My 2 Year Old was just diagnosed with LC :(

Post by **tex** » Mon Sep 08, 2008 3:19 pm

Neat photos! You've got a great-looking family coming on.

Now that you're waiting, she probably won't have a BM for a day or two. LOL. You know how that goes - a watched pot never boils.

A lot of health food stores carry "Oatios", and Oatios are what I used to determine whether or not I was intolerant to oats, (because they're certified to be wheat free, and they contain no artificial colors, flavors, or preservatives - you can see that by clicking on the "Attributes" link to the right of the box on this site).

http://www.usmillsllc.com/usmills/produ ... php?id=144

Unfortunately, it turned out that I am indeed intolerant to oats, even though many of the "experts" claim that most celiacs can safely eat pure oats. I think that they probably just haven't tested them long enough, in most cases. It took me six weeks before I started reacting to them, but once I started reacting, it took another six weeks to get rid of the D.

Tex

Sara East · Post by **Sara East** » Mon Sep 08, 2008 6:58 pm

Your kids are adorable! Looks like you went the route I did and had them close together lol :) My oldest daughter and middle son are 18 months apart...I thought it was a good idea at the time but after the second was born I wondered what the heck I got myself into! My third is three years younger than my middle one and that is a bit easier. Unfortunately I just miscarried last week, it wasn't planned but we were going to have one more in a few years. I was pretty upset at being pregnant so soon but then I felt even worse for thinking that way when I lost the pregnancy. I ended up going in and having a D&E last week because I had a lot of bleeding in my uterus...the docs were concerned that I looked 4 months pregnant when I was only 6 weeks and did an ultra sound. The US showed the embryo hadn't developed properly and my tummy was so big because of all the bleeding inside. For the D&E they gave me vicadin (sp?) and I told them I have a tolerance to drugs and that wouldn't work for me. They didn't believe me and did it anyway and it hurt like hell! This was only a week after the horrible endoscopy incident and when I asked a few friends who had to have a D&E they said they put them completely under. Why do I keep getting crappy doctors that don't care how bad they hurt me? More importantly, why does my body keep putting me through hell lol? I've had so many medical problems, surgeries, and procedures the past 7 years it's unbelievable! When I have to fill out my medical history at doctor's offices it takes me two sheets of paper. It's gotten so bad the kids get excited when I go into the hospital because they have the menu memorized and have their favorite dishes they like to order up :)

Camryn'sMommy · Post by **Camryn'sMommy** » Tue Sep 09, 2008 8:57 am

Tex - thanks, I'm going to try to Oatios.

Sara - I'm so sorry to hear about your m/c. How old is your youngest? You just do not have good luck with Drs! You remind me of me. When I go to the Dr. I have a list of things to write down. If my husband is in the room when they ask my medical history, he just laughs and shakes his head.

Here is me in a nutshell:

Age 2: Heart surgery for Patent ductous arteriosis, heart catheterization
Age 4: Dehydrated and Hospitalized
Age 5: Pneumonia and Hospitalized
Age 7: Plastic surgery for dog bite to face
Age 10: Surgery for broken arm
Age 17: Surgery for bunions (they had to break my foot and I was in a cast for 6 weeks)
Age 18: Same foot surgery, but the other foot
Age 19: Endoscopy - dx'd with IBS, Gerd and gastritis; Dx'd with Scalp Psoriasis
Age 21: Sigmoidoscopy (I was awake! Never again)
Age 22: Endoscopy - dx'd with hiatal hernia and duodenum reflux; Nose surgery for deviated septum
Age 24: Colonoscopy - dx'd with a benign polyp; Laparoscopy - dx'd with endometriosis; Emergency appendectomy
Age 25: Had Camryn (preterm premature rupture of membranes at 32 weeks, she was born at 35 weeks w/no problems); Post partum hemmorhage and just missed getting a blood transfusion.
Age 26: Had Logan (went into preterm labor at 24 weeks and was on strict bed rest until he was born at 37 weeks - he was in NICU for a week)
Age 27: Eye surgery for reccurrent corneal erosion; Colonoscopy - dx'd with hemorrhoids :(

sunny · Post by **sunny** » Wed Sep 10, 2008 8:52 pm

Oh...my...goodness!! wow! what a story!! you poor thing!! i am just speechless( now that's a switch!) I hope and pray that things will lighten up for you soonly if not sooner

Camryn'sMommy · Post by **Camryn'sMommy** » Thu Sep 11, 2008 11:30 am

Thanks Sunny. I don't care so much about me and my pains....I just want my little girl to be fixed. She is still having D, but it defintely less frequent since going gluten free. I would say 2-4 times a day, instead of 6-8 times a day. I'm still trying to collect the samples for the enterolab testing.

Camryn'sMommy · Post by **Camryn'sMommy** » Mon Sep 15, 2008 8:45 am

Question for everyone: what do your blood work results look like? Camryn has high IGG anti-gliadin antibodies. She has low creatinine and high BUN/Creatinine ratios.

I'm sending out the enterolab samples tomorrow!

Post by **tex** » Mon Sep 15, 2008 11:57 am

Hi Camryn's Mommy,

Both BUN and creatinine are waste products in the blood. Low creatinine levels can be an indication of small stature, debilitation, decreased muscle mass, and in some complex situations, an indication of severe hepatic disease. Generally, though, it has no real significance, and is merely an indication that the kidneys are working well. With Camryn, in light of the high level of IgG anti-gliadin antibodies, it appears to support the reality that she is very gluten sensitive, (since failure to thrive is a marker of untreated celiac disease). It's not likely that the benefits of the GF diet have had time to be reflected by those blood test results, at this point - it will take a while for the correction to show up in the tests, as her gut heals. Most likely, it just supports her diagnosis of MC, but it does verify severe gluten sensitivity, (thus failure to thrive), whether her doctor recognizes that or not.

As for the high BUN/Creatinine ratio, low creatinine can obviously cause the ratio to be high, dehydration can cause the BUN level to rise, (without affecting the creatinine level), which would, of course, cause the ratio to be high, and a very high protein diet can also cause the BUN level to rise, (without affecting the creatinine level), which would also cause the ratio to rise.

With such high IgG anti-gliadin antibodies, it's possible that Camryn could be a candidate for celiac sprue, but, of course, the GF diet should prevent that from happening.

on the sample going to Enterolab tomorrow. How has she been doing since your last update?

Tex

P S To be honest, I don't think that my GI doc ever checked for IgG anti-gliadin antibodies in my blood. If he did, he never mentioned it, and I never saw a test result on it. I don't think that gluten sensitivity was on his radar. LOL. My blood test results on BUN & creatinine are normal, these days, of course, both usually in the upper part of the range.

Camryn'sMommy · Post by **Camryn'sMommy** » Mon Sep 15, 2008 12:44 pm

Tex - thanks for the info. She is definitely having D less often. I would say 2 times a day on average, which is a huge improvement. She has a few bad days here and there where it is very watery, but then sometimes she has good days. She had a semi-solid one yesterday! It was held together by corn....but that counts right?? :)

I just wanted to cry my eyes out yesterday. We went to a birthday party where there were a ton of little kids. It was at one of those places that have all the moon bounces. Anyhow, after everyone was done playing we went to the party room where they served pizza and cake. You see where this is going? Well, all the kids had a plate in front of them and the server brought everyone pizza...of course I had to say she couldn't have it. I gave her fruit instead. She was trying to take pizza from other kids' plates. It was really hard, but not terrible. Then it was time for cake....this is where it got bad. I brought her some gluten free cookies in anticipation of this moment. The cookies worked for about a minute. When I told the hostess she couldn't have cake, she freaked out. "Mommy, Cake for Camryn??" When I told her no, she started crying and ran up to the hostess with her plate saying "Please! Please! Please, Cake for Camryn too!" She was sobbing and holding up her plate. I had to take her out of the room. It was so hard, I just wanted to cry.

I found a Gluten Free bakery that is about an hour and 15 min away. I think I'm going to go buy a cake and freeze it. Then I can bring a piece with me to every party she goes to. I can't imagine what it will be like when she goes to school. She doesn't understand that eating those things will make her feel worse.

Does anyone know anything about Dr. Thomas O'Bryan? I read that he is a renowned Dr. that studies gluten sensitivity. I emailed him to see if he can offer any advice. I figured it couldn't hurt.

JLH · Post by **JLH** » Mon Sep 15, 2008 12:48 pm

CM, did you see the post from Tex about Rice Chex? Made me want to cry.

Camryn'sMommy · Post by **Camryn'sMommy** » Mon Sep 15, 2008 2:04 pm

NO! I didn't see his post about Rice Chex. Where is it? Please don't say Rice Chex has gluten!!!

Post by **tex** » Mon Sep 15, 2008 3:09 pm

I have to agree that for a 2-year old, that is about as sad as a situation can get, and I'm sure that it was just as hard on you, (I know it certainly didn't do anything beneficial for my own spirits, when I read about it). Yes, in the future, definitely have her own safe food and cake with you, for such occasions, (hopefully, something similar to what the other kids are eating, if possible). As she gets older, she will eventually recognize how important her diet is, and it will become second nature to her, (kids often adjust to the diet faster and easier than adults), but 2 is way too young for her to comprehend that, yet.

Frankly, I had never heard of Dr. O'Bryan, so I "googled" him. For all I know, he may be very good at what he does, but the problem that I have with him is that apparently his primary source of medical training is the National College of Chiropractic. A lot of choripractors seem to be branching out into nutrition, and related areas, these days, (presumably due to an oversupply of choripractors, and not enough demand for their services to keep them all well fed. As I mentioned, many of them may be good at what they do, but I view their approach to this area of medicine as more of a wholistic approach to medicine, rather than a nuts and bolts approach.

For example, I have a good friend who is a chiropractor, and who has branched out into this area. He has told me on numerous times, how he can heal celiac disease, low fertility, - you name it, by making a proper "adjustment" to the spine, etc. Personally, I have never tried any of his treatments, as I have grave doubts about those claims. I notice that he goes to a regular doctor, (an MD, IOW), for his own health issues. YMMV.

Tex

P S You've probably already read the other topic by now, but the bottom line is that apparently something is amiss with the GF Rice Chex, but no one is sure what it might be. Some people are affected, and some are not.

Camryn'sMommy · Post by **Camryn'sMommy** » Mon Sep 15, 2008 5:34 pm

I noticed that too (about him being a chiropractor)....I wonder if he will even respond. Surprisingly, he goes from city to city educating physicians about gluten sensitivity.

I've been having intestinal issues myself lately - I'm thinking of getting the Celiac test. I've had stomach problems my whole life. My Dr. offered to do the Celiac test on me once he heard about Camryn. I guess it can't hurt.

kate_ce1995 · Post by **kate_ce1995** » Mon Sep 15, 2008 6:41 pm

I want to cry when others have cake and I can't. And I'm 36! I'll live vicariously through Camryn's temper tantrum.

Now that my niece has been diagnosed as gluten sensitive, I at least get ice cream at her house when we have family birthdays (before that I got nothing). At her sister's b-day party a couple weeks ago, we joked that we were going to split the cake and the rest of them could do without. Unfortunately, my husband, and her father refused to live with either of us during the self indulged hangover (read here pain, mood swings, fatigue, which leads to more mood swings).

Sounds like she is doing okay. It does take time. I hope things continue to improve.

Katy

Camryn'sMommy · Post by **Camryn'sMommy** » Thu Sep 18, 2008 8:07 am

So, we have determined that chocolate needs to be removed from her diet ASAP. That was one of the harder things to transition out and we just need to do it. She ate gluten free brownies yesterday and the diaper looked like a chocolate explosion :( She is still going way less, so I'm still really happy. We are down to 1 or 2 times a day!

Today might be a bad day though. My sister-in-law is watching the kids today and she said Camryn grabbed a handful of Cheerios from Logan. We'll see if she has a reaction.

Post by **tex** » Thu Sep 18, 2008 8:29 am

There's always the possibility that she might be able to handle chocolate again, after her gut completely heals, (a year or two), but it's too soon to try to predict that, at this point. It's great to hear that she's continuing to improve.

Poor Camryn - she just can't keep from doing what kids do naturally, (grabbing a handful of Cheerios from her brother). I hope the reaction isn't too bad. Maybe, (as you suggest), she'll luck out, and it won't even happen.

Thanks for the update.

Tex