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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Foreignlady

Help with nausea and vomiting in 5 year old

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Hi, my 5 year old daughter is being investigated for possible Celiac disease after several months of GI symptoms (pain, diarrhea alternating with constipation, recurring bouts of severe nausea, vomiting...). She scored >300 on a blood test where normal values are under 15 (transglutaminase antibodies I think). At the moment, we are waiting for the results of a second blood test to confirm the earlier results before a biopsy is scheduled in January. 

Her pediatric gastroenterologist offered no suggestions for dealing with "flare ups" and I've turned to you for advice. Can you think of anything that might appease the symptoms, especially the nausea and vomiting which really scare her? I thought drinking water might help to move the food faster through the GI tract and make her symptoms more "stool related", does anyone have any support for this theory? Tonight, I tried an acupressure point that had worked for me during my pregnancy-related nausea, and it seems to have helped (time will tell). 

I'm not expecting medically validated advice, but I would appreciate any anecdotal experience you might have so I could try to ease her suffering while I still have to feed her gluten. It breaks my heart to see her in pain like this. Thanks for your help.

Edited by Foreignlady
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I am so sorry!  Is there any way to call the GI to see if there has been a cancellation?  Not sure exactly when your appointment is.  Celiac experts recommend 2 to 4 weeks on a gluten diet prior to the endoscopy.  

What you can do now, is to take her off all dairy.   Celiacs are often temporarily lactose intolerance.  That can help ease symptoms.  Consider easy to digest foods like soups and stews.  She just needs to consume like a piece of bread a day and she does not have to go overboard.  

My heart goes out to both of you! 

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Hi FL,

Welcome to the forum! :)

Your daughter doesn't need to eat a lot of gluten every day for the antibody reaction to continue.  So the first thing I would suggest is limiting the amount of gluten she eats to around a single slice of bread.  Her doctor should be able to look up guidelines on this.

Also, it is possible some of her symptoms are due to dairy.  Dairy digestion is impacted by celiac disease.  So you can try removing dairy from her diet to see if that helps.

Peppermint tea or peppermint in other forms (Altoids) is good for helping to get gas out of the stomach, which can alleviate some pain.

I hope that helps.

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Both good points above, I would say soups/stews/egg dishes/nut butters keep it easy on the gut, I might really suggest lowering her intake of sugars, fruit, starchy foods to prevent gas as much as possible. More stewed meats, homemade soups, easy and soft cooked eggs (like microwaved omelette makers), and spoons of nut butters. and maybe some easy to digest carbs (find what sits the best with her), everyone is a bit different on this, you will need to keep a food diary, and see what is easiest for her. Again with the above remove dairy, and limit gluten intake to the minimum for tested of 1 slice of bread a day,

There is a herb Anise (not star anise) that is known to help with gas, I use it for bouts of issues, peppermint as mentioned above helps some....for me it made it worse again a person to person treatment option.

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Thanks for the welcome and advice.

I really hesitate to alter anything in her diet, especially gluten intake, since her pediatrician and GI specialist were so adamant about not changing anything. As for lactose, is the intolerance associated with celiac manageable with those lactose pills some folks take when eating dairy? I don't know if they are available over the counter, though...

I guess I will start with dairy and minor reduction in gluten. For example, maybe yesterday's lasagna supper wasn't such a good idea. Unfortunately, I am struggling with my own difficulties in accepting that she will have a restricted diet if diagnosed, and I keep thinking, "she has to have my lasagna one last time!" Truth is, she's probably young enough that she won't care about not eating any more of my gluten-full foods in the future...

I'll call the hospital tomorrow and make sure she is on the waiting list for December cancellations, too.

 

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2 minutes ago, Foreignlady said:

Thanks for the welcome and advice.

I really hesitate to alter anything in her diet, especially gluten intake, since her pediatrician and GI specialist were so adamant about not changing anything. As for lactose, is the intolerance associated with celiac manageable with those lactose pills some folks take when eating dairy? I don't know if they are available over the counter, though...

I guess I will start with dairy and minor reduction in gluten. For example, maybe yesterday's lasagna supper wasn't such a good idea. Unfortunately, I am struggling with my own difficulties in accepting that she will have a restricted diet if diagnosed, and I keep thinking, "she has to have my lasagna one last time!" Truth is, she's probably young enough that she won't care about not eating any more of my gluten-full foods in the future...

I'll call the hospital tomorrow and make sure she is on the waiting list for December cancellations, too.

 

Fun Fact, if she removes gluten early on before developing other intolerance/allergies she can still enjoy gluten free versions of stuff. Barilla, Capellos, and a few other companies make gluten free lasagna noodles....I opted for years to use zucchini sliced longways with a mandolin into strips and using them was like a hybrid ratatooi/lasagna.
But yeah might want to go gluten light if she is showing these issues.
The dairy is something most grow out of they catch it early enough. She just needs to be 100% dairy free for 2-6month til she heals. For now their are plenty of dairy free vegan options like daiya cheese, leaf cusinse spreads, homemade ones etc. Some it is just hte lactose, other they develop other issues with various proteins in dairy and just have to remove it. Do not try to skimp it just remove it from now. PS SO delicious, Almond Breeze, etc makes dairy free icecream she can have. I will post a list of alternative foods for you, and the newbie 101 thread to start reviewing.......

OH btw if she does come out to be a celiac, even crumbs and gluten residue can trigger the disease for us.....you yourself might need to reinvent all your recipes to be gluten free to keep you daughter safe changing the whole house gluten-free......Might sound like a pain but I was super sensitive and when I was diagnosed and had to move into a gluten-free living environment.
https://www.celiac.com/gluten-free/topic/119661-gluten-free-food-alternative-list-2017/

 

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Wow, what a detailed list of resources for gluten-free options. Not sure if all that is available here. Thankfully, I live in a large urban area and there are several local businesses with products for celiac, including an entirely gluten-free grocery store. 

Is there anyway to test for and confirm lactose intolerance? She consumes TONS of milk, cheese and yogurt. That's why I would have liked lactose pills instead.

As for changing recipes, I'm coming to terms with that eventuality and will take it on as a challenge. I'm told they will screen her 3 younger siblings too if she is diagnosed, so we may just have more celiac people in the house too. But I will try to take appropriate precautions (a gluten-free toaster, etc.) and not impose such drastic restrictions on the rest of us unless it proves necessary. I am not sure we could afford to all eat gluten free  either. Pricey stuff!

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4 minutes ago, Foreignlady said:

Wow, what a detailed list of resources for gluten-free options. Not sure if all that is available here. Thankfully, I live in a large urban area and there are several local businesses with products for celiac, including an entirely gluten-free grocery store. 

Is there anyway to test for and confirm lactose intolerance? She consumes TONS of milk, cheese and yogurt. That's why I would have liked lactose pills instead.

As for changing recipes, I'm coming to terms with that eventuality and will take it on as a challenge. I'm told they will screen her 3 younger siblings too if she is diagnosed, so we may just have more celiac people in the house too. But I will try to take appropriate precautions (a gluten-free toaster, etc.) and not impose such drastic restrictions on the rest of us unless it proves necessary. I am not sure we could afford to all eat gluten free  either. Pricey stuff!

If your in the USA I have sources for many places to shop gluten free and even sometimes post on sales I find. I even have a few tricks to stack coupons, rebates, etc to bring stuff down to SAD diet pricing in some cases. -_- I live on a annual income of under 10k I know the hardships more then most.

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Thanks Ennis, but we are in Canada. I have learned that gluten-free food is tax deductible as a medical expense here, but that won't offset the cost difference. 

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Welcome to the forum.    While in the beginning this is all quite overwhelming in time once she is diagnosed you will find that changing recipes gets easier with each passing day.    As for your Lasagna... there are many very good gluten free  lasagna noodles out there .  I prefer Tinkyada brand for that and my family of grown children and a grand child can't tell the difference.  :)    We just had a vegetarian, gluten free Thanksgiving complete with a gluten free lemon cake as requested by my grandson and it was wonderful.     I have experimented with a flour mix over the years and now I can bake my old family recipes with it,  Bread is the exception to that, I'm still working on that!!!   My friends that are NOT gluten free ask me to make cupcakes or other sweet treats for parties and they don't have to eat gluten free.  Noone can tell!!   I've had chefs taste my chocolate cupcakes and from a distance saw the light come on in their eyes so approached to speak to them and when I tell them they are gluten free they are flabbergasted.. It's a lovely feeling to be able to bring that out in professionals with a simple cupcake  :)    It will take some time and experimenting to get it right and it doesn't have to be expensive.   I see that you are in Canada so not sure if you have Trader Joe's there but their brown rice pasta is the best.   1.99 for a pound bag and comes in many shapes and sizes.  The closest one to me is 2 hours away so I buy it by the case when I'm there so we always have pasta in the pantry  :)   Good luck with the testing for your little doll and deep breath it's not as bad as it seems at first, your whole family will come to terms with it and it will just become 'what you do' if she is diagnosed.      You'll be packing lunches for her with school most likely but you can be creative.  My grandson is vegetarian and the schools here don't cater to that very much in the lunch room but he has a nice homemade lunch every day that he is proud to eat with his friends at school.   She'll need to learn that she can't 'share' with her friends but because she will be feeling better she will be happy to do it.   

 

Good luck 

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Thanks for the encouragement Judy. I will definitely seek advice if we have a diagnosis on adapting for baking. My daughter and I have baked together since she was 2 years old and it saddened me to think we couldn't do that anymore. Instead, I now realize we will have LOTS of trial-and-error baking experiments while we learn to adjust. 

No Trader Joe's here, but we have relatives that live close to the border and if necessary, we might ask them to buy some stuff for us States-side.

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I am glad that your doctors are adamant about keeping gluten in her diet until all testing is complete.  So, often this advice is not followed by doctors.  Shocking but true.  So, perhaps reducing of eliminating dairy may help her through until the endoscopy.  Your GI can test her for lactose intolerance.  If not, try to reduce the amount of lactose.  Milk and ice cream contain the most, but yogurt or hard cheeses and butter can often be tolerated better.   The lactose enzymes can help too.  Look for gluten free versions (learning to read labels is a good habit to get into).  

I assume that the rest of the family will get tested?  Because that is the current recommendation even if you are symptom free.  celiac disease has a definite genetic component.  

You will still be able to bake gluten-free with your daughter.  You will just make it gluten free. 

Remember, the goal is to keep her safe.  It does not cost more to eat gluten free unless you purchase a lot of gluten-free processed foods.  I won’t go on, because you will continue to get great advice here.  

Finally, keep checking on procedure cancellations...you never know!  

I hope she feels better fast!  

 

Edited by cyclinglady

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Thanks for the tips about lactose, cyclinglady. I will try using lactose enzymes and reduce her intake of milk just to be safe. Can't hurt. Ando yes, as far as I understand, the rest of the children will eventually get screened, I will ask for it for sure. I guess my husband and I should request screening too if she's diagnosed.

I must say it's a rather mysterious disease, in how it manifests, if that is in fact what she has. She had just had almost 3 good weeks with only minor symptoms (pain and mild occasional nausea). Could "flare ups" be stress related? I have no idea why these symptoms started up to begin with, but it coincided with starting kindergarten and some stressful adjustment issues for her, so we actually believed her symptoms were caused by anxiety. That's why we consulted her pediatrician in the first place, and he ordered the celiac test so we could rule out all physical causes. In the past few weeks, we have set up a number of things to help her cope with stress better, and the GI symptoms also improved. 

In last night's episode, she woke up apparently from a food related nightmare, probably because she was feeling ill, and she became so worked up and afraid that she was going to vomit, shaking and sobbing, screaming and talking about hating herself and feeling like she were dead. It was very bad. We finally managed to calm her with soothing songs and lullabies, making her laugh and generally distracting her from her discomfort, and finally the whole thing resolved itself without any vomiting. She also seemed to get a lot of relief from learning the acupressure technique, which I think has to do with the placebo effect and the feeling of having some control over her symptoms, more so than with the effectiveness of the technique. So, I am beginning to think there is a psychological component to this and that even if she does have celiac, she is not very symptomatic unless she is under stress. Does that sound like something you experienced prior to being diagnosed and eliminating gluten?

PS, I am grateful that you folks have been so supportive and forthcoming with your advice and I am glad to know that I can find help here if she is diagnosed. 

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5 hours ago, Foreignlady said:

Thanks for the tips about lactose, cyclinglady. I will try using lactose enzymes and reduce her intake of milk just to be safe. Can't hurt. Ando yes, as far as I understand, the rest of the children will eventually get screened, I will ask for it for sure. I guess my husband and I should request screening too if she's diagnosed.

I must say it's a rather mysterious disease, in how it manifests, if that is in fact what she has. She had just had almost 3 good weeks with only minor symptoms (pain and mild occasional nausea). Could "flare ups" be stress related? I have no idea why these symptoms started up to begin with, but it coincided with starting kindergarten and some stressful adjustment issues for her, so we actually believed her symptoms were caused by anxiety. That's why we consulted her pediatrician in the first place, and he ordered the celiac test so we could rule out all physical causes. In the past few weeks, we have set up a number of things to help her cope with stress better, and the GI symptoms also improved. 

In last night's episode, she woke up apparently from a food related nightmare, probably because she was feeling ill, and she became so worked up and afraid that she was going to vomit, shaking and sobbing, screaming and talking about hating herself and feeling like she were dead. It was very bad. We finally managed to calm her with soothing songs and lullabies, making her laugh and generally distracting her from her discomfort, and finally the whole thing resolved itself without any vomiting. She also seemed to get a lot of relief from learning the acupressure technique, which I think has to do with the placebo effect and the feeling of having some control over her symptoms, more so than with the effectiveness of the technique. So, I am beginning to think there is a psychological component to this and that even if she does have celiac, she is not very symptomatic unless she is under stress. Does that sound like something you experienced prior to being diagnosed and eliminating gluten?

PS, I am grateful that you folks have been so supportive and forthcoming with your advice and I am glad to know that I can find help here if she is diagnosed. 

The whole stress thing is partially due to nutrient malabsorbation in celiacs,  B vitamins are a big culprit and magnesium is another. You mention dreams which is odd for people with a magnesium deficiency (most with this do not dream til they start supplementing from my observations) but she still may want to get it checked. I take 2 different caffeine free b vitamin supplements that are in liquid form you just measure them out and put them in a glass of juice/tea. Quite handy for a kid no? I use liquid Health Stress & Energy and Liquid Health Neurological Support 1 tbsp each 3 times a day, she could probably get by with 1tsp each 3 times a day, It will reduce her stress and anxiety. The place I am linking sells and will ship them to Canada no problem.
https://www.luckyvitamin.com/p-8435-liquid-health-energy-stress-tangerine-orange-flavored-32-oz
https://www.luckyvitamin.com/p-5291-liquid-health-neurologic-brain-health-supplement-pomegranate-berry-32-oz

 

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Depression and anxiety are common with celiac disease.  If I am glutened, I become anxious.  It is one of the many symptoms that develop when I am experiencing a gluten flare-up.  This can resolve on a gluten diet.  And who would not be anxious?  Dealing with vomiting, abdominal pain, etc?  Can stress cause flare-ups?  Who knows? It certainly can make things worse.  Researchers think that stress contributes to autoimmune disorders and other illnesses.  For celiac disease we know gluten triggers a flare-up, but not sure how stress plays into the trigger.  

Celiac disease is like a chameleon.  Symptoms ebb and flow over days, months or years.  One flare-up you might deal with reflux and nausea.  The next time joint issues and constipation.  It is a strange disease.  For some it is consistent and others not.  This is why it is hard to diagnose based on symptoms alone! 

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