New - What Do You Guys Think?

[happierthanabird]

I apologize in advance for the length of this.

Background. My daughter Kayten was born July 2008 with an imperforate anus ( IA aka no bum hole). She had a colostomy for the first 13 months of her life. At 11 months she had surgery forming her anus. A couple of months after her colostomy take down she was started on laxatives as is standard practice for IA kids. (Oh and we went to the experts on IA in Cincinnati. This is all they do and the 2 top doctors in the field, one of which pioneered the PSARP (pull through, bum surgery), both performed her surgery, and are committed to her lifelong care and comfort. Though via email and phone calls because we live in Utah.) And she had started to show some constipation, though not really bad. She lots of little poops if I remember right, kind of like rabbit pellets. She was young and still on formula and working on table foods. She never cared for baby food.

More background. She had intrauterine growth restriction, I had pre-eclampsia, and I was induced at 36 weeks. She weighed 4 lbs 10 oz and was 17 1/2 inches long. She did great in the weight gaining department until she was a few months old and then she would hit these plateaus for months at a time, then have another little jump which was a cause for huge celebration for me and my husband and her pediatrician. Then we'd be back to where we were. She was 14 lbs 12 oz at her 1 year check up. She had great delays in motor skills, which we attributed to her colostomy making tummy time uncomfortable, etc. She crawled at 11 months (right after her PSARP surgery) and then walked at 15 months. Now she is 2 years and 4 months and runs and skips and hops and gallops (her latest favorite form of transportation). She weighed in at 20 lbs 8 oz last monday, and FINALLY made it onto the growth chart for height again at 32 or 33 inches, I can't remember exactly because they said CM then the nurse went conversion happy and told me feet and inches and inches and it all meshed together in my brain. This visit was our second with an endocrinologist. We first went in June and had a whole lot of blood work done for thyroid and all of that and all of it came back normal. This was a follow up for growth and she impressed them. The only thing that changed between June and the end of October was that we stopped giving her laxatives in August because it had been giving her dirrhea for pretty much the whole last year. So great, growth problem solved right? Maybe...

More background. Kayten had pretty bad infant reflux, or so it seemed. The tests showed "mild reflux" but we had excessive projectile vomit multiple times a day for a long time, then that calmed down to just occasionally but multipe times a week. She was a formula fed baby from day 1 and we moved her from regular to sensitive to try and help the reflux. The vomiting continued when she became upright, when she started solids and table foods. Continued after we weened her off of formula. Not as much, but still too frequently. Thankfully it did slow down and now is fairly rare, but occasionally she'll surprise me with a random throw up. I did used to let her have a cup of milk before bed and that often resulted in throw up, but milk doesn't bother her any other time of day and lately she's been drinking a ton of it with no obvious negative results.

Okay. I started considering celiac being a problem with her about 6 months ago. I saw something on a forum that made me wonder and I started looking into symptoms and was surprised when I saw quite a few fit her. So I took her into the dr for bloodwork. Her pediatrician was out for the week because his wife had just had a baby so his assistant ordered the blood work and just called us and said things looked normal. I believe the pediatrician looked at it when he came back and agreed and had a nurse call me again. Then we had to switch doctors due to insurance changes (my husband deployed so now we are on tricare). I gave our knew dr the whole schpeel when we first took Kayten in. His thought was to send her to GI, but we had a lot of issues getting that referral to go through properly and to the right doctor, and then when I finally called and said we wanted to be seen because of her lack of growth they said we wanted to go to a follow up nutrition clinic instead so I never made an appointment anywhere and was just confused.

So I do have the referral to go see GI, I just need to know what to tell them when scheduling and appointment. Do I say we suspect celiac and would like to have testing done?

Now for what I think are her symptoms. These are one I saw on an about.com article.

-Constipation and/or diarrhea (I've seen both since stopping laxatives, usually more of the first though.

- Nausea/vomiting (described above)

-weird smelling poop (kind of like moth balls sometimes, esp when its harder and she's a little backed up, REALLY horrendously stinky when its wetter. She went to a sitter today who had to comment on how stinky it was. She said it seemed like something she ate didn't agree with her.)

-Bruising easily (she always has bruises on her legs from little stumbles. And she seems to stumble a lot. I've noticed a few times she seems to trip over absolutely nothing, just falls.)

-possibly some anxiety, hard to tell with a 2 year old though, and hard to tell with my husband deployed and any possible effects because of that. I know she gets anxious when I leave her with a sitter too long.

-growth delay in children (described above)

- muscle cramps and joint pain (I am not sure what exactly is going on with her, but she complains about her knees a lot. She's woken up a few times at night hysterical and pointing at her knees. this is a newer thing)

She also has weird eating habits and goes through phases. Right now she seems very against a lot of carbs. She freaked out when I offered her a graham cracker for a snack. She LOVES veggies, which helps her poop. She's always loved meat, prefers plain chicken to a nugget.

Reading a little bit on here I am feeling more convinced its celiac, but I don't know. I had an appointment with our doctor today and I mentioned my concerns again and he said maybe it wouldn't hurt to do the blood work again. I told him I'd heard that blood work wasn't very reliable and he said that he thought it was. I told him I'd heard about the entrolab stool test, which he hadn't heard of but was going to look into.

So what do you guys think? The poop issues are hard for me to tell because stuff could be related to IA, but she is also not like any IA kid I have heard of before. Some kids are able to outgrown their laxative as they learn to listen to their bodies and such, but not a 2 year old.

What should I say to GI when I call them?

Any thing else you feel like sharing with me or suggestions are greatly appreciated!

Thanks for taking the time to read my novel! =)

Lindsey

[Katie B]

Hi Happier,

everyone's probably tired of my posts but when it comes to diet I've been through the gamut of options.

I personally think that there's a strong possibility that your daughter may have celiac disease and often times it's difficult to get a firm diagnosis. I personally haven't gotten a 100% diagnosis but the inconvenience of the diet vs the side effects makes it totally worth eliminating gluten.

I've also had to go one step further and go on the low FODMAP diet because I suffer from small intestinal bacterial overgrowth. This diet eliminates/limits foods that are difficult to digest (like carbs) and limits the amount of food for the bacteria. It's similar to the specific carbohydrate diet but I find the low FODMAP diet more appropriate because I have some degree of fructose malabsorption as well.

I understand that some people are also sensitive to food chemicals like amines - I don't seem to have a problem with this (as of yet...).

Anyways, when you mention that her movements are very stinky it stuck out to me because it means that for whatever reason the intestines aren't digesting everything and the bacteria are multiplying and creating the smell (this is just my opinion!). I had this experience and since removing or limiting the appropriate foods I've found that things are a lot less stinky. I'm also taking PEG to keep things moving (so there isn't a build up of bacteria) and this is a non-fermentable laxative. Initially I was taking lactulose and that created a HUGE problem because it was actually feeding the bacteria!!!

When it comes to food sensitivities there are so many options and it can be quite overwhelming - between celiac disease, lactose intolerance, fructose malabsorption, small intestinal bacterial overgrowth and the ever ubiquitous (and often meaningless) IBS. A lot of people with celiac have overlapping sensitivities as well.

Eliminating gluten is a good first start (she must be eating gluten in order to ensure the accuracy of tests) and lactose is a common offender as well.

It's best to take it one step at a time so it's not too much. The fact that she doesn't want to eat carbs may be a good hint that they aren't making her feel well - either because of the gluten or because wheat is fermentable - or both.

Sorry if this is confusing! I hope this helps a bit. If you'd like more info. and links just shoot me a message and I can help out. It's amazing that you're doing the necessary research!

[happierthanabird]

Thanks for the reply and info. I will keep her diet normal through testing. I hope we can get some answers. I know when I first started reading about symptoms I was so happy and felt so relieved because it just felt like this was the answer to her problems. But then the negative test threw me off.

And with all of her medical issues I have learned I need to be informed so I can push the doctors to do the right thing. If that hadn't been the case she would have had her pull through surgery done by a doctor who missed a very obvious and important thing examining her, something the doctor who did her surgery noticed within seconds of examining her.

Anyway thanks again!