Celiac Challenge

[vampella]

I am sick of waiting on my daughters doctors, I am taking out all gluten as of right this second. Does anyone have any advice for me? I could really use it. I will be telling my ped tomorrow that if the GI specialist wants a biopsy then she can go back on gluten for 6 months but for now as her LOVING CARING mother I am doing what I hope is best for my child and trying this NOW.

Char

[CarlaB]

My only advice would be, after you get out all the gluten and your daughter gets better, don't put her back on it to make the doctor more comfortable with the diagnosis!! Did she have positive blood work? If so, I'd go by that alone. If not, I'd see what her dietary response is, but I would not make her sick for the biopsy. That's like having a patient healing from lung cancer go back to smoking to see if it's making him sick!!

Good luck!

Welcome!

[vampella]

My only advice would be, after you get out all the gluten and your daughter gets better, don't put her back on it to make the doctor more comfortable with the diagnosis!! Did she have positive blood work? If so, I'd go by that alone. If not, I'd see what her dietary response is, but I would not make her sick for the biopsy. That's like having a patient healing from lung cancer go back to smoking to see if it's making him sick!!

Good luck!

Welcome!

She had one negitive this past spring but now that we have more gluten in out diet things have got worse. We are waiting on results from a second blood test, should be back by next week. I understand what you are saying, Thank you. I will tell the docotrs that if she's responding to the gluten-free diet she will not go back on just to do the biopsy. If this is working for her then it's an answer that she is celiac and if it doesn't work then we also know it's not celiac. THANKS SO MUCH

[snomnky]

My son was off gluten at 6 mo just out of suspicion then at 12mo it was reintroduced by his misinformed dr and he had a horrible reaction, then at 13mo, after a mo gluten free he had a biopsy that came back possitve, this was after two negative blood tests.

My point is that if you take her off gluten there is still a window that they can do a biopsy if you want to know for sure, even though improvement on a gluten free diet is pretty telling!

[vampella]

I don't know if this sounds completely stupid or not but Emmah went gluten free yesterday, we had gluten free soup with toast and cheese spread for supper last night & this morning gluten-free cereal and she hasn't complained about her belly hurtting even once yet. I know I am probably just hoping it is working already but would it make her feel less bloated already?

Thanks

Char

My son was off gluten at 6 mo just out of suspicion then at 12mo it was reintroduced by his misinformed dr and he had a horrible reaction, then at 13mo, after a mo gluten free he had a biopsy that came back possitve, this was after two negative blood tests.

My point is that if you take her off gluten there is still a window that they can do a biopsy if you want to know for sure, even though improvement on a gluten free diet is pretty telling!

[snomnky]

Sam looked less bloated and stoped having tummy aches almost immediatly, proably within 36 hr most of his symptoms were improving and within a week he was doing really well. Of course a month later symptoms started to return because he had an undiagnoised rice allergy that i believe was worsend by the week he ate gluten, but after about 3 days of no rice he was doing good again.

I think the little ones start to heal very quickly and Sam's damage was extensive according to the GI. We are also working with a naturopath to heal the digestive tract, I think the actual healing takes place for quite a while after the symptoms start to imporove

[vampella]

Alrighty,

I think my mom is hopeful but so am I so I am just gonna say I am seeing an improvement in Emmah (3 1/2) in less than 48 hours being gluten free and I mean free. I am so worried about CC I am cleaning like mad and making her foods first and so on. If I bore you I'M SORRY.

ANYWAY lol, here is emmah's diet since we went gluten free.

Monday the 16th, 6pm bowl of gluten-free soup+2 slices of gluten-free bread with cheese spread.

Tuesday the 17th- 8am-2C kids gluten-free cereal+2% milk. 10:30am 1 homemade gluten-free rice crispy square-12pm-1 1/2 gluten-free grilled cheese sandwhich(hard cheese) 6pm-1/2 chicken breast,2 scoops of mashed potatoes,brocilli(sp?) witha gluten free gravy more like a sauce(it was good we all had it)

Wed the 18th- breakfast 2 large gluten-free homemade pancakes. for lunch I think *pasta* but we will see. Everyone is sick, might be soup.lol

The differences I *THINK* We are seeing.

1-attitude is getting better

2- she didn't cry for a nap yesterday.

3- went to bed at 9pm rather than 7...not wanting to sleep her life away...did even suck her thumb at 6:30 lke she ALWAYS does. much less sucking.

4- I'm having to make eatting fun but she's eatting again. she went though a huge period where she would eat and eat and eat and then the last few weeks it's been going down and the sleeping had been going WAY up. She even comes home from preschool and goes to sleep, that is 3 1/2 hours after waking up. The one day she laid down on the play ground and went to sleep* was in tears*

5-She hasn't complained about her belly in like 24 hours. it's so great. she slept through the night for the first time in a few months last night and the night before.

I know I might be adding more to this than there is but I'm very hopeful.

I sure hope this is the answer, I was so scared she was going to die.

Thanks for listening.

Char

[tarnalberry]

good luck! I hope you keep seeing improvements!

[shayesmom]

Alrighty,

I think my mom is hopeful but so am I so I am just gonna say I am seeing an improvement in Emmah (3 1/2) in less than 48 hours being gluten free and I mean free. I am so worried about CC I am cleaning like mad and making her foods first and so on. If I bore you I'M SORRY.

I know I might be adding more to this than there is but I'm very hopeful.

I sure hope this is the answer, I was so scared she was going to die.

Thanks for listening.

Char

If it's of any consolation, my dd tested negative on the blood tests and I opted out of the biopsy and just tried the diet. My dd responded positively in the first 24 hours. Three days later, she was a completely different child! It was such an incredible transformation to watch and has kept me motivated for the past 2 years (in which time, I also went completely gluten-free, dairy-free and soy-free). We hit some little speed bumps along the way (like when dairy, soy and eggs became a problem). But once you've given up one food and seen improvements, the rest is pretty easy.

Trust your instincts and your own two eyes on this. They will not fail you.

And as for a later gluten challenge to convince the GI....who the heck cares what the GI thinks? You are the one who has to live with the diet (as does your dd). You are the one seeing the day to day struggles of it. You are the one who is making all of the meals, cleaning the house, planning the menu and buying the food. All things being equal....the biopsy is a fleeting moment in all of this and when you see your dd getting better.....will you really want to relive all of the pain and stress to satisfy the doctor's curiosity?

You may have to *settle* for a Dx of gluten sensitivity as opposed to Celiac Disease. But will that change anything that you'll have to do in regards to maintaining your dd's health? Probably not. If the diet works.....it WORKS.

I wish you continued positive results!

[CantEvenEatRice]

Right On Vicky! I loved what you said in your post. I feel the same way at this point. My son had negative bloodwork and positive dietary response. I have Celiac myself so I know it runs in the family. More doctors should encourage trying the diet even if tests are negative. Here is how I look at it--if you thought you had a certain disease, but were not sure and started taking a drug for it that would be a little risky. The difference with Celiac is that the gluten free diet will never hurt you. Most likely it will cure you if you have many symptoms. Doctors are so careful to not prescribe the gluten free diet unless you are a biopsy proven Celiac. I just don't get this when the gluten free diet is not a drug and is not harmful. I understand that they have to rule out other possible diseases, but if nothing can be found, then the diet should be encouraged.

[Guest nini]

my daughter was 3 when I was dx'ed with Celiac, and her pediatrician referred her to a ped. gi based on all her symptoms AND my positive dx... the ped. gi was very dismissive, said that my daughter was fine, it was just IBS, and to feed her Pediasure shakes to get her to gain weight... he didn't even do the complete celiac panel, so not surprisingly her test results were negative and the biopsy was not even an option with her, I wouldn't have put her through it because I didn't even do a biopsy myself. My Dr. said the biopsy was not necessary since my bloodwork was so highly positive and my dietary response was so good... So, after the not so good experience with the ped. gi, I told my daughter's ped. that I wanted to try the diet, she supported me in a dietary trial, and like you, within DAYS I had a totally different child. 3 years later and she is exceptionally happy and healthy on the gluten-free diet. She only had 3 sick days last year and none so far this year.

Within days of putting my daughter on the gluten-free diet, she was sleeping better, eating more, not complaining of tummy aches, having normal bm's, major attitude improvement (no more violent tantrums) no more headaches, on and on... her ped. gave her a dx of Gluten Intolerance but said "we know it's Celiac"... we got confirmation that gluten was the problem after about 6 months, she grabbed an oreo cookie from a classmate and ate ONE BITE in pre k and within minutes she was in the bathroom vomiting and with diarrhea and horrible cramping.

[key]

Char,

My son responded within 24 hours too. The blood tests are just not that accurate for children under 2. He was SO much better within 2 weeks, we knew we had our answer. I know how scarey it is to see them so sick and how helpless you feel and then to have them get better right before your eyes is SO wonderful. I thought my son would die if I didn't just do something right away. It has been 18 months now and we have never looked back. Glad she is feeling so much better already!

Monica

P.S. I ended up having the blood work done and mine was positive. I didn't have a biopsy done, because I didn't want one.

[TCA]

I'm so glad you're seeing improvements. My son started improving after about a week and was doing great after about 3 weeks. My sig line has a link to a thread about how to go gluten-free. Since you have celiac in the family, you may already know all of this, but it's something to look at.

[Mamato2boys]

Doctors are so careful to not prescribe the gluten free diet unless you are a biopsy proven Celiac. I just don't get this when the gluten free diet is not a drug and is not harmful. I understand that they have to rule out other possible diseases, but if nothing can be found, then the diet should be encouraged.

ITA !!!

My son's bloodwork was also negative, but was diagnosed with gluten sensitivity through Enterolab. We found out that both DH and I have GS genes as well, so we've ALL gone on the gluten-free diet. My son's poop is getting better, DH says he feels better than he has since high school, I'm feeling a ton better and even beginning to lose a little (much-needed) weight.

The other thing you have to remember about the biopsy, and my son's GI told me this - you can get a false negative even if there's villi damage, if they happen to biopsy an area that as no damage or less damage than others.

My son's GI was very discouraging about trying the celiac diet, btw, and went so far as to say "it sucks." Feeling better is all the proof I needed !

[tarnalberry]

Doctors are so careful to not prescribe the gluten free diet unless you are a biopsy proven Celiac. I just don't get this when the gluten free diet is not a drug and is not harmful. I understand that they have to rule out other possible diseases, but if nothing can be found, then the diet should be encouraged.

Because they think the diet is so damnably hard, no one will actually stick with it. There's plenty of evidence to show that many people don't stick with it - but a lot of them aren't getting a lot of support, I think, and the ease of sticking with the diet increases every year.

[vampella]

Because they think the diet is so damnably hard, no one will actually stick with it. There's plenty of evidence to show that many people don't stick with it - but a lot of them aren't getting a lot of support, I think, and the ease of sticking with the diet increases every year.

I've gotta say, I have only been doing the diet with Emmah for 4 days and It's more work but it's not hard. you do what you have to do to keep yourself or your child healthy. I does take time to get into a routien though. I am making soups and freezing them...cooking past and freezing it. I am gonna make a weeks worth of gluten-free foos's on sundays, stuff that I can freeze and that will make life a little easier.

The man at theGF store here told me that making bread was hard and told me to start with buns so I will do that but I am waiting fo rthe weekend to attempt it. One thing emmah doesn't like is eatting toast. she wants a slice of bread not toast but the store sell only frozen I understand why but it's kinda a pain in the butt.

So far so good. Wish us luck, we are leaving right away to the Dietician, I hope he can teach me a few things. 3 1/2 year olds are SO picky. Quick question...peanut butter, is that safe or do I have to get gluten-free stuff. I don't have any right now so I can't check the jar plus I would like to know if I should stay away because of CC.

Char

[tarnalberry]

Quick question...peanut butter, is that safe or do I have to get gluten-free stuff. I don't have any right now so I can't check the jar plus I would like to know if I should stay away because of CC.

I haven't seen a peanut butter with gluten, but ALWAYS read the label before you actually buy it. (Yeah, makes the trip to the store take longer... I know. ) I prefer natural peanut butters myself, but Jiff and Skippy have been called out as gluten-free on the board before. (Still, ALWAYS read the label. ) Cross-contamination would come from home - make sure no-one uses the gluten-free peanut-butter jar for peanut butter on regular bread. Yep - that means two different jars for most households. (For us, my husband only puts 'butter' on bread, so one peanut butter jar (apples are gluten-free!), but two 'butter' tubs.)

[Guest nini]

I've gotta say, I have only been doing the diet with Emmah for 4 days and It's more work but it's not hard. you do what you have to do to keep yourself or your child healthy. I does take time to get into a routien though. I am making soups and freezing them...cooking past and freezing it. I am gonna make a weeks worth of gluten-free foos's on sundays, stuff that I can freeze and that will make life a little easier.

The man at theGF store here told me that making bread was hard and told me to start with buns so I will do that but I am waiting fo rthe weekend to attempt it. One thing emmah doesn't like is eatting toast. she wants a slice of bread not toast but the store sell only frozen I understand why but it's kinda a pain in the butt.

So far so good. Wish us luck, we are leaving right away to the Dietician, I hope he can teach me a few things. 3 1/2 year olds are SO picky. Quick question...peanut butter, is that safe or do I have to get gluten-free stuff. I don't have any right now so I can't check the jar plus I would like to know if I should stay away because of CC.

Char

for Emmah's slice of bread, do what I do for my daughter (she doesn't like toast either). I keep the Kinnikinick's Italian White Tapioca Rice Bread in the fridge instead of the freezer and when she wants a piece of bread, I microwave it on a paper towel for 20 seconds or more until it feels soft and warm... (every microwave is different) you can also sprinkle just a little water on the bread before microwaving it and that will keep it from being dry (a tip I got from one of our local support group meetings).

[vampella]

So emmah had her first*small* lol BM since starting the gluten-free diet. I AM SO HAPPY TO SAY..IT WAS 4 LITTLE HARD NUGGEST..*sorry if I gross you out*

I have seen a huge change in her. she is back to my sweet little girl again. sure she has her moments but I SWEAR it's not 24/7 like it has been the last few months. She's not napping during the days again. she's not falling asleep before 7pm she's being told at 9 pm to go to bed *when she doesn't have school* and not waking up unil 9am. she hasn't woke up in the night to crawl in with us or anything for 3 days and see's been up alot on the last 2 months. I have not heard one word about her tummy or legs hurtting. she's starting to play again with her sister rather than just being all whinin' and screamin'. I will wait for a few more BM to start saying her BM are all normal now but SO FAR..Sooooo Goood!!!

Thanks for all your advice, I am so glad I found this site.

Char

Also I started weighing her yesterday I weigh her every morning starting yesterday 3 times to make sure it was accurate. yesterday 27.0 and today 27.2 wooooooohooooooo

[TCA]

Yea!!!!!!

[vampella]

sorry 25.0 and 25.2 but yea it's a gain

[rez]

I've gotta say, I have only been doing the diet with Emmah for 4 days and It's more work but it's not hard. you do what you have to do to keep yourself or your child healthy. I does take time to get into a routien though. I am making soups and freezing them...cooking past and freezing it. I am gonna make a weeks worth of gluten-free foos's on sundays, stuff that I can freeze and that will make life a little easier.

The man at theGF store here told me that making bread was hard and told me to start with buns so I will do that but I am waiting fo rthe weekend to attempt it. One thing emmah doesn't like is eatting toast. she wants a slice of bread not toast but the store sell only frozen I understand why but it's kinda a pain in the butt.

So far so good. Wish us luck, we are leaving right away to the Dietician, I hope he can teach me a few things. 3 1/2 year olds are SO picky. Quick question...peanut butter, is that safe or do I have to get gluten-free stuff. I don't have any right now so I can't check the jar plus I would like to know if I should stay away because of CC.

Char

I forgot, what is your story and what were your daughter's symptoms and what did the doctor's tell you. Sorry, I just remember seeing the cute pic, but I can't remember the initial story that went along w/ it>

[shayesmom]

sorry 25.0 and 25.2 but yea it's a gain

That's absolutely wonderful news!!!

Sounds like you've found one of the main components in all of the medical mess you've had to go through. I'm sure that things will continue to get better for her. And as for weight gain....YIPPEE! My dd gained a full pound the first month we went gluten-free. The second month she was gaining 10 oz. per two weeks. And by the third month, she was back on the weight charts even though she caught a nasty flu virus and was on an IV in the hospital for 3 days. I ended up pulling her out of the hospital on the 3rd day because the doctors as well as the nutritional staff just couldn't seem to get the gluten/soy/egg/dairy-free diet she needed to maintain. I was driving to Wild Oats each day just to get her some foods she could actually have. Mind you, she was at a nationally acclaimed babies and children hospital. Uggh! I ended up giving a quick "course" in Celiac and food allergies to the staff there (they even sent in some of their interns to ask questions). It wasn't an experience that inspired much confidence.

I'm so glad that you followed your own instincts on this. Truly, they won't disappoint you often.

[vampella]

Well the docotrs office called about 5 mins ago and the test was negitive. I am not going off the diet. When I started writing this the nurse had said he would call me monday. He called back about 5 mins later. He said it was negitive and he also said he thinks it's celiac disease. I told him that I had out her gluten-free and that she was happy and pooping good so far and he was please. he said to keep her on it...BUT... he did say that he wanted a biopsy done and that would mean back on gluten when the GI called me. he said but for now keep her healthy. I will be going to him on friday again and then I will discuss my feeling about putting her back on gluten and making her sick again, which I do not want. he wasn't even supposed to call me back today..his mom is terminal with cancer and he was leaving to see her but he still took the time to call me so I could talk to him about Emmah....what a great guy!! He did say though that even though her test was neg he thinks she has celiac disease and that with such a strong family history and symptoms it's celiac disease. he aslo went above and beyond the *doctor BS* and said that no test is 100 %. sorry if I rambled. Advice on what I should do if they say I need to put her back on gluten would be great. I so do not want to put her back on gluten, I don't want her sick.

[shayesmom]

Advice on what I should do if they say I need to put her back on gluten would be great. I so do not want to put her back on gluten, I don't want her sick.

By the sounds of it, you cannot put her back on gluten and expect her to not get sick. What are the pros to putting her back on gluten? And if by chance you were able to get a positive Dx (which is doubtful)....what do you think you would gain from it?

I think that you need to take some time to see how your dd does and some time to figure out what your goals and objectives are. Each person has different views on how they need to proceed in order to facilitate success in their personal lives. One person may do the diet and then challenge it occasionally to see if their child is no longer sensitive. Another person may not have a problem at all with continuing the diet....but perhaps they are worried that their child may not follow the diet later in life if there is no formal diagnosis.

You have some really tough questions to answer. For now, just concentrate on actually getting into the routine of the diet and see how things go. With a bit of time, I think that you'll be able to figure out what is in your dd's best interest.

Going gluten-free without any kind of "formal" diagnosis can be a tough thing. With my dd, there's been a lot of comments from family about how it's "so strict" and how dd has "no diagnosis" and how I am "not a doctor". I find it amazing just how short people's memories can be because the same people making these comments are the ones who couldn't believe the difference the diet made in her behavior, heatlh and attitude. As for me....I often have struggled with trying to understand what exactly I am dealing with (Celiac or non-Celiac gluten sensitivity). It took me about a year to just "let it go" as far as feeling the need to justify my decision to not re-introduce gluten. I spent a lot of time researching on Celiac as well as the many manifestations that gluten sensitivity could produce. At this point...there is no gluten in the house that can contaminate dd. I even make my own "Playdoh". But then again...I know over a dozen people now who have overcome debilitating health issues by eliminating gluten and a handful of other foods. I doubt that we're missing out on all that much by staying gluten-free. lol!

In any case, this decision needs to come from you and you need to follow your heart and mind on this. And before you "officially" decide, I would recommend that at some point, you remove gluten completely from your own diet just to see how things go. Most people are pretty shocked at the difference in how they feel once off of it....especially when they aren't connecting the genetic component to themselves. I thought I was just fine prior to the diet. Two weeks on it and I have not gone back to gluten foods since. That was in January of 2006. I now really KNOW how I feel on and off gluten. There is NO WAY I would EVER contemplate putting dd on it again for the sake of a doctor who admits the tests aren't accurate and yet has seen the diet work....and STILL insists on more tests. What is THAT about? Because I know that I just don't "get it".

Sorry for rambling. I wish you both continued success and the serenity to come to grips with what lies ahead. I'm sure things will work out.