Frustrated With Doctors..help! Is My Daughter Celiac?

[stepfordwive]

I am convinced my 26month old daughter is celiac.

I have just recently been diagnosed aged 34 after suffering the majority of my life with digestion and bowel problems..I was told I had IBS!! its only when my symptoms became severe over the past 2 years my doctor with raised eyebrow refered me for a biopsy which was positive even though my FOUR celiac blood tests were negative..since being Gluten Free I am fine.

My daughter however I am very concerned about as she rarely since birth has had a normal stool..she always has about 3 very loose motions a day which are grainy and foul smelling so potty training is difficult and she also complains of stomach ache too- along with being a poor eater.

I have taken her to the doctor several times and she has been to see a consultant at the hospital who did the celiac blood test..it came back negative although he did discover an iron deficiency and told me this is common and there is nothing wrong with her.

I took her back to my own doctor last month who prescribed her some iron and said she will probably grow out of it...the iron has made her stools worse and she looks so pale and still has stomach ache . I am going back to the doctors but I feel like putting her on the same diet as me for a few weeks to see if there is any kind of improvement (even though the consultant told me not to) I dont know what to do and in the meantime she is suffering. Any advice really would be great

[CarlaB]

Love your name!!! Are you dingogirl's neighbor? Just kidding (I know you don't get it, but she will and you can imagine what it means! )

Why not try the gluten-free diet for your daughter? She's been tested, the doctors say she doesn't have it, she's still sick ... you're getting nowhere with them.

A positive about just trying the diet is, if she gets better you KNOW she has it. It will be good for her to not go though life with a preexisting condition.

She's young enough that you can do this. I had my 13 year old go gluten-free for six months ... then we challenged it because we didn't see a major change in her health, after 4 days she was begging to end the challenge and go gluten-free again.

I should mention, in our case, we are gluten intolerant, not celiac. The reason I bring up my daughter is because if yours goes undiagnosed, but eats gluten-free, when she's a teenager and questioning it, she will quickly find how bad it makes her feel.

On the other hand, if she does not get better, you need to get right back to the doctor!

[stepfordwive]

Thankyou so much for your reply!

It makes sense what you say

I need reassuring and my instinct is that if I at least 'try' her on a Gluten Free diet its not going to do her any harm...when I went gluten free I felt the benefits quite quickly.

I dont know why the doctors have advised me not to do this.. I am not prepared to just 'wait it out' for another year or so and watch her suffer.

Will keep you posted

Best Wishes SWX

[kirbymom]

Go for it! When I put dd6 on a gluten-free diet, I did not go to the doctor. We had my hubby gluten free for a month or so and we were eating very little gluten over the 9 day Christmas break. Our doctor doesn't really even consider celiac - would only if I pushed it! DD did not complain about stomach aches much during that time - which she had done ever since she could talk!!! My dd2 was very similar to your daughter, small, anemic, runny, stinky bowel movements. We took her off gluten - diarhea stopped, nasal drip stopped, and she started growing!!! Given your history, I am convinced you will see a diffeence!!

[2kids4me]

Go for it! Nothing to lose and everything to gain.

My daughter had the lowest possible number on bloodwork (antibodies) to still be called positive, GI doc was not convinced he would find celiac but felt it best to do biopsy. It was surprising - but she was definitely celiac. Blood test are not reliable in all circumstances.

The gluten free diet is simply using different flours to cook with, and omitting foods that make you sick.

Funny how nobody bats an eye at a toddler eating a twinkie, pop, cheesies, slurpee, or chocolate bar but recoils if they find you have your child on a gluten free diet. What's wrong with that picture?

Omit gluten foods and you will know by her reaction to eating a very healthy diet.....

Sandy

[CarlaB]

Funny how nobody bats an eye at a toddler eating a twinkie, pop, cheesies, slurpee, or chocolate bar but recoils if they find you have your child on a gluten free diet. What's wrong with that picture?

[TCA]

Our kids were similar and we did go through all the testing, with inconclusive results. I was told they were fine and not to worry over the diet. I did anyway and now the kids are thriving. Testing in kids under 5 is very inconclusive, anyway. I wish I had followed my gut a year before I did!

[trustyourguts]

OMG your daughter sounds just like my 25m son. I put him on a gluten free diet for 2 months in July and August and he flourished. His stools became solid for the first time, he calmed down, he gained 6 pounds in the 2 months he was off, his swollen belly flattened, he stopped complaining that his belly hurt, he became a totally different child . Then my dh suggested we put him back on gluten so he could get tested. The problems started in November. His knee swoll up and he began to limp. We took him to the doctor who took blood and suggested he had a mild case of ricketts. I asked her if he might have an absorption problem d/t gluten intolerance she brushed me off and told me no.

I took him back in December. He has had his blood drawn 7 times since 11/29/2006. Each time they take at least 5 vials. Last month they sent us to the ED because they said his blood count was dangerously low. Now they are sending us to a hematologist because of anemia that they can't seem to fix and a nutritionist becuase he is underweight. They refused our request for a gastroenterologist. Go figure. They said he does not warrant it because his gliadin test and stool fat test were normal. Yet his pediatrician says "something is not right with" my son.

We now have him back on a gluten free diet and he is now doing a lot better. He has gained 1.5 pounds in 2 weeks, even with teething. His stomach is now flat again, he is a lot calmer, his lips are pink again. We are now considering the stool test by enterolab. Anyone out there have experience with this?

I want him to be diagnosed so that when he goes to school they will be a little more diligent about making sure he doesn't eat the play dough etc.

So sorry about rambling on. But I am so happy to hear/see I am not alone nor am I crazy.

btw I have been gluten-free since 3/06 and loving the way I feel. No more depression, upset stomach, constipation, swollen face. I lost 27lbs in the 2 months immediately following my gluten-free diet. I have never been diagnosed but I feel so much better that I don't want to go on gluten for 2 months just so I can get a negative blood test.

trustyourguts

[super-sally888]

Hi,

I agree with all the other posters. Just to add. There is nothing unhealthy about a gluten free diet! You do not need any doctor's permission to put your child on it. Try it. YOu have nothing to lose. Considering that you are celiac, there is a very high chance that your child is. Trust your instincts on this one. Take Care.

Sally

[stepfordwive]

Thanks everyone!

Its great to hear from people with similar experiences to myself.

I have started her this morning on gluten-free diet... she demanded weetabix at first but then I said we were going to have the same 'rice' cereal from now on..she seemed ok with this but I did have to pretend to sprinkle imaginary sugar on!

I know that there are lots of things she can have that she has already eaten in the past..like potato and rice based stuff..I suppose its more the treat based stuff that she will notice.

I am also hoping that her general wellbeing improves as well as her bowels as she constantly picks up colds and coughs more than my friends kids...and shes never full of energy either.

When I spoke to my celiac dietician about my daughter..she said there is a reason why she has an iron deficiency and she should have a biopsy.

Best Wishes and thanks again

SWX

[girlfromclare]

Hi Just to add that if you have been positively diagnosed as celiac and now your daughter is displaying symptoms I would take it as a given that your daughter is a celiac. Put her on the diet... anyway, your bloods came back negative four times before it was spotted by biopsy. I was talking to some celiacs at a clinic the other day and one mother was diagnosed celiac thirty years ago... three of her children consistently had shown symptoms since they were very small. She didnt even bother getting them tested but knew in her heart they were celiacs just like her. She put the whole house on gluten-free diet just like her and everyone started thriving - and the mood in the house was much much better. Its worth doing I think..

Hope this helps x x

Liz

[2kids4me]

I suppose its more the treat based stuff that she will notice.

What kind of treats does she like that you think she will miss?

I got some wonderful recipes from this site - the donut holes are great - for my son who has to count carbs too - he can have one or two and he thinks he's gone to heaven.

Crispy rice squares

make your own popsicles with sugar free koolaid or juice

make your own pudding pops - I make choc pudding and put it in the popsicle mold. try the same thing with yogurt. We freeze the yogurt tubes - nice treat on a hot day

fresh fruit/veges cut into fun shapes

make dip with strawberry yogurt/cool whip for the fruit (my kids actually prefer fruit alone but some kids eat more fruit with a dip

frozen grapes

donut holes

There are so many moms on this board - if she has treat you think she will miss- chances are - there is a gluten free equal.

liked the "imaginary sugar" trick

Sandy

[happygirl]

stepford:

Welcome to the board! I think you'll find a lot of other parents on this board that have been in very similar circumstances.

Hope that you find some answers. Let us know what we can do to help! We can find a replacement to anything.

Laura

[stepfordwive]

Many thanks everyone..this is really a great help.

I know its going to be difficult at first..I am only just a beginner!

I already had to tell my daughters Granny NOT to give her anything that I hadnt approved, its hard for her to understand I suppose..

Since being diagnosed though its frustrating when you tell friends and family that you have a condition and they think you are just on a faddy diet!