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New Celiac 1; Non gluten-free Savvy Dietician 0

Jen Z

By Jen Z
in Coping with Celiac Disease

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Jen Z Rookie
Jen Z
Posted

Would have been nice if my doctor sent me to a dietician that had a background in celiac disease. Not sure how this happened but I think that on day 4 as a celiac, I may be more informed as to appropriate food options than he was as a clinician with years of experience in the dietary field. Cross contamination- no worries that's only for the super sensitive... and other such interesting statements. Thank goodness for the internet ;). I went to Trader Joe's this morning and bought a whole bag full of gluten-free foods. woohoo. Lunch sucked and is now in the trash.

Hoping dinner goes better :)

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YoloGx Rookie
YoloGx
Posted

Would have been nice if my doctor sent me to a dietician that had a background in celiac disease. Not sure how this happened but I think that on day 4 as a celiac, I may be more informed as to appropriate food options than he was as a clinician with years of experience in the dietary field. Cross contamination- no worries that's only for the super sensitive... and other such interesting statements. Thank goodness for the internet ;). I went to Trader Joe's this morning and bought a whole bag full of gluten-free foods. woohoo. Lunch sucked and is now in the trash.

Hoping dinner goes better :)

Am glad to hear you are beginning your journey on a positive, humorous note. It does help to keep up that amusement!

Just wanted to note that I would be careful of pre-made food from TJ's especially, though elsewhere too. Both my bf and I had to learn the hard way that a lot of TJ's supposedly gluten-free food is not actually completely gluten-free due to cross contamination from stray gluten. The gluten-free yeasted ":Food for LIfe" rice bread made elsewhere is OK but the rest?? Not so. Esp. avoid their waffles. Shared equipment with wheat products does not make it in my book. I would also be careful of Glutino products. For some of us their allowable parts per million of gluten just does not cut it. We both got migraines from the stuff--not for as long as some things, but very unpleasant nevertheless...

Its far better overall to cook things from scratch, whether your supplies are bought at TJ's, Whole Foods or Food Maxx....

It is a journey, complete with its many ups and downs. You have come to a good place to share, vent and learn. Welcome!

Bea

Lisa Mentor
Lisa
Posted

Yes, it's best in the beginning to eat naturally. Meat, fish, potatoes, rice, fresh veggies and fruit. It will help you heal better.

In order to appreciate gluten free fast foods, you need to forget what the real ones taste like. :P There is some good food out there, fear not!

It's an adjustment, but you'll get through it. Read through the "What are you cooking tonight" thread...it might give you some ideas. We are not deprived! :D

luvs2eat Collaborator
luvs2eat
Posted

By the time I got in touch w/ the hospital dietician (about a week after diagnosis) she told me I already knew way more than she did about celiac. That was 10 years ago. One can only hope they're more informed about celiac now!!

I've had some bad experiences w/ Trader Joe's gluten-free stuff... be careful.

Jen Z Rookie
Jen Z
Posted
  • Author

Thanks everyone for the advice on TJ foods. I am finding that just about anything in the prepared meals doesn't work for me. I was using them as well as other vegetarian meals over the summer before diagnosis and not able to eat most of them due to the high spice content. I can not have anything with chili pepper at all or my reflux flares horribly. Chili pepper is in almost as many foods as gluten it seems some days ;)

It really comes down to having to cook for myself. To quote my dear friend Eeyore- 'oh bother.'

Today I will cook with my beautiful new gluten-free pasta made with rice flour. If that doesn't cut it, I'll move on to the quinoa flour pasta. I have plan B ready :)

pricklypear1971 Community Regular
pricklypear1971
Posted

Yes, be careful at TJ's. So far the only luck I've had are the creme br

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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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