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Guest DawterAod

By Guest DawterAod
in Publications & Publicity

Recommended Posts

phakephur Apprentice
phakephur
Posted

I think it's likely that if this pill becomes available, most doctors (at least in the United States) will summarily prescribe the drug for their newly diagnosed celiac patients without discussing the gluten free diet as a viable option. After all, isn't it the birthright of every American to shove anything indiscriminately down his piehole and take a pill to counteract the symptoms that arise from eating toxic food? The prospect of going gluten free for life is overwhelming initially, so I think the option of taking a pill before meals will be seductive for a lot of people who are newly diagnosed.

I feel fortunate to have adjusted to a gluten-free diet before this pill hits the market. I'm skeptical that the drug regimen described in this article will actually promote health in the patient. But 2 years ago if that had been presented to me as an option for symptom suppression I probably would have jumped at it.

Also, I completely resent the fact that celiacs, even those who are feeling well by managing their health through diet, are almost invariably refered to in these news articles as "sufferers".

Sarah

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celiac3270 Collaborator
celiac3270
Posted

I agree with Sarah 100%...and that's why I'm afraid of this pill in a sense--the gluten-free diet might become...near obsolete......

KaitiUSA Enthusiast
KaitiUSA
Posted

Yeah I agree with Sarah and celiac3270 there....I think it will just cause more problems and what they do best here is cover the symptoms(and cause more problems with side effects) not take away the root problem...

MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

The pill is only for gastrointestinal pain. I am so senesitve to gluten now that it gives me rashes, itchy eyes, and all that jazz. There are also people who suffer headaches and breathing reactions. The pill can only "fix" the stomach problems so what about the rest?

debmidge Rising Star
debmidge
Posted

Agree w/Sarah & celiac3270. Food manufacturers would then get lazy and not want to label the food properly as there's a "pill." What about people who could not afford this Pill & don't have prescription plan/insurance? What if the prescription plan/insurance won't pay for it? For example: Lactaid is OTC and not available as prescription; therefore, it's out of pocket expense. Nice that they make something to help ameloriate the symptoms (and re-action) but not realistic in terms of availability then.

ianm Apprentice
ianm
Posted

A pill to reduce the problems caused by getting accidently nailed by gluten would be great. A pill just so I can eat crap is just plain stupid. I much prefer the lifestyle I am forced to live because of this disease. This disease took away so much from me but the lifestyle I am now forced to live has given me so much more. Doctors are so clueless about health and nutrition as it is that another pill is just going to make matters worse. We don't need this kind of"cure." This is just another way for drug and agribusiness companies to take more of our money to buy things we don't need in the first place.

Ianm

Guest BellyTimber
Guest BellyTimber
Posted

There is a disturbing trend to the publicity that is being aimed against the gluten-free lifestyle even by support orgnisations that ought to know better, I was complemented by the hospital dietitian for the variety in my diet (which I maintain if I can).

The gluten-free diet is not restrictive because we can discover foods that are relatively fibre, mineral and protein rich that hardly anyone else eats because they "get away" with the usual diet which is the truly restrictive one.

We support a more varied economy and ecology which it is all the rage for authorities to pay lip service to.

There are already gut remedies, any additional developments would probably be good. It would probably have a more marked effect on small children but they will still have to be periodically monitored for what effect gluten is having on them - as so many groups of people need really.

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Rikki Tikki Explorer
Rikki Tikki
Posted

The only real reservation

Archived

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
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