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Hello


SharonF

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SharonF Contributor

My name is Sharon, and I just had some bloodwork and a colonoscopy and endoscopy done last month. My doctor has about 80% certainty that I have celiac, so he suggested I go gluten free for 6 months, and then do another biopsy.

I'm finding switching over to the gluten-free diet to be challenging, in the least. It's frustrating that gluten-free foods are so much more expensive. I do appreciate that some manufacturers list gluten-free foods on their websites--although I do have some doubts about whether Cheetos are really gluten-free as they say.

Hello, and sorry if I posted this in the wrong forum.


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catfish Apprentice

I know what you mean about "challenging". It took me a while to figure it out too, and believe me I made a lot of mistakes (like spelt for instance, NOT gluten-free). I finally stopped buying processed food entirely for a while because it seemed like everything had some form of gluten in it! I quit eating out for a while too. Now I have worked a small amount of processed food back into my diet, and there are a few choice restaurants that i trust but most of my food is prepared in MY kitchen by ME. That's the only way I can be sure. And of course it takes time and effort to learn how to cook gluten-free (especially if you don't already know how to cook- I was lucky in that respect at least). But eventually you'll get used to it, really. In the meanwhile, I learned that corn chips, rice and potatoes are my starchy friends, I also learned not to over do the fruits and vegetables at first, your guts won't thank you.

tarnalberry Community Regular

welcome! I hope the diet does help you. It can be hard at first, but catfish is right, once you get the hang of cooking, it really isn't that bad. (I really do seem to post this all the time... maybe I should change my signature to include it? ;-) ) Sticking with naturally gluten-free staples will help you keep it less expensive and easier. A LOT of recipes are NATURALLY gluten free. Rice, potatoes, corn, and yams are all good, common, inexpensive carbohydrate sources that can be used in a myriad of ways with a myriad of flavors (so you don't have to get bored of any particular one). All natural meats (no broth injected, or the like) are gluten-free as well, and of course there's a WIDE variety of types, and ways of cooking that can allow you to maximize small amounts of the cheaper cuts. Same thing with the produce aisle. (And the spice aisle. Spices can get expensive, but they last a long time, and make a HUGE difference in how things taste.)

crc0622 Apprentice

Sharon,

Upon diagnosis, I too ran to my local healthy food store and bought a bunch of processed gluten-free stuff I didn't think I could live without. Well, most of those are still in the cupboard because I just don't eat much of the specialty stuff. There are a lot more options in your regular store than you realize. (Yes, Cheetos are gluten-free, even though some don't eat them due to cross contamination issues I have never had a problem with them.)

I have found that the only thing I really can't find in a regular store is soy sauce (the jury is out on whether LaChoy is really gluten-free). I have purchased some cake, cookie, brownie mixes via mail order but requested that my commissary carry them AND THEY DO NOW! (I'm a Navy wife.) I did mail order some ready-made cookies, cinnamon bread and pizza crusts from Kathy's Creations and put them in the freezer. I'll eat a cookie every couple of days or so. I made my own mixes and put them in the freezer. That way if someone else is having sweets, I can too. I also bring them to work with me.

I also found that Publix carries some cereals that are gluten-free and SuperTarget has a couple of Bob's Red Mill items that are gluten-free (not all are, though - watch the label - it will say gluten-free).

I primarily eat meat, fresh veggies, potatos, rice, fruit. I have never had a problem with fruit that many have when first gluten-free. I love the stuff. We always try to make enough at supper to have leftovers for my lunch the next day. Eating out is not only difficult, it is very RISKY - always!

Pay attention to your body - it may be good for you to keep a food diary of EVERYTHING you eat for the first month or two because it's easier to figure out where you might slip up that way. Read all you can - there are other forums besides this one that are good, too. You can join as many as you have time to read! I regularly visit 3: delphi, yahoo sillyyaks and here. All have a different "specialty" or flavor and you'll quickly develop a favorite.

Good luck and hang in there.

Celeste

CoolCat1 Rookie

Sharon, i was just recently diagnosed in July. I found out that in Canada there is an income tax form that gives you back the difference in cost. I keep all my receipts. Hope you live in a country that does this.

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    • marion wheaton
      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
      @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 
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