fruit, meat (not sausage or cold cuts), eggs, and dairy (although I know some people have food reactions to more than just gluten). The simpler, the better to begin with. The hidden gluten is the trickiest. The additives in processed foods can hide in different names.

http://www.celiac.com/articles/182/1/Unsafe-Gluten-Free-Food-List-Unsafe-Ingredients/Page1.html or

http://www.dietarysupport.com/glutenaliases.html

First I started just trying to make soups and stews with rice flour and potato flour and that worked really well. After a while I started buying some different flours and started baking too. It is SO WORTH IT!!!

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I'm VERY new to gluten-free, but I've discovered many things that I already loved and was buying that were gluten free. For instance Smart Balance for butter, Soy Creamer for my coffee, etc. I just take a jar/can/box whatever that I would like to eat and type it's name into Google with "gluten free" after it and usually easily find the answer to whether it is or isn't.

Some of the more seasoned people here will most likely advise you to drop dairy at first too (and soy) until your body recovers but once you're back, you'll find that most cheeses (if not already shredded) are gluten-free, there are yummy gluten-free cereals (such as Cinnamon Rice Chex and Honey Rice Chex) and the gluten-free bread is actually quite good. :)

Fresh fruits and veggies (be careful of salad dressings and seasonings though), meats you cook yourself and there is substitute pasta and just about anything you can think of.

Good luck! I hope it works for you and you feel better asap.

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I'm only 4 months into gluten free, but spent the last 7 years of my life unable to walk due to "fibromyalgia", migraine headaches, depression, anxiety, and many more things that Rheumatologists, Dermatologists, and Internists could not diagnose.

I don't think you have to follow up with Dr.'s at this point. You have done what you can to try to find the answer and so have they. You can try gluten free for several months and see how you do and if any medical problems arise in that time, sure you can go to the Dr. to check them out.

Celiac doesn't always show up on tests, and Gluten Intolerance is just as severe in terms of symptoms.

It sounds like you will very quickly have positive results from going gluten free.

Just read, read, read, and ask questions here.

I made a lot of mistakes, but found the answers by searching here.

This is my lifeline.

I'm excited for you! If this is your problem, you will be getting lots of nice surprises as you heal. And I mean good ones! I'm still finding symptoms going away that I never knew were related to gluten.

It's really been a miracle for me and the best part is getting my brain back. I can think and am not foggy and spacy like I was. Unless of course I get gluten accidentally. THat will be your challenge now. Finding all the ways gluten can enter accidentally. We call it cross contamination and people tend to get MORE sensitive to gluten once it is out of their system...like you and the pasta after 4 months. That is going to happen and instead of thinking "I got the flu" or "My fibromyalgia is back" now I think of "Hmm how did I get gluten this time?"

It is a new adventure...but well worth it. Welcome! I hope you heal fast!

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Thanks so much for all the positive feedback! I admit to getting very angry this afternoon after hearing from the dr's as it brought back all that wasted time and money I spent a few years ago.

I've been good today and making sure that everything I've put in my mouth has been vetted. Not terribly hard as I've been trying to be "good" for Weight Watchers anyway.

I think I'll be spending alot of time here! For those of you who consider yourselves "newbies" how long did it take before you felt like you had a reasonable idea of what you were doing with your food?

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I think I'll be spending alot of time here! For those of you who consider yourselves "newbies" how long did it take before you felt like you had a reasonable idea of what you were doing with your food?

I still don't always know. :) I've surrounded myself with snacks and staples that I'm sure of and then everything else, I have to look up as I go. This board is SO Full of VALUABLE information, check out the recipes section, I find LOTS of help in there. My snacks and staples are things like gluten-free bread, Chunks of cheese (not shredded), eggs, gluten-free cookies, crackers and pretzels and I found some gluten-free peanut butter yesterday!

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One thing I am never without when I am out and about is Larabars. They are a wonderful portable snack bar with no HFCS and no soy and tide you over until you can get a real meal.

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Just heard back about the bloodwork: negative.

Lismom,- It sounds like you have autoimmune problems with adrenal insufficiency and RA. (about.com under Mary Shomon has a good forum that includes adrenal problems) Did you get the full Celiac Blood panel test? I have notice some doctors from some of the comments are not giving the full panel. Autoimmune problems persons seem to have a higher chance of having celiac problems. The doctor you saw was he well qualified working with Celiac disease? It seems to make a difference.

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It took a few weeks to be sure of what I was doing with my food. Just the anxiety of it all, and not wanting to make a mistake. Made a few anyway. As for snacks, I'm never without nuts in my purse, just in case.

That said, I last got glutened handing out food to little ones in the family at a gathering.

Thought I washed my hands, but got it somehow anyway.

You will make mistakes, it will take time, you will heal and feel better.

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