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So Overwhelmed! Where Do I Start?

kbjoseph

By kbjoseph
in Coping with Celiac Disease

Recommended Posts

kbjoseph Newbie
kbjoseph
Posted

Hi! I'm new to this forum and very new to being Gluten-free! I haven't been diagnosed yet with celiac or a gluten allergy, but I've been dealing with major symptoms and negative doctor's tests for years. I've been tested for lupus, lymes, cushings, B12 deficiency, etc... I found out that a friend of mine with similar problems/symptoms and negative test results said a gluten-free diet has helped her a ton... so here I am!

It's been about 1 month trying to live gluten-free and I can already tell a difference in my symptoms. Actually, I'm still learning what does and doesn't have gluten in it, and I can tell when I have gluten... the symptoms I didn't even know were related to my diet always come back. So I guess you can say I've been self-diagnosed. However, I'm getting very overwhelemed and comfused. I don't know where to start or how to educate myself (other than finding this forum by googling "is there gluten in ____(fill in the blank)" :)

I guess what I'm asking is where should I start... I don't have time to google everything I need to know, and plus there's so much confusing information on the internet these days. Can anyone recommend a book or something that helped you get on track? I'd really appreciate it!

Thanks!!!

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RiceGuy Collaborator
RiceGuy
Posted

Here are some resources for you:

Safe and unsafe ingredients:

https://www.celiac.com/celiac-disease/safe-gluten-free-food-list-safe-ingredients-r181/

Gluten-Free recipes:

https://www.celiac.com/categories/Gluten%252dFree-Recipes/

Welcome! You've come to the right place for answers.

cassP Contributor
cassP
Posted

i totally want to get this book:

Open Original Shared Link

i was tested for Lupus for a couple of years when i was a teen. and Sjorgens.

i really wish these doctors would open their mind a little bit more- i mean if someone's got a few tests or symptoms that suggest an autoimmune disease-> and you test for 2 of them over and over- and it's negative- search for the other autoimmune diseases!!!!! i just dont get it- our docs are supposed to be the experts- and they just shrug their shoulders and say "i dont know" ... here's some Prednisone, or Prilosic, or antibiotics :angry::angry:

OY VEY. and my super great doc who did the Heildeberg test on me and ENLIGHTENED me on my Hypochlorhydria... why didnt he think to suspect that i also might have H.Pylori or SIBO...

OMG... i should be a freaking doctor

sorry, didnt mean to RANT on your thread.

i totally believe you have a gluten problem. Celiac or not, gluten has been linked to so many autoimmune diseases, and digestive diseases. good luck with all the understanding- there's lots to learn on this forum :)

i-geek Rookie
i-geek
Posted

To make it easy on yourself while you're learning, stick to basic, whole foods as much as possible and cook for yourself so you know exactly what goes in your food. Fresh meats, veggies and fruits, grains like rice and quinoa, pure herbs and spices (seasoning blends are risky and often contain wheat)- McCormick is a good brand, pure oils and vinegars, eggs, minimally processed dairy (if you can tolerate it- I couldn't for a few months). If you need a treat, stick with the ones that are specifically labeled "gluten-free" so you don't have to worry.

It gets easier, I promise. I've been at this 8 months and it gets better all the time.

SGWhiskers Collaborator
SGWhiskers
Posted

I'm all for a self diagnosis, but if you think you want to have a formal diagnosis, you need to keep eating gluten. You said you were blood work was negative for a bunch of other tests, but it wasn't clear to me if you had ever been tested for celiac via blood tests. If you want that done, you need to be eating gluten regularly for 6 weeks. With that said, if you feel better off gluten, then skip it. You don't necessarily need a doctor's diagnosis.

This site is the best place you could have found. I found that remembering Kraft, General Mills, and Unilever brands (identified with a capital U on the back of the product) all will clearly list the source of gluten containing ingredients helped me with my grocery shopping. That means if you don't see wheat, rye, barley, or oats on the ingredients list, a product from them is safe. Not all of their products are gluten free, but you can at least read the labels and tell the difference without having to call the manufacturer.

Keep it up and keep checking this forum. There is SO much valuable information here to be shared. I could not have gotten better without these folks.

sgw

kbjoseph Newbie
kbjoseph
Posted
  • Author

Wow! Thanks everyone. I'm feeling more motivated now and I'm going straight to (Company Name Removed - They Spammed This Forum and are Banned) to buy some books. It's a relief to learn that I'm not the only one who has had horrible experiences with Doctors. It's devastating to keep hearing that they can't find anything wrong with me...but still knowing deep down that something is wrong and I'm way to young to be living like this (mid 20's). It's caused me to slip into a slight depression and It's finally catching up with me. I haven't taken a gluten-free diet very seriously until now. I think due to the negative experiences with Doctor's lack of a diagnosis, I was kinda skeptical that I found the answer on my own... but now after doing just a little bit of research I'm convinced that going gluten-free is my answer!

Now I just have to stay positive and educate myself! But everyday has been a battle. I was craving greasy breaded food the other day and my sweet Husband went out and bought a little frier and made me chicken fingers using gluten-free all purpose flour and crushed up gluten-free corn flakes... but I learned the hard way that there was gluten in my BBQ sauce that I dipped my wonderful chicken fingers in! UGH! It's gonna be a roller coaster ride isn't it!

i-geek Rookie
i-geek
Posted

Time to buy new BBQ sauce. :)

My mom bought this so that she could serve us BBQ chicken (she cooks mine on foil): Open Original Shared Link. I think she bought the Regular variety. Good stuff. We also like Sweet Baby's Ray's sauce- also gluten-free.

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      Hi Ya All, Dr. just. Told me I have one celiac marker. I have been taking multiple blood test for thin Dr for years. Why couldn’t he have mentioned this! Anyway my functional med practitioner

      By max it · Posted

      I'll get to it. TY
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