Celiac? Or Something Else

[Raesmom]

Hi, all. I have a DD that is 21 months old. She has many symptoms of something, but the doctors can't figure out what is wrong with her. She has had severe eczema since she was only 1 month old. She saw an allergist when she was just over one year old. We found out that she is allergic to eggs, milk, green peas, carrots, oranges, tomatoes, pork, beef, fish, shellfish, and possibly peanuts and other legumes. Some of her other symptoms are frequent diarrhea, occassional black stools, very foul smelling stools, occassional strange smelling urine, frequent gas and very smelly burps. She is also very small for her age, she only weighs 21 pounds. She hasn't been diagnosed with failure to thrive, but she has never really been on the growth chart. She was born 5 weeks premature, but she still is just growing very slowly. She also has a very large distended abdomen.

We just took her a little over a week ago to have an EGD and a colonoscopy done to test for Celiac diseas, and the doctor said that she has a lot of swollen lymph node like nodules in her intestine. He said that they could be a sign of more food allergies, but he wasn't going to say for sure what caused them until they got the biopsies back, and that they would tell us something. Well, yesterday the nurse called and said that the results didn't show any more allergies, so all was well. I asked her what caused the inflammed nodules then and she said that the doctor just said that he wasn't worried about them and that it was "probably" just toddlers diarrhea.. Well, the nodules can't be normal or else he wouldn't have told me about them in the first place, so now I don't know what to think. I called her pedi and he is going to review the GI specialists reports and see what he can find out.

I would really appreaciate any ideas or advice or anything. I am so confused now, and kind of feel lost. I don't know what to do next. If I have left anything out, I will answer any questions that any one may have.

Thank you in advance,

Rachael

[GFinDC]

Her symptoms do sound like celiac symptoms. You can always try her on the diet and see if she improves. It could take some weeks to know for sure though, sounds like she is in a tough state intestinally speaking. I suggest you eliminate any soy from her diet regardless, as it is a known problem for intestinal development in young rats. Not saying she is a rat, but it might be that people react the same way on that level. So, why take a chance on it is my opinion. Sounds like she really needs a simple easy to digest diet at this point. Children seem to have a great abililty to recover from things like this. I think staying away from really sweet foods is a good idea too, as the sugar can feed bacteria in the gut and cause lots of gas and discomfort. I am by no means an expert on nutrition for babies or adults. So use your own instincts for feeding her something she can handle. No wheat, rye or barley, and try to avoid processed foods with long lists of strange sounding chemicals. I hope she does well. Maybe some other people with better food recommendations for kids will come along.

[feedmykids]

Don't give up! If one doctor is telling that babies with tummy problems is "normal" and to "not worry about it" I say- fire your doc. and find a new one if you can. Of course it is not OK. Ask him if he would like to live with those same symptoms and not be concerned. If they won't listen -try the gluten-free diet anyway. It couldn't hurt. My kids also have multiple food allergies. Both my DD's are allergic to peanuts, and because peanuts are a legume - it wasn't long before they also started reacting to all legumes including soy. Did you have a SPT or a bood draw to test for allergies? Food allergies can certainly cause those symptoms. One DD is allergic to milk and had celiac and has the same symptoms for both. I hope you find your answers SOon!

[April in KC]

With that many food allergies (I assume these are IGE type food allergies diagnosed either by RAST blood test or skin prick test) - I would find a pediatric GI familiar with eosinophilic disorders. They are a type of GI disorder that can occur in kids with allergies. Besides Celiac, my oldest son has food allergies and eosinophilic gastroenteritis & colitis, which cause Celiac-like symptoms, including GI pain, diarhhea and malabsorption of nutrients. The other major related form is eosinophilic esophagitis, which usually features vomiting and reflux-like symptoms. I don't know if urine would be affected, though. For more info on EOS disorders, you can visit www.apfed.org.

Lots of GIs do not know much about eosinophilic disorders, but your daughter's GI might have already tested her for it. Diagnosing it means having an endoscopy with biopsies taken at several places in the esophagus, stomach and small intestine. Sometimes they will also do a sigmoidoscopy and take few biopsies from the colon as well. Then they have to count the number of eosinophils (a type of white blood cell) per high powered field (eos/hpf) under a microscope.

If you find a GI famliar with eosinophilic disorders, it's possible he/she might be able to examine the slides from your daughter's initial biopsies and count the eosinophils.

When you say strange smelling urine, have you considered things like diabetes and maple syrup urine disease? Or another metabolic disorder? If her problems persist, it would be good to take her to a children's hospital for a second opinion.

My youngest son had eczema starting at 4 months, while exclusively breastfed. He ended up having multiple food triggers for his eczema, including gluten, corn, fish and grapes. We were eventually able to identify all the triggers and get his eczema cleared up, but it took time. It really helped to put him on Neocate formula, because it contains NO whole food proteins (the only other comparable formula is Elecare). I do believe he has Celiac, as his father and I have both since discovered that we have the disease. But there were other food intolerances that played a role. I say intolerances, because he was tested for IGE allergies and does not have any (unlike his big brother, who has multiple food allergies).

[MarsupialMama]

It does sound like she has celiac symptoms. My daughter was 19 months old and 17 pounds, constipation instead of diarrhea, undigested food in her bms, and fell off the growth chart at 9 months. Large distended abdomen? 100%. Other things too (whiney, no appetite, VERY small, etc)

If I were you, I would try the gluten free diet for a few months to see if there are improvements. My dd showed improvements in attitude, appetite, and sleep in 3 weeks. A little bit of weight gain now only after 3 months, and the abdomen has been going down in the past 2 weeks. We have had 2 gluten accidents along the way which made the improvements disappear for a few weeks, and then improvement again.

The digestive issues you are talking about can very well be caused by celiac from everything I've researched.

Good luck!

Hi, all. I have a DD that is 21 months old. She has many symptoms of something, but the doctors can't figure out what is wrong with her. She has had severe eczema since she was only 1 month old. She saw an allergist when she was just over one year old. We found out that she is allergic to eggs, milk, green peas, carrots, oranges, tomatoes, pork, beef, fish, shellfish, and possibly peanuts and other legumes. Some of her other symptoms are frequent diarrhea, occassional black stools, very foul smelling stools, occassional strange smelling urine, frequent gas and very smelly burps. She is also very small for her age, she only weighs 21 pounds. She hasn't been diagnosed with failure to thrive, but she has never really been on the growth chart. She was born 5 weeks premature, but she still is just growing very slowly. She also has a very large distended abdomen.

We just took her a little over a week ago to have an EGD and a colonoscopy done to test for Celiac diseas, and the doctor said that she has a lot of swollen lymph node like nodules in her intestine. He said that they could be a sign of more food allergies, but he wasn't going to say for sure what caused them until they got the biopsies back, and that they would tell us something. Well, yesterday the nurse called and said that the results didn't show any more allergies, so all was well. I asked her what caused the inflammed nodules then and she said that the doctor just said that he wasn't worried about them and that it was "probably" just toddlers diarrhea.. Well, the nodules can't be normal or else he wouldn't have told me about them in the first place, so now I don't know what to think. I called her pedi and he is going to review the GI specialists reports and see what he can find out.

I would really appreaciate any ideas or advice or anything. I am so confused now, and kind of feel lost. I don't know what to do next. If I have left anything out, I will answer any questions that any one may have.

Thank you in advance,

Rachael

[Raesmom]

The food allergies were diagnosed by skin prick test.

The EGD and colonoscopy that she had was done at a childrens hospital, but I talked to her pedi about the results and he got the reports and reviewed them himself, and he said that he wants us to go to a different children's hospital and get a second opinion. The first GI doc said that it was "probably" toddlers diarrhea, but the pedi thinks that it is too soon to diagnose her problems as just toddler's diarrhea without making sure every thing else is ruled out first.

I did ask if the pathologist report mentioned anything about her levels of eosinophils and the pedi said that it was all normal. He said that the report said that her esophagus looked absolutely normal and there were no signs of eosinophils there. I'm thinking that he said something about her levels of eosinophils in her colon were normal??? I may have misunderstood him though. Is it normal to have these in your intestine or not?

I will be getting a copy of all of the reports tomorrow to review personally, so maybe I will understand what he was saying better then.

As for the strange smelling urine, it has only happened a few times, maybe like less than ten times in her life. But it kind of smells sweet, nasty but yet sweet at the same time. I don't know how else to explain it. Her pedi did do a lot of blood work to check for metabolic disorders and he said they all came back normal. I don't know what caused it to smell funny, but it hasn't happened in at least a month or so. I just thought that I would mention it in case it had anything to do with what ever is going on with her.

When DD was first diagnosed with the food allergies, the allergist told us that her skin should clear up when she wasn't eating the foods that she was allergic to. But so far it hasn't cleared up. It is better than it was when she was younger, but it is still a severe case of eczema. She doesn't just have it in the "normal" eczema locations. She has it covering her entire arms and legs, backs of hands and tops of feet, and her shoulders and back, and sometimes on her belly. It used to be all over her abdomen and chest and face too, but that part has gotten better.

I mentioned to the pedi that I thought it would be a good idea for her to go back and get more allergy testing to see if she has developed any new allergies, and he agreed that we should do that. So for now we at least have a plan as to what we are going to do. It looks like we will be busy with doctors appointments for the next few months again.... But we are used to that. Hopefully the allergy testing or the second opinion from a pediatric GI will help us figure out what this is.

With that many food allergies (I assume these are IGE type food allergies diagnosed either by RAST blood test or skin prick test) - I would find a pediatric GI familiar with eosinophilic disorders. They are a type of GI disorder that can occur in kids with allergies. Besides Celiac, my oldest son has food allergies and eosinophilic gastroenteritis & colitis, which cause Celiac-like symptoms, including GI pain, diarhhea and malabsorption of nutrients. The other major related form is eosinophilic esophagitis, which usually features vomiting and reflux-like symptoms. I don't know if urine would be affected, though. For more info on EOS disorders, you can visit www.apfed.org.

Lots of GIs do not know much about eosinophilic disorders, but your daughter's GI might have already tested her for it. Diagnosing it means having an endoscopy with biopsies taken at several places in the esophagus, stomach and small intestine. Sometimes they will also do a sigmoidoscopy and take few biopsies from the colon as well. Then they have to count the number of eosinophils (a type of white blood cell) per high powered field (eos/hpf) under a microscope.

If you find a GI famliar with eosinophilic disorders, it's possible he/she might be able to examine the slides from your daughter's initial biopsies and count the eosinophils.

When you say strange smelling urine, have you considered things like diabetes and maple syrup urine disease? Or another metabolic disorder? If her problems persist, it would be good to take her to a children's hospital for a second opinion.

My youngest son had eczema starting at 4 months, while exclusively breastfed. He ended up having multiple food triggers for his eczema, including gluten, corn, fish and grapes. We were eventually able to identify all the triggers and get his eczema cleared up, but it took time. It really helped to put him on Neocate formula, because it contains NO whole food proteins (the only other comparable formula is Elecare). I do believe he has Celiac, as his father and I have both since discovered that we have the disease. But there were other food intolerances that played a role. I say intolerances, because he was tested for IGE allergies and does not have any (unlike his big brother, who has multiple food allergies).

[Fiddle-Faddle]

Great advice from everyone.

It could be celiac. Trying the diet might give you a VERY clear answer.

You also might want to research vaccines (nvic.org is a good place to start)--there is DEFINITELY a link, I don't care what the doctors and studies say. The studies are all funded by the pharmaceutical industry anyway, so you're not going to find any honesty there.

My son's severe eczema started with his 4-month shots. Even the pediatric dermatologist said that it was clearly a drug reaction--and those shots were the only drugs he'd had. He was not on gluten at that time, and I stopped eating all gluten and casein in case he was getting it through my milk--and there was no change. But when he went first gluten-free--his eczema completely disappeared, only to reappear when we gave him wheat again.

He's now gluten-free and eczema-free!

Best of luck--it's SUCH a tiring battle, dealing with doctors.