Jump to content
  • Sign Up

Rate this topic

Recommended Posts

Hi everyone 

My 7 year old daughter was juat diagnosed 2 days ago by a celiac blood test (after over 2 years of constant stomach aches, constipation, unexplained anemia and headaches). Should she have a biopsy done as well? I'm on the fence as it can be a little invasive and the bloodwork already indicated that she has the disease. Her GP doesn't think it's needed. We put her on gluten free right away so she has been gluten free for 2 days now. If we decide to to the biopsy, does she need to go back on gluten or will the short time she's been off not make a difference on the biopsy? Part of me wants her to have the biopsy to see what kind of damage is already done. But I don't want to put her through that if it really isn't needed. Does it make a difference for her medically?

Thanks in advance

This is all so new and the more I read the more scary it seems.

  • Like 1

Share this post


Link to post
Share on other sites

Hi Anne,

Welcome to the forum! :)

You are catching your daughters illness very early, and that is a great advantage.  Many people go a very long time before being diagnosed and the damage tends to build then.  But you are helping her get to a beginning recovery stage very early.  Plus children tend to heal faster than adults so that's plus too.

The usual diagnosis process includes the blood antibodies and then an endoscopy.  but some doctors may diagnose without the endoscopy given symptom improvement and antibody decline after going on the gluten-free diet.  But that way of diagnosing is unusual.

The endoscopy is not often a big issue.although she should have been eating gluten for 2 to 4 weeks before it.  Often there is a delay of several months between the blood antibodies and the endoscopy due to scheduling.  I can tell you that people seem to find it harder to stop gluten and then restart for a few weeks before the endoscopy.  It's easier symptom wise to stay on gluten until all the testing is done.

Celiac disease has  genetic component and other members of your family or your husband's family may have the genes also.  Having the genes makes it possible to develop celiac disease, but it is not definite that the person will get it.

There is lots to learn about eating gluten-free and we are glad to help answer questions.

  • Like 1

Share this post


Link to post
Share on other sites

https://www.celiac.com/gluten-free/topic/119661-gluten-free-food-alternative-list-2017/

1 hour ago, AnneR said:

Hi everyone 

My 7 year old daughter was juat diagnosed 2 days ago by a celiac blood test (after over 2 years of constant stomach aches, constipation, unexplained anemia and headaches). Should she have a biopsy done as well? I'm on the fence as it can be a little invasive and the bloodwork already indicated that she has the disease. Her GP doesn't think it's needed. We put her on gluten free right away so she has been gluten free for 2 days now. If we decide to to the biopsy, does she need to go back on gluten or will the short time she's been off not make a difference on the biopsy? Part of me wants her to have the biopsy to see what kind of damage is already done. But I don't want to put her through that if it really isn't needed. Does it make a difference for her medically?

Thanks in advance

This is all so new and the more I read the more scary it seems.

Might check out hte Newbie 101 section for tips on cleaning out your kitchen and making it gluten free. Sort of best for the whole house to be gluten-free or she will most likely end up with slips ups constantly....it happens in a shared house, does does not help residue from gluten foods in pots, pans, glasses, and crumbs can set off weeks of heightened antibodies.  I can help point you at list of safe foods and where to get them to make shopping easier. For now you might consider the further testing unless your doctor will put it in her records as celiac now. The diagnosis will be great for school help, medical help, and for proof shall anything happen to be treated properly say in a hospital.
https://www.celiac.com/gluten-free/topic/91878-newbie-info-101/
https://www.celiac.com/gluten-free/topic/119661-gluten-free-food-alternative-list-2017/

 

Share this post


Link to post
Share on other sites

Hi Anne,

We did the biopsy with our daughter, and although I know it's awful to put your child through these tests, it feels good to have all the necessary data about what's happening.  Although celiac is the most common cause of the elevated antibodies, it's possible it could be caused by a different autoimmune disease, and you really want to know for sure. 2 days off gluten isn't going to ruin the test, but you should consider putting some gluten back in her diet until you make a definitive decision about the biopsy, since reintroducing it later will be harder. Although we'd rather not have done it, the biopsy wasn't all that bad of an experience for us.

http://www.cureceliacdisease.org/faq/will-the-biopsy-continue-to-be-the-gold-standard-for-diagnosis/

 

Good luck.

Share this post


Link to post
Share on other sites

I have the exact same question as you, same situation with my almost 7 year old daughter. So happy to have found this forum. Post what you decide! We have our GI appointment next week and I am scared of putting her under to confirm what we already know to be true from blood tests and symptoms.

Share this post


Link to post
Share on other sites

I was in your shoes in January...after a ttg well over 100, there is little doubt of the cause! I got two opinions and both doctors emphasized the importance of the endo because high antibodies are not always due to celiacs and the only true way to know is to biopsy. I was very concerned about the procedure but she did fine and we saw pictures of her inflamed tummy ?

my other issue with it was that I had taken her off of gluten, about 8 weeks at that time. The first dr told me I’d have to put her back on for a month! She left there in tears saying she didn’t want to hurt anymore. Second dr said no problem- she said she could see what she needed to. Plus, we had had two exposures during that eight weeks with the awful reaction I described in another post. We got in for the procedure within a few days from that apppintment and everything was confirmed both visually and biopsy. I know many doctors say you have to be on gluten to get an accurate result, but our experience was that a short time gluten-free did not in any way impact the test.

good luck to you, it’s all so emotional!!

Share this post


Link to post
Share on other sites

My two year old had a ttg level of 301 when he was diagnosed. His gi dr said a positive genetic test with those high numbers was sufficient to confirm it was celiac without doing the biopsy. We went that route so that we could start him on a gluten free diet immediately. THe genetic test is expensive so I understand some people would rather do the biopsy to confirm, but I’m so happy we went without the biopsy and directly to a gluten free diet. We saw huge improvements within a week! I couldn’t imagine keeping him eating gluten and watching him suffer. I don’t say that to judge others; it’s just how I felt about our personal situation. We are now two years out from his diagnosis and his recent ttg levels were 16! Yay! I agree with the earlier statement about your whole house going gluten free. I know it can be expensive for your whole family to eat gluten free, but it has helped us so much to keep him safe without constantly worrying and second guessing if we did something wrong. Definitely look into replacing kitchen items to avoid cross contamination. We replaced all our pots, pans, baking supplies, plastic items, cutting boards, etc. We may have gone overboard but our stuff was very old and scratched, so I’m sure there was hidden gluten lurking in those items. I love not having to worry every time I feed my son or he is in the kitchen like I have to do anytime we visit friends and relatives or go out in public. Whether you do the biopsy or genetic test, knowing for sure your daughter has celiac will be great. I’m not sure where you live but public schools in Wisconsin allow you to get a 504 plan to give her special accommodations at school to keep her safe. It’s definitely a tricky transition but after a few months you will have felt like you’ve been doing it forever. I’d be happy to send you some food ideas that my four kids love. Best of luck!!

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
5 5

  • Who's Online   1 Member, 0 Anonymous, 134 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Jefferson Adams
    Summertime Peach Caprese Salad (Gluten-Free)
    Celiac.com 09/22/2018 - We’ve done recipes for Caprese salad. We’ve done recipes for peaches. We’ve never done one for peach Caprese salad.
    This gluten-free treat adds fresh peaches for a sweet summery-sweet twist on classic Caprese salad. Easy to make and wonderfully tasty, this recipe is sure to be a hit at your next barbecue or grill session.
    Ingredients:
    1 ripe tomato 1 ripe peach 12-14 leaves of fresh basil 6 oz. ball fresh mozzarella Balsamic vinegar Extra virgin olive oil Directions:
    Slice tomato, peach and mozzarella into ½″ slices.
    Layer the tomato, peach and cheese slices with whole leaves of fresh basil.
    Drizzle with extra virgin olive and balsamic vinegar.
    Season with salt and pepper. 

    Lindsay Cochrane
    Living with Celiac Disease in South Korea
    Celiac.com 09/21/2018 - The English as a Second Language (ESL) pie is so large in countries such as South Korea that there seem to be enough helpings for anyone interested. However, these generous slices may be off limits to individuals with severe food allergies or intolerances, including those with celiac disease. If you have diet restrictions and are thinking of heading to South Korea or another Asian country, the following information will help you decide whether or not this move is a good idea.
    One might think that Asia, the land of rice-based meals, would be a celiac’s paradise. As one naïve dietician told me before I moved to Seoul, “You couldn’t be going to a better place.” This assumption could not be further from the truth. If cooked with traditional ingredients, many local dishes are gluten-free. However, in Korea, wheat flour is now cheaper than other kinds of flour, despite the fact that it has to be imported. Wheat flour and barley are currently the two most common ingredients in Korean food products.
    In Korea, eleven major food allergens must be included on product labels: poultry eggs, milk, buckwheat, peanuts, soybean, wheat, mackerel, crab, pork, peaches, and tomatoes. As for anything else, the Korean Food and Drug Administration states that only the five major ingredients in a product have to be labeled. Furthermore, a label need only include intentional ingredients, not things accidentally mixed into a product through cross-contamination. So you can say goodbye to warnings like: “this product may contain traces of peanuts.” Stricter labeling regulations will be put into effect in September 2006. However, these laws will remain less stringent than those in North America and Europe. According to a source at the KFDA, labeling restrictions are similar in Japan and more lax in China and South East Asia.
    One can easily learn Korean for “I’m allergic to ____” in any phrasebook or from a Korean coworker, friend, or even the guy in the next seat on your Korean Air flight. Yet it is the cultural barrier, not the language barrier, which poses the most difficulties for a celiac.
    Korean culture revolves around the sharing of food due to food shortages during the Japanese occupation; Koreans do not ask, “How are you?” but, “Have you had your meal?” Co-workers, friends, and even the occasional stranger will offer to share food. The politest way to refuse is by saying, “Thank you, but I can’t. I’m allergic.” Also, rather than saying you are allergic to something in Korean—allerugi—it is much more effective to say you cannot have it. (see the list of useful phrases). Unfortunately, even these statements are unlikely to be fully effective when eating Korean food. Many Koreans are completely unaware that frequently-used ingredients such as tashida soup flavouring and soybean powder contain wheat.
    Most Koreans I spoke with were shocked to hear that, as a celiac, I could not eat food which had so much as touched gluten. Generally, they assume that people with food allergies are still able to consume a product with a 1-2% trace of the allergen. Food allergies, celiac disease, vegetarianism, and other kinds of diet restrictions are rare in this country and are not taken very seriously. Furthermore, according to gastroenterologist Dr. Kim of Severance Hospital in Seoul, only two people were ever diagnosed with celiac disease in Korea.
    The world of North American restaurants, where servers cater to those with food allergies, food sensitivities, and plain old picky eaters, is very far away. Koreans generally order what is on the menu without making any special requests. Even Westerners who learn enough of the Korean language to explain their diets often end up being served something they asked specifically not to have. Furthermore, Korean food is not served on personal plates: everyone at the table reaches his or her chopsticks into the various communal dishes, causing cross-contamination.
    I was at a restaurant with some Korean friends and was trying to explain my gluten-intolerance to them, when one young man told me he was so sensitive to peaches that he could not so much as touch a peach without breaking out into a rash. Five minutes later I saw him eat a dish containing peach slices. This is the attitude of Koreans to food allergies—both theirs and yours.
    The gluten-free meal which is safest and easiest to find in Korea is samgyupsal. This dish features fatty, thick slices of pork cooked over a clean grill right at your table. Just make sure that all sauces are kept off the grill. Bibimbop is a rice, vegetable, and egg dish usually served with kochujang, a red pepper paste which unfortunately contains wheat. Bibimbop can be ordered, however, with the kochujang on the side.
    Most foreigners are in Korea to work rather than visit, and having an apartment provides the extra advantage of having one’s own cooking space. There are a few of us who have managed the gluten-free diet in Korea. However, it has not been easy. If you have celiac disease or food allergies and are thinking of moving to this part of the world, I can guarantee you that it will be a monumental challenge.
    Useful Korean phrases:
    Thank you, but I can’t. I’m allergic: kamsa hamnida man, allerugi issoyo. I cannot have barley, rye, or wheat: chonun pori hago homil hago mil motmuhgeyo. Barley: pori Wheat: mil Rye: homil Bibimbop with the red pepper paste on the side: bibimbop kochujang garu Grilled Pork: samgyupsal

    Jefferson Adams
    What’s the Deal with Gluten Sniffing Dogs?
    Celiac.com 09/20/2018 - Some people with celiac disease experience extreme symptoms when they eat gluten. These folks adopt various strategies for navigating the world. One of those strategies involves getting a gluten-sniffing service dog.
    We’ve done a few stories on gluten-sniffing dogs over the years. Dogs like Zeus and Hawkeye are famous for helping their owners sniff out gluten before they can eat it.
    Can Gluten-Sniffing Dogs Help People with Celiac Disease?  The stories are always popular. People love the stories, and people love the dogs. After all, pretty much anyone with celiac disease who has ever read about gluten-sniffing dogs would love to have one. Who could say no to a warm, fuzzy dog that can take a sniff of your food and signal you when it contains gluten?
    The stories almost always generate plenty of feedback and more than a few questions. To answer some of those questions, we’ve decided to do an article that provides some facts about gluten-sniffing dogs.
    Here are a few factors to keep in mind about gluten-sniffing service dogs:
    Gluten-free Dog Status:
    One thing to remember is that proper gluten-sniffing dogs are professionally trained service animals, much like seeing-eye dogs or hearing-ear dogs. 
    As professional service animals, the dogs must be trained and certified as service animals. The dogs may then accompany their master pretty much anywhere they go, and are available to assess all food and snacks.
    Gluten-free Dog Training:
    Proper training takes time, which equals money. Professional trainers might only train one or two dogs, and the training can take about a year. There are very few trainers for gluten-sniffing dogs, and there are also currently no official guidelines or certification.
    Gluten-free Dog Cost:
    In our recent story on the gluten-sniffing black Lab, Hawkeye, we noted that the dog cost $16,000, not including food, and vet bills. 
    Gluten-free Dog Reliability:
    Nimasensor.com notes that “[g]luten-sniffing dogs may detect gluten in amounts as small as .0025 parts per million with 95 percent to 98 percent accuracy.”
    The Mercola.com website says that Willow, a gluten-sniffing German shorthaired pointer in Michigan, can detect gluten with 95 percent to 98 percent accuracy. 
    Read more on gluten-sniffing dogs:
    Gluten-Sniffing Dogs Are Game Changers for People With Celiac Disease Gluten-sniffing dogs help people with celiac disease What to Know About Gluten-Sniffing Dogs Gluten-Sniffing Assistance Dog Helps Celiac Sufferer Lead Normal Life

    Jefferson Adams
    The Girl Scouts Adds New Gluten-Free Cookie to Popular Lineup
    Celiac.com 09/19/2018 - Great news for gluten-free cookies lovers!  Girl Scouts has announced the debut of a new gluten-free cookie to its enormously popular cookie brand. 
    The new Caramel Chocolate Chip is a chewy cookie that contains caramel, semi-sweet chocolate chips, and a hint of sea salt. also happens to be gluten-free. The new gluten-free treat will be available in select areas during the 2019 cookie-selling season; which typically runs from February to April each year.
    The gluten-free Caramel Chocolate Chip joins the Girl Scouts’ two other gluten-free offerings: Toffee-tastic, a buttery cookie with sweet and crunchy golden toffee bits, and Trios, a peanut butter oatmeal cookie with chocolate chips. 
    The Girl Scouts of America has been around for over 100 years and now hosts more than 1.8 million girl members. Every year, about 100 million scouts between the ages of five and 18 sell approximately 200 million boxes of cookies nationwide. According to the Girl Scouts website, that money stays local to develop local leadership training activities, summer camps, and more activities.
    According to a 2016 study conducted by the Girl Scout Research Institute, approximately 85% of Girl Scouts surveyed said that Girl Scout Cookie Program helped them learn how to set goals and meet deadlines, while 88% said it helped them become effective decision-makers. Another 88% said they learned how to manage money, while 94% said the program helped them to learn business ethics.
    The Girl Scouts have also added online sales and iOS and Android apps that allow people to find cookies or order from their phones.

    Jefferson Adams
    No Gluten-Free Diet for Tennis Champion Roger Federer
    Celiac.com 09/18/2018 - With a number of major tennis stars singing the praises of a gluten-free diet, including top players like Novak Djokovic, Swiss great Roger Federer weighed in on the topic.
    The 20-time Grand Slam winner says that he’s never tried the gluten-free diet, and that he doesn’t not “even know what that all means…I eat healthy, and I think that's what people should do, too, if they have the options. It's sure important the right diet for an athlete.”
    Djokovic, the 2018 US Open winner has been gluten-free since 2011, and calls the diet his biggest key to his success.
    For Federer, diet is helpful, but not the whole story. “[Diet] can help you, you know. I mean, I think every athlete should be in good shape. I don't think we should have any fat athletes, to be honest. We do too much sports and we should be too professional to let that happen to ourselves.
    If it happens, well, we should wake up. You don't have the right entourage. They're not telling you that you're a bit fat. Players try different things, and whatever works for them. I do my thing. It's been very easy and natural and healthy, and it's worked.”
    So, while Novak Djokovic, and a number of other athletes, have gone gluten-free and continue to tout the benefits, look for Federer to remain faithful to his generally nutritious non-gluten-free diet.
    Read more at: TennisWorldUSA.org

×