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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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Symptoms, Celiac Testing, And What To Do If The Tests Come Back Negative Advice Please?
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9 posts in this topic

My daughter is just over 3 years old, and is having the following symptoms:

Mushy poop – like Weetabix soaked in milk. Often leak out of nappies, frequently to the extent have to shower her off & change all her bedding.

Very smelly poop

‘Wee’ potty trained easily. Not poop potty trained at all, and is very anxious about it because of the tummy pain.

Constipation – at least once a month

Thin hair – thickening now, but bald until about 2

Extremely smelly flatulance in really excessive amounts

Belly flattish at start of day before eating, and often noticeably much larger by the evening

Very poor appetite – has to be coaxed/reminded to eat food

Pale complexion with dark shadows under eyes

Very prone to being tearful/having dramas about things (but she is 3!)

Petite child – 25th centile

Light/restless sleeper

‘Itchy bottom’ & complains of ‘pain inside’ at times

Dry skin, and is always absent mindedly scratching

Eczema

She also had bad silent reflux as a baby, and refused to eat any solid foods until 13 months old (saw a Ped, he wasn’t concerned as long as she ate before 18 months). When she actually started eating solids, her weight gain then remained pretty static for about 6 months before she picked up and started gaining weight well again.

We’ve got an appointment for blood tests for celiac, anaemia and general infections next week. My mother and aunt both have diagnosed celiac (diagnosed as adults), and there’s a ton of milk intolerances/allergies across my side of the family. I have IBS and am prone to mouth ulcers and cracked corners of the mouth, which I’ve read can be celiac symptoms, but I had a blood test about 12 years ago when my mom was diagnosed and tested negative for celiac back then.

My worry is: what happens if the blood tests come back negative? Where should I go from there? I don’t think my daughter is desperately ill, but I do think that there’s something going on with her, you know? The locum GP I saw said that, if the tests came back negative, then perhaps my daughter just needs more vegetables and more sleep! I know that’s not going to be the answer, as she sleeps a long time and eats loads of fruit and veg, but I don’t know where I should go next?

I'm just concerned - does this sound like celiac in a young child, and if it turns out not to be celiac, then what is it??? Do her symptoms ring any bells with anyone here as to what might be going on with her? Who should we see and what should we do, if we do get a negative test result?

Thank you very much! Any and all help is gratefully received! :)

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Hugs Mama!

A lot of what you are saying sounds like it could be celics bit I also see a lot of things we experienced with food allergies. Has she been tested for them?

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Hugs Mama!

A lot of what you are saying sounds like it could be celics bit I also see a lot of things we experienced with food allergies. Has she been tested for them?

No, she's not been tested for anything so far. We've just reached the 'okay, we've given it some time, it's not resolving by itself, let's look into it' stage with the doctors, so the celiac test/anaemia tests are the first ones.

How did you discover the food allergies your child has?

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While I was nursing my son he had MAJOR sleep issues, poop issues and the red allergy rings around his eyes and anus :( I did 2 dairy trials (6 weeks each) with little to no improvement. At 1, we gave him daily and he was very ill. Tried eggs and was VERY ill. Took him for epi pens and a referral for an allergist. We found out he has a long list of allergies. Within 3 days of taking out all of his allergens (him and I as he was still nursing), he was sleeping through the night, no more butt ring, lessening poop issues. This was when he was about 14 months old.

We were still (at 3) having poop issues and that along with a very low (actually non existent) Vit. D level, they tested him for Celiacs. + blood but inconclusive biopsy but has been responding well to a gluten-free diet (along with all the other allergen free).

If it sounds anything like what you are going though and you have ANY questions, let me know! It is so hard when they are so little and can't really tell you what's going on! My son has NEVER verbally complained about ANY of this. Celiacs was a diagnosis we really tripped upon due to the low Vit. D level!

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My daughter is just over 3 years old, and is having the following symptoms:

Mushy poop

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We are VERY new to celiac, just getting the positive test results last week and biopsy done today. GI doc will be surprised if biopsy comes back negative based on what he saw. So I don't have too too much to add, but:

The reason we tested my daughter at her 3yo well visit was due to her bowel issues that they are always soft and every 6-8 weeks turn into liquid for no reason. She also complained of stomach pain throughout the day and especially during the 1 of 5 daily bowel movements; she's been potty trained for almost a year. Now that I know she has celiac, some things are explained: her horrible diaper rashes even when pt'd b/c of the acid on her bum, distended belly and small growth.

Since August 2nd, we've put her largely on a gluten-free diet and have seen so many improvements almost immediately. Tummy pain is gone and BM's are more formed and only 1xday, if that. Even though she's a newly 3yo, she notices the difference to the gluten-free diet.

I would definitely suggest doing food allergy panels to cross things off your list. I would also consider going gluten-free/CF to test for intolerences that won't show up in the allergy panels. My 5yo has an intolerence to dairy (not sure if it's cassein or lactose), but didn't test positive for that allergy. We took her off all dairy a year ago and it's amazing the improvements in her bowels and stomach pains. She had very similar reactions & responses to dairy as my younger daughter has to gluten.

Good luck! I know it's difficult to hang in there, but get the bloodwork done and go from there. In the meantime, try cutting out your typical allergen foods.

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Thank you so much for your replies. :) Very interesting to read other people's experiences and especially to see that other children are having the same symptoms my daughter is! 50% of me is expecting the tests to come back negative, and the other 50% is growing more and more convinced that it could indeed be celiac. Although my mom radar is telling me that something's not right, the vagueness of her symptoms has been making me second guess myself for a while, so reading your replies and others on this site has helped me clarify my thoughts that there is something going on that needs investigating.

I think, if the tests do come back negative, that I'm going to have to push very hard to get any further tests done. The vibes I've got already from the locum doctor are that it's either celiac or 'just how she is', and from everything I've been reading on here, how she is right now isn't 'normal' at all. And although obviously I don't want her to have celiac at all, I do want to know what's causing all these symptoms and resolve them, you know? Hopefully the doctors will be willing to listen and take my concerns seriously...

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Thank you so much for your replies. :) Very interesting to read other people's experiences and especially to see that other children are having the same symptoms my daughter is! 50% of me is expecting the tests to come back negative, and the other 50% is growing more and more convinced that it could indeed be celiac. Although my mom radar is telling me that something's not right, the vagueness of her symptoms has been making me second guess myself for a while, so reading your replies and others on this site has helped me clarify my thoughts that there is something going on that needs investigating.

I think, if the tests do come back negative, that I'm going to have to push very hard to get any further tests done. The vibes I've got already from the locum doctor are that it's either celiac or 'just how she is', and from everything I've been reading on here, how she is right now isn't 'normal' at all. And although obviously I don't want her to have celiac at all, I do want to know what's causing all these symptoms and resolve them, you know? Hopefully the doctors will be willing to listen and take my concerns seriously...

Follow your mommy gut!!!! Mine has never ever steered me wrong. It's taken me some time to get to the right answer, but eventually we get there. My 7yo had a skin disease that the peds wrote off as this viral thing; it didn't sit well, I followed up with a derm and though it wasn't the severe version that can affect various organs, it was something that wasn't what the ped's said it was and needed follow-up from 2 different specialists over 4.5 years. My 7yo also had some developmental delays that no one could ever diagnose but things just did not sit right with me until we got him a dx of SPD and barely on the autism spectrum; he's been in OT and speech starting at age 3 and has made amazing improvements. My 5yo had bowel issues, we tested for celiac (negative) but pulled her off diary and her bowels improved as did her frequent bouts of pneumonia. My 3yo has had bowel/tummy issues since she started table food ~ 14mos, it's been so unsettling I've questioned SPD and autism to the point of delaying her vax's, but finally I think I have an answer in celiac. Making her CF like her brother and sister didn't work. We'll go gluten-free and I'll know for sure.

Good luck!!!!

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wow i am actually crying.

My son has many of the same symptoms.

I have a very sleepy toddler and yes everyone says how wonderful but i just knew.

He poops up to 6 times a day, wakes up often in the morning and his sheets need to be changed.

He letsw out a bottom burp and it smells really bad but he was also doing this 2 days after birth.

His tummy gets really big and he screams until he poops.

He hasnt grown for 8/9 months and is now under the bottom centile.

I am actually taking him back to the doctors tomorrow and demanding they do something can u believe we have been waiting 5 weeks for a hospital appointment for him to have tests.

Thank you all so much.

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