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Alvine Pharmaceuticals Reports Positive Results

patriceo15

By patriceo15
in Publications & Publicity

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patriceo15 Rookie
patriceo15
Posted

Found this today So I wanted to share with all of you.

Open Original Shared Link

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darlindeb25 Collaborator
darlindeb25
Posted

I had read this earlier and I think it's wonderful for accidental glutenings. I however, do not feel it's safe for a celiac/gluten intolerant to feel it's ok to use this type of med and then go ahead and eat gluten. We will never beable to safely eat gluten. There is much testing to be done to prove this type of product...years and years, in my opinion.

ShayFL Enthusiast
ShayFL
Posted

I personally will never take a drug when a healthy dietary change cures me. All drugs have side effects and some arent known for years and can be horrible (liver failure, heart failure, etc.) Why on Earth would I take something that could ultimately destroy my health when living gluten-free is very doable and healthy?

happygirl Collaborator
happygirl
Posted

Thanks for sharing this, patrice. Great to see research being done on Celiac.

Puddy Explorer
Puddy
Posted

Thanks, Patrice. This sounds like good news to me!

ENF Enthusiast
ENF
Posted

It's great news for those of us who would like protection against cross-contamination. Many people with Celiac will want it, even if just for eating out in restaurants or at someone else's house. Bring it on!

Gemini Experienced
Gemini
Posted
Found this today So I wanted to share with all of you.

Open Original Shared Link

The outcome of the Phase 1 Trial of ALV003 is a major step toward providing people with celiac disease a better quality of life, as there are currently no approved pharmaceutical therapies available," said Dr. Ciaran P. Kelly, Medical Director of the Celiac Center at Beth Israel Deaconess Medical Center and Harvard Medical School. "Given the difficulty of following a strict gluten free diet, and the potentially serious health consequences of gluten exposure, there is a great medical need for ALV003 and other new therapies targeting celiac disease."

As much as I think this or any drug would be useful for travellers who want to protect themselves against CC in a foreign country, this statement makes me cringe.

I have wonderful quality of life, as far as food goes and certainly do not need any pharmaceutical therapies, i.e. DRUGS, to make my life better on a daily basis.

We have become such a pill popping nation that most ignore bad eating habits and inactivity and run to a doctor to get a pill for everything. I'm waiting for a pill that breathes for you so you won't have to waste a muscle contraction and the resultant energy it would require. :P No wonder Type 2 diabetes is at epidemic levels!

The diet is also NOT difficult, either. With doctor's going around with that attitude, no wonder people cannot accept a diagnosis and continue to cheat and make themselves sick. I am glad there may be a pill to protect you while travelling but as for use on a daily basis, NOT!

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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