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Hmm...my affairs in order. OK. Alan on Sunday, Bob on Monday, Steve on Tuesday...Oh, not those affairs. :lol:

OK, now that I've softened things with a lame joke, the doctor really did say that. Turns out I have terminal cancer. Lymph. "Very advanced". They say they can't cure me but they might (MIGHT) be able to prolong my life.

No thanks. There's a reason they tear a bandage off fast instead of going slowly. Fast might hurt but only for a second. Slowly hurts for a long time. And as far as I'm concerned they wouldn't just be prolonging my life but they'd be prolonging my suffering. I'm just going to let things follow their course. I've got pain meds, I've got a ton of loving friends who will do anything they can to help me. I'll get Hospice in later when the time comes. It's all good.

Jarrett is going to take over the shop for me and even though it's just ego, it's nice to know the thing I started will carry on after I'm gone. Bonnie is my best friend who brought me and Patches together and she has promised she'll find him yet another good home.

And I'm happier and more at peace than I've been in a long time. No more wondering. And when I leave here I'll be going home to God. What could be better?

There really are much worse things than a diagnosis of terminal cancer. There was a guy who used to come by on his motorized chair and talk to me sometimes. His fingers were so twisted with arthritis he couldn't get in or out of bed, he couldn't dress himself, cook, or even blow his nose without help or extreme pain. And he went on like that for YEARS. Nope, what I've got is so much easier.

Anyway, you know how sometimes people disappear from an internet forum and you wonder what ever happened to them? Well I didn't want you to wonder about me. And I want to thank everybody here for the good advice and the many friendships I've developed. I may chime in again if I think I can be of help to someone, but for the most part I'm going to lay low. You don't need a blow-by-blow account of my progress and I won't burden you with it.

So yeah, thanks and great big (((((HUGS))))) to you all. :)

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((((((((((((((((((((((((((((((((((((((((((HUGS))))))))))))))))))))))))))))))))))))))))))

You will be missed. You have been a great help to many. Sorry you got such news.

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Oh!  Barty!  I am so sorry!  I will miss you.  I loved to think of you in your store.  You always sounded so happy there.  I had hoped to stop in some time. 

 

thank you for letting us know

Edited by kareng
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Karen lit the super silly signal....I'm thankful she did.

So very sorry to read this news.

You sound at peace which shows what a remarkable person you are....you will be missed by those you've helped as well as those whom have shared time with you... in the real world or through our keyboards.

Many hugs for all your days left on this rock...and when it's time to go, please send one up to Shroomie for me : )

Ad Astra Dear Bartie.

 

 

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I'm so very sad to hear this.  You will be greatly missed.  You've been a wonderful source of comfort and inspiration to many...myself included.  Thank you for everything you've done for us all.  I'm crying typing this....so hard to hear.  I do hope you continue to chime in...your wisdom is invaluable. 

Love and (((((((((((hugs)))))))))))

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o, barty, what can i say :((((((((  i am so sad :((((((((((  won't you at least try treatment :(((((  my daughter's boyfriend was dx/d  w/lymphoma stage 4 and that was 5 years ago and he is fine.......  :/  they are doing magical things with meds/treatments lots of new stuff ???

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Dear Barty,

Dear Barty, dear Barty, dear Barty, dear Barty. I love you. I will remember you. Whenever I think of you, I think of you in your store, happy, with lovely music filling the air, or at home with Patches in your lap and you feeding him from a spoon. I will always think of you these ways.

You will go to your reward from your beloved Black Hills and you will go home and you will be with your dearest husband again.

Godspeed friend!

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Hi Bartfull,  just popped over to say I wish you peace.  I remember you as such a positive presence on this board.  

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Oh I'm so sorry to hear that! In the short time I've been on this site- I've been so grateful for your help! I've learned a lot from reading some of your old posts too! 

Thankyou for the time and effort you've given here😊 God bless! 

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Bartfull, I have always admired your attitude and even more so now.  I hope you are surrounded by family, great friends and enjoy every day to your fullest.

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I am sorry to hear that Bartfull.  But there is definitely a better place to be than here.  I said a prayer for you in Jesus name.  I hope you enjoy your time remaining here.  It's been great having you around the forum helping us out.

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I cannot imagine this forum without our bartfull.   :( You are such an integral part and always dispensed the very best advice. I always admired your attitude regarding the challenges that were thrown at you and am so grateful for all the great posts you made. Your acceptance and peace are amazing and to be admired. God Bless you and know how loved you are here. You are one special soul.

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Bartfull,

I agree with and fully endorse your choices in how you plan to navigate the end of your life.  Smart woman.  That said, I will really miss your words and energy on this site.  Even though I've only been here for a short time, your news made me cry.

I hope I have as much notice as you when my death comes.  I want to avoid (as much as possible) the medical system when it's my time to die.  I worked in a hospital and saw many people who were not as fortunate.

I wish you peace, independence, and freedom from pain while you navigate the end of what has obviously been a wonderful life.  You have won the most wonderful gift--the love of so many people.

I send my love to you also.

Beverly

 

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Dear A.

You've always been one of my favorite people on here. I admire your courage, humor, and great faith. I have always pictured you enjoying your guitar shop, your kitty, and your home because you always told me how much they gave you pleasure. You've been an inspiration to me and to so many others on here during the last few years and you've helped more people than you may ever realize. That's your gift.

It doesn't surprise me that you're facing this final challenge with the same grace that you've handled everything else thrown in your path. My first response last night when Karen told me your news was "well F you, celiac, quit  taking our peeps!" (because you know I shoot from the hip) but as I read your words this morning one more time, I can see that you've already decided to handle this last challenge with the same "Barty attitude" that I admire so much. 

You're a true warrior princess and I agree with Gemini: You are one special soul and I am so glad our paths crossed. 

xoxo

G. 

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Bartful, 

Like Scarett O'Hara, I decided to "Think about it tomorrow." in the hopes that I could write a response that would best describe my feelings and thoughts. Well, a few days have passed and it is not getting any easier!  

I respect your decision regarding your healthcare and  I am so sorry that this is happening to you.  You will be missed here as you offered such common-sense advice.  

It is funny, but on the day you posted, my newly-retired neighbor approached me about OLLI which is a group of learners at our local university.  He plays guitar in a garage rock band but wanted to learn classical guitar.  I offered to take him to campus to enroll in our classical guitar class.  Ron and I talked about our love of music and that you are never to old to learn!   I play my flute in an Orchestra and concert band with the members who are as old as 92 (yep, Deseree sits on her walker to maintain the beat on her bass drum!).   But I digresss......what I am trying to say is that you will live on in our memories and hearts each time we pick up our instruments, pet our furry friends or read another label to make sure it does not contain gluten (I will always recall your ice cream experience).  

Love and hugs!  

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Bartfull, I am fairly new here, but I am at a loss for words. You are an incredibly brave person. I send love, light, and many hugs your way.

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Bartfull

Thank you for all the help and encouragement that you have given so many people on this site.  

God bless you.

xxxxxx

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Dear Bartfull, 

I can't even find words to describe how sorry I am to hear this. I am at a loss for words. Thank you for all the support that you gave to me and others on this forum. God bless you. Hugs.

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Thank you so much for all you have contributed and all the people you have helped. 

Know you are in my thoughts!

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Our dearest Bartful - Alison - went to her heavenly rest on May 21, 2016. She was 61.

She was so much more than statistics. She was kind, generous, loving, giving and understanding. She gave everything of herself and never asked for anything for herself. 

Rest in peace dear Alison.

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Thank you for letting us know this sad news.  She was always ready to lend a kind ear and comfort to those here that needed it. She has been and will continue to be missed.

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Thank you so much for letting us know.  ((((((Hugs))))))

Alison has been on my mind a lot lately.  It's amazing how much you can miss someone you've never met...but she was an exceptional person who had a positive impact on everyone.  She was kind and wise...I'll always miss her presence.

I am thankful that she is no longer in pain and that she is now with her beloved husband and parents.

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A brave, kind lady.  She helped so many people.

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May she rest in peace.

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Thank you so much for letting us know.   Bartfull's calming optimistic peace will be missed.

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  • Who's Online   18 Members, 1 Anonymous, 967 Guests (See full list)

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    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com

    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.

    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.
    So how, you may ask, is all this related to gluten? As a starting point, one report from the medical literature identifies a patient who developed aphasia after admission for severe diarrhea. By the time celiac disease was diagnosed, he had completely lost his faculty of speech. However, his speech and normal bowel function gradually returned after beginning a gluten free diet (8). This finding was so controversial at the time of publication (1988) that the authors chose to remain anonymous. Nonetheless, it is a valuable clue that suggests gluten as a factor in compromised speech production. At about the same time (late 1980’s) reports of connections between untreated celiac disease and seizures/epilepsy were emerging in the medical literature (9).
    With the advent of the Internet a whole new field of anecdotal information was emerging, connecting a variety of neurological symptoms to celiac disease. While many medical practitioners and researchers were casting aspersions on these assertions, a select few chose to explore such claims using scientific research designs and methods. While connections between stuttering and gluten consumption seem to have been overlooked by the medical research community, there is a rich literature on the Internet that cries out for more structured investigation of this connection. Conversely, perhaps a publication bias of the peer review process excludes work that explores this connection.
    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

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    • Thanks for the kind thoughts. The test results I got back a few comments ago and I said what they were which was negative on everything. I just don't think it's celiac but something that created this domino affect. I plan on going to my regular doctor because honestly I feel the GI one was useless. When I told her back in Feb that I wasn't sure I'd be able to have the colostomy and endo she said "well then we won't be able to help you". 😕 The peanut butter I bought was organic . I had looked at the Aldi brand which I never had any issues with and it had soy so that's why I looked for a brand that didn't have any soy. I haven't had chocolate since February either due to the soy. I hadn't eaten anything but fresh fruit, vegetables, Chicken or fish since mid Feb. I did have some dried fruit which I seemed ok with but now the last two days I've gotten gas from that :(. I did have prunes awhile back and they also gave me gas which never happened before. I rarely eat prunes as it as always done the opposite of what it commonly is used for .
    • Sounds like the blood test is useless in your case.  Some times people have elevated antibodies for a few months after gluten-free.   The tests have a range for normal because it is normal to have  those numbers.  Two months from now, they may be slightly different.  There are other things that can cause low levels on these tests.  
    • Thank you for your help! Now I am beginning to understand more about this disease.  
    • Becca4130, Cyclinglady is right.  Most have those genotypes but they have found other gene types that doesn't always fit that mold. I haven't always known this (and I am not good at gene tests) I having only been diagnosed on blood serology alone. This verywell article explains it well. https://www.verywellhealth.com/hla-dq8-one-of-the-main-celiac-disease-genes-562571 depending on your ethnicity you might not type out well depending on where your ancestors are from. see their (verywell) paragraph about DQ8 variability by regions of the world. Be your own advocate your nutritionist is right to be cautious. see also this research about variations in genotyping can cause certain world/countries population to fail to show a positive gene typing depending on the region DQ2/DQ8 prevalence in the population mainly in Japan according to verywell. But it has shown up in people of Brazilian (assumingly) Portuguese ancestors as well (different gene typing). https://www.ncbi.nlm.nih.gov/pubmed/21484038 In their conclusion they noted in a subset of brazilians at least the wrong Regional gene typing test (American or European) might effect someone's test's causing a negative gene typing test. quoting CONCLUSIONS: "In this study, celiac disease was associated with the genotypes DQ2 and DQ8. DQ2 predominated, but the distribution of the frequencies was different from what has been found in European populations and was closer to what has been found in the Americas. The high frequencies of the HLA genotypes DQ2 and DQ8 that were found in first-degree relatives would make it difficult to use these HLA genotypes for routine diagnosis of celiac disease in this group." Assuming you don't have any of this mitigating factors then it is uncommon to be diagnosed as celiac disease without these gene types. You might only be able to get the more vague NCGS diagnosis.  But do a month food allergy elimination diet then when you re-introduce you will know if gluten is the culprit. You won't have to get  a doctor's confirmation of what your body already knows. Here is one more research article but a little older so there is probably newer research that might replace it. that might answer your question entitled "HLA-DQ typing in the diagnosis of celiac disease" https://www.ncbi.nlm.nih.gov/pubmed/11922565 I hope this is helpful. ******This is not medical advice. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the Grace of God,  
    • I would put my money on a latex allergy or intolerance.  You can not even bring latex balloons into the hospital anymore, just the Mylar ones.  Did you call to confirm the “gel”.  It makes not mention of a gel on the Amazon or Costco website.  
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