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Enzymes not a forbidden word anymore


docaz

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docaz Collaborator

I have been working with enzymes for many years and until recently, most celiacs cringed when they heard the word "enzymes".  That is clearly changing. Now you can even see on the Stanford University celiac page under the highlighted innovation section that enzymes can prevent an inflammatory reaction. 

https://stanfordhealthcare.org/medical-clinics/celiac-disease-program.html


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RMJ Mentor

I wish they had given more information so I could read their publications on enzymes.

docaz Collaborator
9 minutes ago, RMJ said:

I wish they had given more information so I could read their publications on enzymes.

This is a description of the enzymes by one of the most prominent celiac researcher there is https://www.healio.com/news/gastroenterology/20170831/latiglutenase-improves-symptoms-in-celiac-disease

A follow up study is being planned and patients are being recruited. 

This is the underlying patent that explains how the enzyme combination of two complementing enzymes work

https://patents.google.com/patent/US8796201B2/en

The DSM product that I am working with (GliadinX) has the same action but it is achieved with one enzyme rather than two and is complemented by the natural stomach enzymes. 

 It is interesting because I am in the medical field and usually people are excited about new treatment modalities even if they are in an investigation phase. In the celiac world the pessimism and skepticism is astonishing. 

This enzyme combination was developed by a clinician at Stanford and they have a lot of background research that was done without being published. 

Even if enzymes are not a cure but a way to manage the disease, the implications for the lifestyle of celiac patients is unimaginable. 

RMJ Mentor

Thank you so much!  I am in the medical/pharmaceutical field and am definitely interested since my celiac antibodies are supersensitive but my symptoms aren’t.  I’m hoping GliadinX can help with the gluten contamination I’m getting somewhere and get those antibody levels back to normal.

docaz Collaborator
8 minutes ago, RMJ said:

Thank you so much!  I am in the medical/pharmaceutical field and am definitely interested since my celiac antibodies are supersensitive but my symptoms aren’t.  I’m hoping GliadinX can help with the gluten contamination I’m getting somewhere and get those antibody levels back to normal.

 

9 minutes ago, RMJ said:

Thank you so much!  I am in the medical/pharmaceutical field and am definitely interested since my celiac antibodies are supersensitive but my symptoms aren’t.  I’m hoping GliadinX can help with the gluten contamination I’m getting somewhere and get those antibody levels back to normal.

My children were in a similar situation. They were pretty much asymptomatic but they were incidentally diagnosed because of the high antibodies. They had the entire celiac panel, genetic test and endomysial test. 

On a gluten-free diet the numbers went down but when they started taking the enzymes then numbers went completely normal and we know that they have been exposed to gluten. 

I had the luxury to be able to spend an enormous amount of time connecting with the specialists in the field and invested a good amount of resources to help my children and while effort is not always rewarded, in this situation it was and as a result they live much easier lives. They stayed asymptomatic and their antibody levels have stayed in the low normal range for the last 7 or so years.  

Since you are in the medical field, this publication which is not an easy read for most will make sense to you

https://www.mdpi.com/2072-6643/12/7/2095/pdf

This is the doctoral thesis that I discussed with the forme head of the University of Chicago Celiac center before giving my children enzymes and that really convinced me to meet the researchers and I was fortunate to get a batch of enzymes years before they became available on the market.

This publication is a doctoral thesis and very long but goes over a lot of material that was put together very well at one of the oldest universities in Europe https://openaccess.leidenuniv.nl/handle/1887/17698

 

RMJ Mentor

Thank you! Reading material while sheltering at home from COVID.

docaz Collaborator
17 minutes ago, RMJ said:

Thank you! Reading material while sheltering at home from COVID.

I hope that the COVID thing will resolve before you finish reading it. 


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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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