wsieving

Thank you for all of your responses. You are right, I should not leave her with anybody who cannot be trusted. I hope this doesn't become an issue, but if it does, I will just have to stick to my guns because my daughter is too important. The letter about what it can cause to happen is a fantastic idea! I had already thought of giving a list of what she cannot have, but never considered letting them know the full repercussions (they already know she gets diarrhea and rashes, but don't really understand why). Thanks for the helpful advice!

Ok, so now that we are scheduled to see a specialist, and we are 99% sure DD has Celiac, we have started talking to our families about it. I just can't believe some of the responses I get. The biggest one I am perturbed about is my MIL who is dingy anyway (she was once watching the weather channel, the TV was showing something coming from the NW, and she said, yep, not warm, got that right! We are explaining to her what it is, and why they think she has it. She is head strong that she couldn't possibly have something like that and asks me, did you have them check her thyroid? I bet her thyroid is out of whack..... So again I re-list all of her symptoms, which mostly have nothing to do with low/high thyroid levels. She just changes the subject because she doesn't want to listen to it. I love my MIL dearly... she is the best there is. But with this, I have to wonder if I leave my child with her after we take her off of gluten, if she will gluten her because she thinks she is all knowing.

Have any of you experienced this when telling your families?

Also, we are suggesting to our brothers and sisters that it might be a good idea if one of us tests positive for celiac also that it may be a good idea for them to be tested (we see symptoms in my Dad, and in DH's sister and kids.). My brother just doesn't give a rats hiney, and most others just kind of blew us off also. I just really don't get it.

I'm about an hour and a half south of KC.

I posted this in another forum and never seemed to get any kind of response, so I will post it here in hopes that I can get an answer.

I am wondering if the concentration of gluten is higher in some foods, thus causing a stronger reaction, than in others. Our biggest clue to start looking in the direction of celiac disease was that our DD just cannot tolerate pasta at all. Other foods seem to bother her, but mildly compared to what pastas do to her. Is it because pasta contains more gluten than other things?

Growing up I always had a lot of baby dolls. One thing I always noticed about them is that they all always had two dimples right above their but cheeks. Never in my life had I ever actually seen any real baby that had those. Well, now that DD has thinned down she has two very visible dimples in the same spot. I am wondering if anyone else noticed these on their little one while they were so skinny. It's kind of cute, I always wondered why they always put those dimples on baby dolls.

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 .

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.

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?

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.

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?

Im having my daughter tested, although she has no symptoms. She is 15yrs old. I was diagnosed just over a year ago and for peace of mind, i want to make sure she is ok. has anyone had their children tested positive without any symptoms ? My 17yr old son went on the diet on his own, because of bad stomach pain and is now on the gluten free diet. Hopefully my daughter will test neg.

Steve

I think it is great you are having her tested! My 13 month old daughter is getting tested tomorrow, and seems pretty obviously celiac. If she tests positive we will be having EVERY member of our family tested just to be sure. We have a history of digestive problems, and this may be the key to it all.

I would not be surprised if your daughter tests positive. It seems that I read somewhere that a father has a higher percentage chance of passing it on to his daughter than to his son. I hope it comes out neg, good luck to you!

I am wondering if there is anyone who had worse symptoms pre-diagnosis with certain foods than others? My daughter absolutely cannot tolerate pasta, but other foods do not seem to bother her as much. Is there something in pasta that is higher in gluten than other foods?

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.

Well I finally got her in to see an actual pediatrician today. He is gathering all of her previous records from our family doc and we will go back in one week. He will do a full physical examination then, also will run allergy panels. DD had a horrid bout of diarrhea in the middle of the night last night. She woke up screaming like she never has before.... we had fettuccine for dinner last night. Her bottom was so rashy and swollen. We felt so sorry for her and helpless as parents at the same time. Thank goodness she had an appointment today.

Are the IGG tests accurate for children as young as she is? Should I be making sure I incorporate lots of glutens before her appointment?

Hello everyone! I stumbled upon this board and am amazed at the information that is here! I know you all get a lot of questions and I have tried to read through all of them that I thought came close to the information I was needing... however I think I have one you haven't heard, or maybe not in awhile.

My daughter is 13 months old. Ever since I can remember it has been a fight getting her to eat. Some days are better than others, but most of the time I worry that she isn't ever eating enough. She is breastfed, so at least I know she is getting that much. It never really concerned me until she started having water diarrhea that just would not go away. It lasted for probably 3 weeks and was also (of course...) accompanied by a horrible rash. This was about 3 months ago. She was due for her well baby checkup so we went to see the doc on our regularly scheduled time. She had dropped weight. I still do not know how much because they keep giving me the wrong weight chart (I normally write everything down after the appt, but the last one she had before this was just a pre-op physical before she had lachrymal duct surgery on her eye). Then the doc says, come here Mama, I want you to feel something. He had me place my fingers in her groin area and feel her swollen lymph nodes. I have 2 other children and never experienced this, so it really startled me. He said she looked a tad anemic too, so we had her finger poked (levels were normal), and he said if the swelling wasn't better in 2 weeks come back. 2 weeks later she was still swollen, but we had the diarrhea under control. I took her back in and doc says, they aren't huge so lets give it another month and if they aren't gone come back... Ok so a month later we go back. In the mean time she had on and off diarrhea/constipation, same lack of appetite, etc.. I asked him if it was possible that it was allergy related because she has always also had a rash on her cheeks that I found a bit odd. He thought that was absurd, ordered a CBC to make sure that it wasn't anything serious, and sent me on my way. CBC came back normal. That was a huge sigh of relief, but I still felt something had to be causing this.

Here it is 3 months later and she still has swollen glands. Still has occasional diarrhea/constipation. Still a finicky eater. She has dropped to the 5% in weight which is unheard of for my children... both of my boys were always above average. I started doing research of my own and everything seems to be pointing to a gluten intolerance IMO. At first I thought it was dairy because we have a strong history of that in my family. But I have noticed trends with what she eats and how her stools are. Today she had diarrhea with a rash on her bum, and last night we ate Pizza, she also had mac n cheese for lunch today before she had a bm.

Has anyone ever experienced swollen glands in the groin area as a symptom? Am I just being a crazy mom? And if I am on to something, how to I walk in to a new pediatrician's office and insist to them that I think this is what is wrong without looking like a mom with Munchhausen?

I appreciate any advice you can give!