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 replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    2. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,407
    • Most Online (within 30 mins)
      7,748

    H2HPizzaWagon
    Newest Member
    H2HPizzaWagon
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
×
×
  • 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.