PME
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PME reacted to Wheatwacked in Newly diagnosed with DH
The effective blood level of vitamin D is around 80 ng/ml which is equivalent to 200 nmol/L depending on the lab. Because of a manufacturing error, the infant formula had 1000 times the maximum vitamin D for infants, in the UK in 1950s there was an epidemic of infant deaths attributed to calcification which The Royal College of Physicians and the British Pediatric Association concluded that the most likely causes were the unregulated overfortification of milk with vitamin D and/or excessive intakes of vitamin D from various foods. Although the Royal Academy of Physicians admitted that it did not have any direct evidence for this conclusion. As a result, legislation was instituted in Great Britain forbidding the fortification of any food or any product with vitamin D. This concern for vitamin D toxicity in children led to most of the world (including countries in Europe, the Middle East, Asia, Africa, and South America) banning vitamin D fortification of milk. Only the United States, Canada, and a few European countries continued to permit milk to be fortified with vitamin D. Vitamin D Is Not as Toxic as Was Once Thought
So the RDA was set at only enough to prevent rickets. But what about all the rest of the bones and teeth? Ever wonder why osteoporosis is found in just about every disease, including just growing old. Or why the UK is infamous for rotting teeth? They get virtually no vitamin D from sunlight in winter, and when there is enough sunlight in summer SPF 100 and cover up because of fear of skin cancer. There is a depression called Seasonal Effective Disorder caused by lack of sunlight and resultant low vitamin D. 42% US adults, up to 70% Canadians and 51% Irish have vitamin D insuffieciency.
"Ekwaru et al16 recently reported on more than 17,000 healthy adult volunteers participating in a preventative health program and taking varying doses of vitamin D up to 20,000 IU/d. These patients did not demonstrate any toxicity, and the blood level of 25(OH)D in those taking even 20,000 IU/d was less than 100 ng/mL." https://www.mayoclinicproceedings.org/article/S0025-6196(15)00244-X/pdf
I've been taking 10,000 IU a day since 2014, getting tested for the last 3 years 4 times a year and have never had higher than 86 ng/ml. It ended a very long depression after only 3 days at that dose. It also modulates the overactive autoimmune response.
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PME reacted to trents in Newly diagnosed with DH
I am not aware of high doses of D3 causing constipation issues.
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PME reacted to trents in Gastroparesis
Welcome to the forum, PME!
First, I would l feel a need to say that you need to get this checked out as soon as possible by medical professionals. Gastroparesis, if that is actually your issue, can be a life-threatening issue. There is also the possibility of the blockage being caused by a surgical stricture (if you have ever had abdominal surgery), a kink in the bowel or even a tumor. I would not hesitate to resort to urgent care on a weekend. If this has been going on for a month you need to do something. Sometimes as celiacs we neglect to reckon with the fact that things can go wrong with our bodies that have nothing to do with celiac disease.
Having said all the scary things, have you tried a laxative or stool softener? What about an enema? Also, supplementing with magnesium can be helpful as well as a constipation preventative.
If you were diagnosed as a celiac two years ago, have you had a follow-up to check celiac antibody levels to monitor the success of your efforts to eat gluten free?
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PME got a reaction from Scott Adams in How to be a celiac guest at destination wedding
Thank you so much! I emailed the hotel, and they said they cater to all kinds of dietary restrictions and alerted the events manager for the wedding. I'm still planning to bring my Gliadin X, but I am profoundly relieved. I hated the thought of the hosts wasting their money on me!
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PME reacted to trents in Food designated as “gluten free” really isn’t
Welcome to the forum, Heather!
According to FDA guidelines, food products may use the "gluten free" label as long as the concentration of gluten does not exceed 20ppm. So, according to regulatory standards they can still have very small amounts of gluten and advertise as gluten free. This standard works for the majority of celiacs but there are some who are much more sensitive for whom 20ppm will cause a reaction.
The other possibility is that some batches of the gluten free product, for whatever reason, did not meet the requirement. They don't test every batch. In fact, my understanding of the FDA regulations is that the companies aren't required to test at all unless challenged to do so by some consumer action against them. However, I'm pretty sure most of them will not be willing to take that chance and will test to make sure, at least at intervals.
My suggestion is that you look for the label "Certified Gluten Free" as opposed to "Gluten Free". Certified gluten-free products are held to stricter standards.
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PME reacted to CKOwen in GliadinX available
I don’t misunderstand the purpose of Gliadin X at all. While the use of enzymes is being studied as a way of helping to manage Celiac Disease, as of now, there are no enzymes that have been found effective for this use. None. The studies on these enzymes thus far show that they don’t survive the acid in your stomach and they don’t break down gluten in a way that would stop the immune response in people with Celiac Disease. I’m not trying to be a scold here but this is a serious disease and citing anecdotal usage is irresponsible and dangerous. There is a gulf between “seems to help” and “actually helps”. People come here for help and guidance and when there’s already so much misinformation out there about this disease it’s frustrating to see more of it here.
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PME reacted to Scott Adams in GliadinX available
I agree with @RMJ, and I think the important thing about using AN-PEP is to understand that it isn't a replacement for being careful, nor is it designed to allow you to cheat on your diet. I had already decided that I wasn't going to stop doing something that I loved, which is travelling and eating outside my home--usually at restaurants or friend's houses--but I simply have added this to my routine whenever I do this. I am just as careful now about gluten as I ever was before I began using AN-PEP. Some celiacs decide to never eat out again, and thus may not need it. That is their choice, and I do not criticize them for it.
Most of the criticism I see around AN-PEP stems from the misplaced idea that it may encourage some people to eat more gluten, or take more risks. I saw a recent survey from Spain that indicated that 1/3 of celiacs in Spain regularly cheat on their diets--and I suspect that a similar number around the world also cheat (we did surveys 15-20 years ago that indicated at least 25% cheat on their diets). I would never encourage cheating, but if you are in this large group that does cheat, I would highly recommend that they take several AN-PEP capsules beforehand. Of course it may not eliminate all of the gliadin/gluten that they consume, but it will still help to some extent, and it certainly won't hurt them.
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PME got a reaction from docaz in GliadinX available
Hey Scott, I'm pretty much a newbie here who was recently diagnosed with Celiac Disease. I am not "visibly" symptomatic following gluten consumption, but I am now in osteoporosis, so for me (and I presume others like me), the damage is being done "silently." I'm wondering if there are statistics as to the percentage of Celiac-positives who are, on the surface, asymptomatic, and whether any research is being done comparing the two groups. I'm grateful to not be suffering GI symptoms when exposed (as so many do), but I wish there was a way to KNOW when accidental gluten exposure has happened. (Protecting against such exposure is my primary reason for hoping to take GliadinX, albeit blindly, when I'm dining outside my home.)
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PME reacted to docaz in GliadinX available
The statement that NOTHING breaks down gliadin before reaching the small intestine is very, very false.
Just to add to all the papers that I posted before, this is a paper co-authored by the head of the GI department of the Mayo Clinic, Dr. Joseph Murray. His opinion is that enzymes can break down gluten in the stomach. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3788609/ Please read the section "Oral Enzyme Supplements"
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PME reacted to trents in GliadinX available
Yes, but if GliadinX breaks down enough of the traces of gluten found in CC scenarios such that there is less than enough left to cause a celiac reaction, then it has accomplished the purpose, has it not? Seems to me you are setting up a straw man argument based on the premise that GliadinX is guilty of misleading people who use the product outside of the intended parameters.
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PME reacted to Scott Adams in GliadinX available
It seems to me that you've not read the published scientific research studies that @docaz has shared in this thread, which describe in detail exactly what AN-PEP enzymes are capable of doing--which is breaking down small amounts of gluten in the stomach BEFORE it reaches your intestines and causes damage.
You acknowledge here that GliadinX might be capable of breaking down some of the gliadin, but your criticism is centered on the idea that it may not be able to break down ALL of it. Isn't it better to break down some of it instead of none of it, and if so, why not use it?
Again, we are talking about celiacs who may choose to eat in restaurants (I am one of them), or at a family or friend's house (I am one of them), and might end up regularly eating small amounts of gluten. You can also scale up how much you take, depending on the situation, without any serious side effects. This is a true story that really sold me on the idea of using these enzymes regularly when eating out:
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PME reacted to docaz in GliadinX available
ABSOLUTELY NOT!! It means exactly what it says. Implying that this is designed to eat gluten freely is a baseless interpretation. The studies show that a small amount of gluten is digested but nowhere is that posted or advertised in conjunction with GliadinX. It is everywhere prominently posted that It is intended for possible cross-contamination and NOT for intentional gluten ingestion and that includes the mixed frier.
Reality is that everybody even if they worry, eats gluten knowingly or unknowingly. By telling people just keep doing what they are doing and maintain a gluten-free diet, is truly endangering them because almost 100% of people are exposed to gluten. I do not know what you read but the links that I posted are high quality research papers that clearly show that AN-PEP can break down gluten (and so do Latiglutenase by ImmunogenX, KumaMax by Takeda and Caricain by Gluteguard which are not on the US market yet) By adding GliadinX they they are adding a safety component. Advising against GliadinX is not protecting anybody against a "bad product" but truly removing an additional precaution and endangering people and encouraging them to continue being exposed to gluten.
I actually do not understand why you would not celebrate the fact that there is something that allow to take at least some of the stress of dealing with gluten. I am not sure if you or your teen is gluten-free but I do have teens who are gluten-free and the social implications are enormous and reality is that they are constantly tested. Giving them a little extra wiggle room not to bring their own food wherever they go is a big deal. By posting such negativity, and ignoring the research that is presented you are not protecting but endangering because you basically ensure that they will be exposed to gluten.
It is very simple, if you go to a restaurant and eat from the gluten-free menu or you go to grandma's holiday dinner you are taking a chance. You can choose not eat and bring your own food but that's not realistic for many. If you eat in such situations, you will for sure occasionally deal with cross-contamination. Now you have a choice to add a 50 cents GliadinX capsule for extra protection or not. If you do not, you will be for sure exposed to occasionally to gluten and if you do take a capsule all research shows that there is a good chance that it can be helpful.
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PME reacted to trents in GliadinX available
There us currently a study being done on the effectiveness of GliaddinX's main active ingredient: https://clinicaltrials.gov/ct2/show/NCT04788797 . The study was put on the back burner due to the COVID overload of the healthcare system but is due to be complete in December of 2022.
docaz is the inventor of the product, a sponsor of this forum and an occasional participant. See his post from 1/11/22:
Perhaps we will have a more definitive answer about the effectiveness of this product next year.
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PME reacted to docaz in GliadinX available
It is very important to emphasize that nowhere is the product advertised for intentional gluten ingestion. This is done prominently and is not just a hidden footnote. You are very correct that even the smallest amount of gluten (specifically the gliadin molecule) can cause damage in the small intestine. Your are also correct that avoiding gluten is the best way to manage celiac disease) GliadinX is designed add ad safety layer because all experts agree that a 100% gluten-free diet does not exist and a very famous "doggie bag" study and many others has shown that a very high percentage of people who think that they do not ingest gluten, the are in fact ingesting gluten. This has bee shown by examining the inflammatory markers in stool (longer term exposure) and urine (shorter term exposure). The active ingredient of GliadinX has been studied extensively and has shown that it can break down the gliadin molecule. One of the best studies has been done with a nasogastric-tube in which gluten and AN-PEP was introduced and samples taken from the small intestine showed that gliadin was broken down. This is one of the original ones at the University of Leiden which is one of the oldest and most reputable Universities in Europe It shows that AN-PEP has the potential to prevent inflammation and not just symptoms https://pubmed.ncbi.nlm.nih.gov/16690904/
This is a study that was done for European approval https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5638938/
Here is a summary of various research with AN-PEP (GliadinX has the highest concentration of AN-PEP) https://www.metagenicsinstitute.com/wp-content/uploads/2018/07/MET2110-AN-PEP-Research-Review_MI.pdf
Everybody will be in a situation such as a family event, restaurant, social or work event where even if the food is gluten-free, contamination is not 100% excluded. One has the choice to always bring food along or not to eat. For many that is very hard to do and they take a chance (with gluten-free food, not the whole wheat pizza) and in that case, GliadinX helps ensuring the even small amounts of gliadin do not make it to the small intestine.
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PME reacted to Scott Adams in GliadinX available
The other thing to keep in mind is that you can take 1-5 pills, or more, with no real side effects, other than more AN-PEP will break down more gliadin. Again, this does not in any way mean that you should use them to knowingly eat gluten, but the sad reality is that most restaurant food, even ones with gluten-free menus, has some contamination according to studies we've summarized on Celiac.com. As many as 1/3 cheat on their gluten-free diets regularly, and for those like me, who believe that travelling and eating out are too important to cut out of their lives, it does offer an option that may help (I can say that it has helped me).
The maker of GliadinX @docaz may have more points to make.
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PME reacted to docaz in GliadinX available
You are absolutely right that it is important to concentrate on maintaining a gluten-free diet and GliadinX is not designed to change that. Even the most careful person will be in a situation that raises questions at a family event, in a social situation or at a restaurant that is not completely gluten-free but has gluten-free items on the menu. The only way around it is complete social isolation. The question is not if one should be careful or not. Of course, one should be careful but the question is if it is worth spending 50 cents for a product that has a large amount of promising research to add an additional layer helping to maintain a gluten-free diet in certain situations, that everybody encounters and one is not 100% sure.
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PME got a reaction from Scott Adams in GliadinX available
Just a little PSA...maybe most folks here already know this out of pure vigilance...but GliadinX is now available to be ordered again. Just ordered mine from Amazon. Interested to try it.
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PME reacted to RMJ in Osteoporosis & Celiac
I don’t think there is a standard interval but 6 months should be good.