Negative Test Results For My 2.5 Yr Old Daughter...

[mommytoE&E]

Hello.

I'm new here and thinking that my daughter has celiac disease...but confused by her negative test results.

Here is our history and her symptoms...

My husband's Grandmother had celiac disease and a whole host of secondary complications because of it. She also had the dermititis hepitiformis (sp?). She had two daughters (my husband's aunts) who have been diagnosed via bloodwork with celiac disease. My husband's mother has never been tested (not sure why?) but has problems with anemia, vit. B12 deficiency, thyroid disease, and lactose intolerance. I think she has always thought she didn't have it because she isn't real thin like her sisters were before diagnosis.

My husband has a very sensitive stomach, isn't very thin, but poops often. He has a rash that comes and goes on his rear end and upper thighs that looks kind of like eczema. He has never been tested, but in light of recent enlightenment, he is scheduled for a consultation with a GI.

I have psoriasis, another autoimmune disease that some scientists think can be linked to celiac....though I don't seem to have a sensitive stomach to glutens.

My daughter was born weighing in at 7lbs, 12oz. At one year she weighed exactly 20 pounds and was 50% for her weight on the charts. At two years she weighed 24 pounds and was 10% for weight. She has always pooped frequently (4-6 times per day) and her poop is often foul and almost always very soft/runny.

Due to our family history, our pedi recommended she be seen by a pedi GI. So, at 2.5 years old, we went in to see him. She weighed in at 23 pounds at this apt, meaning she had lost a pound and was way off the bottom of the weight charts now. The pedi-GI seemed to strongly suspect celiac disease and recommended bloodwork and an upper-GI endoscopy.

He just called me last week to tell me that all the results (bloodwork and biopsies) are normal. Told me that she didn't have celiac, but that he wanted to follow up with us in a month (not sure why?) I asked him lots of questions and he wouldn't give me any straight answers or good information. Needless to say, I'm not thrilled with him.

Meanwhile, my daughter struggles with gaining weight, complains that her tummy hurts several times a day, and poops up to 6 times per day.

I guess I'm writing to ask....What would you do in this situation? My extended family thinks I'm nuts because I'm ready to put her on a gluten free diet....despite recent test results coming back normal.

This is especially difficult with a 2.5 yr old child because I'm not sure how much her tummy hurts her.

Thanks so much for your thoughts.

[mommytoE&E]

Hello. I posted this over in pre-diagnosis section, but thought I'd perhaps get some good information from other parents of young children...

Thank you so much for reading.

Hello.

I'm new here and thinking that my daughter has celiac disease...but confused by her negative test results.

Here is our history and her symptoms...

My husband's Grandmother had celiac disease and a whole host of secondary complications because of it. She also had the dermititis hepitiformis (sp?). She had two daughters (my husband's aunts) who have been diagnosed via bloodwork with celiac disease. My husband's mother has never been tested (not sure why?) but has problems with anemia, vit. B12 deficiency, thyroid disease, and lactose intolerance. I think she has always thought she didn't have it because she isn't real thin like her sisters were before diagnosis.

My husband has a very sensitive stomach, isn't very thin, but poops often. He has a rash that comes and goes on his rear end and upper thighs that looks kind of like eczema. He has never been tested, but in light of recent enlightenment, he is scheduled for a consultation with a GI.

I have psoriasis, another autoimmune disease that some scientists think can be linked to celiac....though I don't seem to have a sensitive stomach to glutens.

My daughter was born weighing in at 7lbs, 12oz. At one year she weighed exactly 20 pounds and was 50% for her weight on the charts. At two years she weighed 24 pounds and was 10% for weight. She has always pooped frequently (4-6 times per day) and her poop is often foul and almost always very soft/runny.

Due to our family history, our pedi recommended she be seen by a pedi GI. So, at 2.5 years old, we went in to see him. She weighed in at 23 pounds at this apt, meaning she had lost a pound and was way off the bottom of the weight charts now. The pedi-GI seemed to strongly suspect celiac disease and recommended bloodwork and an upper-GI endoscopy.

He just called me last week to tell me that all the results (bloodwork and biopsies) are normal. Told me that she didn't have celiac, but that he wanted to follow up with us in a month (not sure why?) I asked him lots of questions and he wouldn't give me any straight answers or good information. Needless to say, I'm not thrilled with him.

Meanwhile, my daughter struggles with gaining weight, complains that her tummy hurts several times a day, and poops up to 6 times per day.

I guess I'm writing to ask....What would you do in this situation? My extended family thinks I'm nuts because I'm ready to put her on a gluten free diet....despite recent test results coming back normal.

This is especially difficult with a 2.5 yr old child because I'm not sure how much her tummy hurts her.

Thanks so much for your thoughts.

[mommytoE&E]

Hello. I posted this over in pre-diagnosis section, but thought I'd perhaps get some good information from other parents of young children...

Thank you so much for reading.

I also wanted to add that my daughter always seems to be hungry. In fact, half the time she tells me her tummy hurts, I believe she is just hungry. She eats a TON. And still asks for food every hour or so?

[Worriedtodeath]

HI!

So know how you feel!!!! Ped Gi seem to be stupid when they don't get a marsh 3 or 4 level of damage in toddlers. Ours even went as far as to say come back in a year if she is still this way, we will retest to see if she has developed full blown Celiac by then. Full blown?? IS that like being a little pregnant?? Let's check back in a few months and see if it really is a baby in there. GEESH!

So my thought was do I want to go another year with a sick baby pooping several times a day and losing weight or do I want to do something about it now. With all the dx Celiacs in your child's family tree, you should do the diet now. Your gi is so totally wrong because the biopsy and blood test EVEN IF THEY ARE NEGATIVE can NOT RULE OUT CELIAC. THey can prove it beyond a shadow of a doubt but they cannot rule it out. She could very well have it and it be completely missed on a biopsy. Completely missed. If he wants to do a consult in a month put her on a gluten free diary free diet now and you will probably see results within the month hopefully. We saw a reduction in the number of movements within a week and had have normal stools by the end of a month even though it is still back and forth some days. She's gained over a pound and grew an inch in 6 weeks.

As for extended family, the tests are highly unrealiable for children under 5. False negatives are high from what I have heard. The diet is the only conclusive test. My ped even admitted when we went for the biopsy that it would come back negative in her opinion even though my daughter was text book case and no doubt in any dr's mind that she was Celiac. Our ped contiuned to say that the biopsy would come back negative and just muddy the waters for everyone when it was clear cut that gluten was the child' problem. But at least the biopsy would rule out any possibilty of anything else and rest everyone's mind that gluten free was the path to go. She was right on the money about that. The gi's office want to label her with "allergies" while the allergist has all ready eliminated allergies and intolerances.

Jump in with a gluten free diet. Go ahead and take out milk too as the parts of the villi that produce the stuff to handle milk are destroyed first when the villi are damaged. We really started seeing resluts when diary was no longer in her diet. We hope to reintroduce that in about six months.

Oh and mine asked for food constantly and then barely ate any of it. Two weeks off of gluten she ate more at lunch than she had in a whole day while consuming gluten. She now eats a normal schedule and eats a good deal at those times.

You can always tell family what we tell ours- We have nothing to lose by trying the diet and everything to gain if it works. and we are going to try it for 6 months and see what the differences are. So far the results for all three children are high enough that gluten won't be reintroduced even though they all tested "negative".

Good luck.

Stacie

[Ursa Major]

As Stacie already said, both blood tests and biopsies are extremely unreliable in young children under six and yield many false negatives. Your daughter has the classical celiac disease symptoms for toddlers. With your family history you might want to put your whole family on the gluten-free diet to see what happens.

Most doctors, including GIs (who are supposed to be the experts) are woefully ignorant on celiac disease and can't be trusted to give you valid information most of the time.

In children under six the best test is trying the gluten-free diet. If the child improves you have your answer. And I agree, you need to also eliminate dairy (all dairy, not just milk) from your daughter's diet for at least six months.

[ravenwoodglass]

The testing for celiac leaves a lot to be desired. Up to 30% of us will have a false negative on blood tests. In countries that routinely screen for celiac they test at 4 and again at puberty because of this.

The true test is the diet and it sure does sound like she should be on it, especially with a family history. That doctor should have told you to put her on the diet and then he would see you in a month to see if it was helping. I would get her on the diet asap.

[Darn210]

With that family history and her symptoms, I would definitely try the diet. I would also log symptoms and weight. Start off with listing all of her symptoms . . . how often she has a bowel movement and consistency, number of stomach ache complaints, and a starting weight and height. Then note the day you start you gluten-free diet, keep noting bowel movements and stomach ache complaints and some intermediate weights if you can. Then you'll be able to show the GI when you see him in a month. Kids heal fast, if this is her problem, you could see rapid results.

[Pattymom]

We are about 6 weeks past where you are with my 3.5 year old, whowas 25lbs 6 weeks ago, and is now 26lbs and 1/2 inch taller. Her tests were normal, she didn't really have and Gi issues, just the growth thing, I figured what do we have to loose, and it is really helping. My MIL thinks it's nuts , but has been Ok about avoiding gluten 9she did give her chicken nuggets on valentine's day, but apologized the next morning, said she didnt' think of it. I someitmes wonder if I am just nuts, looking for more hassles, but feeling better is so worth it now, and avoiding long term effects even better.

They were sending us to a Ped. Endo. and I figured we should try the diet inthe meantime, because it seemed a lot easier than daily hormone shots would be. We saw the PE yesterday, and she thought the improvement was great, and didn't order more blood work since the diet was helping, jsut wanted to see her back in 3 months to make sure she is still improving. She was a great MD!

Trust your intuition, no one knows your child better than you. if we don't advocate for them no one will

Good Luck

Patty

[Ursa Major]

Your daughter sounds like one of my grandsons. He is a twin, and both of them weighed over seven pounds when born (their combined weight was exactly 15 lb).

But at four years of age he was so skinny you could count his ribs. He NEVER had a solid bowel movement in his life until until he went gluten-free. He was extremely emotional and moody. If he got hurt (or you so much as looked at him the wrong way) he would cry for hours, being inconsolable.

Then my daughter put herself and all five kids on the gluten-free diet. What a change! My grandson's bowel movements went to perfectly normal within a couple of days. He started gaining weight immediately. He is still slim, but not skin and bones any more. And he stopped being so emotional as well. If he gets hurt now, he won't cry for any longer than a few minutes and is off playing again.

His older sister started gaining weight as well, and the dark shadows under her eyes disappeared. His twin sister's speech finally started improving (who had the typical celiac disease shape when a toddler, skinny arms and legs, no bum and big, hard belly, even though my daughter still doesn't believe me when it comes to her). His baby sister's awful diaper rashes disappeared. Only one child, a three-year-old boy, doesn't react to gluten at all, and they haven't seen any difference in him.

My daughter has a lot more energy now and feels much better. Her husband is like the little guy, no change either way. He eats gluten at work.

[mommytoE&E]

Thank you so much for your replies. I'm starting a journal, as you suggested, on her bowl movements, stomach ache complaints, sleep habits (which are HORRIBLE), and her starting weight

Going to keep that for a week or two and then putting her on the diet ASAP.

Ursa~ My DD has skinny arms and legs with no butt at all. You can count the ribs in her chest and back, but her belly is big and distended. I was so tempted to post a picture of her after reading your response.

After reading around here, I have no doubt in my mind that she has celiac.

Again, thank you for your help.

[Ursa Major]

My DD has skinny arms and legs with no butt at all. You can count the ribs in her chest and back, but her belly is big and distended. I was so tempted to post a picture of her after reading your response.

Now that, along with the other symptoms, is a dead giveaway for celiac disease! It is the typical celiac disease shape, especially for little kids and men (women don't have that shape as often).

[kjbrown92]

You might want to look at other food intolerances as well, any of the top 8 allergens, that she may be getting every day. That can affect weight gain and stomach pain and sleep patterns. Many people with celiac also have a sensitivity to casein, the protein in milk. Just a thought.

[Alex Vale]

When I read your story, it was identical to my daughter's. She was born at the top of the charts and by 2.5 she was below 10%. She was the same weight at 2 as she was at 3. She was diagnosed in Feb as stage 3 celiac. I don't know if you have already, but you most certainly should put her on the gluten-free Diet. Even if she doesn't have Celiac, she could have gluten sensitivities, and this could lead to an array of other problems and allergies if you don't start now. I have also had to learn the hard way that the doctors don't have a clue about this disease. The only people you should trust are the ones that have it (or children with it). Let me know what has happened. I am now dealing with additional allergies that I am trying to figure out. It has turned in to my full time job. She wakes up with a new symptom everyday, and it's just a battle I struggle with on a daily basis. Good luck and God Bless.

Alex

Hello.

I'm new here and thinking that my daughter has celiac disease...but confused by her negative test results.

Here is our history and her symptoms...

My husband's Grandmother had celiac disease and a whole host of secondary complications because of it. She also had the dermititis hepitiformis (sp?). She had two daughters (my husband's aunts) who have been diagnosed via bloodwork with celiac disease. My husband's mother has never been tested (not sure why?) but has problems with anemia, vit. B12 deficiency, thyroid disease, and lactose intolerance. I think she has always thought she didn't have it because she isn't real thin like her sisters were before diagnosis.

My husband has a very sensitive stomach, isn't very thin, but poops often. He has a rash that comes and goes on his rear end and upper thighs that looks kind of like eczema. He has never been tested, but in light of recent enlightenment, he is scheduled for a consultation with a GI.

I have psoriasis, another autoimmune disease that some scientists think can be linked to celiac....though I don't seem to have a sensitive stomach to glutens.

My daughter was born weighing in at 7lbs, 12oz. At one year she weighed exactly 20 pounds and was 50% for her weight on the charts. At two years she weighed 24 pounds and was 10% for weight. She has always pooped frequently (4-6 times per day) and her poop is often foul and almost always very soft/runny.

Due to our family history, our pedi recommended she be seen by a pedi GI. So, at 2.5 years old, we went in to see him. She weighed in at 23 pounds at this apt, meaning she had lost a pound and was way off the bottom of the weight charts now. The pedi-GI seemed to strongly suspect celiac disease and recommended bloodwork and an upper-GI endoscopy.

He just called me last week to tell me that all the results (bloodwork and biopsies) are normal. Told me that she didn't have celiac, but that he wanted to follow up with us in a month (not sure why?) I asked him lots of questions and he wouldn't give me any straight answers or good information. Needless to say, I'm not thrilled with him.

Meanwhile, my daughter struggles with gaining weight, complains that her tummy hurts several times a day, and poops up to 6 times per day.

I guess I'm writing to ask....What would you do in this situation? My extended family thinks I'm nuts because I'm ready to put her on a gluten free diet....despite recent test results coming back normal.

This is especially difficult with a 2.5 yr old child because I'm not sure how much her tummy hurts her.

Thanks so much for your thoughts.

[Brigid]

Now that, along with the other symptoms, is a dead giveaway for celiac disease! It is the typical celiac disease shape, especially for little kids and men (women don't have that shape as often).

Sorry to jump in, but that , what you said about the typical celiac body shape, really struck home with me!!! My hubby has thinner, muscular arms n legs, but has struggled with a round, firm, tummy. He also has an upset stomach 2-4 times a week....

Our 1 yo is getting a scope monday to look for Celiac and now Im really wondering if maybe my husband might not have it, based on his body build, and upset (but seemingly random) diarrhea/stomach cramps. Hubby went to the doc, but the doctor just said "must have a food sensitivity to something" and let it go.