Dr Doesn't Believe Us!

[hannahsue01]

I have an unofficial diagnosis and two other family members have positive diagnosis. We have now had our 5 yr old daughter on a gluten-free diet since this past November. We almost immediatly saw improvment in her. The biggest of wich was a huge behavior improvment. She now has allot less conctapation. Isn't complaining of heart burn. Rarely complains of a tummy ache. Her appitite has decreased (she was eating enough for a full grown man and then some....doing things like eating an entire box of cereal bars in one sitting). Her pimply itchy rash has only been present when she's eatin gluten. When she gets gluten she throws up, gets the rash, gets mouth sores, becomes lathargic, sleeps an entire day or more, gets knee aches, etc. The problem is that her Pediatric GI in Iowa City says it isn't possible that she has celiac because her blood results were neg....taken when she was 4. She lost .6 lbs between her visits but also grew so they are not convinced that this is the problem and now the paper work they sent us in the mail about her last visit claims that she needs to see a nutritionist because we aren't feeding her right......wich is bull as I have had training in this area and she eats better than any child I have ever seen. There is not a food this kid won't eat....she loves her vegies. I don't however give her sweets....not very often ne ways or fast food or soda as many of todays kids eat regualy). She has been checked for diabetes and that was negative. The doctor was very very upset that we but her on the diet on our own and that we didn't allow them a chance to give her a biobsy first....but they had said that they wouldn't consider this as a diagnosis so I had put her on the diet looking for answears that they didn't seem to be giving us. I to was diagnosed as malnurished at the age of 5 (I look far from that now). I am concerned to about her wieght.....she is now in the 5%. What do you guys think is the problem....is there somthing I am missing....somthing else I should be looking for? The other problem is that they say they won't write her any excuses such as the one for school lunch because the couldn't do a biobsy.....I rufuse to make her ill for 2 months to get a "official" diagnosis.

[Ursa Major]

My first advice is to switch doctors, as this one first of all doesn't know what he is talking about, dares to be threatening you, and insists on biopsies in small children, when it is common knowledge that they are just as unreliable as the blood work. The nerve of that man!

I suggest finding somebody who understands that the diet trial is a valid diagnostic tool, especially since celiac disease runs in the family, and will diagnose on that basis (and will write the note for school).

Secondly, have you eliminated dairy for Hannah? She may have other intolerances besides gluten.

Your daughter may just be one of those people who are normally skinny, and it isn't necessarily a sign of a problem. The problem are doctors who think every child should weigh the same to be healthy. Which is ridiculous.

Are you feeding Hannah enough saturated fat? That is VERY important for young children, and it is a myth that it's bad for you. Saturated fat is needed by every cell in our bodies, and is essential for brain development and growth in children (and of course, stay away from trans-fats).

The healthiest saturated fat is coconut oil (non-hydrogenated and cold-pressed), which is also the most heat stable fat (besides butter, but you may have to eliminate that). Avocados are high in saturated fat too, I believe. Eggs are also a good source of saturated fat.

You are doing the right thing, don't let that idiot doctor tell you otherwise.

[celiacgirls]

I don't think you are missing anything. I don't get why they think it is so harmful to not eat gluten!

My kids are not "properly diagnosed" either. I don't think the pedi GI would believe me but I haven't been back to try to convince her.

Since they wrote you a letter advising you to see a nutritionist, you might consider having a nutritionist evaluate her diet. Only if you think they might report you to CPS. Then you could pick a nutritionist who knows the gluten-free diet. I have had my children's diet evaluated twice for different reasons and I just wrote down what they ate for 3 days and the nutritionist evaluated it and told me where it was lacking. I just had to pay for one visit each time. I had to pay out of pocket but I think my insurance would have reimbursed me if I had submitted it on time.

I have not had the problems at school but I always send my kids' lunch. I wouldn't trust the school to make a gluten-free lunch anyway.

[Fiddle-Faddle]

Ursa Major already wrote everything I would have suggested!

To phrase it differently, the only other thing you should be looking for is a different doctor!

[chrissy]

according to the medical criteria that is to be met, your doctor can't diagnose your daughter as celiac, so you can't expect them to write a note for school lunch saying that she has celiac disease. why do you need a note for the school? i don't think i would trust the school to feed my children gluten free, note or not. my girls pack their own lunches.

if you see improvement in your daughter on a gluten free diet then keep her gluten free.

[Ursa Major]

according to the medical criteria that is to be met, your doctor can't diagnose your daughter as celiac, so you can't expect them to write a note for school lunch saying that she has celiac disease.

True enough, but the doctor (if he takes the improvements on the diet seriously) can give a diagnoses of gluten intolerance, which would also be good enough for a note. If there is a note, it isn't just for school lunches, but also for consideration on things like play dough, treats the teacher gives out, keeping a child safe from cross contamination from other kids etc.

I do agree though about not trusting schools with a child's gluten-free lunch. That would be asking for trouble.

[hannahsue01]

Thanks guys. I didn't think I was totaly off the wall on this one. I have seen the improvement for myself. I think we are going to change doctors. To answear one of the questions above....Hannah is already off of milk. As far as the eating at school thing we are lucky enough to live in a very small town were they still do things like make homemade food for the students. I know some of the staff personally and it seems as though they should do a good job and would like to give it a try and see if everything goes ok. It is also a finacial issue as she would qualify for free lunch and we would have to spend the money to make her lunch. We will send lunch if need be though. She is currently drinking Lactaid Ultra....we make her pudding with that and she does not eat ice cream. However, the docs said she could have things like yougurt and cheese. I donno for sure if she is getting enough fat. Maybe I should get her some avacodos as that is not somthing we normaly have in the house. What else would be a good source? The other thing as my husband and I have been discusing this today is the possibility that diabetes could be a facter. Diabetes is in the family and so is juvinile diabetes on both sides of the family. She is always thirsty but never thought much of it. I have no idea what is noramal as far as # of times a 5 old pees? She gets very irratated and angry if she doesn't get dinner on time or if we are out and she isn't able to eat for 2 or 3 hrs. She does still snack and says she is hungry evry couple of hrs. Obviously she is loosing wieght and I know that spring is coming up wich if she does what she usually does she looses wieght then....I think from the increase in activity. She also goes threw thowing up periods wich I am unsure if they are celiac related or not but I am pretty confident that they aren't from the flu. From what I have found these are all symptoms of juvinile diabetes but they did check her blood sugar about 6 months ago. She had eatin breakfest that morning and it was checked a few hours after that. It wasn't a fasting test or a test were you drink that sugary stuff. Does anyone know if the other tests are more accurate or what? Someone said above that she may natuarly be skinny but as her mom I don't think that is the case. I don't think she is malnurished....for one I know she is fed....two she is one of the strongest little girls I have run accrosed....she has great muscle tone.....she isn't generaly lathargic or anything that would say to me that she is malnurished. However, when naked she looks like she belongs on one of those starving kid camercials. all her bones stick out....especially her hip bones and her ribs. Somthing is knawing at me that there is still somthing wrong. I am scared to death that they are going to take her from us if one of the doctors decides to report us for what they "think" we are doing to her.

[Ursa Major]

I really think you should try to stop ALL dairy. It may not just be a lactose intolerance, but a casein intolerance.

As I said, a great source of healthy fat is coconut oil. Eggs are excellent, too. She may be deficient in some essential nutrients. It would be wise to have her levels of vitamin D, B12, ferritin, vitamin K, calcium and magnesium tested. She could be anemic, she might very well be low in vitamin D, too. If you find those deficiencies, you'd need to supplement.

The best source of vitamin D is cod liver oil. The best brand is Carlson's cod liver oil, which actually tastes fine (not fishy). I take it, and I WON'T take anything gross (just can't do it). It is also an excellent source of omega 3 fatty acids (which most people are deficient in).

Hannah sounds like she is hypoglycemic. It would be best to feed her small meals throughout the day (six meals rather than three) to keep her blood sugar at an even level. Try avoiding all fruit juices, and limit the amount of fruit and simple carbs.

Make sure her blood sugar levels are checked regularly. I believe she needs to have a fasting diabetes test done, otherwise it won't accurately reflect what her blood sugar levels are. You're right about being concerned about diabetes, she has symptoms to suggest that possibility.

[Fiddle-Faddle]

If Hannah is having Lactaid Ultra, then she is not "off milk," as Lactaid Ultra is milk with lactase added to take care of the lactose.

I second everything Ursa Major has written.

If soy is not a problem (sorry if I missed any info on that), you might try soy milk, or almond milk if nuts aren't a problem. Some brands of rice milk, as you probably know, are processed with barley enzymes and are therefore not safe for celiacs.

[chrissy]

when i read your post i thought the same thing as ursula---hypoglycemia. i have a bit of a problem with this and what i eat can make a difference. maybe you can find a different doctor that will listen to you about how much gluten free is helping, and then like ursula said, maybe he will give you a note for gluten intolerance. personally, i think that the schools ought to just honor a parents request, but i know it won't work that way for most people.

[rez]

Hi Tina, I haven't seen or talked to you in a while. I'm confused as to what brought you to Iowa City. Last time I saw you I thought both of the girls and yourself were doing great on the diet. So sorry you've had to endure all of this. We heard very discouraging comments about the doctors in Iowa City. Many people had negative experiences there, so unfortunately, your situation does not surprise me. I would try to make sure everything else checks out health wise and then continue on the diet. Did other health issues come up that directed you to Iowa City? I know it's hard for a parent to make these decisions for a child without an official diagnosis, but I think you need to reassure yourself that you're doing the best for your child. The gluten free diet is very healthy, and like you said much healthier than a normal diet. We have a wonderful doctor for Thomas in Chicago if you could go there. His name is Dr. Guandalini and he is OUTSTANDING. He's brilliant and his bedside manner is even better. Thomas has his biopsy on Tuesday. Good luck w/ everything. See you in March.

'

[rez]

Thought of one other thing. Celiac disease is a life long condition that can make it difficult to get insurance. Our GI said they don't diagnose unless they are 100%. A lot of conditions and diseases can get better on a gluten free diet and it's not specific to only Celiac. I know it's frustrating, but the doctors consider it a very serious, life long condition and that's why they don't diagnose on dietary response only. Hope this helps. Good luck again!!

[gfpaperdoll]

If you keep the child totally gluten-free & dairy free there is a chance that will fix the hypoglycemia.

I always had this even when I was "wheat light" thinking allergies, then when I went gluten-free & then gluten-free/DF three years ago - my hypoglycemia disappeared.

& darn, no more fast check outs because I was slumping over a shopping cart trying not to pass out, eating a candy bar!!

[hillyb6]

Thanks guys. I didn't think I was totaly off the wall on this one. I have seen the improvement for myself. I think we are going to change doctors. To answear one of the questions above....Hannah is already off of milk. As far as the eating at school thing we are lucky enough to live in a very small town were they still do things like make homemade food for the students. I know some of the staff personally and it seems as though they should do a good job and would like to give it a try and see if everything goes ok. It is also a finacial issue as she would qualify for free lunch and we would have to spend the money to make her lunch. We will send lunch if need be though. She is currently drinking Lactaid Ultra....we make her pudding with that and she does not eat ice cream. However, the docs said she could have things like yougurt and cheese. I donno for sure if she is getting enough fat. Maybe I should get her some avacodos as that is not somthing we normaly have in the house. What else would be a good source? The other thing as my husband and I have been discusing this today is the possibility that diabetes could be a facter. Diabetes is in the family and so is juvinile diabetes on both sides of the family. She is always thirsty but never thought much of it. I have no idea what is noramal as far as # of times a 5 old pees? She gets very irratated and angry if she doesn't get dinner on time or if we are out and she isn't able to eat for 2 or 3 hrs. She does still snack and says she is hungry evry couple of hrs. Obviously she is loosing wieght and I know that spring is coming up wich if she does what she usually does she looses wieght then....I think from the increase in activity. She also goes threw thowing up periods wich I am unsure if they are celiac related or not but I am pretty confident that they aren't from the flu. From what I have found these are all symptoms of juvinile diabetes but they did check her blood sugar about 6 months ago. She had eatin breakfest that morning and it was checked a few hours after that. It wasn't a fasting test or a test were you drink that sugary stuff. Does anyone know if the other tests are more accurate or what? Someone said above that she may natuarly be skinny but as her mom I don't think that is the case. I don't think she is malnurished....for one I know she is fed....two she is one of the strongest little girls I have run accrosed....she has great muscle tone.....she isn't generaly lathargic or anything that would say to me that she is malnurished. However, when naked she looks like she belongs on one of those starving kid camercials. all her bones stick out....especially her hip bones and her ribs. Somthing is knawing at me that there is still somthing wrong. I am scared to death that they are going to take her from us if one of the doctors decides to report us for what they "think" we are doing to her.

honestly i would have her checked for eosinophils it can mimick celiacs and crohns and you would have a neg blood owrk and neg biopsy for both and not all gi will look for eosinophils so you would have to ask and make sure on the pathology report it says none or zeron not that just that show anything on it because alot of times they dont look that is why its missing on the report and it can be caused by wheat and other allergys even evniromental allergys its a bit harder to treat its more wide spread than just glutten but wheat and their other7 top allergens tend to be the main culprits

good luck

hillary

[momagn5]

Hi...

My third child was 9 when she was finally diagnosed. She did the blood tests and a stool test. At the urging of the specialist, my other 3 girls were tested, too. The older two (teens) were in full denial so we agreed to a biopsy on all of them. My youngest was 2 (also now 5), had the worst blood test results so we wanted to see how "bad" things really had gotten. All 4 went in for the biopsies at the same time (a family affair).--my son was just starting solids.

I have so many of the same symptoms as all of kids. I was convinced I, too, had it, but the blood tests returned "normal". I was told of a "stool sample" test that can determine celiac disease, even if the person has been on a gluten-free diet. I don't know if there is any truth in this last part, but the test runs about $125 or so (insurance does not cover this). They send you the kit, your child fills it (you have to do some of the dirty transferring work, of course), and you send it to the lab.

I haven't done the stool test. I did do the biopsy (within "normal" ranges), several blood tests, and many doctor visits. I also changed my diet to gluten-free and feel better. I cheat(ed) often because I couldn't get a solid Y/N answer until last month (sigh).

Check into the stool sample test. It might be what you need.

Good luck!!

[2kids4me]

Just wanting to add that I agree with Ursula.

I have issues with doctors or anyone else that dont bat an eye at vegetarian diets, vegan diets, the atkins diet, low carb...anything like that. But a gulten diet , OMG what are you doing.... crimeny...its a healthy diet that includes all sorts of healthy choices and doctors get ticked off????????

What is going on?

I think when you see a huge improvement in health, what's the problem? and if some symptoms continue then remove common problem foods as Ursula suggested. ...dairy being # 1

Why is this "wrong" ?

Second opinions are always good!

Sandy

[gfp]

If Hannah is having Lactaid Ultra, then she is not "off milk," as Lactaid Ultra is milk with lactase added to take care of the lactose.

I second everything Ursa Major has written.

If soy is not a problem (sorry if I missed any info on that), you might try soy milk, or almond milk if nuts aren't a problem. Some brands of rice milk, as you probably know, are processed with barley enzymes and are therefore not safe for celiacs.

I'll third that....

The percentiles are meaningless and you shouldn't worry about them, they are based on average growth rate and average groth rate means obese unfortunatlely ...if not in the short term in the long term. Or to put it another way a large proportion of the kids in the upper 50th percentile will be clinically obese and of the rest many will become obese later in life...

You are giving your kid healthy food, you can't expect her to be up there with people who feed their kids burgers every meal!

In the same way you are also developing healthy eating habits for the future!!!!

The 5th %-ile is a little low but she has a lot of catching up to do and she might also just be naturally small and healthy!

In short you are not only doing EVERYTHING a great parent would do, you are doing a whole lot more. That Dr has a cheek!

I don't think they can do the diabetes glucose test on small children? (the one where you are starved and then flooded with the drink, its both age and weight restricted as I remember)