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Diagnosed A Few Months Ago


MelissaBe123

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MelissaBe123 Newbie

I've had a painful stomach my whole life. A few months ago, I decided it was time to go to the gastro and see if something was actually wrong with me. After only a few tests, they found out that I had celiac disease.

My whole life has changed.

I have lost weight. Gained energy. Gotten healthier. Changed my whole diet of course, and had to explain my diet to a lot of people.

I was just wondering if there is anything I should do to be more careful in not getting gluten in my diet. I already look at labels and research, but am I missing anything? I just want to make sure I am prepared for whatever celiac disease can throw at me.

  • 1 month later...

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captaincramp Newbie

I've had a painful stomach my whole life. A few months ago, I decided it was time to go to the gastro and see if something was actually wrong with me. After only a few tests, they found out that I had celiac disease.

My whole life has changed.

I have lost weight. Gained energy. Gotten healthier. Changed my whole diet of course, and had to explain my diet to a lot of people.

I was just wondering if there is anything I should do to be more careful in not getting gluten in my diet. I already look at labels and research, but am I missing anything? I just want to make sure I am prepared for whatever celiac disease can throw at me.

Make sure stuff isnt cross contaminated, as someone jusyt told me that Quaker Rice Cakes are often contaminated with wheat from other parts of the factory.

sb2178 Enthusiast

Do you have your own toaster, keep bakery/flours in a separate area of the kitchen? That can help too.

Kitchen equipment that has lots of texture (like colanders/holey items, wood, scratched plastic or nonstick) should not be shared because they are very difficult to clean.

If you are having problems, look at things like shampoo, make-up (you or a significant other), etc. Any contact with other people could be a problem-- are you kissing a kid's cheek after they eat a wheat-based sandwich? Sharing condiments?

If you feel okay, and your first round of bloodwork comes back clean, you must be getting it right!

GFinDC Veteran

...

I just want to make sure I am prepared for whatever celiac disease can throw at me.

Watch out for the furry flying kittens then. Oops, wrong disease! :)

A whole foods diet is a good way to go. Some people are low on some vitamins at first, so you could check with your doctor on blood tests for vitamin levels. Avoiding gluten-free baked goods to start can be helpful, at least until you get used to the diet for a few months. You also should consider otehr possible food intolerances, like dairy, soy etc. The sometime show up after being off gluten a while.

Skylark Collaborator

The more you cook fresh, whole, gluten-free foods for yourself the better. I don't have to read the labels at all when I make my own soup. ;) You eat healthier, more nutritious food, and there is less chance of gluten sneaking in. Minimize eating out, and stick to places you know are gluten-free.

If your life has turned around, it sounds like you're doing it right. B)

lukester Newbie

Nice I see you have been reaping the benefits so far. I to have experienced many of the benefits that you have over the course of one week in to this new lifestyle. Like skylark said the best way is to cook from scratch since you know what you are putting inside.

sannep77 Newbie

One piece of advice would be to not be scared to eat in restaurants! More and more people are hearing about the disease and are making adjustments in there restaurant for us people with special diets...and don't be afraid to ask. I went into TGIFridays one night and wanted to eat with my friends....they dont have a gluten free menu..but they cleaned the grill and made me a steak without seasonings and fresh broccoli without seasonings! I was so excited to get to eat with my friends. So don't let your disease hold you back...I did for the first 6 months of it...I was scared to eat any where...because I didn't trust people! Thats no way to live:) Have fun! But ask lots of questions and be careful. My friends like the special treatment our table gets now that I have to ask so many questions!lol


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  • 2 weeks later...
KevinNiemann Newbie

The ideas of cooking all whole foods are great. It's good to watch out for certain meats, mainly deli meats because they can have MSGs or modified food starch. It's also good to watch out for glutamic acid, hydrolyzed vegetable proteins, and anything with maltodextrin. I know that's a ton of stuff for you to watch out for, but you'll feel a ton better by staying away from that stuff. Hydrolyzed veggie proteins and modified food starch don't always have gluten in them, but if you don't contact the company to find out for sure, then you should skip those products.

Best of luck to you, fellow G-Freak :D

Kevin

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    • 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.
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