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stanleymonkey

Tummy Bug For 3 Months

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hi, i posted on parents board but wanted opinions from others

my 2 1/2 year old has never had a good tummy and after researching her symtoms i am convinced she has celiac disease, doc ran full celiac panel but everything is negative, but ped still is referring s to a gi (if you are in van, bc you have to see min sen phang, best ped about)

everything clicked into place a few weeks ago, but i would like opinion of those who have been there.

daughter had colic, green frothy stool, explosive bms from day 1, never slept either. cut dairy from my diet she got a lot better.

started solids, found out she had anaphylactic milk and egg allergy.

rarely had formed bm, had bouts of diahrrea and constipation, bouts of diahrrea usually green or pale, grainy and foul beyond belief, after diahrrea finished she would get a rash

the latest bout has been by far the worst, its lasted 6 weeks, the stools have been copious, foul, mucousy, grainy and has some that are so poisonous they burn her skin and she screams

she has a distended belly has lost 1.2kg in the last 2 weeks, the worse the diahrrea the worse her behaviour to the point relatives keep their kids away

the only time we saw improvement was when she stopped eating

she is having semi formed bm's just now, they are the colour of clay or really pale, she will only eat rice tahini strawberries apples bananas and chicken, she has panic attacks over other things

we have her still n gluten

the childrens hospital did the full celiac panel, and test to look for crohns and other inflammatory bowel issues,the also checked for vitamin deficiencies and aneamia the also ran stool test for giardia, and parasites

everything suggests she is 100% healthy, she had even gained back a pound, but back on a normal diet she is once again a nightmare with bm's full of food and musus

gastro said to go back fter the summer (3 months) as he is positive that it is just that she keeps getting tummy bugs she cant shake and once summer is in full swing, tummy bugs tend to die out and she should be healthy

we told him that she has had these issues even in the middle of summer, and if it is a bug why is noone esle sick (live with elderly in laws and have a baby too and hubby with crohns. i have never been sick and i change her

so if she is still sick in 3 months they'll decide what to do, in the meantime she is practically housebound, cant go to preschool and i cant work

we see an allergist and her allergies are actually improving, she even outgrew 1 allergy

the docs at the local childrens hopital ran a full celiac panel, ran tests for inflammation, petc, stool samples for parasites etc, even a sweat test which was a definitive no, they could tell straight away

we have a dietician who is fantastic, we kept a food diary, and nothing new have been introduced, and there seems to be no 1 food triggering the diahrrea except things like breadand pasta

guess we just have to wait out the 3 months, and hope she doesnt lose anymore weight

she's grown 1 inch in year and her weight is less than she was at 18 months, so 3 months of her being housebound ( need to be near a shower!!) and no work for me

now she is having metallic smelling bm's, and has started screaming she doesnt want to eat but if you ignore her and start eating she'll join you at the table and eat lots

the most worrying thing is the pica, she got into a bag of flour and was stuffing it in her mouth like a wild animal, and she'll hide and eat bits of cardboard

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Oh dear, this sounds like an awful situation! It does sound like she is reacting to gluten and wheat, but could be a number of other things also, its good your dietician is so good. Have you tried her on the basics, rice, bananas and white chicken? And thats it! And get a multi vitamin that is suitable for Celiacs so she doesn't lose too much weight. ITs a shame that you have to put up with another three months, and that they havent done a biopsy straight away, especially since your hubby has Crohns! Maybe request one? My mum had loads of negative blood tests but her biopsy gave a positive result finally after 30 years or so! The biopsy is painless under sedation and only takes about 20mins, probably less.

I bet you don't really want to wait 3 months! Try her on the really plain diet and to help calm her, try rubbing some rose oil clockwise on her belly, very gently, it helps relieve pressure and the rose helps calm emotions. I was very skeptical about this at first but it truely was a life saver! And maybe demand a biopsy!

I really hope everything works out, and you are okay! Best of Luck.

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Keep her on the "NORMAL" diet and get the appointment moved up.

She has way too many symptoms of Celiac and related vitamin defiencies. PICA, and B12 related nuero panic attacks at age 2. This one is probably going to have the gluten withdrawal symptoms too. Gluten can have an opiate like affect on some individuals.

Get the testing done as soon as possible so she can start healing and having a healthy childhood. Get on the phone and get the next available appointment!

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she is on calcium, omega 3 and vitamin d because of her inability to have dairy

our dietician alo suggetsed magnesium as she was having foot cramps.

we see our ped next week, then we'll go to the gastro, our ped is awesome

as for the biopsy, as my daughter is a-female, and b- half chinese, he wont even consider crohns,

he evn ruled out celiac as she wasnt all bloated \when we saw him, he said most kids he sees with celiac are malnourished with huge bellies, your stereotypical ethiopian kid look. i am positive we have caught the celiac early enough that its not that bad, i guess he is just going on what he sees i front of him.

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she is on calcium, omega 3 and vitamin d because of her inability to have dairy

our dietician alo suggetsed magnesium as she was having foot cramps.

we see our ped next week, then we'll go to the gastro, our ped is awesome

as for the biopsy, as my daughter is a-female, and b- half chinese, he wont even consider crohns,

he evn ruled out celiac as she wasnt all bloated \when we saw him, he said most kids he sees with celiac are malnourished with huge bellies, your stereotypical ethiopian kid look. i am positive we have caught the celiac early enough that its not that bad, i guess he is just going on what he sees i front of him.

well doc is still adamant its a tummy bug getting so frustrated, need a diagnosis because then extended medical will help cover costs of medicines that are gluten free, and given that we have already had to take all egg and milk containing foods out of her diet including things that say 'may contain', dont wnt to remove more withot being sure

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well, back to docs today, checking for anemia, andliver and kidney enzymes and function

told yet again its just toddler diahrrea , getting so angry we need an answer

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Just thought you would want to know:

According to Danna Korn in Living Gluten-Free for Dummies, the celiac test results in children 2 and under are not always accurate because their immune systems are not strong enough to produce antibodies.

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That "bloated belly" picture in medical textbooks is so horribly misleading. Heaven only knows how many misdiagnoses it's lead to. The blood tests are unreliable in little kids.

She absolutely sounds celiac or at least gluten-intolerant since she reacts so badly to bread and pasta. The pica is because she is seeking nutrients she can't absorb. I agree to get her to a GI as soon as is humanly possible!

If all else fails, take her off gluten yourself. I understand the issues with medical costs, but you can't always get a firm celiac diagnosis. Remember you can always reintroduce gluten if it doesn't make a difference in how she is doing.

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Trust your mommy instincts. Take her off gluten. If she were mine, not another bit would cross her lips. Clean out the house of anything gluten. It won't hurt her and it would likely help her.

In any event, if I had one with a stomach bug I would cut their diet down to rice-bananas-chicken until they cleared up.

As for the cost / having a diagnosis - eating gluten free does not have to cost more. Chicken, rice, veggies, fruits. Re the cost of meds - if you get her straightened out, she won't need any meds. They have pronounced her otherwise healthy.

Another thing - I would not want to prolong the battle over food any more. She will develop issues with eating, bad associations, etc. that will be hard to overcome later.

Sounds like she eats a healty mix already. I would stick with what she will eat, clean out the kitchen, let her heal and get back to doing what little girls ought to be doing - playing!

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we need a diagnosis because

a her dad has crohn's, dont want to just assume it is celiac when it could be another autoimmune problem which needs different medical treatment

b medication may be needed if it something else and will only be paid for by medical with a diagnosis

c our list of medications are already drastically reduced with her allergies, so if she needs medication, they cannot refuse to give us alternatives if we have a medical diagnosis saying she must avoid certain meds, then medical will pay for it

d follow up care without a referal every time (which takes months to get) will be provided

we live with my in laws, so it will be a hge lifestyle change for veryone, which im sure they wont mind they want our daughetr well too

we are going to wait for the blood test results, and if it is put down to that cop out phrase toddler diahrrea we are going to go gluten free

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we need a diagnosis because

a her dad has crohn's, dont want to just assume it is celiac when it could be another autoimmune problem which needs different medical treatment

b medication may be needed if it something else and will only be paid for by medical with a diagnosis

c our list of medications are already drastically reduced with her allergies, so if she needs medication, they cannot refuse to give us alternatives if we have a medical diagnosis saying she must avoid certain meds, then medical will pay for it

d follow up care without a referal every time (which takes months to get) will be provided

we live with my in laws, so it will be a hge lifestyle change for veryone, which im sure they wont mind they want our daughetr well too

we are going to wait for the blood test results, and if it is put down to that cop out phrase toddler diahrrea we are going to go gluten free

If she has already had the celiac panels, then wouldn't it be ok to cut the gluten? You said that seems to be a trigger from the food diary. That won't affect testing for Crohn's, Ulcerative Colitis, etc. and it may give her some relief in the meantime. Sorry if I was a bit blunt. My kids tell me I'm too direct sometimes..... I just envision your poor daughter with raging diaper rash (been through that with mine) and tummy aches and pain, and difficult meal times, and your worry-worry-worry. I kick into mommy-gear really fast! One more thing and then I'll shut up - the green diarrhea can be associated with c. difficile infection (I had that before). If she has had antibiotics, that might be a consideration.

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don"t worry i didn"t think you were blunt!!! just someone who has been there, done that and got the t-shirt!

it's just so hard to know what to do, we think it could be celiac, but there are so many autoimmune disorders in family, we don't want to remove something without being sure, its taken a long time to get her on a good diet that replaces all the things she misses from dairy, and ensures good growth and development, we just dont want to have to go through all that again!

we are going to try the chinese medicine route, her dad is chinese and see what happens

she was checked to c.diff, doc has warned us if she isnt anemic she'll just be classed as having toddlers diahrrea, if that's the case we are definately taking her off gluten

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To recap: Her daddy has Crohn's (which has been linked in multiple studies to celiac/gluten intolerance, btw) and there are numerous OTHER autoimmunes in her family (many of which have also been linked (RA, lupus, fibromyalgia, MS, etc.)...

Google Scholar is dangerous in the hands of amateurs. ;)

Frankly, were I in your shoes, I wouldn't care WHAT the doc says. There'd be no grains in my house, period!

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well, after all sorts of tests..the official diagnosis is toddler diahrrea as all tests indicate she is 100% healthy. aparently all behaviour issues, eating issues, sleep issues, bloating, gas, insbility to recognise need to have a bm are in her head, and mine!!!!

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Ugh. Sorry to hear they didn't find anything. Even sorrier to hear your doctor is one of those jerks who says stuff is in your head. On the bright side, I take it they ruled out Crohn's? I hope she does better gluten-free.

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You have gotten lots of comments but thought I'd add a few of my own.

Most tests for parasites are not very good. You might want to look at some of the herbal preparations with with instructions for small children.

The tummy bug problem - I have used several common spices - turmeric is very helpful when lots of it is eaten either in capsules or in food. See recipes online for how to use it.

Look at the Specific Carbohydrate Diet, it's gluten-free, usually children like it and there are lots of recipes online.

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You have gotten lots of comments but thought I'd add a few of my own.

Most tests for parasites are not very good. You might want to look at some of the herbal preparations with with instructions for small children.

The tummy bug problem - I have used several common spices - turmeric is very helpful when lots of it is eaten either in capsules or in food. See recipes online for how to use it.

Look at the Specific Carbohydrate Diet, it's gluten-free, usually children like it and there are lots of recipes online.

we'll check those out, thanks for the suggestions.

the thing that has us doubting a tummy bug is noone else has been ill, least of all me who changes the vast majority of those gross diapers

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