I Have Hope Again!

[shan]

Just came back from an eating clinic, where some bright sparks get together to decide what is wrong with you (or my ds in this case!) and they say it is absolutely not possible its celiac - according to them it is gastric reflux!! (i thought he was too old for it - he is one today!) Can you imagine?! i've been in hospital for a whole month and not one single doctor, however high up, came up with this idea!! They started him on meds, as of tomorrow, and i am gonna see if they are correct!! Whether it is or not, at least they are coming up with ideas of what it could be!!

The other idea, which they and i are hoping its not, is that he has a problem with his growth hormones... anyone have any idea what that means, and how they treat it?

[Ursa Major]

Ehm, gastric reflux? Do you realize that gastric reflux is one of the very common symptoms of celiac disease? How do they determine that he absolutely cannot have celiac disease? I don't get it. Gastric reflux and medications (which have never been approved for kids, as far as I recall) is good news? Personally, changing diet and feeling better is infinitely superior to taking dangerous medications.

And actually, retarded growth is another extremely common celiac disease symptom. As is failure to thrive.

I don't mean to belittle you. But please don't believe that these doctors know everything. They may be completely wrong on this one. You see, gastric reflux is a SYMPTOM! It is no more a disease or valid diagnosis in itself than IBS is. It is caused by something. It doesn't stand by itself. Therefore, the medication will only cover up a symptom, but won't do a thing to fix the cause of the gastric reflux.

I used to have terrible reflux, which caused an ulcer in my esophagus at one point. The reflux completely stopped with the diet I am on right now. If I avoid the foods I am intolerant to, I don't have reflux (despite having a confirmed hiatal hernia). If I do eat them, I get heartburn and reflux. Cause and effect. No meds needed, just avoiding certain foods will fix the problem.

[shan]

actually, what htey are saying is that the reflux is coz he is a baby still, and it is burning him up inside. they don't believe it is celiac and that they took him off all these foods just so that the docs can say that they have done some thing. if it was celiac, then why did he not gain or grow since he has been on the diet. really since he has been eating he has had gluten twice, at the very beginning and since then, for approx 4 months he has not had any. the only time he gained was when he was tube fed... but you do say valid points, and i could be clutching at straws... by nature i am positive, sorry can't help that

[gfgypsyqueen]

Here's my two cents...not like you asked for it, but hey...

I assume you or a family member has celiacs? Your child is almost one and having issues. I would make the Drs rule out diseases through testing. Rule out celiacs through endoscopy or EnteroLabs. Until they provide test results to indicate something is negative, I would not take their word for it.

My reasoning, I have a 2.5 yr old. She had problems at 9 mths. A solid year later and still the drs just wrote it off as a petite child, just the way she is, not failing to thrive...She was falling off the growth charts and had barely grown in a yr. They also insisted that SHE CANNOT have celiacs because she is too young, because she is growing, the rash is nothing, the constant diarrhea is just her system, etc. I heard it all. After fighting with them to test her, turns out she is allergic to dairy and has celiacs gene. The biopsy was inconclusive. But after following drs orders and getting nowhere, she is now gluten-free/CF and growing, gaining weight, and the rash is gone. She had other issues, but those were the big ones.

When she was an infant, she had colic. They gave her GERD drugs and all kinds of drugs trying to help her. When they gave her a serious drug that I was on for stomach problems, I knew we had a problem. To date, she has been prescribed a variety of medications that are not for children or have some terrible side effects. I no longer trust drs.

So IMO, make the drs rule out diseases through tests, do just take their word for it.

[shan]

you must have misunderstood me!! i am still keeping my precious one of gluten, dairy, soya and eggs. Keeping off gluten is easy compared to the other three

I am not saying he is for sure not a celiac, its just that they don't understand why he still didn't grow since he's been off all those things, so they are now looking at different things. I actually told them, in order for me to have a clearer picture, for them to test to see if he has the gene for celiac. It is only my daughter that has celiac - neither me nor my husband has it, nor anyone else (except if you count my step grandmother !!)

I actually am doing all this testing in israel, england was useless - they just called social services on me for starving my daughter!!! But thats another story, and a good one at that!!!

[jmd3]

My hubby continues to remind me that Dr's have a license to "practice medicine".

[Ursa Major]

Shan, I am glad you are still keeping your son off those foods. I have no idea why he still won't grow, that is definitely a mystery. If something is still 'burning him up inside', there is something causing that! Medication may be okay until the cause is found. But the less time he takes them, the better.

Maybe he has intolerances nobody has thought of yet. Maybe nightshades? Tomatoes can cause gastric reflux. I was told that with a hiatal hernia I shouldn't eat tomatoes or drink orange juice, as it could cause reflux. I bet it did, I am intolerant to tomatoes (I didn't know then)! As well as potatoes and peppers.