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Is Anyone Else Just Angry That Drs Missed Celiac For So Many Years?


HaileyRay812

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Takala Enthusiast

One additional observation from the MD posts on Sermo was that there is a generalized belief that it is impossible for a patient to actually follow through with a gluten free diet. I had one MD actual comment to me that I "probably eat gluten all day long without realizing it." I offered him to come and spend a day with me and test my fruit, plain chicken breast, and roasted vegetables for gluten and he declined. I guess that I am still angrier than I thought I was!

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And this is a prisoner of his culture, that does not understand that people who can exert control over their immediate environment, (such as growing,gathering,preparing their own food that makes them feel well) are going to seek out success if they have the support of others that see the benefit of that success. And he doesn't appear to have a nurturing instinct towards younger children.

I wonder what he says to his other patients with food allergies, diabetes, alcoholism, etc.

Oh, that's right, he doesn't have any. They've expired. :blink:


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Icarter: "Since starting the gluten-free diet there has been remarkable reversal of symptoms. Of course, since no one caught it earlier, there probably will always be some residual problems...like significant osteoporosis."

I too have had celiac all my life before I discovered what was going on. This was a good 50 years or more...if you count the first 4 years I was off gluten as an infant and young child. I was so bad that my fingernails were flaky and my teeth never hardened until recently. Now I no longer get carries! Think of that. Gums are much improved too.

How I have done it is by taking nattokinase and l-glutamine as well as enterically coated probiotics on an empty stomach. This goes a long ways towards healing the villi and thus their absorption of minerals and vitamins. I also take E-zorb--its 90% absorpable calcium that the Chinese invented. Check it out on the Internet. It has made a huge difference for me. I also take liquid sea minerals, zinc, mag. citrate, and silicon drops (this last for my otherwise perilous joints--it builds both bone and cartiledge). Occasionally I also take plain cod liver oil to get the extra D I need plus Omega 3's.

Doing all this my osteoporosis has effectively gone away--though it seems I have to keep taking these supplements to keep it that way. Now I can lift small weights and do modified push ups and sit ups without harming myself. Try it and see what you think!

Of course no doctor suggested this to me. I had to figure it out on my own. Again thank god for the Internet!!

Am also now trying an experimental laser allergy relief treatment. Its too early to tell if it will help or not. If not, I'll get my money back, so how can I lose?? Am keeping my fingers crossed it will help me overcome some of my multiple food sensitivities.

Bea

YoloGx Rookie

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I wonder what he says to his other patients with food allergies, diabetes, alcoholism, etc.

Oh, that's right, he doesn't have any. They've expired.

LOL! now that's some dark humor! LIke my brother says, you only laugh when it hurts...

kellynolan82 Explorer

Yes I am angry too. I never had a biopsy though... :(

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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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