Jump to content

Important Information

This site places cookies on your device (Cookie settings). Continued use is acceptance of our Terms of Use, and Privacy Policy.

  • Sign Up
0
sugarsue

Does This Sound Familiar

Rate this topic

Recommended Posts

Does this behavior sound familiar to anyone? My 8 yr old dd is diagnosed gluten intolerant but she also is diagnosed with PANDAS (neurological reactions to strep infection). The PANDAS causes OCD and other intense behavior problems. She is undergoing some treatment for that and that, along with the gluten free diet have been what we have been doing to try to help her.

This can happen any time during the day but it is much worse at night. She will become worried that I am mad at her. Anything can trigger it. Then she will whine, plead, beg, cry "are you mad? don't be mad? you're mad right? Mommy, Mommy, Mommy, please, don't be mad" etc... and she won't stop. Nothing I do can get her to stop.

I am a mess from this. I can't even begin to explain how horrible it is to experience. I can't breathe, I need to get away, but she follows me everywhere with this. The more I try to get away, the worse she gets. She just won't stop. If I react, that's proof to her that I really am mad. If I don't react, she does not believe me that I'm really not mad.

I have been assuming all of her behavior issues are related to the PANDAS but recently I am wondering if this one is hidden gluten. I have allowed her to eat oats and other items that could have cross contamination, have not always checked her sauces at restaurants, etc. since she never had the gut reaction and is not diagnosed celiac. But recently she has had an obvious reaction to gluten that has made me wonder.

Of course I plan on tightening up her diet right away and see if it helps. I just thought I would come and post to see if this sounds like anything that anyone else experiences. I truly do not know how to handle this. My inability to help her, reason with her or just plain force her to stop is pushing me to the limit and I feel like I am going to lose my mind.

Susan

Share this post


Link to post
Share on other sites

many post on here increased anxiety as a side effect to glutening.

for myself: the tighter i am w my gluten-free diet, the less i've experienced neuro issues such as vestibular migrains. when i do "cheat" i sometimes notice an increase of anxiety related behaviors such as increases in my need to make things work correctly (whether it's my finances, the laundry, or when moving getting things packed) and not "be a burden" on others. when i don't cheat i have no need to dwell on how my daily life may interact with others. i just do my thing.

Share this post


Link to post
Share on other sites

This behavior is similar to what we have experienced over the years with our daughter who was recently diagnosed with Celiacs. She would have terrible outbursts that would start for no apparent reason and then they could last for up to an hour. She would follow me, yelling, chanting, crying etc if I tried to get away. She was inconsolable, would not respond to calm talking, yelling, comforting etc. I recently wondered if perhaps she was bipolar. It was exhausting for both of us. It occurred most often at night and in the mornings, before school, leading to many absences. I honestly feel that she felt so awful and tired from the undiagnosed problem that she was beside herself. This was a very typical behavior for her at age 7-10. We had some improvement as she got older, but the most dramatic improvement has been since we have gone gluten free. I wish you success with the gluten free diet, I know that it has resulted in marked improvement for our dauthter and our family in just one months time. Best wishes!

Share this post


Link to post
Share on other sites

Dear Susan,

I'm fifteen years old and I was diagnosed a few months ago. My mom and I live alone and we are very close. She has been the best person for me through these tough times. I have many similar problems to your daughters and many symptoms stopped after I changed my diet. One of the most important foods to check are the sauces on food. Many sauces have gluten in them. Soy sauce is in a lot of things and it is not gluten free. Since she is so young, go buy some snacks and gluten free foods to replace rather than eliminate. They make a gluten free soy sauce and almost anything by Annie's is gluten free. Also, most meringues and macaroons are gluten free and even ice cream! You need to be there for her. I used to pass out in the bathroom and my mom would always come running. I would always cry because I didnt want her to worry or not sleep, but it made me feel so much better to know that she didnt mind because inside I was truly scared.

I hope that helps!

Jazmine

Share this post


Link to post
Share on other sites

Jazmine, thank you for your perspective as the child. That really helps. I want to be there for her and help her. It's just so hard to do when she feels bad and there is nothing I can do. I hope as she gets older it will get easier.

Share this post


Link to post
Share on other sites

This behavior is similar to what we have experienced over the years with our daughter who was recently diagnosed with Celiacs. She would have terrible outbursts that would start for no apparent reason and then they could last for up to an hour. She would follow me, yelling, chanting, crying etc if I tried to get away. She was inconsolable, would not respond to calm talking, yelling, comforting etc. I recently wondered if perhaps she was bipolar. It was exhausting for both of us. It occurred most often at night and in the mornings, before school, leading to many absences. I honestly feel that she felt so awful and tired from the undiagnosed problem that she was beside herself. This was a very typical behavior for her at age 7-10. We had some improvement as she got older, but the most dramatic improvement has been since we have gone gluten free. I wish you success with the gluten free diet, I know that it has resulted in marked improvement for our dauthter and our family in just one months time. Best wishes!

Lynn, this does sound very similar to my dd. I also have to worry about whether she is exposed to strep so this makes it so complicated. We have been gluten free for so long but really, probably too much of the little exposure. Thanks for the support.

Share this post


Link to post
Share on other sites

Skigirl, I find it very helpful to hear how gluten affects others to try to understand what she is going through. I am allergic to wheat so when I get it I itch. But I don't have the neurological stuff and it's so hard to understand. Do you do anything to help with your anxiety when you get glutened?

Susan

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Who's Online   7 Members, 0 Anonymous, 269 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Jean Duane
    Surmounting Social Situations : Sabotage and Scrutiny Surrounding the Gluten-Free Diet
    Celiac.com 10/17/2018 - In the interviews I conducted last year, the Celiac.com viewers shared with me some disturbing stories about how others either sabotaged their gluten-free diet or how their gluten-free requirements are continually scrutinized and doubted. Here are a few examples:
    A co-worker at my office ate a gluten-containing burrito and thought it would be funny to cross-contaminate my work space.  With his gluten-coated hands, he touched my phone, desk, pencils, pens, etc. while I was not at my desk.  I came back and was contaminated.  I had to take several days off of work from being so sick. The waiter at a restaurant where I was eating dinner asked me if I was really “a celiac” or if I was avoiding gluten as a “fad dieter.” He told me the food was gluten-free when he served it, only to come up to me after I ate the dinner and admit there was “a little” gluten in it. My cleaning people were eating Lorna Doones (gluten-containing cookies) while cleaning my gluten-free kitchen, cross-contaminating literally everything in it. When I noticed I exclaimed, “I am allergic to gluten, please put your cookies in this plastic bag and wash your hands.”  They chided, “You have insulted our food.  We are hungry and we will eat anything we want to, when we want to.” At a family dinner, Aunt Suzie insisted that I try her special holiday fruit bread. In front of everyone around the table, she brushed off my protests and insisted that I over exaggerated my food sensitivities saying, “a little bit wouldn’t hurt you.”   These are but a few of an exhaustive list of situations that we regularly contend with. What can possibly be the rationale for any of this conduct?  I’m providing some recent headlines that may impact the attitudes of those we interact with and would like to hear what you think influence this behavior (see questions below). 
    Recently, the New York Times published an article entitled, “The Myth of Big, Bad Gluten.”  The title alone casts doubt on the severity of gluten exposure for those with CD (Myth, 2015)   In his political campaign, Senator Ted Cruz stated that if elected President, he would not provide gluten-free meals to the military, in order to direct spending toward combat fortification (Wellness, 2/18/16).  Business Insider.com called Tom Brady’s gluten, dairy free diet “insane” (Brady, 2017). Michael Pollen is quoted as saying that the gluten-free diet was “social contagion.” Further, he says, “There are a lot of people that hear from their friends, ‘I got off gluten and I sleep better, the sex is better, and I’m happier,’ and then they try it and they feel better too.  [It’s] the power of suggestion” (Pollan, 2014). Jimmy Kimmel said, “Some people can’t eat gluten for medical reasons… that I get. It annoys me, but that I get,” and proceeded to interview people following a gluten-free diet, asking them “what is gluten.” Most interviewed did not know what gluten is. (ABC News, 2018). Do headlines like this enable others to malign those of us making our dietary needs known?  Do these esteemed people talking about gluten cast doubt on what we need to survive? 
    Humans are highly influenced by others when it comes to social eating behavior. Higgs (2015) asserts that people follow “eating norms” (p. 39) in order to be liked. Roth, et al. (2000) found that people consumed similar amounts of food when eating together.  Batista and Lima (2013) discovered that people consumed more nutritious food when eating with strangers than when eating with familiar associates. These studies indicate that we are hypersensitive of what others think about what we eat. One can surmise that celebrity quips could also influence food-related behaviors. 
    Part of solving a social problem is identifying the root cause of it, so please weigh in by answering the following questions:  
    How do you handle scrutiny or sabotage of others toward your dietary requirements? Please speculate on what cultural, religious or media influences you suppose contribute to a rationalization for the sabotage and/or scrutiny from others when we state we are observing a gluten-free diet? Are people emulating something they heard in church, seen on TV, or read online?    We welcome your answers below.
    References:
    ABC. (2018). Retrived from https://abcnews.go.com/Health/video/jimmy-kimmel-asks-what-is-gluten-23655461  Batista, M. T., Lima. M. L. (2013). Who’s eating what with me? Indirect social influence on ambivalent food consumption. Psicologia: Reflexano e Critica, 26(1), 113-121.  Brady. (2017). Retrieved from https://www.businessinsider.com/tom-brady-gisele-bundchen-have-an-insane-diet-2017-2  Higgs, S. (2015). Social norms and their influence on eating behaviors. Appetite 86, 38-44. Myth. (2015). Retrieved from https://www.nytimes.com/2015/07/05/opinion/sunday/the-myth-of-big-bad-gluten.html  Pollan, M. (2014). Retrieved from https://www.huffingtonpost.com/2014/05/14/michael-pollan-gluten-free_n_5319357.html  Roth, D. A., Herman, C. P., Polivy, J., & Pliner, P. (2000). Self-presentational conflict in social eating situations: A normative perspective. Appetite, 26, 165-171. Wellness. (2016). Retrieved from  https://www.huffingtonpost.com/entry/ted-cruz-gluten-free-military-political-corectness_us_56c606c3e4b08ffac127f09f

    Jefferson Adams
    Woman Calls Radio Show to Admit Lying About Gluten-Free Baked Goods
    Celiac.com 10/16/2018 - Apparently, local St. Louis radio station Z1077 hosts a show called “Dirty Little Secret.” Recently, a woman caller to the show drew ire from listeners after she claimed that she worked at a local bakery, and that she routinely lied to customers about the gluten-free status of baked goods.
    The woman said she often told customers that there was no gluten in baked goods that were not gluten-free, according to local tv station KTVI.
    Apparently the woman thought this was funny. However, for people who cannot eat gluten because they have celiac disease, telling people that food is gluten-free when it is not is about as funny as telling a diabetic that food is sugar-free when it is not. Now, of course, eating gluten is not as immediately dangerous for most celiacs as sugar is for diabetics, but the basic analogy holds.
    That’s because many people with celiac disease suffer horrible symptoms when they accidentally eat gluten, including extreme intestinal pain, bloating, diarrhea, and other problems. Some people experience more extreme reactions that leave them in emergency rooms.
    As part of a story on the “joke” segment, KTVI interviewed celiac sufferer Dana Smith, who found the punchline to be less than funny. “It’s absolutely dangerous, somebody could get very sick,” said Smith. 
    KTVI also interviewed at least one doctor, Dr. Reuben Aymerich of SSM St. Clare Hospital, who pointed out that, while celiac disease is “not like diabetes where you can reduce the amount of sugar intake and make up for it later, it’s thought you need to be 100 percent compliant if you can.”
    For her part, Smith sought to use the incident as a teaching moment. She alerted the folks at Z1077 and tried to point out how serious being gluten-free is for many people. Mary Michaels, owner of Gluten Free at Last Bakery in Maryville, Illinois, says it’s time people became more respectful.
    “I wouldn’t make fun of you if you had diabetes or a heart condition it’s kind of like that,” Michals said.
    We will likely never know if the radio station caller was telling the truth, or just putting listeners on. The Z1077 morning team did post a follow-up comment, which stated that they take celiac disease seriously, and that they did not intend to offend anyone. One host said his mom has celiac disease.
    It’s good to see a positive response from the radio station. Their prank was short-sighted, and the caller deserved to be called out on her poor behavior. Hopefully, they have learned their lesson and will avoid such foolishness in the future. Let us know your thoughts below.

    Jefferson Adams
    New Study Says One in Three 'Gluten-Free' Restaurant Foods Contain Gluten
    Celiac.com 10/15/2018 - If you’re on a gluten-free diet for medical reasons, then you’re probably already cautious about eating out. A new study tells us exactly why people with celiac disease and other gluten-sensitive conditions have reason to be very careful about eating out.
    According to the latest research, one in three foods sold as "gluten-free" in U.S. restaurants actually contain trace levels of gluten.
    This is partly due to the fact that the gluten-free diet has become popular with many non-celiacs and others who have no medical need for the diet. That has led many restaurants to offer gluten-free foods to their customers, says study author Dr. Benjamin Lebwohl, of Columbia University's Celiac Disease Center. 
    But, if this research is any indication, too many restaurants don’t do a good job with gluten-free. For the study, more than 800 investigators set out to assess the true gluten content of dishes listed as "gluten-free" on menus. Armed with portable gluten sensors, they tested for gluten levels that met or exceeded 20 parts per million, the standard cutoff for any gluten-free claim.
    Based on more than 5,600 gluten tests over 18 months, the investigators determined that 27 percent of gluten-free breakfast meals actually contained gluten. At dinner time, this figure hit 34 percent. The rise could reflect a steady increase in gluten contamination risk as the day unfolds, the researchers said.
    Off course, the risk is not all equal. Some restaurants are riskier than others. Unsurprisingly, the biggest culprit seems to be restaurants that offer gluten-free pastas and pizzas. Nearly half of the pizza and pasta dishes from those establishments contained gluten, according to the study.
    Why is that? Well, as most folks with celiac disease know all too well,  kitchens aren’t really set up to segregate gluten, and "sharing an oven with gluten-containing pizza is a prime setting for cross-contamination," says Lebwohl. Also, too many restaurants use the same water to cook gluten-free pasta as they do for regular pasta, which contaminates the gluten-free pasta and defeats the purpose.
    Moreover, although the U.S. Food and Drug Administration regulates gluten-free labels on packaged food products, there is currently no federal oversight of gluten-free claims in restaurants. 
    The results of the study will be presented today at a meeting of the American College of Gastroenterology, in Philadelphia. Research presented at meetings is usually considered preliminary until published in a peer-reviewed medical journal.
    In the absence of federal enforcement at the restaurant level, the burden for making sure food is gluten-free falls to the person doing the ordering. So, gluten-free eaters beware!
    These results are probably not surprising to many of you. Do you have celiac disease? Do you eat in restaurants? Do you avoid restaurants? Do you have special tactics?  Feel free to share your thoughts below.
    Read more at UPI.com

    Carol Fenster, Ph.D.
    Almost Homemade: Using Ready-Made Cereals and Crackers in Home Cooking
    Celiac.com 10/13/2018 - Two important principles sort of collided in my brain the other day.  One was the recent recommendation to increase our intake of whole grains based on the new food pyramid from the USDA.  The other was our interest in time-saving prepared foods to make dishes that are at least partially homemade.
    About the same time these two ideas were melding in my brain, I realized how many wonderful new gluten-free cereals and crackers are now on the market.  I wondered if we could boost our whole grain intake by using ready-made gluten-free cereals or crackers in home cooking.  While not all of the cereals and crackers are truly “whole” grain, most are only partially refined and still quite nutritious.
    So, here’s my idea: One of my favorite desserts is a fruit crisp.  You can make it any time of the year, using fruits in season (in my case, fruits that have sat on the kitchen counter past their prime, yet are still edible).  In the fall it might be apples.  Winter is perfect for pears.  I like stone fruits during summer, such as peaches, plums, or cherries.  Or, if you’re really desperate just open a can of whatever fruit appeals to you.
    Revving Up Your Home Cooking with Ready-Made Cereals 
    Here’s where the new cereals come in.  Prepare the fruit filling according to any fruit crisp recipe or use the recipe I provide here.  For the topping, I like to toss Nutty Rice or the new Nutty Flax cereal from Enjoy Life Foods with maple syrup (or honey, brown rice syrup, or agave nectar).  Add ground cinnamon to taste and then sprinkle it over the prepared fruit.  Spray with cooking spray and bake at 350°F until the fruit is done and the topping is browned. 
    Sometimes to speed things up, I microwave the covered fruit filling for 5-10 minutes on high, then uncover it, add the topping, and bake at 350°F for 15-20 minutes or until the fruit is soft and the topping is crisp and nicely browned.  I particularly like the Nutty Flax cereal because it uses both flax and sorghum for a nutritious combination.  Add extra spices such as 1/8 teaspoon each of nutmeg, allspice, or cloves for even more flavor.  
    I also like to use the granola from Enjoy Life Foods as the topping for these fruit crisps. It’s already sweetened and flavored, available in Cinnamon Crunch, Very Berry Crunch, and Cranapple Crunch.  All it needs is a little oil.  Of course, if you prefer, you can toss it with a little extra cinnamon plus some maple syrup (or honey, brown rice syrup, or agave nectar) to heighten the sweetness.  Add extra spices such as 1/8 teaspoon each of nutmeg, allspice, or cloves for even more flavor.  Sprinkle over filling and spray with cooking spray.
    You can also add about ½ cup of this granola to your favorite bran muffins, cookies, or quick breads.  The granola supplies a nice crunch and additional flavor and nutrients.  Depending on your recipe, you may need to add more liquid to compensate for the cereal.  
    Quinoa cereals by Altiplano Gold are packaged in individual serving packets, making them especially easy to incorporate into our baking.  They come in three flavors––Organic Oaxacan Chocolate, Spiced Apple Raisin, and Chai Almond––and just need boiled water to make a hot cereal.  Quinoa is a powerhouse of nutrients so I like to use the cereals in additional ways as well.
    Using the same concept for the fruit crisp above, I just sprinkle the Spiced Apple Raisin or Chai Almond dry cereal on the prepared fruit filling.  Since the cereal is already sweetened and flavored, it only needs a little cooking spray.  Bake at 350°F for 15-20 minutes.  If your fruit needs additional cooking time (such as apples) try the microwave method I discuss above.
    You can add ½ cup of the Chocolate flavor to a batch of chocolate brownies or chocolate cookies for added fiber and nutrients.  Depending on the recipe, you may need to add a little extra liquid to compensate for the cereal which counts as a dry ingredient. 
    Creative Uses of Crackers in Home Cooking
    New crackers by the whimsical name of Mary’s Gone Crackers are chock-full of fiber and nutrients.  They come in Original and Caraway flavors and are a nutritious treat by themselves.  I also take them with me on trips because they travel so well. 
    One creative way to use these crackers and appease your sweet tooth is to dip the whole Original-flavor cracker halfway into melted chocolate.  Ideally, let the chocolate-dipped crackers cool on waxed paper (if you can wait that long) or else just pop them into your mouth as you dip them.  You can also place a few crackers on a microwave-safe plate, top each with a few gluten-free chocolate chips and microwave on low power until the chips soften.  Let them cool slightly so the chocolate doesn’t burn your mouth.  These crackers also work great with dips and spreads. 
    Aside from dipping in chocolate, these crackers have additional uses in baking.  For example, finely crush the Original or Caraway flavor crackers in your food processor and use them as the base for a crumb crust for a quiche or savory tart.  The Original flavor would also work great as a replacement for the pretzels typically used for the crust in a margarita pie.  Just follow your crumb crust recipe and substitute the ground crackers for the crackers or pretzels. 
    The crackers have very little sugar, but the Original flavor will work as a crumb crust for a sweet dessert as well.  Again, just follow your favorite recipe which will probably call for melted butter or margarine plus sugar.  Press the mixture into a pie plate and bake at 350°F for 10 minutes to set the crust.  Fill it with a no-bake pudding, custard, or fresh fruit.
    The crushed crackers can also be added to breads and muffins for a fiber and nutrient boost.  Depending on how much you add (I recommend starting with ½ cup) you may need to add more liquid to the recipe.  
    I’ve just given you some quick ideas for ways to get more grains into your diet and streamline your cooking at the same time.  Here is an easy version of the Apple Crisp I discuss in this article.  I bet you can think of some other opportunities to make our gluten-free diet even healthier with wholesome cereals and crackers. 
    Carol Fenster’s Amazing Apple Crisp
    You may use pears or peaches in place of the apples in this easy home-style dessert. If you prefer more topping, you can double the topping ingredients. This dish is only moderately sweet; you may use additional amounts of sweetener if you wish. Cereals by Enjoy Life Foods and Altiplano Gold work especially well in this recipe. The nutrient content of this dish will vary depending on the type of fruit and cereals used.
    Filling ingredients:
    3 cups sliced apples (Gala, Granny Smith, or your choice) 2 Tablespoons juice (apple, orange)   2 Tablespoons maple syrup  (or more to taste) ½ teaspoon cornstarch  1 teaspoon vanilla extract ¼ teaspoon ground cinnamon ¼ teaspoon salt Topping ingredients:
    ¼ cup ready-made cereal ¼ cup gluten-free flour blend of choice ¼ cup finely chopped nuts 2 Tablespoons maple syrup  (or more to taste) 2 Tablespoons soft butter or margarine 1 teaspoon vanilla extract ¼ teaspoon ground cinnamon ¼ teaspoon salt Directions:
    1.  Preheat oven to 375F.  Toss all filling ingredients in 8 x 8-inch greased pan. 
    2. In small bowl, combine topping ingredients. Sprinkle over apple mixture. Cover with foil; bake 25 minutes. Uncover; bake another 15 minutes or until topping is crisp. Top with vanilla ice cream or whipped cream, if desired.  Serves 6.

    Jefferson Adams
    Nestlé Debuts Gluten-Free Snack Bar Line Called
    Celiac.com 10/12/2018 - Snack giant Nestlé has announced the debut of a new line of gluten-free snack bars called "Yes!"
    The bars are made with combinations of fruits, vegetables, and nuts, and will contain no artificial sweeteners, flavors, colors or preservatives. Some bars do contain added sugar, but those made with fruits and vegetables do not. 
    The bars come in five flavors: Delicious Beetroot & Apple; Lively Lemon, Quinoa & Chilli; Tempting Sea Salt Dark Choc & Almond; Sumptuous Cranberry & Dark Choc; Delightful Coffee; and Dark Choc & Cherry.
    Yes! bars will be available in UK and Ireland. All Yes! bars are suitable for vegetarians, while the fruit and vegetable versions are vegan-friendly.
    No word yet on whether Nestlé plans to bring Yes! bars to the U.S. any time soon. 

×