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    Would You Try a Vaccine for Celiac Disease?


    Jefferson Adams
    Image Caption: Photo: CC--Frank Balsinger

    Celiac.com 08/26/2016 - News that ImmusanT company is beginning full human trials for their celiac disease vaccine, NexVax 2, brought a number of comments from our readers.


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    We first reported on their effort way back in 2002, with our story, Australian Researchers Begin Work on a Vaccine for Celiac Disease.

    We followed up over the years, with stories in 2009, First Ever Celiac Disease Vaccine Trials Underway in Australia and again in 2011, with articles reporting on the company's efforts to raise investment funds, titled ImmusanT Raises $20 Million in Series A Financing to Advance Immunotherapeutic and Diagnostic for Celiac Disease and on how ImmusanT's Celiac Vaccine Passed Phase I Clinical Trials and in 2012, with Is a Vaccine for Celiac Disease Just Around the Corner?

    Comments generally ran toward the affirmative side, with many people expressing excitement or interest in such a vaccine.

    From Jared M: I hope this research goes well. The bread, crackers and pizza I can live without. But I would really like to be able to drink a good IPA again. The sorghum beers are horrible. I am quickly growing tired of ciders. I would definitely pay for this treatment if it works.

    From Toni: I have celiac. That [a vaccine] would be wonderful.

    From Traci: I would like to be involved in a study for this immunization.

    From Linda Haas: Can't wait to hear more about the progress made on this vaccine...it sounds very promising!

    From Donda: I'm thrilled with the possibility of this coming to market.

    From Muriel Weadick: This is what all celiacs have been waiting for, and I am sure I am not alone in wishing the company success.

    From Suzanne: A vaccine like this would make it easier to eat out and go on vacation.

    Jeanne Burge wrote: I would gladly volunteer for the trials in the US. Hope this works!

    Still, a few comments ran toward the less than glowing side, with some people expressing trepidation, or outright distrust toward such a vaccine.

    From Cathi: My Question is, "What will be the side effects of this turning off the body's ability to fight Gluten?" Will there still be destruction some place else and maybe worse? So, many times a pill is created to help one thing only to find out that it created another problem some place else in the body. Frankly, I am worried.

    From Donna: Absolutely agree with you, Cathi. There is always a problem and side effects with ANY drug! My question is this - WHAT ELSE will be shut off? Will we be even MORE susceptible to other illnesses? I am worried as well!

    From Balm: Thanks but no thanks. I'll remain a celiac and continue to eat healthy. While trying to fix one problem, some will end up with far worse problems.

    From Jonnys: Stupid idea! Just another way to make more money off of people.

    Certainly, those who may have a weakened or compromised immune system should consult with a physician before receiving most vaccines. But, in adults with a healthy immune system, such a vaccine would likely present little or no danger to the recipient. Most people with celiac disease have healthy immune systems, so the likelihood of any adverse reaction will be slight.

    Of course, this is all theoretical, even at this point, as vaccine trials have so far not proven how well the vaccine actually works in preventing or curing celiac disease.

    So, the question is, if such a vaccine is proven safe and effective, would you be open to trying it, or not?


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    Guest Ashley

    Posted

    My son is only 5 and was diagnosed at 15 months old. He is still so young so yes I would be very happy if there was something in the future he could do pending it had been proven safe and all that. So many things I worry about for his future like his teen years, dating, restrictions on employment for ex military if he wanted to.. Just so many "what ifs".. As a mom I would love to make things as easy as possible for him. I feel terrible when he asks me why God made him different and how gluten just looks so good.. I can usually cheer him up and everything will be ok, but it comes up every once in awhile and just breaks my heart. Will continue to follow the research to see where it goes.

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    Yes I would totally be willing to try a vaccine.

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    Guest Margaret

    Posted

    I´m glad to hear about this...a lot of people are being misdiagnosed and don´t know it.

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    Guest Deborah Ross

    Posted

    I think the IDEA is terrific, but I have my doubts concerning the effectiveness of a vaccine for my problem (celiac disease) as well as possible side effects. I am in my 60s and already deal with side effects of a blood pressure medication. Because my pediatrician told my mother that I had "outgrown" celiac when i was 10 years old, I ate a normal diet for about 50 years and then suddenly faced CONSEQUENCES. I feel very lucky to be alive with normal digestion - and strict adherence to a gluten free diet, which I spice up with lots of fruit, veggies, herbs, meats, dairy, good recipes, etc. Another doubt I have about a vaccine is this: celiac disease is not caused by viruses or bacteria. What are we inoculating/what are we inoculating against?

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    I wouldn't try the vaccine. There are naturally occurring opioids in wheat that can affect a person mentally and cause other neurological problems. I´m sure the vaccine wouldn't address that aspect.

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    Guest Mary Ann

    Posted

    I was diagnosed with celiac disease in 1957. Knowledge about the disease has come a long long way since then. I would love to be a part of this study.

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    Guest Julie M.

    Posted

    Yes, if they have trials in Columbia, MO I´m interested.

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    Guest Geane A. Lee

    Posted

    Yes I am willing to try it. Is it being done in Tennessee?

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    I would definitely want to have the vaccine. However, before proceeding I would also need to know any potential side effects or any other effects it could have on the body. Eating gluten free is limiting especially when traveling.

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    My son is only 5 and was diagnosed at 15 months old. He is still so young so yes I would be very happy if there was something in the future he could do pending it had been proven safe and all that. So many things I worry about for his future like his teen years, dating, restrictions on employment for ex military if he wanted to.. Just so many "what ifs".. As a mom I would love to make things as easy as possible for him. I feel terrible when he asks me why God made him different and how gluten just looks so good.. I can usually cheer him up and everything will be ok, but it comes up every once in awhile and just breaks my heart. Will continue to follow the research to see where it goes.

    I agree with you wholeheartedly, Ashley. My son is 9, and was diagnosed when he was 3. I worry about his future as well. Sometimes he'll look at and smell my food, and say that he wishes that he could eat it, and it kills me. He also made me promise that if they do come out with a vaccine, I'll buy him all the gluten foods that he hasn't been able to eat, like Twix and Kit-Kats.

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    Guest Jennifer

    Posted

    I would try it even if only so I could eat gluten free out at restaurants without fear of cross contamination. I get violently ill with the least amount of gluten and so I don't eat out at all. Waiting and waiting for an entirely gluten free restaurant to come to my area. Please...

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    Guest Jason Kravitz

    Posted

    Hello,

    It hasn't been intentional, but many of my travels in the recent years have been to coastal towns or towns very low in elevation. I have found that drinking or eating any products with gluten/wheat in them has caused no adverse reaction to my GI. So long as I do not travel back to higher elevation cities inside of 24 hours of having had gluten, I have no adverse reactions back at home either. I do not know if my cilia feel the same way at the lower elevations when I have ate or drank products containing gluten, but thought it was interesting to note.

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    Guest Heather

    Posted

    Not interested. As we continue to pollute the food system, I imagine it will be just another way to ensure that all the progress made in the area of gluten-free will go by the wayside. There are so many issues with the pesticides we are putting onto wheat, GMO strains resulting in even more pesticides being used, that even with a vaccine, I would choose not to eat wheat.

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    Guest Peggy Byrde

    Posted

    No way in the whole wide world would I introduce pharmaceuticals with side effects... when my own body's miraculous intelligence has already told me clearly I do not benefit from gluten. If I argue with my own immune system, I lose. I am happy and healthy living gluten free.

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    Guest Carrie

    Posted

    I would absolutely love to be a part of this trial, so tired of all reactions to gluten. Would love to go out to eat and not worry that something will negatively occur.

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    Guest Michele E.

    Posted

    I would be very happy to be a part of any clinical trial. Hope it is offered someday!!

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    Guest Susan Copeland

    Posted

    No, I would not take the vaccine for celiac disease. My immune system reacts adversely to all of the grains not just the traditional "gluten" grains.

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    I agree with you wholeheartedly, Ashley. My son is 9, and was diagnosed when he was 3. I worry about his future as well. Sometimes he'll look at and smell my food, and say that he wishes that he could eat it, and it kills me. He also made me promise that if they do come out with a vaccine, I'll buy him all the gluten foods that he hasn't been able to eat, like Twix and Kit-Kats.

    Why in the world would you eat food with gluten around him?? What the heck did you expect from a little kid? Think!! Poor kid!

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    Guest Susan Hochstetter

    Posted

    I do not believe you have stated if this vaccine is for people with celiac disease or only to keep people without it from getting the disease?

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    Guest Audrey

    Posted

    I would be very interested in this vaccine as I was older when I went gluten free and would love to be able to eat gluten even once in awhile!!!

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    Guest Katherine

    Posted

    I would love to be included in this trial. I previously was in a trial for a medicine for celiac.

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    Guest Dene Charlesworth

    Posted

    I would like to eat out without worrying. I would like a twisted. I would like a beer. I would like some KFC. I would like a vaccine please.

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    Guest Ryan Michaels

    Posted

    Living gluten free is almost impossible for me for certain reasons. It's a hell I would love to see gone forever. I do however, thank God for enduring me through it daily.

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    Guest Ryan Michaels

    Posted

    Yes, I definately would try a vaccine.

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    Guest Yvonne R.

    Posted

    This disease has really affected my life in so many ways, all negatively. Many experts say that if you cut out gluten completely, your body will heal itself enough over time that you can reintroduce it into your life. I have found the exact opposite! I have been living gluten-free for the last 6 years, but the other day I took medication for bronchitis and all my celiac symptoms flared up like crazy. Had a look at the ingredients in the antibiotics and found that it contained gluten! What does it help that you look at every food and beverage label and then it gets you where you least expect it?

     

    If anyone ever does clinical trials in South Africa, I would be the first to sign up!

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    Jefferson Adams
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    Dr. Ron Hoggan, Ed.D.
    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
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    Whatever the reason that stuttering has not been reported in the medical literature in association with gluten ingestion, a number of personal disclosures and comments suggesting a connection between gluten and stuttering can be found on the Internet. Abid Hussain, in an article about food allergy and stuttering said: “The most common food allergy prevalent in stutterers is that of gluten which has been found to aggravate the stutter” (10). Similarly, Craig Forsythe posted an article that includes five cases of self-reporting individuals who believe that their stuttering is or was connected to gluten, one of whom also experiences stuttering from foods containing yeast (11). The same site contains one report of a stutterer who has had no relief despite following a gluten free diet for 20 years (11). Another stutterer, Jay88, reports the complete disappearance of her/his stammer on a gluten free diet (12). Doubtless there are many more such anecdotes to be found on the Internet* but we have to question them, exercising more skepticism than we might when reading similar claims in a peer reviewed scientific or medical journal.
    There are many reports in such journals connecting brain and neurological ailments with gluten, so it is not much of a stretch, on that basis alone, to suspect that stuttering may be a symptom of the gluten syndrome. Rodney Ford has even characterized celiac disease as an ailment that may begin through gluten-induced neurological damage (13) and Marios Hadjivassiliou and his group of neurologists and neurological investigators have devoted considerable time and effort to research that reveals gluten as an important factor in a majority of neurological diseases of unknown origin (14) which, as I have pointed out previously, includes most neurological ailments.
    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
    Celiac.com 06/14/2018 - Refractory celiac disease type II (RCDII) is a rare complication of celiac disease that has high death rates. To diagnose RCDII, doctors identify a clonal population of phenotypically aberrant intraepithelial lymphocytes (IELs). 
    However, researchers really don’t have much data regarding the frequency and significance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. Such data could provide useful comparison information for patients with RCDII, among other things.
    To that end, a research team recently set out to try to get some information about the frequency and importance of clonal T cell receptor (TCR) gene rearrangements (TCR-GRs) in small bowel (SB) biopsies of patients without RCDII. The research team included Shafinaz Hussein, Tatyana Gindin, Stephen M Lagana, Carolina Arguelles-Grande, Suneeta Krishnareddy, Bachir Alobeid, Suzanne K Lewis, Mahesh M Mansukhani, Peter H R Green, and Govind Bhagat.
    They are variously affiliated with the Department of Pathology and Cell Biology, and the Department of Medicine at the Celiac Disease Center, New York Presbyterian Hospital/Columbia University Medical Center, New York, USA. Their team analyzed results of TCR-GR analyses performed on SB biopsies at our institution over a 3-year period, which were obtained from eight active celiac disease, 172 celiac disease on gluten-free diet, 33 RCDI, and three RCDII patients and 14 patients without celiac disease. 
    Clonal TCR-GRs are not infrequent in cases lacking features of RCDII, while PCPs are frequent in all disease phases. TCR-GR results should be assessed in conjunction with immunophenotypic, histological and clinical findings for appropriate diagnosis and classification of RCD.
    The team divided the TCR-GR patterns into clonal, polyclonal and prominent clonal peaks (PCPs), and correlated these patterns with clinical and pathological features. In all, they detected clonal TCR-GR products in biopsies from 67% of patients with RCDII, 17% of patients with RCDI and 6% of patients with gluten-free diet. They found PCPs in all disease phases, but saw no significant difference in the TCR-GR patterns between the non-RCDII disease categories (p=0.39). 
    They also noted a higher frequency of surface CD3(−) IELs in cases with clonal TCR-GR, but the PCP pattern showed no associations with any clinical or pathological feature. 
    Repeat biopsy showed that the clonal or PCP pattern persisted for up to 2 years with no evidence of RCDII. The study indicates that better understanding of clonal T cell receptor gene rearrangements may help researchers improve refractory celiac diagnosis. 
    Source:
    Journal of Clinical Pathologyhttp://dx.doi.org/10.1136/jclinpath-2018-205023