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So, What Do I Do Now?

MizMimi

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MizMimi Newbie
MizMimi
Posted

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.

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mamaw Community Regular
mamaw
Posted

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
Victoria6102
Posted

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
Bubba's Mom
Posted

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
mamaw
Posted

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
MitziG
Posted

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
jess-gf
Posted

I PMed you :)

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mamaupupup Contributor
mamaupupup
Posted

:) 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!

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  • Posts

    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @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
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      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
      My only proof

      By knitty kitty · Posted

      @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
      My only proof

      By Jmartes71 · Posted

      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 
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