Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

So Overwhelmed! Where Do I Start?


kbjoseph

Recommended Posts

kbjoseph Newbie

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!!!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

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

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

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

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

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

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents commented on Scott Adams's article in Kids and Celiac Disease
      2

      New Study Reveals Age and Racial Gaps in Pediatric Celiac Testing

    2. - Russ H replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Positive biopsy

    3. - Scott Adams replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Positive biopsy

    4. - Scott Adams commented on Scott Adams's article in Latest Research
      3

      New "Glowing Bacteria" Pill Could Transform Gut Disease Detection (+Video)

    5. - trents replied to mamaof7's topic in Parents, Friends and Loved Ones of Celiacs
      7

      Help understand results

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,001
    • Most Online (within 30 mins)
      7,748

    bonniebeebe143
    Newest Member
    bonniebeebe143
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Russ H
      What you describe is seronegative villous atrophy (negative antibody tests but positive biopsy). It is uncommon in coeliac disease, and there are other causes, but the most common cause is coeliac disease. I would pursue this with your healthcare provider if possible. Based on clinical history, test results and possible genetic testing for susceptibility to coeliac disease it should be possible to give a diagnosis. There is a bit more here: Seronegative coeliac disease
    • Scott Adams
      If you are still eating gluten you could get a celiac disease blood panel done, but I agree with @trents and the gold standard for diagnosing celiac disease would be your endoscopy results. Is it possible they did do a celiac disease panel before your biopsy? This would be the normal chain of events. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • trents
      Actually, it would be more correct to say that the genetic potential to develop celiac disease is passed down from parents to children. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% of the general population actually do. But it is also true that the offspring of those who do have active celiac disease are at a considerably higher risk of developing active celiac disease than those of parents who have the genes but don't develop the disease. Some recent, larger studies put the risk at near 50% for the first degree relatives of those who have active celiac disease.
    • Jordan Carlson
      Hello everyone! Been a while since I posted. The past few moths have been the best by for recovery for myself. I have been the least bloated I have ever been, my constant throat clearing is almost gone, I have stopped almost all medication I was prevously taking (was taking vyvanse for adhd, pristiq for anxiety,fomotadine/blexten for histamine blockers and singulair). Only thing I take now is Tecta. I also no longer get any rashes after eating. Things are going very well. Most success came actually once I upped my B12 daily dose to 5,000 mcg. I do have one thing I am un able to figure out and want to see if anyone else has this issue or has experience working around it. Ever since I was born I have always had a issue getting fruits and veggies down. No matter how hard I tried, it would always result in gagging or throwing up. Always just thought I was a picky eater. Now that my stomach and system has healed enough that I can feel when something is off almost istantly, I notice that after eating most fruits (sometimes I am ok with bananas) and veggies, my stomach instantly starts burning and my heart starts to pound and I get really anxious as if my body doesnt know what to do with what just enetered it. So I am thinking now that this is what probably was going on when I was born and my body started rejecting it before which caused this weird sensory issue with it causing the gagging. Hoping someone has some exprience with this as well because I would love to be able to enjoy a nice fruit smoothie once in a while haha. Thanks everyone!
    • wellthatsfun
      i know i've been rather cynical and sad about being fully diagnosed in june 2025, but my boyfriend has been consistently showing me the wonderful world that is gluten free cooking and baking. in the past couple of days he's made me a gluten free rice paper-wrapped spanakopita "pastry", plus a wonderful mac and cheese bechamel-ish sauce with gluten free pasta (san remo brand if you're in australia/if you can get your hands on it wherever you are).  those meals are notably gluten free, but mainly he's been making me easy gluten free meals - chili mince with white rice and sour cream, chicken soup with homemade stock from the chicken remains, and roast chickens with rice flour gravy and roast veggies. i'm a bit too thankful and grateful lol. how lucky could i possibly be? and, of course, for those who don't have someone to cook for them, it's quite easy to learn to cook for yourself. i've been making a lot of meals for us too. honestly, cooking is pretty darn fun! knowing basic knife skills and sanitary practices are all you really need. experimenting with spices will help you get on track to creating some really flavourful and yummy dishes. coeliac is a pain, but you can use it to your advantage. healthier eating and having fun in the kitchen are major upsides. much luck to all of you! let's be healthy!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.