Scary Doctor

[sillyactsue]

I haven't been on for a while for technical reasons but my needed finally out weighed my technilogical fears and I have hacked my way back.

My two and a half year old daughter had been off gluten for nearly 7 months after having tests done through enterolab. Because of a legal battle with my soon to be ex-husband over visitation issues I needed a definite diagnoses of gluten sensitivity along with a treatment plan. For the judge. I know through enterolab that she does not have the gene for celiac but she has two copies for gluten sensitivity. The gastroenterologist I took her too jumped down my throat for going by enterolab recommendations. She said if a test isn't FDA approved it isn't an official diagnoses. She insisted on challenging my daughter with gluten. We did, for nearly one and a half months. Of course the endoscopy showed beautiful, normal intestines. Enterolab had told me back in May that there was no damage even with gluten. We will get test results from tissue, blood and gene test in two weeks. When the doctor told me she did a gene test as well I asked her if it was for celiac or gluten sensitivity. she said they are the same thing. In other words it is for celiac. If the results are negative she wants to challenge my daughter for 4 or 5 more months and test again. This is insane!

My daughter has several symptomd but the most disturbing one is that she is not gaining weight. She had just gained a pound after a year of being 20 pounds when the need to have an FDA approved test arose.

My ex- has tried to use her lack of weight gain to say I am not taking care of her. I feel a bit trapped here any ideas?

[tarnalberry]

You have a very standard doctor. Standard teaching, standard thinking. I encourage you to look for a second opinion, but it may be that she's too young for reliable tests. Does she do better on the gluten free diet in multiple ways? Unfortunately, the genes for gluten sensitivity are not recognized by mainstream medicine, and don't have a lot of research behind them right now. That doesn't help you, at all, unfortunately.

[Nancym]

hmmm... I wonder if a good lawyer could help you out with this? You might be able to get some of the research from Pub Med or hire an expert witness of your own. But you'd be going up against mainstream medicine and its like trying to move a mountain.

[sillyactsue]

You have a very standard doctor. Standard teaching, standard thinking. I encourage you to look for a second opinion, but it may be that she's too young for reliable tests. Does she do better on the gluten free diet in multiple ways? Unfortunately, the genes for gluten sensitivity are not recognized by mainstream medicine, and don't have a lot of research behind them right now. That doesn't help you, at all, unfortunately.

Hi Tiffany,

She does do better off gluten. On gluten she has horribly foul smelling mushy poop, constant runny nose and watery eyes and is grouchy, stubborn and easily angered.

People who met her over Thanksgiving and then saw her again after Christmas were shocked at the difference in her behavior. She was on Zyrtec from the time she was 8 months old until she was just over one and a half. Within two weeks of being off of gluten and dairy she was off of zyrtec. She has to have it evry night now. without she has a constant runny nose and fusses all day that her nose hurts.

I suggested to the doctor that my daughter was to young for the test to be accurate and she looked at me as if I had two heads. She just kept on about the gold standard and pretty much turned a deaf ear to any thing that isn't what she thinks. She has suggested that the stress in my home is causing her to not grow, (we have a very happy home, now anyway) or that I don't offer three regular meals with snacks in between. We have always eaten healthy and my daughter eats as much as she wants all day. The doctor actually critisized people (including me) that try to raise their kids on only food that is healthy and that it causes kids to not get enough calories.

I am open to anything that actually helps my little girl but I am unwilling to trust the word of someone who has only the FDA's approval and the gold standard as a priority. Does anyone know of a good pediatric gastroenterologist in any of the following areas:

Oklahoma City, Tulsa, Little Rock or Dallas? Someone who would be willing to diagnose using an elimination diet.

Any advice wanted and welcome,

Gloria

[Rachel--24]

My daughter has several symptomd but the most disturbing one is that she is not gaining weight. She had just gained a pound after a year of being 20 pounds when the need to have an FDA approved test arose.

Did she gain weight while being off gluten for 7 months??

The reason I ask is because if there was no improvement to her *primary* symptoms there could be an underlying issue. Underlying issues can actually lead to a gluten intolerance (that is not Celiac) and hence, additional symptoms when gluten is consumed.

Kids are generally quick to heal...if she did not seem to "heal" while she was off gluten there could be another problem with gluten intolerance making things worse.

I tested with Enterolab also and had very high malabsorption (I had lost alot of weight, loose stools, etc.)....I came back positive accross the board but I do not have Celiac genes and my Celiac tests were negative.

I am definately gluten intolerant but it wasnt actually the cause of my illness....but rather a result of my illness. In other words....other circumstances caused me to become gluten intolerant. I'm still not healthy off of gluten but eating gluten will make my situation alot worse.

If your daughter had obvious and dramatic inmprovement from the diet itself then gluten intolerance is probably her only problem...even without a Celiac gene.

Personally I dont think you will get very far with the gluten sesitivity genes...as Tiffany said....there isnt alot of research behind this.

I'm actually a bit skeptical myself since nearly the entire population carries either sensitivity genes or Celiac genes....there is only a very small percentage of people who dont carry these genes.

So the sensitivity genes in and of themselves dont really prove much.

I feel very bad that you are going through this and hopefully things will turn out for the best with regards to your daughter and her health.

Its unfortunate that you need some type of medical *proof* that gluten is making your daughter sick. If she improved without it.....then that should be enough evidence for everyone involved.

Good luck with all of this.

[sillyactsue]

Did she gain weight while being off gluten for 7 months??

The reason I ask is because if there was no improvement to her *primary* symptoms there could be an underlying issue. Underlying issues can actually lead to a gluten intolerance (that is not Celiac) and hence, additional symptoms when gluten is consumed.

Kids are generally quick to heal...if she did not seem to "heal" while she was off gluten there could be another problem with gluten intolerance making things worse.

I tested with Enterolab also and had very high malabsorption (I had lost alot of weight, loose stools, etc.)....I came back positive accross the board but I do not have Celiac genes and my Celiac tests were negative.

I am definately gluten intolerant but it wasnt actually the cause of my illness....but rather a result of my illness. In other words....other circumstances caused me to become gluten intolerant. I'm still not healthy off of gluten but eating gluten will make my situation alot worse.

If your daughter had obvious and dramatic inmprovement from the diet itself then gluten intolerance is probably her only problem...even without a Celiac gene.

Personally I dont think you will get very far with the gluten sesitivity genes...as Tiffany said....there isnt alot of research behind this.

I'm actually a bit skeptical myself since nearly the entire population carries either sensitivity genes or Celiac genes....there is only a very small percentage of people who dont carry these genes.

So the sensitivity genes in and of themselves dont really prove much.

I feel very bad that you are going through this and hopefully things will turn out for the best with regards to your daughter and her health.

Its unfortunate that you need some type of medical *proof* that gluten is making your daughter sick. If she improved without it.....then that should be enough evidence for everyone involved.

Good luck with all of this.

She didn't gain any weight for most of the 7 months. She did make it to twenty one pounds near the end. Enterolabs nurse said that it can take a up to a year or so of a drastic diet change for the body to adjust to and start using the nutrients from the food. Of course, I don't and won't know if we had gone a little longer gluten free if she would have gained more.

What kind of illnesses can gluten sensitivity make worse? I have never heard this before and am interested.

By the way Enterolabs showed that she had no malabsorption. They said her immune system was using her calories making antibodies to fight the gluten and that was probably why she wasn't gaining weight.

Thanks for the gene info. I guess I thought the research was further along then it is. I will not push that issue with my doctor.

Thanks for your input.

Gloria

[plantime]

Hi Tiffany,

She does do better off gluten. On gluten she has horribly foul smelling mushy poop, constant runny nose and watery eyes and is grouchy, stubborn and easily angered.

People who met her over Thanksgiving and then saw her again after Christmas were shocked at the difference in her behavior. She was on Zyrtec from the time she was 8 months old until she was just over one and a half. Within two weeks of being off of gluten and dairy she was off of zyrtec. She has to have it evry night now. without she has a constant runny nose and fusses all day that her nose hurts.

I suggested to the doctor that my daughter was to young for the test to be accurate and she looked at me as if I had two heads. She just kept on about the gold standard and pretty much turned a deaf ear to any thing that isn't what she thinks. She has suggested that the stress in my home is causing her to not grow, (we have a very happy home, now anyway) or that I don't offer three regular meals with snacks in between. We have always eaten healthy and my daughter eats as much as she wants all day. The doctor actually critisized people (including me) that try to raise their kids on only food that is healthy and that it causes kids to not get enough calories.

I am open to anything that actually helps my little girl but I am unwilling to trust the word of someone who has only the FDA's approval and the gold standard as a priority. Does anyone know of a good pediatric gastroenterologist in any of the following areas:

Oklahoma City, Tulsa, Little Rock or Dallas? Someone who would be willing to diagnose using an elimination diet.

Any advice wanted and welcome,

Gloria

Columbus, Kansas

St. John's Medical Center

Diana Marshall, PRN

620-429-3636

She diagnosed gluten intolerance in me based on dietary reaction. She is the first person that told me that dietary response is a test in and of itself. They take insurance.

[Gentleheart]

With all due respect, even as most medical doctors go, yours sounds quite opinionated and unwilling to listen to reason or common sense. Always remember that YOU are the person paying and THEY are the person being HIRED to do a job for YOU. Is there a reason not to quietly and strategically move on and get someone much more enlightened and kind before you go any further with this potential legal situation?? Hint. Hint.

[jayhawkmom]

She didn't gain any weight for most of the 7 months. She did make it to twenty one pounds near the end. Enterolabs nurse said that it can take a up to a year or so of a drastic diet change for the body to adjust to and start using the nutrients from the food.

My daughter, who was 4 at the time of her dx with gluten intol - gained 5 lbs in 7 months after starting a gluten-free diet. She also grew 3 inches in height.

I just wanted to let you know that, because my daughter's blood and endoscopy were both "questionable" for Celiac. She had no villi damage, according to endoscopy - yet had ulcers in her duodenum, along with other issues.

Like Rachel, I'd be questioning whether or not the gluten intolerance was BECAUSE of something else, rather than the lack of weight gain being due TO the gluten intolerance.

I agree with the thoughts of getting a second opinion, finding a different doctor - perhaps a different TYPE of doctor. I'm assuming it was a pediatrician you are working with. What about an allergist? A pediatric gastro?? Anyone who might be more well versed in issues regarding gluten intolerance, and it's causes.

Lots of luck to you!

[sillyactsue]

Columbus, Kansas

St. John's Medical Center

Diana Marshall, PRN

620-429-3636

She diagnosed gluten intolerance in me based on dietary reaction. She is the first person that told me that dietary response is a test in and of itself. They take insurance.

Thanks Dessa, I will be calling her office Monday.

Jayhawkmom, my DD has been growing in height just not weight much. Scarey Doctor is a pediatric gastroenterologist.

Gentleheart, hint well taken. I actually wrote and faxed a letter to the doc that let her know nicely but in no uncertain terms that she was the one assisting me. The next time I saw her she was nicer but still stubbornly opinionated.

I sincerely appreciate everyone's support and concern and will keep you updated.

Gloria

[Phyllis28]

Gloria,

One additional step ,you may want to take, is to consult a nutritionist to confirm that the gluten fee diet your daughter has been eating is providing the proper amount of calories and nutrition. This would be additional support for that you are taking care of your daughter. This would prevent a judge from assuming (inaccurately) that a gluten free diet is lacking in nutrition.

I wish you the best.