Rant Concerning Drs

[Worriedtodeath]

So I

[moldlady]

Wow, WTD,

IT seemed like your post was cut off near the end. Did you have more to say/rant? I agree with you 100% and I don't think things will change any time soon. There is too much money to be made only treating symptoms and not the disease.

That is why even if we are cured we must alert others to what they can do to be well and have their families well.

Good for you for finding out these things and sharing. It is frustrating when it seems as though no one believes you and the docs think you are nuts. Don't worry, we've all been there and I've found that 1 out of 9 WILL listen and try to be better. Don't give up. But, do move on when someone does not want to listen..... including docs.

There are many docs that I did not go back to because I could read it in their eyes that they just didn't get it or did not want to risk it and lose their license or money. Bottom line!!

Some day your children will THANK YOU for what you have done for them!!

ML

[Worriedtodeath]

IT did get cut off but I believe I was thru. LOL!

we are finally on the right path but only because I put my foot down and insisted this is what we are going to do. The ped backs me up but not to the extent of crossing hairs with the gi.

It's just every day on here we see one more mom with a negative result, a sick baby, and a gi that refuses to tell them to remove gluten. I run into people now all the time who have kids with the same problems mine do and their drs are justing throwing drugs at them and the ones who made it to a gi are told it's nothing. Aren't my freshly made, non chemical, non gluten, low sugar "junk" better for my kids than a prepakaged wheat filled sugar filled twinkie with a shelf life of 20 yrs? Even though the diet can be daunting, overall isn't it better for us? Don't most find themselves eating less proccessd food, fast food, and spend more time making stuff in the kitchen? Don't you tend to graviate toward more veggies/fruit and less "junk". Even my cakes and cookies are better nutrionally than what I could buy with wheat. SO why are drs so loathe to tell people to eat gluten-free? Other than convience and the taste of wheat, what are we really missing in the face of better health for our kids? OR has the dramatic improvements been so much for us that I just don't get drs refusing to recommend this diet.

God knows if I didn't have to contend with the gluten thing, I would be buying the junk off the shelf but now I make everything basically except for some gluten-free crackers and cereals. So far the diet has been way healthier and far better than how we used to eat.

I just don't get how when faced with a sick child that appears for all intents to have Celiac, how a dr can say stay on wheat when the results come back "negative"? It's like they are saying your tests are negative so you should be well and we are just going to ignore your not being well. ????

Stacie

[home-based-mom]

I just don't get how when faced with a sick child that appears for all intents to have Celiac, how a dr can say stay on wheat when the results come back "negative"? It's like they are saying your tests are negative so you should be well and we are just going to ignore your not being well. ????

Stacie

I love this rant! My guess is that after umpteen years of education they just can't wrap their heads around the fact that such severe symptoms can be made to completely go away by a simple dietary adjustment. But I think if I took my child to a doctor and described the aches and pains and half-hour journey of food from mouth to diaper, and a doctor told me "that's not possible" I would totally lose it. I don't like to be accused of lying and I think when doctors brush parents off, that's basically what they are doing!

There are med students on this site - hopefully they can educate their classmates and the word can begin to spread. For what it's worth, I have seen doctors almost literally bite their tongue rather than say something in front of the patient against another doctor. Professional courtesy or some such. But based on what you have said, my guess is that your pediatrician will not refer another child to that gi for further testing - especially if celiac is suspected!

[Worriedtodeath]

But based on what you have said, my guess is that your pediatrician will not refer another child to that gi for further testing - especially if celiac is suspected!

To make it worse, we asked for this dr!!!!! Some of the drs in her practice refer to him and perfer him over the one in town. We drove 1.5 hrs to get to him and interviewed him for over an hour! I asked him every question about Celiac, realibility of the test, you name it..... He gave all the right answers - test was unrealiable, blood even worse, testing neg didn't rule out Celiac, etc. He answered everything right. My hubby even grilled him with the tuff questions of why even bother, will not getting a positive change our direction.... you name it we asked. Even told us how to go gluten-free and that we should based on her symptoms. When the results came out, he completely backpedaled and did a complete turn around on his answers. He now won't even return our calls. Our ped is wondering when we will have a follow up and I'm thinking for what?? To be told that our child has multiple food intolerances which just happen to be wheat/rye/barely/oats (that's what the nutrionist told me since it couldn't possibly be Celiac)?????

Stacie

[dbmamaz]

To be told that our child has multiple food intolerances which just happen to be wheat/rye/barely/oats (that's what the nutrionist told me since it couldn't possibly be Celiac)?????

Not that I dont totally appreciate your rant, but my celiac panel came back negative, but my regular allergy testing came back positive for wheat, barley and malt, and milk. Well, and every meat and carrots and garlic and . ..oh, nevermind. I'm eating 20 foods and I swear trying to introduce cukes and lemon juice gave me symptoms. But the point is, its possible to be allergic to all the gluten foods, without having celiac.

I hope your child is doing better on the diet.

[Worriedtodeath]

HI!

We actually thought she had allergies and we had her tested for all main allergies by skin test and then the allergist had us do food trials reintroducing each item after a month of regular normal bm's. He is 100% refusing to budge and say she has any kind of intolerances or allergies because of the length of time it took for her to react to the food. He said if she had a reaction from the moment of ingesting until even as far as 4 or 5 days later he would have considered it and at least thought intolerances. We did each food for 3 weeks. It was when we had been on sliced bread for 2 weeks and the bms started back that we had to go to the ped gi(which took quite awhile) who then decided after a negative biopsy(100 days of wheat) that well she must have food intolerances or allergies and our allergist used the wrong tests and the ped was clueless or she would have caught those. They also said the food trials didn't mean much as that was then and this now. (We had only been on food trials 5 months at that point)

So it still amazes me that if this is the way I'm being done and other moms are going thru the same kind of stuff with ped gi's, then a whole bunch of teachers are going to have to have awhole lot of bathroom passes if we follow the gi's advice and keep on feeding them gluten.

For some reason, I got mad the other day. I reckon my hamburger buns falling set off a nerve. LOL

Stacie

[Worriedtodeath]

Oh she's doing great now and is gaining weight!