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Just Hit Me That I Can't Have A "normal" Thanksgiving

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It hit me today that I'm realizing that I can't have a "normal" Thanksgiving - the first one since being diagnosed. I couldn't figure out why I have been in such a funk all day until I went to the grocery store for ingredients to make a gluten-free pumpkin bread. While there called my niece's to see if there was anything they needed me to get while I was there. Told them i had picked up chicken broth and cornstarch to insure a gluten-free gravy, they said they had everything THEY needed.

That's when it hit me because it seemed like they didn't care to ask me any questions to help insure that I had a safe meal with them or need the things I needed to insure this. I know I'm sounding selfish, but the reality of the loss of Thanksgiving as I used to know and others not seeming to care enough to ask me questions, I had all I could do to hold myself together until I got out to my car to loose it.

Others are doing the cooking - I don't have control over it, and that scares me. I want to enjoy my time with them, but I don't think they understand the importance of being gluten-free. My sister-in-law keeps trying to offer me things that aren't gluten-free with - "you can't even have a little?" She has MS and tells me all the time that unless you have MS - you don't know what she's going thru, WELL, the same goes for having to be gluten-free - unless they're going thru what I'm going thru, they'll never understand either.

I had been doing OK so far mentally with this until today.

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You can have a normal Thanksgiving provided the necessary steps are taken. Sounds like you are going to have problems since others are doing the cooking. How about making a small amount of Thanksgiving dinner at home and take it with you. Take a desert that you can share with everyone. That way you know what you are eating is safe and you can enjoy everone's fellowship without the stress of food. If they get snippy as to why you refuse their food, you could say something about how miserable you would be with diarrhea or something. The talk of that stuff usually gets people to shut up.

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I know how hard it is. Last year was my first gluten-free Thanksgiving and even though my mom was diagnosed the same day I was, she didn't want to do a gluten-free Thanksgiving because "it wasn't fair to the others." So, I suffered through it and was sick for a week. This year she came to her senses and we're doing a gluten free turkey and a regular one!

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I'm so sorry to hear that :( I'm going through nearly the same thing. It will be my second Thanksgiving, however, but I wasn't nearly as careful last year, I just avoided the obvious. This year, I will be abstaining from all of it due to the risk of CC and I was glutened recently. It's at my boyfriend's brother's apartment and I'm terrified of being the odd one out. I'd really prefer to just blend, and not eating the food doesn't bother me, but I don't like standing out due to the disease. Oddly, my boyfriend feels worse about it than I do. I completely understand with people not getting the severity of it. My mom wants to be careful but simply can't get in the right mind set. I know I'm ingesting very tiny amounts of gluten because I'm eating in the same kitchen. How many pizzas have been thrown right onto our wooden cutting board!

It's hard to make people understand but I've accepted it's my problem and I'm not going to try to make other people adapt too much for me. They try to be careful and that effort is all I can and want to ask- I truly appreciate it.

This TG will be really difficult but I know we can soldier through it :D Good luck and know you aren't alone- it just feels that way very, very frequently!

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I think Thanksgiving is the hardest socially of all the holidays for someone with celiac if the family or friends one is eating with just doesn't get it or want to get it. This year I am planning to just celebrate it here alone with my (also celiac) room mate. Yesterday I helped my older brother clean up my mom's house (to show them that I actually do care) but I told him and my sister and mom that I don't want to eat with them and go through what I did last year--I was sick for 3 weeks afterward not because of what I ate, but what I breathed in. My youngest brother made 5 wheat pies in my mother's kitchen (next to the dining room) and the dust was everywhere... Last year I specifically asked my brother to use gluten free flour instead, but he changed tactics when he discovered it was more difficult to make with it than wheat flour for regular pie crust. I was actually chastised for being upset. It really isn't worth being judged negatively as well as getting ill for 3 weeks like I was last year as a result of this air born glutening! So this year I am not even going to chance it

Be

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I'm sorry it's so difficult, and yes, it does suck, but as you're moping your way through it, try to think of ways to make it better next time. My first year I threw a Thanksgiving dinner in March - made everything myself in my nice clean kitchen and invited all my friends and family.

Everyone loved the party in the middle of March, long after all the holiday stress, and I got to have the Thanksgiving I wanted, without inconveniencing anyone.

This worked for me because I love to cook, your solution might be taking yourself to Hawai'i or something. :)

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I just have to post my sympathies when you say your sister-in-law tells you that her disease is worse (in so many words)...I have similar experience. My sister has MS, and has made it very clear that no one (in the entire world) has it worse than she does...the difference between her and I is, I learned to live with my agony from birth and she became sick quite suddenly. Therefore, my entire family pretty much dismissed me any time I'd say I didn't feel well, because that's just the way I always was (and even after diagnosis, they just still dont get it-maybe I learned to live with it too well?). It's not very fair, now is it? But, you have to remind yourself that you ARE fortunate to be able to control your disease. At least, that's what I try to tell myself, and when I need my sympathy and support (that I just don't seem to get), I come on here and get it :) So, I feel you on the Thanksgiving grief. I hope you make it through and are able to enjoy some of the meal. And, if your SIL says anything else insensitive, just smile and come here and let us know...if you look at my last thread, I had an offer from others to help me punch my sister! :) It made me feel better- Ha!

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This is also my first Thanksgiving since being diagnosed. I am in graduate school and away from my family. One of my friends invited me to her house for Thanksgiving. Everyone is aware of my Celiac (or at least I'm assuming her Mom is) and so she asked exactly what I could and could not eat. After I started answering her questions and realizing how complicated it would be for her family to try and make even a small number of dishes gluten free, I offered to just bring my own food (though this is different from dealing with family.). I will be bringing my own food to eat, along with a vegetable platter and dip and dessert to share. I will make sure that I get my own portions before they are passed around. (haven't decided if I am going to take them out at home or when I am there yet). That way I will only have to worry about CC from the dishes I am using (hopefully). I am really bummed that I am not going to be able to share in the usual foods (even though they have never been my favorites.) I hope that since I will still be eating some food it wont be as awkward as if I was eating nothing. I'm glad that my friend invited me and thought about what I can and can't eat. Even though it will be challenging to deal with all her family that I don't know, I can only think of how great it will be after my many years of having Thanksgiving alone in my dorm.

I hope your Thanksgiving goes as well as possible. I would suggest making your own food and bringing it with you, then you wont feel so out of place. If they say anything, just let them know that this is what you have to do to keep healthy and leave it at that.

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I was diagnosed in October and I was so devastated that I had to tell my family.....my support group.

I invited my mom and my aunt to join ME this year for a Gluten Free Thanksgiving since I couldn't participate in a Thanksgiving with the family this year.

My mom and Aunt were MORE than willing to accomodate me and my desire to still have a Thanksgiving.

My brother (who lives with me) was invited to his son's house when they found out that Grandma and Aunt Janet were going to my house for an allergy free dinner.

I'll have to say, they were more understanding than I expected.

I'm making pumpkin pie with gluten-free gingersnap crust........gluten-free cornbread stuffing with sausage (fresh ground) - veggies with cheddar and rice - baked mashed sweet potatoes with brown sugar and cinnamon - mashed potatoes with turkey gravy and gluten-free garlic rolls.

I'm not missing out on anything and neither is my mom and aunt.

They will experience a healthy meal and time with a gluten intolerant member of the family.

I am so blessed to have people join me on my terms. It means I can still enjoy Thanksgiving and be healthy..........and in the process........they eat healthy too.

Try inviting people to a Thanksgiving supplied by YOU........bet they can't tell the difference!

If you have to participate in others Thanksgivings.......eat first or bring something safe for you and be the first to break into it.......don't be afraid or ashamed to state your case - and stick to it.......don't be afraid of what others may think.........they're NOT you! Stay true to yourself and the others will follow.

Hugs to you on your Lifestyle change - and your strength to stay safe.

Always.

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I posted on this myself. I am sure it is a familiar topic for long diagnosed folks with celiac disease.

I have been very sensitive lately, not to others but when I am alone I cry at the littlest thing. Like you TODAY I realized the full scope of why. The declining invitations was easy, I didn't want to have to go through the explaining. The realizing if I changed my mind and decided to go and possible cross contamination was kind of unsettling. When I had hoped to grab some dinner fixings from the kitchen at work and saw someone temp the stuffing and then the Turkey with the same thermometer it hit me (for the umpteenth time)....NO EATING FOOD ANYONE ELSE HAS PREPARED, this time was the hardest.

It finally sunk in that the normal socialization many people do around food is no longer a normal situation for me.I did a lot of socializing in my life around food, most folks do. I realized one moment today that I am mourning that. Sure I could have had a gluten-free Thanksgiving if I wanted to cook everything, but I work in a bakery and this is a BUSY week for me. Yeah I know I need a new job, working on that.

It was good to realize why I was somber and understand that this is a part of the process of my new gluten-free life. Sharing it with my Dad, who also has celiac too and many other food allergies (likely due to ignoring his celiac disease for so long), was wonderful. Coming here and finding this post was great too! Knowing we are not alone and sharing with others what we are and HOW we are dealing with it all makes it easier.

WE ARE NOT CRAZY because we get MAD that we can't eat like everyone else, we are just going through the steps it takes to come to terms with it. Someone told me it is a grieving process and I know I may revisit it many times over, or not and either way it's perfectly fine. It is what it is.

I wish you well and thank you for your post. Know that you are NOT ALONE! Sharing does help so keep it up!

Thanks again. Happy Day of Thanks!

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It hit me today that I'm realizing that I can't have a "normal" Thanksgiving - the first one since being diagnosed. I couldn't figure out why I have been in such a funk all day until I went to the grocery store for ingredients to make a gluten-free pumpkin bread. While there called my niece's to see if there was anything they needed me to get while I was there. Told them i had picked up chicken broth and cornstarch to insure a gluten-free gravy, they said they had everything THEY needed.

That's when it hit me because it seemed like they didn't care to ask me any questions to help insure that I had a safe meal with them or need the things I needed to insure this. I know I'm sounding selfish, but the reality of the loss of Thanksgiving as I used to know and others not seeming to care enough to ask me questions, I had all I could do to hold myself together until I got out to my car to loose it.

Others are doing the cooking - I don't have control over it, and that scares me. I want to enjoy my time with them, but I don't think they understand the importance of being gluten-free. My sister-in-law keeps trying to offer me things that aren't gluten-free with - "you can't even have a little?" She has MS and tells me all the time that unless you have MS - you don't know what she's going thru, WELL, the same goes for having to be gluten-free - unless they're going thru what I'm going thru, they'll never understand either.

I had been doing OK so far mentally with this until today.

The first year that I was going gluten free, I didn't have a good time at thanksgiving. I ate what I could, and that is it. Last year my mother said screw it and cooked a Thanksgiving herself...she did it all gluten free for me and her. It all turned out very well. This year she was able to talk her family into coming to HER house, so this year it's even better...she's experimenting with pies...all kinds of pies.

However, Christmas is another story. I will be in MO with my husband and I will, yet again, be the only one who can't enjoy the things that everyone else can. Sure I could chance it and eat what I think is safe, but could very well be cc'd.

I am thankful that I can have a gluten free thanksgiving and I'm sorry that it's not quite that way for you. But I share your pain none-the-less and maybe Christmas can be a more enjoyable eating experience for ya.

It really really REALLY sucks, I know. I think people assume you can "cheat" since it's Thanksgiving and they really don't think about it. I don't think they are doing it on purpose. I would hope not anyway.

Happy Thanksgiving :)

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This is my first gluten free Thanksgiving too and I've been somber about it as well. I'm also dairy free which makes navigating a meal at someone else's home a real challenge. T has always been my favorite holiday and the T meal is my absolute favorite meal. It's all the things I love. I love to cook and can totally recreate a gluten-free/df T meal so that's not what is bothering me. It's this:

I'm terrified of being the odd one out. I'd really prefer to just blend, and not eating the food doesn't bother me, but I don't like standing out due to the disease.

I've always been a go with the flow person so I hate what this diet does to my frame of mind. It shines a spotlight on me that I don't want. I know this is part of accepting the gluten-free lifestyle and it's a phase (hopefully) but I totally understand this feeling like, why must I be different? I guess you could say I'm in the midst of a pity party as I mourn the loss of my favorite holiday in the classic sense.

I imagine this is how an alcoholic might feel around the holidays faced with the social drinking at family and friend gatherings.

Next year I will make T myself and make all my favorite things.

Happy Thanksgiving all!

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We don't do Thanksgiving here in the UK but just wanted to say you have my absolute sympathy and I understand why you had to flee the grocery store to cry. I'm a newbie - 2 month gluten-free and just cut out dairy too, and I'm having a miserable time. And so many people don't get it, which really doesn't help.

I've also had the "there's only a tiny bit of wheat in it, surely it's ok" and raised eyebrows from those who think I'm some kind of paranoid inventor of maladies. I hate not trusting people to cook for me - they think "no flour" and it's all ok, but they need to check the ingredients list on EVERYTHING.

Happy Thanksgiving - I'm sure it'll get easier for all of us. You're not alone!

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And just to add another classic - in my grumpiness I just updated my facebook status to say I was fed up with my diet, and got this response from a friend:

"Oh dear. Are you having to be really strict about the celiac thing?"

DOH!!!

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This also is my first gluten-free Thanksgiving...I am grateful however that I was the one cooking...Luckily for me I had a couple of months warning...I was able to save some gluten-free Bread for Stuffing, practice with gluten-free Pie Crust and research gluten-free Turkey etc...etc...etc...but you know...it sort of hit me too, the kind of planning it takes to avoid gluten and contamination during the holiday season.

This first gluten-free Thanksgiving...for me there are losses...my stuffing does not taste the same...my pecan pie crust came out too hard, but the pumpkin pie came out great...but it is not what I consider normal...

Maybe I have to develop a new definition of normal...but I am not there yet...

My adult kids came home for the holiday and I had to make them aware of my needs, such as separate butter, mayo and toaster etc...and they just rolled their eyes...ouch...that hurt :( They just don't get it...I think it perhaps just boils down to confidence, confidence in stating our own needs and not feeling guilty about it. AND just maybe understand that others sometimes just won't get it...

I know I have already been glutened by some gluten crumbs...and I feel crappy right now...probably due to my kids using my butter dish...I guess I will have to be a broken record or just go out and get my own darn refridgerator!

So I too am feeling more than little crappy !!!

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Thank you to everyone who posted, it really does help to put in words how we feel and have those that understand give their feedback. I really don't have anyone that I can really talk to with whom I can express what I'm going thru - well, I suppose I could say something to my mother, but, she's not the sympathetic type to just listen and let you vent, so that makes it tough. She's been dealing with this for more than 17 yrs and the rest of my family has gotten used to it, they are still getting used to the fact that I am now having to deal with it too.

The niece I mentioned in the initial post is from my late husband's side and they are totally clueless regarding this. Turns out that plans changed and I ended up having dinner at my parent's - therefore guaranteed a safe meal.

The mental "loss" of traditional gluten filled meals is still something I need to deal with, and hopefully, over time, the late husbands side of the family will get used to. Especially now that it is decided that I will be taking care of Christmas dinner - which means I am in control and they will have a feast that they will not forget !!! Totally gluten free and "traditional" AND delicious !!!!

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Congratulations! Sounds like the tempest has passed and you will be the victor for Christmas...

Bea

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luckily my mom provides a gluten free Thanksgiving. She even bakes me a small crust free pumpkin pie! ( and puts in in a cabinet to cool so it does not get flour fall out!

I do feel the same way when I go out to eat. I traval a bit so often I often wind up eating odd food combination's, ie shrimp and sweet potatoes and a glass of milk. But I know the first night that I am home I will have a full real meal. So I just hold out, keep my trips little short and smile when I want to ring the neck of a gluten pusher. In a bad mood I once told someone who kept pushing "sure I can eat that, is it ok if i poop all over your couch in 20 minutes?" I may not be invited there but I would rather hang with real friends any way.

Personally i would bring a nice dish i could eat and share to show others that Gluten free can be good. Then cook my own thanksgiving dinner on Saturday or Sunday. I would rather make adjustments to stay healthy then make adjustments because I am sick.

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I did my own Thanksgiving dinner this year and was so careful - but still did not do that great.

I made pumpkin pie with gluten free gingersnap crust and felt the neck reaction.......I made turkey gravy with Cornstarch and mashed potatoes with condensed milk and still felt the reaction in the neck.....I bought fresh ground sausage from the same place I've bought it before to make a gluten free cornbread and sausage dressing including a gluten-free cornbread and still felt the reaction.

I was so sure it was good......but so bummed when it wasn't.

I'm just going to start going without or finding other safer items. But this is the first time I've done wrong so I'm very confused. I used many new items that are stated gluten-free and I believe they failed me.

Now it's back to tested tried and true.

So now I'm back to thinking, I'm not going to have a good Christmas dinner either.

Guess I'll just make a roast. The Cheebi(sp?) breads and pizza crusts really are nasty too! blech!

I wasn't feeling too bad about Thanksgiving until I failed........now I'm in the same boat.

Perhaps I'll figure out what went wrong......but this is what I was afraid of......the glutening.

How did your abnormal Thanksgiving go?

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"I made pumpkin pie with gluten free gingersnap crust and felt the neck reaction.......I made turkey gravy with Cornstarch and mashed potatoes with condensed milk and still felt the reaction in the neck.....I bought fresh ground sausage from the same place I've bought it before to make a gluten free cornbread and sausage dressing including a gluten-free cornbread and still felt the reaction."

Sounds gluten-free. Either you were reacting psychologically or you had CC in the area you were using.

richard

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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

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    • 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.  
    • What's got me thinking I might still have to worry about celiac, even though I've been gluten-free for 4 years: https://scdlifestyle.com/2015/11/the-celiac-disease-diet-why-gluten-free-isnt-working-and-what-to-do-instead/ 
    • The test I took said less than 20 U/mL is normal. I had 8. Which I know is less than 20 by far. But all my other levels were less than 1. Maybe I'm just psyching myself out looking for an answer anywhere.
      I guess what I'm wanting to know is if a blood test is completely useless without gluten in the body, or if any sort of elevation can be interpreted as something? I'm just kinda mad that no one told me it only really works when you have been eating gluten.
      I know (from more research) that a biopsy of your small intestine can let you know, too, but that's so expensive, and without a positive blood test I don't think a doctor would refer me.
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