Does Daughter Have Celiac Disease?

[stanleymonkey]

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 srawberries apples bananas and chicken, she has panic attacks over other things

could it be celiac?

[Marilyn R]

OMG! It sounds like it to me but I'm not a doctor. Have you and her father had genetic testing?

I know that the protein in gluten is similar to that of egg and dairy (and soy and corn), so your little girl may react to gluten too. Has she had allergy testing?

Sending prayers and good wishes your way...happy Mother's Day!

Let us know what develops, I hope for the best for you both. If it is celiac disease, her behavior and mental status will improve significantly with a strictly gluten-free diet.

[shadowicewolf]

Poor Baby

Have you tried going gluten free to see what happens?

[stanleymonkey]

Poor Baby

Have you tried going gluten free to see what happens?

we tried for a few days, but our big issue is because she has so many allergies, her fod choices are reduced, and we dont want to remove anything else without being certain, plus her dad has crohns so there is a chance it could be that

we see the GI on thursday in some ways i hope im right, so we have answers

[Medusa]

It really sounds a lot like celiac - you won't necessarily get positive tests results though. I'd agree with Shadowicewolf that it's worth trying a gluten free diet - you could well see results pretty quickly, my kids improved literally overnight. It doesn't have to be super restrictive, there are a lot of options out there if you are prepared to spend time reading lists of ingredients! Can you get advice from a nutritionist/dietitian? Other food sensitivities can become milder once you deal with the gluten problem and the gut starts to heal. Good luck!

[Ginkgo100]

When ds (13 mo) was in the hospital for weight loss/failure to thrive, the docs were testing for LOTS of things, because celiac is far from the ONLY thing that can cause these symptoms. Here are my thoughts:

• Did your pedi run the IgA TTG test? This is considered the "best" blood test for celiac, but it can give false negatives in certain people. In this case, they can run the IgG TTG test which usually picks it up if the IgA TTG test missed it.
  
• Another possibility is an intestinal parasite like Giardia. In fact ds's pedi GI doc said the biopsy results for Giardia look like celiac, with the difference being that the celiac blood tests will be negative! It's very important to find out which one it is because the treatment is completely different: lifelong gluten-free diet and no meds for celiac, regular diet and one-time course of antibiotics for Giardia.
  
• A third possibility that I did not like hearing the docs say is cystic fibrosis. Apparently the lung symptoms are not always the first to show up in little ones. They screen newborns for it (at least here in TX) but it has occasional false negatives. The test for this is really simple, just a sweat test. (If your child's skin tastes salty, that's a red flag.)
  
• Yet another possibility is that these are food allergy symptoms, especially since she has several known food allergies. The docs might have you try a strict elimination diet, which is a PITA but the best way to diagnose tricky food allergies. Allergy tests (blood tests and skin-prick tests) with an allergist might also be helpful.
  

And there are lots more possibilities. I think there are two important things to keep in mind: You HAVE to work with the doctors (and if you don't think your doctor is listening, find another one) because this is not something you can figure out by yourself. And if you think it is celiac, strange as it sounds, you HAVE to keep her on a normal diet (WITH GLUTEN!) until she is diagnosed, because a celiac on a gluten free diet can have false negative test results!

[stanleymonkey]

When ds (13 mo) was in the hospital for weight loss/failure to thrive, the docs were testing for LOTS of things, because celiac is far from the ONLY thing that can cause these symptoms. Here are my thoughts:

• Did your pedi run the IgA TTG test? This is considered the "best" blood test for celiac, but it can give false negatives in certain people. In this case, they can run the IgG TTG test which usually picks it up if the IgA TTG test missed it.
  
• Another possibility is an intestinal parasite like Giardia. In fact ds's pedi GI doc said the biopsy results for Giardia look like celiac, with the difference being that the celiac blood tests will be negative! It's very important to find out which one it is because the treatment is completely different: lifelong gluten-free diet and no meds for celiac, regular diet and one-time course of antibiotics for Giardia.
  
• A third possibility that I did not like hearing the docs say is cystic fibrosis. Apparently the lung symptoms are not always the first to show up in little ones. They screen newborns for it (at least here in TX) but it has occasional false negatives. The test for this is really simple, just a sweat test. (If your child's skin tastes salty, that's a red flag.)
  
• Yet another possibility is that these are food allergy symptoms, especially since she has several known food allergies. The docs might have you try a strict elimination diet, which is a PITA but the best way to diagnose tricky food allergies. Allergy tests (blood tests and skin-prick tests) with an allergist might also be helpful.
  

And there are lots more possibilities. I think there are two important things to keep in mind: You HAVE to work with the doctors (and if you don't think your doctor is listening, find another one) because this is not something you can figure out by yourself. And if you think it is celiac, strange as it sounds, you HAVE to keep her on a normal diet (WITH GLUTEN!) until she is diagnosed, because a celiac on a gluten free diet can have false negative test results!

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

[stanleymonkey]

When ds (13 mo) was in the hospital for weight loss/failure to thrive, the docs were testing for LOTS of things, because celiac is far from the ONLY thing that can cause these symptoms. Here are my thoughts:

• Did your pedi run the IgA TTG test? This is considered the "best" blood test for celiac, but it can give false negatives in certain people. In this case, they can run the IgG TTG test which usually picks it up if the IgA TTG test missed it.
  
• Another possibility is an intestinal parasite like Giardia. In fact ds's pedi GI doc said the biopsy results for Giardia look like celiac, with the difference being that the celiac blood tests will be negative! It's very important to find out which one it is because the treatment is completely different: lifelong gluten-free diet and no meds for celiac, regular diet and one-time course of antibiotics for Giardia.
  
• A third possibility that I did not like hearing the docs say is cystic fibrosis. Apparently the lung symptoms are not always the first to show up in little ones. They screen newborns for it (at least here in TX) but it has occasional false negatives. The test for this is really simple, just a sweat test. (If your child's skin tastes salty, that's a red flag.)
  
• Yet another possibility is that these are food allergy symptoms, especially since she has several known food allergies. The docs might have you try a strict elimination diet, which is a PITA but the best way to diagnose tricky food allergies. Allergy tests (blood tests and skin-prick tests) with an allergist might also be helpful.
  

And there are lots more possibilities. I think there are two important things to keep in mind: You HAVE to work with the doctors (and if you don't think your doctor is listening, find another one) because this is not something you can figure out by yourself. And if you think it is celiac, strange as it sounds, you HAVE to keep her on a normal diet (WITH GLUTEN!) until she is diagnosed, because a celiac on a gluten free diet can have false negative test results!

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

[stanleymonkey]

well, saw her allergist today, told her all the symtoms, first question she asked was was she checked for celiac?

she did skin tests for new allergies..none, talked about possibility of food intolerance..unikely

tummy bug...maybe but 3 months is a long time to recover, and waiting 3 months to see if she does ridiculous

so at least we can tell gastro we've ruled out alergies

been measuring her belly, it goes from 4 cm all the way up to 51cm, thats a lot of bloating

she still has cradle cap and 2 and a half

hair and toe nails havent grown in a while

i want to scream, my child is sick and feel like noone cares

[stanleymonkey]

well, saw her allergist today, told her all the symtoms, first question she asked was was she checked for celiac?

she did skin tests for new allergies..none, talked about possibility of food intolerance..unikely

tummy bug...maybe but 3 months is a long time to recover, and waiting 3 months to see if she does ridiculous

so at least we can tell gastro we've ruled out alergies

been measuring her belly, it goes from 4 cm all the way up to 51cm, thats a lot of bloating

she still has cradle cap and 2 and a half

hair and toe nails havent grown in a while

i want to scream, my child is sick and feel like noone cares

ANYONE HAD SCOPE AT BC CHILDREN'S? HOW LONG DID IT TAKE FOR A REFEAL, WE WERE TOLD A MONTH IT'S A MONTH AND STILL HAVENT HAD A DATE

[maximoo]

So the summer is over, how is the baby doing now? Has she gone gluten free? Do you ever watch Mystery DX on the OWN channel? I've seen quite a few cases of little kids with symptoms like yours . However there are so many episodes I couldn't begin to tell you which ones to look for. it sounds very suspiciously like celiac but it could be an enzyme or something her body isn't producing. If bms are pale have her liver checked. Also consider genetic testing.

Good luck & hoping you find an answer!

[stanleymonkey]

So the summer is over, how is the baby doing now? Has she gone gluten free? Do you ever watch Mystery DX on the OWN channel? I've seen quite a few cases of little kids with symptoms like yours . However there are so many episodes I couldn't begin to tell you which ones to look for. it sounds very suspiciously like celiac but it could be an enzyme or something her body isn't producing. If bms are pale have her liver checked. Also consider genetic testing.

Good luck & hoping you find an answer!

well, we went back to the gastro as Abigail was miserable. They are redoing the full celiac panel, plus CBC, iron and bit d, they are going to check for tapeworm. Also genetic testing. If the genetic test comes back positive its going to be classed as celiac disease, if not then non celiac gluten intolerance . We want the gene test as my husband, one of his sisters and his dad have auto immune issues, our niece is 6 and anaemia, and we have another child so itsbimportant . Gluten free here we come!!!

I feel like the weight of the world has Beebe lifted from my shoulders.......I can fix my baby and get her back to bring herself the hard part will e explaining to a 2 year old she has another issue besides anaphylactic allergies

[Takala]

Hang in there, dear, it's still possible to bake and make pancakes without egg, milk, or gluten and have the results be very good !

[stanleymonkey]

Hang in there, dear, it's still possible to bake and make pancakes without egg, milk, or gluten and have the results be very good !

I known make an awesome chocolate cupcake eg and dairy free, the egg and dairy free has been since she was 7 months old, so its all about the gluten... She'll get over it, she's young enough