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Newly Diagnosed With celiac disease And Still Feel B A D ! Help


Harley0000

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mamaw Community Regular

Hi Nancy

I'm not sure if you area white bread eater or a more earthly type of bread eater . I'll guess & pick white? Am I correct? Again, its better to focus on wha tis good gluten-free that you can swallow rather then dwell on the no no's.

Pamela's has a good bread mix. whole foods has gluten-free breads that will work . I love their sun-dried garlic tomato bread for grilled cheese. Smoked gouda & another favorite Yummy!

Three sisters is a new company & have a very good white bread . It was a hit at our seminar.

Udi's is a fast becoming favorite of many.

BiAglut pasta is the best

DePumas have high-end tortellini, & ravioli ( like served in finer restaurants)

Conte's is very good & pricing is way better.

Everybody eats has baguettes, & ficeille rolls for Italian nights.

Joans gluten-free great bakes has NY style bagels & eng muffins & pan pizzas that so many love....

These are a few of my favorites.

We like earthly breads so I'm a big fan of Anna's mix.

But I do not eat the same bread ie: Italian night I use everybody eats,corn bread for chili night & so on. We are very picky & only eat the best available.

I love marketing & testing products. This was my living for mainstream companies for over thirty years...

I hope I've given you a few ideas to hopefully get you closer to better health.

I too, have strange illness' & super sensitive.....

blessings

mamaw


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Imanistj Contributor

When I was eating any bread I wanted I liked Monk's white, raisin bread, and occasionally, the whole wheat. Wegmans makes a white bread that is similar to Monks, but I thought it was nicer. Sometimes I would get a crazy desire for Wonder bread if I wanted a PBJ or BLT on really soft bread. I also enjoyed sandwiches on hamburg rolls. I liked potato bread and preferred hotdogs on the New England style roll, which is pretty much like bread. This is the kind of roll that some Mainers insist is the only proper roll for a lobster roll, and it has to be toasted. I loved a good rye (no seeds) or pumpernickel, and also a good, crusty Italian or French bread. Of course, I had my favorite store or bakery for these items. Real enjoyment could be achieved only with the accompaniment of good, cold butter. Now, I would think I had died and gone to Heaven if I could find a bread like Wonder bread. Pathetic, I know. I just made Betty Crocker's chocolate chip cookies because many people have said they were really good. I won't make them again. I do find Pamela's bread mix the most acceptable, but the texture and flavor really detract from a sandwich. I don't think I am going to find acceptable gluten-free substitutes for any baked goods and there will come a time when I will just stop trying. I am waiting for a store about an hour away to call me when they get in some Gluten-Free Naturals Sandwich Bread Flour. I went to the New England Celiac Conference, just outside of Boston, on October 3. It was really well done--the speakers who addressed everyone in the morning, the small group discussions in the afternoon, and the large number of vendors who offered tons of samples. I tasted a sample of bread made with this flour and I thought it might be something I could get used to. It was just about to come out on the market and the vendor didn't have any for sale. I found a store within driving distance that carries Gluten-free Naturals and I asked the clerk to order the flour for me. She agreed and I am waiting for a call to come pick it up. If that doesn't work for me I really do need to stop buying expensive items and ingredients and give up on baked goods. I could probably be satisfied with home made pudding for breakfast. I never have eaten cereal for breakfast--no one in my family, or my ex's ate cereal for breakfast. Gee, he and I really did have something in common ;) If I could find gluten-free Rice Crispies made with white rice, and I liked the product, I could also make rice crispy treats for breakfast. I can't eat eggs every day because I am on a statin already to keep my cholesterol acceptable. Right now my test numbers are OK.

I might as well stop writing about my dislike of gluten-free baked goods. If I do write about them again it will be to say I found something I will actually make again. I envy those of you who either resign yourselves to some gluten-free foods never being like the real thing, or can actually like the substitutes. I would love to write in someday and say I feel better and the gluten-free diet is working for me. I will definitely stay with the diet until the first of the year and I may decide to continue it until I see the MD again in May

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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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