Evan's Story-advice Needed

[evansmom]

Hello, This is my first post. My son Evan is almost 5. Since he was about 9 mos. old he has been getting lower and lower on the growth charts and now is 3% height and below 0% for weight. I have daughters who are 5"7" and 5"8", I am 5"5" and DH is 5'11", so we are not small people.

At his 4 y/o check up Dr. brought up possibility of Celiac. He did a bone age scan instead of anything more invasive which showed his bones were a year younger than actual age. Dr. took this as him being a slow grower and no further testing was done.

About a week ago, Evan fell from halfway up the stairs and broke his hip. He has 2 large screws in his tiny little femur. The surgeon said he has never seen this injury in someone this age, usually it's in 80 y/o women. His first concern was bone tumor, but luckily everything appeared normal.

From all my hours of late night research, I keep coming back to Celiac. Can it have caused his tiny bones to weaken due to lack of calcium absorbtion. Here are some reasons I think he may have Celiac...VERY small for age, tooth decay and poor tooth enamal, severe intestinal bloating and constipation, husband is of Italian decent. I breastfed him until he was 2, which I believe would have postponed symptoms.

I have started him on a Gluten free diet, because I am trying to do everything possible to help him heal and don't want to wait to do any testing. If Evan is not absorbing enough calcium, I have to fix it now while his bone is healing.

If anyone has any advice or similar experience I would really appreciate any input!

Thank you,

Mary

[Ursa Major]

Hi Mary, and welcome to this board. Poor little guy, I hope he will heal fast. I think it would be good to check his calcium, magnesium, vitamin D, ferretin and vitamin B12 levels, to find out where he needs supplementation, and how much. In the meantime, make sure he gets a good (gluten-free) multivitamin every day.

You're doing the right thing with the gluten-free diet. If gluten is indeed the problem (and it sure sounds like it very well may be), you should see a change in his health pretty soon, as well as him starting to grow. The earlier it is caught, the better.

You're a good mother, he is lucky to have you. All the best, and please keep us informed of his progress! I will be praying for him and for you.

[shayesmom]

Hello, This is my first post. My son Evan is almost 5. Since he was about 9 mos. old he has been getting lower and lower on the growth charts and now is 3% height and below 0% for weight. I have daughters who are 5"7" and 5"8", I am 5"5" and DH is 5'11", so we are not small people.

At his 4 y/o check up Dr. brought up possibility of Celiac. He did a bone age scan instead of anything more invasive which showed his bones were a year younger than actual age. Dr. took this as him being a slow grower and no further testing was done.

About a week ago, Evan fell from halfway up the stairs and broke his hip. He has 2 large screws in his tiny little femur. The surgeon said he has never seen this injury in someone this age, usually it's in 80 y/o women. His first concern was bone tumor, but luckily everything appeared normal.

From all my hours of late night research, I keep coming back to Celiac. Can it have caused his tiny bones to weaken due to lack of calcium absorbtion. Here are some reasons I think he may have Celiac...VERY small for age, tooth decay and poor tooth enamal, severe intestinal bloating and constipation, husband is of Italian decent. I breastfed him until he was 2, which I believe would have postponed symptoms.

I have started him on a Gluten free diet, because I am trying to do everything possible to help him heal and don't want to wait to do any testing. If Evan is not absorbing enough calcium, I have to fix it now while his bone is healing.

If anyone has any advice or similar experience I would really appreciate any input!

Thank you,

Mary

Hi Mary,

Like you, I have a child who was not thriving and symptoms kept bringing me back to Celiac Disease as a potential culprit. We actually underwent several tests to try to diagnose it but all came back negative. And like you, I put my dd on the diet ASAP because I wasn't interested in a formal diagnosis as much as I needed for my dd to get better.

The diet worked and we have never looked back. DD is thriving now and is back up on the growth charts. The changes were nearly miraculous as they seemed to occur overnight.....well almost. If you go this route, please be aware that many celiacs have multiple food intolerances (especially to casein and soy). I highly recommend keeping a food journal to document how things are going. You may find that your ds improves for a few weeks and then regresses. This regression is often the sign of another food intolerance/allergy showing itself.

Considering the genetic component in Celiac's, it may be helpful for you and your husband to be tested for it. I ended up putting myself on the diet along with my dd (I refused to cook separate meals for the family). I was shocked to discover that I also had been sick with gluten/dairy/soy intolerance. Life is so much better off of those foods that I will never go back to my old eating habits. Whether we are true celiacs or just gluten-sensitive, we may never know. But the fact remains that we are not healthy on gluten and in the best health of our lives since removing this offender.

I applaud your decision to try the diet, whether your ds was tested or not. Getting healthy should be the priority. And unfortunately, it takes an average of 9-11 years in this country to be diagnosed with Celiac Disease. Until our testing methods improve, I can't blame anyone for taking matters in their own hands....trust your first instincts in this and take charge of your ds' health. You are his best advocate and no one will fight harder for his improvement than you....no matter how good his doctors are.

Hang in there! The diet can get tricky and be overwhelming at times in the early months. You might want to stop and get a copy of LivingWithout Magazine for some ideas on recipes and products. I hope that your ds heals quickly!

[Nic]

Hi, I am sorry to hear about your little boy's hip. That must be awful for him (and you). I just wanted to add that if you have him on the gluten-free diet you should see improvement pretty quickly. But, if the constipation does not improve quickly don't panick. My son has been diagnosed for a year and still has some trouble with constipation (not as frequently, but at least once a month). He is being tested now for other food intolerances but the doctor's feel it is more of just the after affects of being so severely constipation. Takes the body a while to heal. Good luck, keep us posted.

Nicole

[TCA]

Bravo to you for being so proactive. My 3 y/o kept having symptoms that keppt bringing us back to celiac too. He had major D, tooth problems, FTT, mouth sores, etc. After inconclusive bloodwork and 2 negative biopsies, we did a diet trial and the difference is amazing. If you do want to go ahead and do bloodwork it is no problem. If you have a good dr., you could go ahead and do it today. If it comes back positive, you have a diagnosis. If it doesn't, you're back where you started from and can continue with the diet trial. I wouldn't worry with the endoscopy either. We've had 3 for my son for different things and they weren't an issue, but the diet trial is what worked for us.

I too found I had problems with gluten after going gluten-free for my nursing daughter. I feel so much better.

I hope Evan feels much better soon.

[DanAbimytwomiracles]

I think you're doing a great job following your instincts. If it helps, my daughter went over a year gaining only 8 ounces from the age of 2 to 3. Her bloodwork was all negative, but my instincts and some other minor symptoms led me to celiac. After going gluten-free, she's gained almost 1.5 lbs in FOUR months! And as a result of her going gluten-free, my son is now gluten-free and his behavior is SO much better, and then of course I went gluten-free and am doing much better, too.

So...I think you're on the right track. You can also take him to a GI doctor who can evaluate what he is absorbing and what his body is elminating by doing various urine tests.

[aprilh]

Hello, This is my first post. My son Evan is almost 5. Since he was about 9 mos. old he has been getting lower and lower on the growth charts and now is 3% height and below 0% for weight. I have daughters who are 5"7" and 5"8", I am 5"5" and DH is 5'11", so we are not small people.

At his 4 y/o check up Dr. brought up possibility of Celiac. He did a bone age scan instead of anything more invasive which showed his bones were a year younger than actual age. Dr. took this as him being a slow grower and no further testing was done.

About a week ago, Evan fell from halfway up the stairs and broke his hip. He has 2 large screws in his tiny little femur. The surgeon said he has never seen this injury in someone this age, usually it's in 80 y/o women. His first concern was bone tumor, but luckily everything appeared normal.

From all my hours of late night research, I keep coming back to Celiac. Can it have caused his tiny bones to weaken due to lack of calcium absorbtion. Here are some reasons I think he may have Celiac...VERY small for age, tooth decay and poor tooth enamal, severe intestinal bloating and constipation, husband is of Italian decent. I breastfed him until he was 2, which I believe would have postponed symptoms.

I have started him on a Gluten free diet, because I am trying to do everything possible to help him heal and don't want to wait to do any testing. If Evan is not absorbing enough calcium, I have to fix it now while his bone is healing.

If anyone has any advice or similar experience I would really appreciate any input!

Thank you,

Mary

I think gluten free asap is the way to go. He has the symptoms. Also, get his minerals checked. Try and find a good natureopathic dr in your area. They are more versed, it seems, on celiac and treating the "whole" person not just a symptom. They can help you decide which vitamins and minerals are needed and in what amounts and teach how fast they are actually absorbed by the body. He may not absorb anything until his intestines heal and he is gluten free. Make sure all the vitamins and minerals are gluten free.

Hope this helps!

[evansmom]

Thank you for your replies. I brought Evan back to the ped. and voiced my concern about his bone density and Celiac. Ped. told me it was just the way Evan fell that caused such a severe break and he is not concerned about bone density, but that if I was still concerned, we would pursue it when he gets his cast off.

I also just happened to notice that Evan has this wierd little rash on his arm. It's a very small spot of a few tiny blister like bumps. At firlst I though maybe an allergy, then I started reading about DH...

I had my husband go to the Dr. to see if they would test him, as he has a lot of the symptoms. They wouldn't do specifically a Celiac test, but did general bloodwork and would pursue it if anything showed up? They also gave him a referral to a GI dr. so maybe he will do the test.

I am keeping Evan gluten free until I am convinced he does not have it. We already goofed once, I didn't realize his gummy spiderman vitamins had gluten, oops!

Mary

[jerseyangel]

Hi Mary--I also applaud your putting your son on the gluten-free diet right away. What I can't understand is your husband's doctor. With all of the evidance pointing towards Celiac Disease, why won't they do the Celiac Panel? What is it to them--you requested it! General bloodwork will not tell anything with regard to Celiac--I was misdiagnosed for many (20) years, and had gallons of blood drawn in that time! I was even severly anemic, and no one made the connection between that and my GI symptoms. Anyway, I hope that little Even heals quickly, and that the gluten-free diet is the answer. Keep us posted!

Also, a Dermatologist should take a look at the blisters--they could do a biopsy of the area just near the blisters, and if that is positive for DH, it is also positive for Celiac.

[TCA]

Just wanted to let you know that gummy vites are gluten-free!

[eKatherine]

Hi Mary--I also applaud your putting your son on the gluten-free diet right away. What I can't understand is your husband's doctor. With all of the evidance pointing towards Celiac Disease, why won't they do the Celiac Panel? What is it to them--you requested it! General bloodwork will not tell anything with regard to Celiac--I was misdiagnosed for many (20) years, and had gallons of blood drawn in that time! I was even severly anemic, and no one made the connection between that and my GI symptoms. Anyway, I hope that little Even heals quickly, and that the gluten-free diet is the answer. Keep us posted!

Also, a Dermatologist should take a look at the blisters--they could do a biopsy of the area just near the blisters, and if that is positive for DH, it is also positive for Celiac.

I agree. The appearance is that the doctors are not only incompetent and delusional, but padding their income with unneeded testing. I think you need to do Enterolab and look for another doctor.

[inquirer]

I also think Enterolab is the right way to go. You don't have to convince any doctors to test him. You don't have to keep him on gluten until the testing. And you'll get an answer of whether or not he is sensitive to gluten. The Enterolab stool testing is much more sensitive and likely to pick up a problem that the blood testing might miss. Sometimes it's easier to stick with the diet if you have an actual piece of paper that says that celiac or gluten sensitivity is a problem.

[harrisonsmom]

Hi there. Good for you for being active in your child's health. He certainly sounds like he has all the symptoms of celiac disease. If you want to go gluten-free that is indeed your choice and if he improves on the diet, then all signs sure point to celiac disease. But please remember, without actual medical diagnosis (and sometimes genetic testing is not conclusive enough or insurances and schools wont accept it.) it may be hard to help him in the future. I know we are often fighting an uphill battle with our work to get this disease recognized and put our two cents out. Often we are fighting the ones who shoudl help us--medical field! But indeed, sometimes insurance comps can be picky. U need to double check with yours bc they often want a real medical diagnosis before they agree to pay for future treatments (ie, the blood test and/or the endocopy.) Yes genetic testing is available, but has a 30% chance of being wrong especially if your child had the IgA definicienty that will show no celiac disease but indeed he has it. Now the genetic testing is great in ruling out celiac disease bc if u dont have the genes it is virtually impossible to get celiac disease (all this is from the book "celiac disease: a hidden epidemic by dr peter green, great read!) So as horrible as it may be, you may want to push for the blood tests and/or endoscopy. I know its not fun but if u havent been gluten-free for long u may not have to feed him much gluten to get the test accurate. Often just one month is good. I know one month is a long time to see your child suffer but it may help in th elong run. I'm just suggesting it bc it WILL come up probably. Schools, summer camps, daycares, etc, all will need documentation that he will need a special diet. Even as an adutl it's an issue. I taught for years in Head Start and needed a written diagnosis from my physician that I needed a special diet bc as a teacher I was supposed to eat what the children ate. So I needed a special note and had to discuss it with the children why I was eating something different. I didnt mind bc it gave me a chance to educate ppl about it--even the schools nutritionist who was a bit clueless about it! So I'm just suggesting you may want more definite tests. It is generally not reccommended that u start a gluten-free diet yourself bc it is helpful to have the actual diagnosis. Just a thought, I tend to think things far in advance bc u never know how things will go in life! Good luck! Amy

[eKatherine]

Hi there. Good for you for being active in your child's health. He certainly sounds like he has all the symptoms of celiac disease. If you want to go gluten-free that is indeed your choice and if he improves on the diet, then all signs sure point to celiac disease. But please remember, without actual medical diagnosis (and sometimes genetic testing is not conclusive enough or insurances and schools wont accept it.) it may be hard to help him in the future. I know we are often fighting an uphill battle with our work to get this disease recognized and put our two cents out. Often we are fighting the ones who shoudl help us--medical field! But indeed, sometimes insurance comps can be picky. U need to double check with yours bc they often want a real medical diagnosis before they agree to pay for future treatments (ie, the blood test and/or the endocopy.)

You are saying that without a firm diagnosis of celiac, that insurance companies will refuse to pay for the diagnostic tests that are required to provide that diagnosis in the first place. That makes no sense. Blood tests and endoscopy are not a treatment anyway. The only treatment is diet, which the insurance companies won't cover.

Yes genetic testing is available, but has a 30% chance of being wrong especially if your child had the IgA definicienty that will show no celiac disease but indeed he has it. Now the genetic testing is great in ruling out celiac disease bc if u dont have the genes it is virtually impossible to get celiac disease (all this is from the book "celiac disease: a hidden epidemic by dr peter green, great read!) So as horrible as it may be, you may want to push for the blood tests and/or endoscopy. I know its not fun but if u havent been gluten-free for long u may not have to feed him much gluten to get the test accurate. Often just one month is good.

A month is probably not enough. Three months may not be enough.

I know one month is a long time to see your child suffer but it may help in th elong run. I'm just suggesting it bc it WILL come up probably. Schools, summer camps, daycares, etc, all will need documentation that he will need a special diet.

You're saying that all these will insist on the piece of paper or feed the child gluten daily and clean up after him after he gets violently ill. That makes no sense. No school would do that. I work in public schools. They don't require a doctor's diagnosis of celiac to allow the child to eat a gluten-free diet.

Even as an adutl it's an issue. I taught for years in Head Start and needed a written diagnosis from my physician that I needed a special diet bc as a teacher I was supposed to eat what the children ate. So I needed a special note and had to discuss it with the children why I was eating something different. I didnt mind bc it gave me a chance to educate ppl about it--even the schools nutritionist who was a bit clueless about it! So I'm just suggesting you may want more definite tests. It is generally not reccommended that u start a gluten-free diet yourself bc it is helpful to have the actual diagnosis. Just a thought, I tend to think things far in advance bc u never know how things will go in life! Good luck! Amy

If you were a vegan would they have forced you to eat meat? Or if you said you had a nut allergy, or were on a reducing diet...If you had religious restrictions, you would need a note from a religious official?

The disadvantages of getting a diagnosis outweigh the advantages. How will it help a child to grow up without insurance if the diagnosis makes him uninsurable?

If a person with celiac wants to try to educate the public, it is their right, but there is no obligation for us to make personal sacrifices more than we already have.

[Fiddle-Faddle]

Hi, Evansmom, welcome aboard! Sounds like you are on the right track even if the doctors are clueless.

I found gluten-free gummy vitamins at Costco--hope that helps for starters! Keep us posted--I hope things improve.

[Esther Sparhawk]

Hi Mary,

My three-year-old daughter, Annie, first started her diet in August, 2006. So we've had her on the gluten-free diet for less than a year.

Well, this past spring, she and her sister were riding our family mule. They both fell from the mule. The older sister, who isn't a celiac didn't break any bones, but Annie broke her arm. I don't believe the discrepancy between the two girls' reaction to the fall is a coincidence. Annie's bone density is clearly lower, due to two and a half years of early life with malabsorption.

The doctors said kids Annie's age would heal quickly... but she didn't. They expected her to heal in three weeks' time, but it took twice that. The arm is all better now, but I learned the hard way, that bone specialists know absolutely nothing about celiac disease.

Furthermore, I strongly agree with one of your responders who said, keep a dietary journal. That's what I did. We never would have had a confirmation of celiac disease if it weren't for that.

We use Yummi Bears multivitamins, which say gluten-free on the label. We originally used Flintstone vitamins, but they are not gluten-free, I'm certain. Once we ceased using Flintstone vitamins, Annie's skin problems began to clear up noticeably. The Yummi Bears are not particularly high in calcium though, and calcium is essential when healing bones. I believe Nesquik chocolate milk mix is gluten-free (but it wouldn't hurt to call them first). We used this while Annie was healing, to help her drink more milk than usual, a natural source of calcium.

Best wishes,

Mechelle