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, What Do I Do Now?


MizMimi

Recommended Posts

MizMimi Newbie

I found out just this am, that I have Celiac disease. My Dr directed me to this site for support and info in addition to his huge packet of do's and don'ts, so I thought I would introduce myself. I'm not even sure where to start in regards to shopping, and I'm afraid to even eat anything! Anyway, I'm Mallissa, 35 y/o from Ohio and I have been married for 10 years in May. I have always had one health issue or another, but I never attributed it to something like this. I am a bit overweight, have pcos and fertility issues, as well as other things. Oh look, I'm rambling now. lol I guess I'm just at a loss as to where I need to start this journey, and any advice or encouragement would be great. Thanks.


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



Celiac.com Sponsor (A8-M):



mamaw Community Regular

Hello & Welcome

First off I must say you found a very wise doctor directing you to this site...There is a wealth of info here.. It does take time to go through it all...& process...

Not sure where in Ohio you reside but there are several nice places to shop. Jungle Jim's.Cinncinati, RaisinRack in Columbus & Canton. Whole Foods, & Trader Joe's , mustard Seed, Heinen's plus many more.....

I suggest taking steps or phases in learning the gluten-free lifestyle.Start out with natural gluten-free foods you know ie: naked meats, veggies, fruits, fish.You can add your own seasoning to flavor.. McCormick is one that clearly labeds...Do not eat anything with marinades, gravies, steak dust,coatings....once you learn what is safe then you will be able to understand the ingredient list & make safe choices...

Buy a couple of mixes to hold you over until you feel good about baking yourself& also so you don't feel food deprived. Boxed cookies , pretzels &things like that..Many chips are gluten-free such as Lays, doritos, corn chips.. BUt always read the labelas ingredients change...Stay away from add-ins such Breyers IceCream is gluten-free but when cookies are added init becomes not safe...

There are several great support groups in parts of Ohio. Check out the CSA& GIG sites for locations..

Another decision you will need to decide on is if you will have a totally gluten-free household or a shared kitchen...a family decision!

If a shared kitchen is the way you will go then you need to clean out & make a separate space for your gluten-free food...Check your cooking pots & pans, cutting board, plastic utensils, teflon coated things, toaster, hand mixer, bread maker.any of these items that are scratched or damaged in any way needs to be replaced & new ones keep apart for your gluten-free cooking..I use color coded for my gluten-free utensils & keep in a separate drawer....

If you enjoy baking & have the time homemade is less pricey& the way to go. Some do not have the luxury of time or care to become a gluten-free susie homemaker...Here is a short list of some of the better flour blends.....

BetterBatter(site has loads of recipes

Jules

meister's

Domata Living Flour

Tom Sawyer

Authenic flour (super fine white & or brown rice flour)( regular ground makes for a more gritty end product..

There is also hidden gluten in many products.ie: beer, soy sauce, malt

Depending on how sensitive you are or will become some other areas to check is pet food,

Take your time tolearn the basics then move on to another step. By not over-whelming yourself & learn as you go you will have less chance of making mistakes & getting ill. Mishaps do happen along this road but again use those as learning curves & don't beat yoursel up..

Most important is don't cheat & get in that habit...that is why it is so important to have a good supply /variety of gluten-free foods you can eat... so you never feel deprived..

This journey can cause symptoms just as it would when you would loose a loved one.. All normal it's okay to be angry, sad, & denial but don't let it take over.. You control this disease - don't let it control you..

This is the best thing to have because it reqires no chemo, no radiation, no deadly drugs, no injections, nothing but a diet change..how lucky we are!!!!! Be positive

Let us know your questions...

blessings

MAMAW

Victoria6102 Contributor

Mamaw, Doritos are not gluten free. Don't mean to sound rude, just wanted to make it clear that they are not .:)

Bubba's Mom Enthusiast

Hello..and welcome from a fellow Buckeye! You're very fortunate to have a Dr. that sent you here. There's a wealth of information here that will help you in this journey.

Mamaw has given you "the list" of things to look out for. If you have any questions along the way be sure to ask.

Most of us are happy for our DX at first. It validates the symptoms we've had. The happy part wears off a bit as we realize all of the changes we have to make. It can be pretty depressing when you go grocery shopping if you think of the things you can't have. Instead, focus on the things you can have and shop the outer perameter of the store for fresh veggies and fruits, unprocessed meats, seafood, eggs, and dairy if you tolerate it.

Many of us find that we do better if we skip milk and dairy at first. Once you've done some healing, you can add it back in.

mamaw Community Regular

Oh you are not rude but some of the doritos are gluten-free: some are not. they all are clearly labeled on each flavor!!! Same with many potato chips ...everyone needs to become a label reader....

MitziG Enthusiast

Welcome Malissa, and mamaw is right- smart doctor sending you here! you will find everything you could possibly need to know about Celiac from this forum. More importantly, it will be accurate information! Much of what drs and nutritionists will tell you, or what you read in books or online is outdated, or just plain wrong! The people on this forum have exhausted every resource on celiac disease, and they live with it every day. They will point you in the right direction!

I came here a year ago today, when I was diagnosed and overwhelmed, just like you. A year later I feel better than I ever dreamed it was possible to feel! You will make many mistakes along the road to becoming gluten free, (some of them painful!) but don't get discouraged. It is a learning process. Eventually, it will all become second nature. This weekend I am attending my first wedding since being dx (along with both of my kids who were dx) It is out of town, require 2 nights in a hotel, so I have had to do some homework regarding where and what to eat, and as usual, we will be toting a cooler of food with us. Yes, going out and visiting friends is a bit more of a hassle than it used to be. But it isn't an end-of-the-world type hassle you will come to find out. And the rewards of waking up every day feeling WONDERFUL make it well worth the extra effort!!!

Congratulations on your diagnosis- and I mean it! Your life is about to get a whole lot better!!

jess-gf Explorer

I PMed you :)


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



Celiac.com Sponsor (A8-M):



mamaupupup Contributor

:) My twin daughters have Celiac...and I'm starting my testing for Celiac...

...and my girls are IVF/ICSI/PGS babies (there was NO way I'd have gotten pregnant without LOTS of intervention...which also contributes to the suspicion that I have Celiac).

For what it's worth, we LOVED Dr. Schoolcraft at Colorado Center for Reproductive Medicine. His statistics are excellent, he listens, and he altered his protocol to fit what we wanted/needed.

Wishing you a smooth transition to a gluten-free life!

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. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      9

      My only proof

    2. - knitty kitty replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

    3. - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Fiber Supplement

    4. - trents replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

    5. - trents replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      15

      ttg iga high (646 mg/dl) other results are normal


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,352
    • Most Online (within 30 mins)
      7,748

    Teagan
    Newest Member
    Teagan
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • NanceK
      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    • trents
      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
×
×
  • 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.