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Just Curious

majones

By majones
in Coping with Celiac Disease

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majones Newbie
majones
Posted

So here's the deal.

I've been gluten-free for about a month now. I haven't been tested but see no point in being tested because if this works, it will save my family some much needed money. Within days of starting, I noticed an immediate change. I felt happier (depression was a huge issue) and after a few weeks, I noticed that things just seemed....clearer. The intestinal problems I was experiencing went away (after I realized lactose intolerance was also an issue) and honestly, life has never been better since I know the rest of the issues will so disappear for good.

Problem?

Spring break I went on a trip with my family. My safe quarters for making and eating food disappeared and I was forced to eat out

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ravenwoodglass Mentor
ravenwoodglass
Posted

Are you baking with wheat products for others? Unfortunately that is not a real good idea for us. The flour can remain airborne for up to 24 hours and we can breathe it in or it can drop onto our food.

It does take a bit of time for the antibody reaction to clear up so it can take awhile to get over a glutening.

We have a recipe section on the board that you may find quite helpful so check it out.

It you go to celiac.com main page you will find a link to safe and unsafe foods. If you live near a Wegmans they label all gluten free items with a circle G and they are a great place for us to shop. Kraft and Unilever brands will label clearly so if you don't see a gluten ingredient the item is safe.

Welcome to the board and ask any questions you need to. Glad to hear the diet is helping you so much. It is a good idea for your other family members to get tested also as celiac is strongly genetic.

dhd2000 Newbie
dhd2000
Posted

The good news is that you know you can feel better! The bad news is that for most people, it's not worth it to take chances with cross-contamination or eating out at restaurants that don't offer gluten-free choices. It just takes some time to see what works for you, and you might need to adjust your typical meal plans. I eat a lot of rice, eithe with stir-fry (wheat-free tamari intead of soy sauce) or with meat, beans, corn, salsa and black olives. That's my easy meal when I'm out of ideas. I brown some ground turkey or chicken, add some mexican spices and then layer on the other toppings. I make enough to have leftovers for lunch. Kinnekinick (Im sure I spelled that wrong) pizza crusts are good. Just add meat/veggies and tomato sauce and bake. Always travel with things you know are safe for you, envirokids cereal bars, schar crackers and peanut butter, fruit... that way you're not tempted to take chances. I like this site for recipes: Open Original Shared Link And I like the 1-2-3 gluten free mixes for muffins and biscuits. Those are good to make ahead and count on. Good luck to you!

mamaw Community Regular
mamaw
Posted

I think the best thing one can do is before a trip to anywhere is to do research, research research! This way you will be comfortable with where you will dine at ..It makes life so much earier when we know what is ahead of our planned day.This way no getting sick (hopefully) no anxiety about dining & you can enjoy your trip.

As for recipes there are some of the best right here under our recipe section. You could spend days going through that section. If you have favorites you are looking for just do a gluten-free google search & you will find more sites than you ever wanted to look at... I find gluten-free has drawn me me to recipes & more receipes....I'd have to live two thousand years to try them all!!!!

Gluten free registry,celiac travel & many more is where to find what restaurants has gluten-free & to check out the menus...

Also when you are someplace where your not sure about ask them to prepare your food(stuff you know is gluten-free ) on foil with no seasoning & to change their gloves..Youstill may get ill but youtried to take somesteps to avoid a major illness...ie; baked potato, plain chicken no coatings or marinades or seasoning...Steamed veggies.

hth

mamaw

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    • 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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