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momof2

New-14 Month Old Just Diagnosed!

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I have been peeking in on this forum since my daughter has been through testing the past 3 weeks. We found out earlier this week, that yes, her blood tests came back positive, and she has Celiac Disease. Her biopsy is scheduled for next week, but it is a no brainer in our book. Both tests came back positive, and since changing her diet to gluten-free, her poops have changed, personality, and she has started smiling again. This website is a Godsend! I have learned a lot from all of you, and the more we learn about this diease, the easier it seems to be. I just thought I would introduce myself, because I am sure I will be on here often! My 4 year old daughter is getting tested, as well as me and my hubby. My dad is also getting tested, since he has been having symptoms for 2 years now, and the Dr.'s keep putting him through tests, but never has he had a celiac test! We bought the book by Danna Korn, "Kids with Celiac Disease." I can't put it down! It is a must read for any of you starting out like me, who can use any info possible!

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Just remember, if you've already changed her diet then her biopsy may NOT come back positive. Our Pedi. GI guy told us not to change anything until after the biopsy so that everything would test correctly. He just so wanted to be able to give us a "true" diagnosis.

My son is 2 1/2, isn't it sooo horrible that they can't just TELL us what they are feeling? Or, if they have a "reaction" what they ate? My son had wicked gas pains the other day, and I don't think he had any gluten but that was my first reaction. Never mind the fact that he NEVER had any symptoms like that pre-diagnosis (our only sign was that he dropped 4 lbs between February and May and suddenly became VERY lazy....)

I loved the Danna Korn book too, as did my mother and mother-in-law and the daycare provider! My mom bought her own copy even before I had mine, and I bought one for daycare.

My best advice? Keep coming to this board. It's a GREAT resource and support.

Bridget

Georgia, VT USA

Mother of Brennan, 2 1/2, celiac disease since June 2004

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Put her back on gluten if you are going to do the biopsy, if she is already feeling better that is grreat but if your doctor wants to have the ibopsy then do it, it is so fast, so simple, and very easy, this is cxxoming from a 14 yr. old who has had this about 5 times....... If she feels better and your doctor doesn't need you to have the biopsy then the blood tests and a dietary improvement should be enough, The healing process has already started and then it might not show up in the biopsy because it can heal very quickly even though you have symptoms for a while there--after...

Email me or PM me with questions

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Hello!

I just wanted to say hello and welcome to this 'wonderful' place. I really is a Godsend to have people out there with Celiac to better understand what it is all about. I'm pretty new as well, my daughter was diagnosed in February, and my hubby, mother, and myself are getting tested very soon. Good luck with everything, and if you ever have questions ask away!!! Everyone here has already taught me so much in the few weeks I been a member, it is an amazing group of people!

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Thanks for the introductions! This is such a scary thing for my family to be going through, and having this forum available makes me feel more at ease about this diagnoses. The GI Dr. first said to put her back on Gluten for a few weeks and then do a biopsy, but then when I told her my reservations on going back to the "old Abbey". the sad, hurting, bloated, and pooping every hour girl, I said I didn't want to do it. Then, she told us that having her gluten-free for only 2 weeks won't make a difference. She said that her intestines can't repair themselves that quick. So she said, keep her gluten-free, and we will rush the biopsy. BUT I have been thinking that it would SUCK to have the biopsy, and it come back negative because her body repaired quicker than the GI Dr. thought she would, so then we would have to put her back on Gluten and do another biopsy. Which brings me to my next question...why have some people had more than 1? I thought that 1 test is all it takes, and is 100% accurate? Why have a repeat?

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Welcome. I have a 8 month old (8 months today!!) who has celiac.

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Your child's intestines might repair that fast but if your doctor is experienced with celiac, residual damage should still be visible. You can also have positive blood tests but no visible damage, the person doing the biopsy can fail to take enough samples, or the samples that are taken miss the places where the damage happened. So a biopsy is no slam dunk. You need an experienced GI and an experienced lab.

But even if the biopsy is negative, why go back to gluten and have another? Your child might have to eat gluten for as long as three months. If you have two positive tests, I believe that means there's a 98 percent chance she has celiac disease. Add in the improvement on the diet and I'd say that's about 100 percent.

As for two biopsies, for some reason they used to put you on the diet to see if you improved. If you did, they took you off the diet and did another biopsy to see if damage returned. Either that or they left you on the diet and did another biopsy to see if the damage was gone. Now, improvement on the diet is considered proof enough. Generally speaking, they don't do a second one unless you DON'T improve.

After all this settles, make sure you, your husband, and any other children (if any) get tested, even if you don't have symptoms. I barely had any symptoms at all until I was so sick I had to be hospitalized, and my father, who was positive, had no symptoms at all.

richard

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    Jefferson Adams
    Human Leukocyte Antigen DQ2/DQ8 More Common in Women with History of Stillbirth
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    Jean Duane
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    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
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    Jefferson Adams
    New Study Says One in Three 'Gluten-Free' Restaurant Foods Contain Gluten
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    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.
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    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.  
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    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.
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    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.

  • Posts

    • Maureen and Cyclinglady, Of the foods you listed. . .. I would focus on the Chocolate. Chocolate has Tyramine in it and it could/can cause rashes that  might be confused for DH. Sometimes Tyramine get's confused for/in high sulfite foods as triggers. Here is a great overview article on this topic. http://www.chicagotribune.com/lifestyles/health/sc-red-wine-headache-health-0608-20160525-story.html you might also have trouble with headaches if it tyramine is causing you your trouble. People who have trouble Tyramine might also have trouble with consuming cheeses. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2738414/ As for the Milk causing/triggering your DH don't rule Adult onset dairy allergy. While rare it does occur in the literature/research when you search it out. I am including the research here in the hopes it might help you or someone else entitled "Adult onset of cow's milk protein allergy with small‐intestinal mucosal IgE mast cells" https://onlinelibrary.wiley.com/doi/10.1111/j.1398-9995.1996.tb04640.x It is generally thought most of grow out of a Milk Allergy at approx. 3 years old. But for some lucky one (I guess) we never do apparently.  (I speak for my friend on this board JMG).  He found out he was having trouble with dairy as an adult better never realized until about 6 months ago. With delayed onset allergies it is often hard to tell if it (allergen) is effecting us because we might not associate it with our dairy consumption because it might happen a day or two latter. See this WHFoods article about food allergens/sensitivies.  It is very long/exhaustive but it is very helpful if you have time to study it in more detail. http://www.whfoods.com/genpage.php?pfriendly=1&tname=faq&dbid=30 I will quote some key points for your information. Symptoms of Food Allergies "The most common symptoms for food allergies include vomiting, diarrhea, blood in stools, eczema, hives, skin rashes, wheezing and a runny nose. Symptoms can vary depending upon a number of variables including age, the type of allergen (antigen), and the amount of food consumed. It may be difficult to associate the symptoms of an allergic reaction to a particular food because the response time can be highly variable. For example, an allergic response to eating fish will usually occur within minutes after consumption in the form of a rash, hives or asthma or a combination of these symptoms. However, the symptoms of an allergic reaction to cow's milk may be delayed for 24 to 48 hours after consuming the milk; these symptoms may also be low-grade and last for several days. If this does not make diagnosis difficult enough, reactions to foods made from cow's milk may also vary depending on how it was produced and the portion of the milk to which you are allergic. Delayed allergic reactions to foods are difficult to identify without eliminating the food from your diet for at least several weeks and slowly reintroducing it while taking note of any physical, emotional or mental changes as it is being reintroduced." Here is their information on Tyramine's. Tyramine "Reactions to tyramine (an amino acid-like molecule) or phenylalanine (another amino acid-like molecule) can result from eating the following foods: Fermented cheeses Fermented Sausage Chocolate Sour Cream Red wine Avocado Beer Raspberries Yeast Picked Herring Symptoms of tyramine intolerance can include urticaria (hives), angioedema (localized swelling due to fluid retention), migraines, wheezing, and even asthma. In fact, some researchers suggest that as many as 20 percent of migraines are caused by food intolerance or allergy, and tyramine intolerance is one of the most common of these toxic food responses." Here is an old thread on tyramine and especially how it can trigger headaches. https://www.celiac.com/forums/topic/95457-headache-culprit-is-tyramine/ I would also suggest your research a low histamine food diet.  Rashes/hives etc. can be triggered my disregulaton of histamine in the body. The other thing in chocolate that might be causing your problems is Sulfites. Here is a website dedicated to a Sulftie allergy. http://www.allergy-details.com/sulfites/foods-contain-sulfites/ Chocolate bars are on their list of sulfite contaning foods but probably most noted in dried fruits and red wine. Knitty Kitty on this board knows alot about a sulfite allergy. I want to go back to the possible dairy allergy for a second as a possible trigger. . .because it has been established as connected to DH . . .it is just not well known. Here is current research (as I said earlier) most dairy allergies are studied in children but it does occur in approx. 10 pct of the GP unless your of Asian descent where it is much more common. https://www.ncbi.nlm.nih.gov/pubmed/29555204 quoting the new research from this year on children. "When CMP (Cow's Milk Protein) was re-introduced, anti-tTG increased, and returned to normal after the CMP was withdrawn again." and if adults can also (though rarely) it seem develop "Adult onset of cow's milk protein allergy with small‐intestinal mucosal IgE mast cells" (see research linked above) as the research shows  you should at least trial removing dairy from your diet if you haven't already and see if your DH doesn't come back when you re-introduce it. It just takes 15 or 20 years for medical doctor' to incorporate new research/thinking into clinical practice.  And note the research on this happening in adults is 20+ years old and as far I know doctor's . . . are not aware of this.  I know I wasn't until recently and I research things alot of to help myself and my friends. But I know you can't do what you don't know about.  So this is why I am trying to share what I learned so that other might be helped and this research might not  lay hidden another 20 years before doctor's and their Celiac/DH patients become aware of it. And if it helps you come back on the board and let us know so it can help others too! If it helps you it will/can help someone else! if they know it helped you then they will/can have hope it might help them too and why I share and research these things for others'. . . who don't know or don't have time to research this for themselves. I hope this is helpful but it is not medical advice. Good luck on your continued journey. I know this is a lot of information to digest at one time but I hope at least some of if it helpful and you at least have a better idea of what in your chocolate could be causing your DH (idiopathic) as the doctor's say (of an unknown cause mild) DH symptom's. Or at least it is not commonly known yet that Milk can also cause trigger (DH) in children and adults who have a Milk allergy undiagnosed. . .because we don't don't typically think  or associate it with adults like maybe we should if we are not of Asian descent. Maureen if this doesn't help you you might want to start a thread in the DH section of the forum. As always  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 hooe you can get some answers with your new GI doc.
    • Many of us deal with doctor issues and diagnosis, you got a really bad draw indeed. Most doctors dismiss Celiac as their is no money in the cure for them IE a gluten free diet and not medications.

      Keep up updated on your new doctor and testing, good to see you finally found one that listens and can help, I got through on doc #5 I think it was.
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