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kelly79mass

Discouraged And Worried

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My 11 year old daughter was just diagnosed on Friday. She has not taken well to the news at all. She has been moody & angry ever since. What bothers me the most is she is not eating well at all. On Friday after work my husband picked her up a gluten free pizza and chex cereal. She hated the pizza. She didn't eat the rest of the night. The next day she had some cereal & liked it. We went to the store & got a few things. She was not interested in picking anything out except for brownie mix that she hasn't touched yet. She wants to make it herself but keeps saying she doesn't feel like it. She tried making toast, she hated the bread so she ate more cereal. All she ate today was cereal & a few strawberries. She wont eat! I don't know what to do. We are seeing a dietician Wednesday. Oh, wait at Old Navy today in the check out line she was looking through the impulse items & found an almond coconut bar labeled gluten & wheat free. I let her get it of course & she liked it. Other than that she has only eaten chex.

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My 11 year old daughter was just diagnosed on Friday. She has not taken well to the news at all. She has been moody & angry ever since. What bothers me the most is she is not eating well at all. On Friday after work my husband picked her up a gluten free pizza and chex cereal. She hated the pizza. She didn't eat the rest of the night. The next day she had some cereal & liked it. We went to the store & got a few things. She was not interested in picking anything out except for brownie mix that she hasn't touched yet. She wants to make it herself but keeps saying she doesn't feel like it. She tried making toast, she hated the bread so she ate more cereal. All she ate today was cereal & a few strawberries. She wont eat! I don't know what to do. We are seeing a dietician Wednesday. Oh, wait at Old Navy today in the check out line she was looking through the impulse items & found an almond coconut bar labeled gluten & wheat free. I let her get it of course & she liked it. Other than that she has only eaten chex.

IF you have succeeded in beginning a gluten free diet, I would not be surprised if her appetite is slack. My appetite slacked for a long while. If this is a mental thing I know the diet is a hard thing for me as an adult. Hang in there one day she may make her own decision to follow the diet. It tends to be motivating when you suffer when you cheat. Also one of my daughters didn't eat for nearly 3 meals. Finally, she came down for a meal and said nothing about it.

I also note that a family can best support her in the diet by setting an example. Eating infront of them can cause stress.

Best wishes to you and your daughter.

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Being diagnosed with Celiac Disease rough and the learning curve is very tough - no matter what the age. Transitioning to gluten-free is not easy -- there will be many days of frustration and even tears.

In time your family will find replacements to all of her favorite foods. For now I'd suggest you figure out how to make some of her favorite meals gluten free - search those foods in this forum and you should find ways to replace them.

Time will bring knowledge along with improved health - for now hang in there, let her be angry while reinforcing the fact that gluten-free will improve her life and know that many others have gone through this transition and are here ready and willing to help your family.

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IF you have succeeded in beginning a gluten free diet, I would not be surprised if her appetite is slack. My appetite slacked for a long while. If this is a mental thing I know the diet is a hard thing for me as an adult. Hang in there one day she may make her own decision to follow the diet. It tends to be motivating when you suffer when you cheat. Also one of my daughters didn't eat for nearly 3 meals. Finally, she came down for a meal and said nothing about it.

I also note that a family can best support her in the diet by setting an example. Eating infront of them can cause stress.

Best wishes to you and your daughter.

Thank you,

She has not been cheating. In fact the thought of something damaging her body terrifies her. She's very health conscious. But at the same time she's angry and doesn't want to eat the new food. "Nobody wants to start 6th grade being a freak!" :(

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Being diagnosed with Celiac Disease rough and the learning curve is very tough - no matter what the age. Transitioning to gluten-free is not easy -- there will be many days of frustration and even tears.

In time your family will find replacements to all of her favorite foods. For now I'd suggest you figure out how to make some of her favorite meals gluten free - search those foods in this forum and you should find ways to replace them.

Time will bring knowledge along with improved health - for now hang in there, let her be angry while reinforcing the fact that gluten-free will improve her life and know that many others have gone through this transition and are here ready and willing to help your family.

Thank you so much. That means a lot. There have already been lots of tears!

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I was moody and angry and I'm 34! I also didn't just go gluten free literally the day I got the news, I got information first. This did two things for me, it gave me time to start to come to terms with things and to pig out on a few of the things I'd never have again and it gave me a chance to get ready and prepared and learn what I could eat. It is okay for her to be mad, it is okay for her to be sad, it is okay for her to feel however she needs to feel right now.

I agree here that family support will be helpful. She is only going to be more angry and resentful if you decide to order pizza for the family and give her some gluten free replacement. There are good gluten free pizzas, but it will take time to find them and there will be many disappointments on the way. Check out some of the meal threads in the cooking or baking or whatever area here and you'll find lots of great ideas for the whole family. I promise that none of you will be feeling deprived. It's a learning curve for everyone, and it's easy to be discouraged but you'll all get the hang of it and before you know it it won't be a big deal any more.

Since she's young and I remember I ate everything in sight at that age, snacks on the go may be a good idea. Fruity and Cocoa Pebbles cereal bars are gluten free, as are the cereals. I also like Kind, larabar and Trio bars which are all significantly more healthy but not quite as fun. If you have a Costco, I pick up lots of these these sorts of things there. I also try to keep fresh fruit and veggies on hand to snack on. I personally happen to be a dipper, Kraft will always list gluten sources but a call to a manufacturer will clear up any question about gluten content. I'm sure the dietitian will help get you on the right path.

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Just read adalaide's post and thought I'd add a very easy treat:

Cocoa Pebbles Treats -- Rice Crispies have gluten (there is a new gluten free rice crispie, but my kids like the pebbles treats much better)

Cocoa Pebbles (recipe on the box)

Kraft Marshmallows

Butter

Optional: Cinnamon

Tons of sugar in these, but they are one of my teens along with their gluten eating friends favorites -- easy to take to parties to share with friends too :)

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Kids at 11 are SO self-conscious! The comment about looking like a freak if telling. I think she is more concerned with how her classmates will see her than she is about giving up gluten. Somehow you have to get her to see herself as a normal kid who just happens to eat differently. Point out to her that she doesn't LOOK any different, that she doesn't TALK any differently, and that NO ONE is going to think of her as a freak.

Are there any of her friends who live nearby? Maybe you could encourage her to have a sleepover with a bunch of friends before school starts. You could serve a menu of nothing BUT gluten-free foods so her friends could see that she is eating some fine and tasty things. They might even find that her gluten-free foods taste BETTER than what they normally eat. And getting THEM used to her new diet might go a long way toward easing her fears about the upcoming school year.

I wish you and her the best. This isn't easy for any of us, but for a sensitive 11 year old, it must be worse. ((((HUGS)))) to you both.

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My first few weeks gluten-free were terrible. I was incredibly moody and so tired. I didn't want to move. My poor kids had a grumpy mom... the withdrawl took about 3 weeks to pass. Give her time to shake it, and maybe tell her about the withdrawl... how it's almost like giving up a drug. It could help her cope.

Plus I ate more junk for a while too. gluten-free cookies and chocolate covered gluten-free pretzels. Having treats, for only me, was petty but it made me feel better.

Best wishes.

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My youngest son was angry as well. He didn't like being the different kid and did not think it was fair when others were eating something he couldn't have even if he had a alternative. He was 5 when he was diagnosed. Luckily his kindergarden teacher was a blessing. Because of him and others in the classroom with allergies, the whole classroom was gluten and nut free. It really helped him in the beginning. He is very accepting of it now and will speak up for himself when necessary. He's come a long way from the beginning.

My oldest son will be going into 6th grade next month also. He has been gluten free now almost a year. He is NOT diagnosed celiac. All his blood work has been negative for the past four years and he had a negative scope last year. I decided to trial him due to his life long constipation, belly aches, gas pain/bloating, nausea, and his stalled growth and falling on his growth curve. The results were amazing. He responded very well to the diet. After three months we let him challenge with gluten since we wanted to see what happened. He did have some symptoms after a few days. I had a long talk with him and laid out the reasons why to stay gluten free and the reasons not to. I let him decide what he wanted to do. He decided to stay gluten free(prior to this he was only eating gluten free family meals at home) because he said he felt better and he liked that he was starting to grow. He does not care if he eats differently than the other kids. It has never bothered him.

I think it really depends on the child's personality on how they deal with the changes. They all deal with it in their own way. My youngest needed that reassurance and support from his father and I. Now that his older brother is gluten free he doesn't feel like the odd kid out when he and his brother are at functions together. It did help that Mom was eating the same, but it helped more when brother went gluten free. Maybe it's a kid thing. :P

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Thank you everyone for the replies , hugs and support! She was thrilled with dinner Monday night. We had 1 of her faves bbq chicken. Last night I messed up a gluten free pasta so she had leftover chicken. But she woke me up last night saying she didn't feel well and vomited once. She fell asleep soon after and has been ok since. Why did that happen??

This is really heartbreaking to me. And overwhelming. It is tough trying to stay positive when my husband gets more upset than she does as we find more and more things she can't have. "the kids gonna starve to death!" I have two older daughters who will be tested too but other than my 13 year olds asthma they are both perfectly healthy. Kinda hate to rock the boat. 17 yo has been tryin to cheer her up. Even my 13 yo trouble has too until yesterday " I'm not eating that pasta!" this is what I deal with. I feel lost and alone. Sorry to sound so dire.

Those coco pebble treats sound amazing. I think she will enjoy that, thanks! And the sleepover idea? I love it! I'll bring that up with her today... maybe in a few weeks when we have a few more meals under our belt.

Again, I really appreciate your support. I want my bubbly happy go lucky daughter back. I just want her to be healthy and happy.

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My entire family likes the SamMills corn pasta. I can get a 16 oz package for about $2.50. We have tried many different brands of gluten free pasta and come back to that one. My gluten eating husband even likes it. We used to fix regular pasta for him and gluten free for the rest of us, but he says the Sam Mills tastes fine and it's not worth it to make both anymore. I have served it to my parents and inlaws without complaint also.

It would be better for the other kids and dad to not say anything about the food in front of her. She's feeling upset as it is and that won't help. Of course I know how siblings can be. :P Tell dad that there is plenty for her to eat. I used to get comments from coworkers like "what can you eat? I would starve." I smile a little devilish grin at them. I tell them "do I look like I'm starving?" The answer is no since I'm about 20-30 pounds overweight. ;) Anyway, I like to make things and take it to work to share. One girl I work with loves anything I make. She said I could make poop taste good. :lol::o

Once you get it down pat, you and she will realize she won't be deprived.

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My 11 year old daughter was just diagnosed on Friday. She has not taken well to the news at all. She has been moody & angry ever since. What bothers me the most is she is not eating well at all. On Friday after work my husband picked her up a gluten free pizza and chex cereal. She hated the pizza. She didn't eat the rest of the night. The next day she had some cereal & liked it. We went to the store & got a few things. She was not interested in picking anything out except for brownie mix that she hasn't touched yet. She wants to make it herself but keeps saying she doesn't feel like it. She tried making toast, she hated the bread so she ate more cereal. All she ate today was cereal & a few strawberries. She wont eat! I don't know what to do. We are seeing a dietician Wednesday. Oh, wait at Old Navy today in the check out line she was looking through the impulse items & found an almond coconut bar labeled gluten & wheat free. I let her get it of course & she liked it. Other than that she has only eaten chex.

I was diagnosed finally at the age of 21 (almost 2 years ago) and it was very difficult dealing with college. My best advice is to help her focus on the foods she can eat, not just the ones she can't. It is very difficult to have health restrictions at any age, but let her know that it is ultimately her choice to tell people of her condition. I have lost jobs due to celiac disease because I went undiagnosed for so long. And I need (according to my GI) 1/3 of my intestine removed because of the damage the gluten has caused. So encourage, encourage, encourage. You are obviously a great parent for trying so hard to help your child. Also, no one will be able to tell she is living gluten-free. I have also noticed that being gluten-free is becoming a fad, very strange I know. So she may find that people think it is cool that she is gluten-free. Also a tip for you, save all receipts for her food. You can fill out a form at tax time and actually get money back on your taxes for the gluten free food you have to buy because it is more expensive than food with gluten. celiac disease is a very costly illness. Check out http://www.celiaccentral.org/shopping/tax-deduction-guide-for-gluten-free-products/ for all the info you need for the tax deduction. All meat is gluten free and a lot of chips (frito lays, utz, etc.) are gluten-free without having to be special. Bi-Lo has a lot of products called Amy's that I love. As far as bread goes, I would stay away from the frozen bread at the supermarket and purchase rice flower and help your child bake her own bread. Cooking is a great skill and very enjoyable (ok, I'm biased because I am a chef) but fresh baked bread is hard to beat and tastes a million times better than the $6 a loaf frozen stuff. Hope this helps and good luck!

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Something I saw in one of the books I've been reading that was really interesting was this: try to think about your food as special, as in, everyone else wants YOUR special food. It was a tip for raising kids, that if you can get them to think that, you've succeeded; I think it's useful all the time. When I am eating strawberries with whipped cream and everyone else is eating cake, and people keep sneaking some of the extra strawberries... it's because they are jealous of me. :) At 11 she will probably be cynical if you tell her that directly, but maybe you can try to make her notice that whenever it does happen. And it'll happen more and more often as you get experienced making great gluten-free meals and treats. :)

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Kelly, does your daughter show any interest in cooking and baking? When I was first diagnosed, my gluten-eating granddaughter loved to help bake. She was 11 at the time (13 now). She recently spent a few days with me and we made gluten-free cinnamon-raisin bread, pizza and lemon-blueberry pound cake. We were also going to make cupcakes but ran out of time.

While these were made from scratch, there are also some good mixes available. Betty Crocker gluten-free mixes are readily available in lots of grocery stores and Wal-Mart. King Arthur Flour has some good ones, too. Gluten-Free Bisquick makes good pancakes and waffles and I also like Pamela's Baking & Pancake Mix. There are lots more but these came to mind quickly.

Maybe if she could help you, she might enjoy eating, too. Just a thought.

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Does your family have any favorite meals which are naturally gluten free? Lamb with vegetables on rice with a side salad? Chicken with mashed potatoes and carrots? There are many options. How about breakfast of scrambled eggs with cheese and a glass of milk? Prepare meals like that for the whole family and sit down together. She will have fewer problems with the transition if it is a normal part of your family life. It is a hard adjustment at first, but she will accept it with time.

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For the record, when my daughter was diagnosed when she was 16-17 months old, she was really mad. It is a process. Talk it out. These are her true feelings, and who can say she is not justified?

list of gluten intolerant or Celiac ;)

Vollmer, American female swimmer ~Gold medal london 2012

Jack Black

Emily Rossum

miley Cyrus

keith olberman

and... (maybe some others can add to the list and correct spelling) She is not the only person in the world who has to deal with this. (sometimes it's true ~ misery loves company, then you aren't so miserable.) :D

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My 11 year old daughter was just diagnosed on Friday. She has not taken well to the news at all. She has been moody & angry ever since. What bothers me the most is she is not eating well at all. On Friday after work my husband picked her up a gluten free pizza and chex cereal. She hated the pizza. She didn't eat the rest of the night. The next day she had some cereal & liked it. We went to the store & got a few things. She was not interested in picking anything out except for brownie mix that she hasn't touched yet. She wants to make it herself but keeps saying she doesn't feel like it. She tried making toast, she hated the bread so she ate more cereal. All she ate today was cereal & a few strawberries. She wont eat! I don't know what to do. We are seeing a dietician Wednesday. Oh, wait at Old Navy today in the check out line she was looking through the impulse items & found an almond coconut bar labeled gluten & wheat free. I let her get it of course & she liked it. Other than that she has only eaten chex.

My 13 year old middle school daughter was diagnosed 4 months ago after missing 4 months of school for debilitating stomach problems (which turned out to be celiac). Her friends eat her gluten-free (gluten free) food when they come here and when she goes to their house and takes food with her, and they love it. Best cure for feeling like an oddball. :)

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My 11 year old daughter was diagnosed a few weeks ago. It's a grieving of sorts. Fast food. Birthday parties. All of that. I keep telling her to think of perspective - there are far worse things to have. She is an avid baker and is just starting to show an interest in gluten free baking. I've gone gluten free with her - I'm finding I actually feel better - although I tested negative. Adjustment takes time.

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For the record, when my daughter was diagnosed when she was 16-17 months old, she was really mad. It is a process. Talk it out. These are her true feelings, and who can say she is not justified?

list of gluten intolerant or Celiac ;)

Vollmer, American female swimmer ~Gold medal london 2012

Jack Black

Emily Rossum

miley Cyrus

keith olberman

and... (maybe some others can add to the list and correct spelling) She is not the only person in the world who has to deal with this. (sometimes it's true ~ misery loves company, then you aren't so miserable.) :D

Ex pres Bill Clinton and his daughter Chelsea. They seem to be embarassed about it though. Chelsea's wedding cake was gluten free when she got married.

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My dd was 11 when she was diagnosed. My nutritionist told me to buy Gluten Free Grocery Shopping Guide by Matison&Matison. It's been great. It tells regular food that is gluten free (hormel chili, denty Moore beef stew, Doritos , certain Smart Ones, etc. I thought we'd have to go to a specialty store for things but I can find most everything at Kroger or publix. Corn pasta in the health food section of Kroger is great. My family can't tell the difference when I pour Ragu over it! Ragu-another one from the book! I also subscribe to the gluten free option of emeals.com. LIfesaver! 9 months ago I was you and I cried in the parking lot after my first shopping trip. It does get better. I promise. Please pm me if you need more ideas. I can give you tons!!!!!

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My 11 year old daughter was just diagnosed on Friday. She has not taken well to the news at all. She has been moody & angry ever since. What bothers me the most is she is not eating well at all. On Friday after work my husband picked her up a gluten free pizza and chex cereal. She hated the pizza. She didn't eat the rest of the night. The next day she had some cereal & liked it. We went to the store & got a few things. She was not interested in picking anything out except for brownie mix that she hasn't touched yet. She wants to make it herself but keeps saying she doesn't feel like it. She tried making toast, she hated the bread so she ate more cereal. All she ate today was cereal & a few strawberries. She wont eat! I don't know what to do. We are seeing a dietician Wednesday. Oh, wait at Old Navy today in the check out line she was looking through the impulse items & found an almond coconut bar labeled gluten & wheat free. I let her get it of course & she liked it. Other than that she has only eaten chex.

My 11 year old daughter was recently diagnosed too. It's getting easier. Such a huge adjustment. I'm finding that for the most part it's easier to just cook - meat, rice/potatoes, veggies. My girl loves to bake - we bought a flour mix, and so far it's worked in every "flour" recipe she's tried. We haven't ventured to a restaurant yet - still researching that. The processed foods are very expensive, which is another reason I'm cooking more. It's very hard - kids keep thinking about everything that they're missing out on. My daughter's weight went dangerously low - she was hospitalized. Putting it back on is proving to be a challenge. Let me know if you'd like to talk.

Gwen

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    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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    • I think what is going on for a lot of people experiencing being glutened by vapours is that they are perhaps mis-attributing the experience to the vapour, when in fact they were glutened by other means (swallowing airborne flour particles, splatter, touching contaminated surfaces). Proteins (eg. gluten) are heavy, and cannot evaporate or be suspended in water droplets that have evaporated.  I have worked for many years in different lab settings working with dangerous chemicals and biohazardous materials (human/animal tissue and bodily fluids). You should see what I am legally required to wear when handling materials that are merely hazardous by ingestion or particulate/droplet inhalation! I have to wear gloves, a mask and two layers of protective clothing. I am not allowed to bring food or water into the same room at all, and must remove all clothing/protective equipment before leaving the experiment room. Why all this? Because humans are really, really bad at touching contaminated surfaces and then touching their faces. This is how you get most of the colds, flus, and stomach viruses you've had in your life. You touched something bad, and touched your face! We wipe stuff on our clothes. Droplets or powders fly up into our faces when we handle stuff, cut, and mix stuff, and we don't notice unless it's "a lot." But we can get sick from much less than "a lot," whether that's gluten or some noxious chemical/pathogen.  I live in a shared kitchen, and I do not go in there when my roommate is cooking. If I'm thirsty, that's too bad, I'll wait. I do no leave anything (food, clean dishes) out unless I am physically present in the kitchen or home alone. I do not prepare food until I have wiped down all surfaces (handles, taps, counter) that I will interact with while preparing my food. I do not allow flour in my kitchen, and do not go into bakeries etc. Before I adopted these policies, I used to get sick a fair bit on a random basis. Now, I am confident that food I prepare in my own shared kitchen is fine, regardless of what my roommates might cook.
    • Nice!  Thanks so much for sharing.  😊
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    • Wow. My older daughter, who is eating gluten-free these days, came to celebrate Father's Day last Sunday. We cooked our traditional pancake breakfast and she brought with her Walmart's Great Value Gluten-free Pancake and Waffle Mix. It was delicious! So happy to see (and taste) so much flavor improvement over the last 10 years for the gluten-free crowd! Here is a link to this mix:
      http://bit.ly/2tnQrzB   Cheers,
      Travis Hiland  
    • Thanks for looking and responding. Hopefully can get in to see a gastroenterologist soon. Will have to wait for regular dr to come back first. Thanks again! 
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