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Guest DawterAod

By Guest DawterAod
in Publications & Publicity

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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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    • trents
      Have I got coeliac disease

      By trents · Posted

      And I agree with Wheatwacked. When a physician tells you that you can't have celiac disease because you're not losing weight, you can be certain that doctor is operating on a dated understanding of celiac disease. I assume you are in the UK by the way you spelled "coeliac". So, I'm not sure what your options are when it comes to healthcare, but I might suggest you look for another physician who is more up to date in this area and is willing to work with you to get an accurate diagnosis. If, in fact, you do not have celiac disease but you know that gluten causes you problems, you might have NCGS (Non Celiac Gluten Sensitivity). There is no test available yet for NCGS. Celiac must first be ruled out. Celiac disease is an autoimmune disorder that damages the lining of the small bowel. NCGS we is not autoimmune and we know less about it's true nature. But we do know it is considerably more common than celiac disease.
    • trents
      Have I got coeliac disease

      By trents · Posted

      @Mark Conway, here is an article outlining the various tests that can be used to diagnose celiac disease. By far, the most popular one ordered by physicians is the tTG-IGA. But almost all of these tests are known by different names so the terminology will vary from place to place and lab to lab. The article gives common variant names for each test.  In addition to IGA tests there are IGG tests which are particularly useful in the case of IGA deficiency.  
    • JudyLou
      Seeking advice on potential gluten challenge

      By JudyLou · Posted

      Thank you so much @knitty kitty! My feet aren’t dry or ashy and I don’t have a rash that gets scaly. It’s like very itchy/burning vesicles that are symmetrical - on both arms, both legs, etc. They actually feel better in direct sunlight as long as it isn’t really hot or I’m not exercising outside, but gets worse if I sweat (especially if the area is covered up). It’s not usually on the outside of my elbows and knees which seems more typical of dermatitis herpetiformis (unless it spreads there). It tends to first hit the inside of those areas. Interestingly, twice the rash broke out soon after eating an unhealthy meal and having an alcoholic drink (I only drink a few times a year, no more alcohol content than a glass of wine).  So I wonder if there is a connection. I’m halfway considering doing a gluten challenge for a few months to see what happens, knowing I can stop if I have any symptoms, and asking for a full celiac disease panel at the end. I really appreciate your thoughts! 
    • knitty kitty
      Seeking advice on potential gluten challenge

      By knitty kitty · Posted

      Welcome, @JudyLou, Your rash sounds very similar to the one I experienced.  Mine was due to a deficiency in Niacin B3, although I had deficiencies in other nutrients as well.  Celiac disease causes malabsorption of all the essential nutrients, but eating a poor diet, taking certain medications, or drinking alcohol can result in deficiency diseases outside of Celiac, too.  Symptoms can wax and wane depending on dietary intake.  I knew an alcoholic who had the "boots" of Pellagra, which would get worse when he was drinking more heavily, and improve when he was drinking less.   Niacin deficiency is called Pellagra.  Symptoms consist of dermatitis, diarrhea, dementia, and death (the four D's).  A scaly rash on the feet and hands and arms are called the "boots" and "gloves" of Pellagra.  Darkened skin around the neck exposed to the sun is Casal's necklace.  Poor farmers with niacin deficient diets were called "red necks" because of this.    Does your rash get worse if you're in the sun?  Mine did.  Any skin exposed to the sun got blistered and scaly.  Arms, legs, neck, head.  Do you have dry, ashy skin on your feet?  The itchiness was not only from the rash, but neuropathy.   My doctors were clueless.  They didn't put all my symptoms together into the three D's.  But I did.  I'd learned about Pellagra at university.  But there weren't supposed to be deficiency diseases anymore in the developed world.  Doubtful it could be that simple, I started supplementing with Niacin and other essential nutrients.  I got better.   One of Niacinamide functions is to help stop mast cells from releasing histamine.  Your allergist gave you doxepin, an antihistamine which stops mast cells from releasing histamine.   Since you do have a Celiac gene, staying on the gluten free diet can prevent Celiac disease from being triggered again.   Interesting Reading: These case studies have pictures... Pellgra revisited.  https://pmc.ncbi.nlm.nih.gov/articles/PMC4228662/ Steroid-Resistant Rash With Neuropsychiatric Deterioration and Weight Loss: A Modern-Day Case of Pellagra https://pmc.ncbi.nlm.nih.gov/articles/PMC12532421/#:~:text=Figure 2.,(right panel) upper limbs.&text=The distribution of the rash,patient's substantial response to treatment.   Cutaneous signs of nutritional disorders https://pmc.ncbi.nlm.nih.gov/articles/PMC8721081/#:~:text=Additional causes of yellow skin,the clinical features of Kwashiorkor.   Hello, @Staticgypsy, I would not recommend cutting so many nutritious foods out of ones diet.  Oxalates can cause problems like kidney stones, but our bodies can process oxalates out of our systems with certain vitamins like Vitamins A and D and Pyridoxine B 6.   People with Celiac disease are often low in fat soluble vitamins A and D, as well as the water soluble B vitamins like Pyridoxine B 6.  Focus on serving your granddaughter nutrient dense meals to ensure she gets essential vitamins and minerals that will help her grow. Micronutrient inadequacy and urinary stone disease: an analysis of the National Health and Nutrition Examination Survey 2007-2018 https://pubmed.ncbi.nlm.nih.gov/36976348/ Multivitamins co-intake can reduce the prevalence of kidney stones: a large-scale cross-sectional study https://pubmed.ncbi.nlm.nih.gov/38564076/
    • Wheatwacked
      Have I got coeliac disease

      By Wheatwacked · Posted

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