Testing Tomorrow 13 Month Old

[wsieving]

Well, tomorrow is the big day. We are headed to the pediatrician for a full physical and blood/allergy testing. I am so nervous about these results. She looks so obviously celiac to us. We have always felt we had to "force feed" her, she still doesn't sleep through the night, her weight fluctuates constantly, diarrhea/constipation always, the list goes on and on... Pediatrician told us not to avoid gluten, but we have avoided pastas because they seem to cause the most severe reaction.... horrid horrid diarrhea, stomach cramps, swollen blistery rash... But tonight we had rotini with dinner just as a check and see kind of thing since she had been fine for over a week now. Within 2 hours she had horrible diarrhea.

I am so worried that her tests are going to come back negative and this is going to be an endless battle until she gets older. I do not want to put her on a gluten free diet until we know for sure that is what it is. Are blood allergy tests very inaccurate for children this young? Are they getting better? I would really appreciate any input to relieve some of my anxiety.

[April in KC]

Prepare yourself for possible negative tests and unanswered questions. There are studies that say the antibodies don't always show up until kids are 3 - 5 years old. I have three gluten intolerant kids (what happens when two undiagnosed Celiacs unknowingly marry.) We tested our three boys when they were 6 years, 3 years and 9 months.

My 6 year old was positive on all five antibody tests given (AGA-IGA, AGA-IGG, Reticulin, TTG and EMA). My 3-year-old and 9-month old did not have ANY positives, antibody-wise. But they were symptomatic. The 3-year-old had 2 or 3 loose stools per day and had lost 5 lbs. over several months. The baby vomited cereals and had really bad eczema. Both of these "negative" kids had a fantastic response to a gluten-free diet. The GI symptoms do not stop overnight...there are fewer tummy aches right away, but slower improvement in loose stools over 6-8 weeks. So if you do ever try it, give it a "fair shake" and try at least a month, longer if you can.

We opted to get the gene test for the 3-year-old, to help increase our confidence that we were doing the right thing. No big surprise, he does have the HLA-DQ2 genetics.

[April in KC]

I forgot to say, GOOD LUCK!!!

I think in a highly symptomatic child, they might be willing to do an endoscopy with biopsies. They can look for other things besides Celiac.

Are you getting IGE allergy testing, as well? Sometimes this is called RAST testing. She could have wheat allergy, which is due to a different type of antibody than Celiac Disease.

I hope you get a "clean" answer that helps you. Sure sounds like it could be Celiac.

[wsieving]

I am not too sure what test he is doing. He is a foreign guy, so really hard to understand. He is a great pediatrician though, won pediatrician of the year award last year. What I did understand about a test he talked about was for multiple things, 25 different things I think he said. Should I request a different kind of testing?

[wsieving]

Ok, well her symptoms were so classic Celiac that he did not want to poke her today. He said it would end in seeing a pediatric gastroentologist who would poke her again anyway, and didn't want to put her through unnecessary pokes. So he referred me to a specialist in Kansas City at Childrens Mercy. We will find out tomorrow when her appointment is. Hopefully it will not take long to get in to see him/her because I really want to go ahead and put DD on a gluten free diet. I feel everyday like I am poisoning her on purpose .

I asked him about accuracy for testing at her age, and he said some are inaccurate, but that the one he was sending her for was not. Anybody have any idea what kind of test is right on accurate for children this age? My DD is 13 months.

[April in KC]

I hope you're going to see Dr. Craig Friesen at Mercy - I think he's great.

[wsieving]

I hope you're going to see Dr. Craig Friesen at Mercy - I think he's great.

Are you from Missouri? We were referred to Dr. Robert Kane. Have you heard of him? Should I ask for a different doc?

[Fiddle-Faddle]

I don't know of any test on a 13 month old that is extremely accurate--except for dietary response.

I have a friend whose 5-year-old's tests show no signs whatsoever of gluten intolerance, but his reactions are VERY strong. The answer: a gluten-free diet.

You don't need a doctor's permission to go on it, and if all symptoms go away, you have your answer with NO RISK. A gastro will want to do an endoscopy/biopsy, which IS risky--and could still be a false negative.

The only risk with a gluten-free diet is that there might be something else going on, and if the gluten-free diet relieves some but not all symptoms, then it's hard to figure out what is what.

I can't believe that any doctor would purposely give their child gluten if it made them terribly ill, just to make a test come out right.

It's like waiting to diagnose a peanut allergy until the patient goes into anaphylactic shock ("yeah, we know you have diarrhea and eczema every time you eat this, but we want to wait until your intestines are really badly damaged--then and only then will we say you shouldn't eat gluten. Oh, and by the way, the test for that is invasive, somewhat risky in that it involves anesthesia, and it's very expensive.")

Honestly, I think that is ridiculous.

[wsieving]

I don't know of any test on a 13 month old that is extremely accurate--except for dietary response.

I have a friend whose 5-year-old's tests show no signs whatsoever of gluten intolerance, but his reactions are VERY strong. The answer: a gluten-free diet.

You don't need a doctor's permission to go on it, and if all symptoms go away, you have your answer with NO RISK. A gastro will want to do an endoscopy/biopsy, which IS risky--and could still be a false negative.

The only risk with a gluten-free diet is that there might be something else going on, and if the gluten-free diet relieves some but not all symptoms, then it's hard to figure out what is what.

I can't believe that any doctor would purposely give their child gluten if it made them terribly ill, just to make a test come out right.

It's like waiting to diagnose a peanut allergy until the patient goes into anaphylactic shock ("yeah, we know you have diarrhea and eczema every time you eat this, but we want to wait until your intestines are really badly damaged--then and only then will we say you shouldn't eat gluten. Oh, and by the way, the test for that is invasive, somewhat risky in that it involves anesthesia, and it's very expensive.")

Honestly, I think that is ridiculous.

Fiddle Faddle, I came here for support and answers. Not for someone to criticize me. I am not sure why you felt the need to attack someone who is so new to this and still has much to learn.

If I knew beyond a shadow of a doubt that she was Celiac, or if someone in my family already had a diagnosis, without a doubt she would already be on a gluten-free diet after exhibiting the GI symptoms she has. My husband and I will be having testing as we both could be Celiac after doing the research we have for her, but as of right now nothing is confirmed. I am not a doctor and I am not going to presume a diagnosis for my child who needs medical attention. That would be ridiculous. As a parent, I need to try and find out what it is. Obviously they will run other allergy tests on her also. Perhaps it is something else, just wheat, or maybe not even food related. How am I to know? Maybe her results will come back negative for everything and they will not find anything wrong. At least then I would know that I didn't neglect to find out what the problem is just because I thought I was all knowing and that she must be Celiac. That would be the point that I would treat her myself with a special diet and see if that helps. But I absolutely will NOT presume to be a doctor, and know more than a doctor.

I never said I was going to continue to feed her gluten if we didn't get a positive test. However, her pediatrician ensured me she was in no immediate danger. She is hitting all of her developmental milestones, has no cognitive delays at all.

Furthermore, from what I have been told, they will first draw blood. If her results show pretty positive that it really is Celiac, I do not have to allow them to do an endoscopy. This is something DH and I are still discussing. She has been under anesthesia before for lachrymal duct surgery. Yes, that was less invasive, but we still had a difficult time with it. In the end, we decided to have it done, put her through one day of discomfort, so that the rest of her days would be comfortable. We do not look forward to putting her through something even more serious, but that is a decision that we, as her parents, have to make for ourselves. We have to take into account her best interests and make an educated decision from there. I have never been a person to take what a doctor says as gospel. When the time comes, we will make an informed decision, and that is our choice as her parents. We have insurance so we are not worried about the cost. What kind of price can you put on your child's health anyway?

It will be enough for me to know that there isn't something else going on. I need to know that before I just say, YEP, she's got celiac disease. Again, I am not a doctor, and I would never presume to make that diagnosis myself.

The doctors at Children's Mercy are top notch docs. I would never send her anywhere else. I trust that they will take care of her and find out what is causing this. I also trust that they would never put her through anything unnecessary, as from our experience, they take very special care of their pint sized patients.

Next time, maybe you should consider your tone before responding to a post. Maybe you weren't trying to come across as being crass. But it isn't your job to tell me I am being ridiculous. Advice is wonderful, but I didn't ask for criticism.

[April in KC]

I have not seen Dr. Kane, so I can't tell you, but most of the docs at the Mercy clinics are good. In the GI clinic, my kids have seen Dr. San Pablo and Dr. Friesen. We like Friesen because he also has a special interest in kids with food allergies and eosinophilic disorders in addition to the regular GI stuff. My oldest son has multiple food allergies in addition to the Celiac Disease. He stilll wasn't doing well after a year on the gluten-free diet, and one doc we visited didn't really want to do further investigation. Dr. Friesen found that he had eosinophilic gastroenteritis as well as Celiac. He also listened to our description of our son's slight gross motor delay, and had him tested for vitamin E deficiency, which he had. So we like him because he's sharp, his interests fit our needs, and he's also good with the kids.

With our oldest son, his tests were so clearly Celiac that no one really reprimanded us for not wanting to do an endoscopy. As one doc said, there was nothing besides Celiac that would cause an EMA test to be positive. However, in retrospect, I really wish that we had done the endoscopy with biopsies earlier - then we might have had the eosinophilic disorder diagnosed earlier. A year later when we were still dealing with problems and we opted to do the endoscopy at Mercy, the experience was great. They have a wonderful child-centered way of doing things. DS and I could walk through the whole "story" of what was going to happen to him online before the day of the procedure. He could bring his favorite stuffed animal or blanket in with him, and his stuffed animal got a matching bracelet. They let him pick his favorite flavor of "sleepy air," and they gave him the sleepy air BEFORE inserting the IV (which was one of my biggest fears). The procedure was over in a flash and he was soon being pulled around in a wagon - had a cute T-shirt, etc. They make it pretty fun for the kids.

And, yes, I'm relatively close to the KC area.

[Fiddle-Faddle]

Fiddle Faddle, I came here for support and answers. Not for someone to criticize me. I am not sure why you felt the need to attack someone who is so new to this and still has much to learn.

I realize that this must be a very stressful time for you.

I was not criticizing YOU, but the vast majority of doctors (yes, even pediatricians) who push for unnecessary surgical procedures.

When I was a baby, the leading pediatric orthopedist in NYC told my mother that I had a degenerative bone disease, that I would need to be institutionalized, and that I would never walk.

Luckily, my mother didn't believe him. He was wrong. I had hip displasia. The bones grew in, and I'm fine.

Our oldest son underwent a truly necessary surgery (open-heart surgery at age 2)--but the risks were NOT explained to us other than a casual, "there is a risk of infection." Thankfully, he never developed one--but had major developmental regression, lost almost all speech, and lost eye contact. Nobody warned us of these risks; heck, they never even admitted that there was any chance of his dying on the table, even though I asked, specifically), but one of the nurses actually laughed at me and said, "what did you expect?"

Later, we found all kinds of research on neurological loss following surgery--but it was all on adult patients. There was NO research on the very same problems with pediatric patients. We also found out that the risks for an adult dying on the table were 5-10%. Again, we could find nothing on peds. Nowadays, it might even be higher, because of MRSA.

Only 2 years after that, our #2 son's dentist wanted to knock him out to do restorative work on his front teeth, which she said were severely decayed. He wasn't even 2.

We got another opinion, and found that the teeth weren't decayed at all, but merely discolored due to my having been given antibiotics and iron during pregnancy.

My #2 son had a friend who had had recurring fevers and swollen lymph nodes, so the doctor took them out.

He then caught a virus, the remaining lymph nodes became swollen, his doctor had the parents rush him to the hospital, where they pumped him full of antibiotics. He went into seizures; they said it was encephalitis, kept him on high doses of antibiotics, and put him into a medically induced coma. A week later, they said it wasn't a bacterial infection (surprise surprise), but had to keep him in a coma, as he was still seizing.

He died 3 months later, not from the encephalitis, but of a hospital-acquired MRSA infection. He never regained consciousness.

He was 8 years old.

In my experience, I (as the mom) have known more than the doctor about what has been wrong with my children EVERY SINGLE TIME. I have no formal medical degree. I don't think a formal medical degree means the world, as the training the medical students receive is geared to pharmaceutical and surgical treatments.

The experience of a wise doctor is priceless--but the experience of many (not all) of the ones I have seen (and it's been quite a lot) has been meaningless. For example, they tell you that it couldn't be celiac disease "because you don't look celiac." That's their experience, after all, right?

I really do hope that things are a lot better at Mercy than at Children's Hospital of Pittsburgh (where I was not allowed to nurse or hold my little one for over 30 hours following surgery.

I was NOT attacking you. You are looking for answers and support. I am simply sharing what I have observed and experienced.

You say that you would keep her on a gluten-free diet if you knew beyond a shadow of a doubt. You've already got that from dietary response. The only thing a biopsy/endoscopy could show is (besides for visible signs of celiac, which is not something reliable in kids this young) is if she has signs NOW of eosinphilic disorder. But she might develop those signs later, anyway, no matter what you see now, so it could rule it IN, but not rule it OUT.

I believe your doctor is wrong; continued gluten ingestion DOES cause damage, sometimes irreversible, though that is less likely with pediatric patients than with adults. But there is no way to measure this; damage is far more than damaged villi. The immune system, the neurological system, even the brain can be permanently affected.

I've seen it. Heck, I've lived with it.

If you don't like what I am saying, you don't have to agree with me. But your lashing out at me sounds like #1) You are very stressed right now (TOTALLY understandable) and #2) You are looking for a particular kind of answer/info (i.e., not what I have to offer.

[wsieving]

I realize that this must be a very stressful time for you.

I was not criticizing YOU, but the vast majority of doctors (yes, even pediatricians) who push for unnecessary surgical procedures.

When I was a baby, the leading pediatric orthopedist in NYC told my mother that I had a degenerative bone disease, that I would need to be institutionalized, and that I would never walk.

Luckily, my mother didn't believe him. He was wrong. I had hip displasia. The bones grew in, and I'm fine.

Our oldest son underwent a truly necessary surgery (open-heart surgery at age 2)--but the risks were NOT explained to us other than a casual, "there is a risk of infection." Thankfully, he never developed one--but had major developmental regression, lost almost all speech, and lost eye contact. Nobody warned us of these risks; heck, they never even admitted that there was any chance of his dying on the table, even though I asked, specifically), but one of the nurses actually laughed at me and said, "what did you expect?"

Later, we found all kinds of research on neurological loss following surgery--but it was all on adult patients. There was NO research on the very same problems with pediatric patients. We also found out that the risks for an adult dying on the table were 5-10%. Again, we could find nothing on peds. Nowadays, it might even be higher, because of MRSA.

Only 2 years after that, our #2 son's dentist wanted to knock him out to do restorative work on his front teeth, which she said were severely decayed. He wasn't even 2.

We got another opinion, and found that the teeth weren't decayed at all, but merely discolored due to my having been given antibiotics and iron during pregnancy.

My #2 son had a friend who had had recurring fevers and swollen lymph nodes, so the doctor took them out.

He then caught a virus, the remaining lymph nodes became swollen, his doctor had the parents rush him to the hospital, where they pumped him full of antibiotics. He went into seizures; they said it was encephalitis, kept him on high doses of antibiotics, and put him into a medically induced coma. A week later, they said it wasn't a bacterial infection (surprise surprise), but had to keep him in a coma, as he was still seizing.

He died 3 months later, not from the encephalitis, but of a hospital-acquired MRSA infection. He never regained consciousness.

He was 8 years old.

In my experience, I (as the mom) have known more than the doctor about what has been wrong with my children EVERY SINGLE TIME. I have no formal medical degree. I don't think a formal medical degree means the world, as the training the medical students receive is geared to pharmaceutical and surgical treatments.

The experience of a wise doctor is priceless--but the experience of many (not all) of the ones I have seen (and it's been quite a lot) has been meaningless. For example, they tell you that it couldn't be celiac disease "because you don't look celiac." That's their experience, after all, right?

I really do hope that things are a lot better at Mercy than at Children's Hospital of Pittsburgh (where I was not allowed to nurse or hold my little one for over 30 hours following surgery.

I was NOT attacking you. You are looking for answers and support. I am simply sharing what I have observed and experienced.

You say that you would keep her on a gluten-free diet if you knew beyond a shadow of a doubt. You've already got that from dietary response. The only thing a biopsy/endoscopy could show is (besides for visible signs of celiac, which is not something reliable in kids this young) is if she has signs NOW of eosinphilic disorder. But she might develop those signs later, anyway, no matter what you see now, so it could rule it IN, but not rule it OUT.

I believe your doctor is wrong; continued gluten ingestion DOES cause damage, sometimes irreversible, though that is less likely with pediatric patients than with adults. But there is no way to measure this; damage is far more than damaged villi. The immune system, the neurological system, even the brain can be permanently affected.

I've seen it. Heck, I've lived with it.

If you don't like what I am saying, you don't have to agree with me. But your lashing out at me sounds like #1) You are very stressed right now (TOTALLY understandable) and #2) You are looking for a particular kind of answer/info (i.e., not what I have to offer.

I'm sorry I jumped to conclusions. I misread what you had said and took it as an accusation towards me for being ridiculous. I really didn't want to start off on a bad foot on this board. I hope that you don't hold it against me. Again, I am really sorry.

I have had previous experience with the docs at Childrens Mercy, and have heard wonderful things about their other specialists are really great. So hopefully they will live up to our expectations. I am not putting all of my faith in one man, but I really do feel the need to make sure there are no underlying issues before I call this a chapter closed.

Thanks for your advice, and I hope that our next encounter is more pleasant .

[Fiddle-Faddle]

Nah, I should have been clearer.

I hope things work out well--please keep us posted!

[crittermom]

My DS had the same problems as your little one last year. He had 7-9 bm's per day, all green or clay colored. Very irritable, rash on the bottom and food coming out comletely undigested dark purple circles anda terribly distended belly. We did the gene test when his sister was diagnosed with celiac and it was positive. His blood tests were neg but GI was concerned about food, bm frequency and consistency, and constant complaints of stomach aches. After many non invasive tests that all came back normal we had to decide if we wanted to do a scope. After a lot of discussion my dh and I decided to go ahead with the scope. The GI said his duodenum looked suspicious but once it came back from the lab it turned out to be negative. I decided to take him gluten free since everything else checked out normal. Everything stopped within a few days and completely resolved within a couple of weeks. We kept a food diary and did a couple of gluten challenges and recorded all the symptoms when they came flooding back. We have a gluten free house now and everyone is happy and having normal bm's. (Yes our house revolves around everyone's bowel movements!) We have decided to keep DS gluten free until he is old enough to tell us how he is feeling and let it be his decision if he wants to challenge it for a medical diagnosis.

This is our story which seems similar to yours. I wish you luck and hope you find answers for your little one whichever route you take.