New To All This

[mrssittingduck]

had problems with my son who is 6 and a half month old, he was classed as an hungrier baby taking feeds every hour and still screaming for more so by 3 month had weaned him onto food,

now since he was born he has had persistant loose stools yellow and runny and hardly put weight on, he was born at 7 pound and by the age of 5 month weighed only 8 pound 3 ... and stomach always bloated,the health visitor never came out to weigh him due to me having 4 other kids she couldnt cope with anyways he ended up in hospital due to a tragic accident he rolled over in his moses basket and suffocated, everything come back all clear and he is ok now thank goodness, but they began to question me about his weight, couldnt figure out why he was so small, they saw him feeding , kept me in for days , weighed him regularly and still no weight on, so satisfied i wasnt starving him eventually sent me home,

i found out a few weeks back celiac runs in the family and asked to get him tested for it, of which both doctor and health visitor refused to do the test as they had no reason believe he would have it.. in the end still no weight added on i looked around and found tests online, the tests are the ones that test for IGA and transglutamine blood test... his came up within a couple of minuits as positive, so have now managed to get the health visitor to listen, and she is getting into touch with different people,

after jasons test came as positive i tested myself which also came back as a positive...

dont know what happens from here but hope to learn more about it,

are their any chances of getting a false positive from this test does anybody know?? and if not can anybody tell me what shluld happen from here ? and any tips on living with it ?

thank you in advance ....

katie

[ShayFL]

First, sorry that you have gone through all of this.

Make sure they run a complete celiac panel. If all else fails and you can afford to pay out of pocket, you can use a place called directlabs.com They email a req. form and you just have to go to a lab for the blood draw.

We are never hostage to doctors. You can get many tests all on your own by using places like directlab or Healthcheck or Life Extension. Never let them bully you or tell you no if you have deep intuition about something. If they refuse a test, check with directlabs and see if they have it and how much it costs.

I he improves soon.

[Mtndog]

Hi Katie- I'm so sorry that you've been through so much! I hope your son feels better soon. Celiac is genetic so if it runs in your family, your son has it, and you tested positive, it's likely you DO have it (I was diagnosed by gene test and positive response to the diet; however, I think something like 33% of the population have one of the genes).

It's been awhile since I've done any testing, but from what I remember, you're more likely to test negative than positive. A positive test is a pretty strong sign. If you wanted, you could do the small intestine biopsy to see if you have any damage.

I also think a lot of women find that it can be triggered by body trauma like child birth too.

I really believe that if you try the diet and you feel better, that's your best indicator. There is a lot of GOOD information on this site and people with a lot of experience so WELCOME!!!!!!!!!!!!!

[mrssittingduck]

thank you both of you,

my doctor isnt much cop which is why i brought a test myself.... basically my aunt rang up and said oh by the way have you had him tested for celiac as it is in the family, my aunts son was diagnosed with it at a few month old and her other son was diagnosed about 5 weeks back, her daughter has refused the test.... the health visitor and doctor both decided that their was no need toget him tested as they had no reason to suspect it could be that (even though its heredetary hmmmph) i ended up spending a fortune on the tests to get him tested and wasnt expecting it to come out positive but it did, i used theother test on myself which came out positive, so straight up the health visitors to see my regular one, wasnt their so left a message which she picked up a week ago and still hasnt got back to me about, i ended up seeing a different health visitor who looked at the tests and confirmed they both are positive, she has now put a refferal in to my gp, lets see what he has to say about it he has moaned at me twice already over me wanting the tests done,

is ok for them , its not them been treated like the worlds biggest criminal , it was proved accidental what happened to my son and i wasnt even their when it happened yet i get accused of all sorts grrr.. then they suddenly notice he weighs the same as a couple of week old baby after months of been born and months of me ringing the health visitor up to get her to weigh him as i knew something wasnt right ...

this health visitor has turned around and basically said you have done all you can, well done on doing it and going against what has been said and doing what you can for him... thing is, i shouldnt have had to, they should have sorted it before he got to that stage....i pointed it out when he was a few week old that he wasnt growing or gaining weight...

will make sure the doc does a complete celiac test thanks shay... and you are right about never held hostage by them, but think how many others dont know the tests are out their, i found out by pure accident looking up the word celiac when the doctor refused to test so i could find out exactly what it was.

what exactly is a small intestine biopsy? im assuming they take a pice of the intestine or something? going to have a read around the boards see what info i can pick up.... and well my trauma of childbirth wasnt exactly a trauma lol i have 5 living kids at the age of 24 ...and the longest labour lasted 6 minuits from start to finish lol

will give the diet a go see how i take too it, need find the gluton free stuff first though

thanks for the welcome

katie

[RiceGuy]

If I'm understanding correctly, you are outside the USA, yes? Please do be aware that gluten-free foods as defined by the European CODEX can have up to 200ppm gluten content. Many people find this level too high and react to it. Either way however, it is easier to stick to foods which are normally gluten-free, like veggies, fruits, legumes, nuts, seeds, etc, and prepare your meals from scratch rather than trying to replace breads and other baked goods with prepackaged gluten-free items.

As for the intestinal biopsy, yes, a sample of tissue is taken. The problem with this is that it is routinely falsely negative, because the intestinal damage is often spotty. Though the diet is the most definitive test, doctors do not like to rely on what they cannot examine under a microscope or other equipment. It's like simply telling the doctor we feel better while on a gluten-free diet is like saying "it's all in our heads" I've never ever heard of a false positive for Celiac either.

Anyway, I'm sure you've found the answer, and I hope you feel better soon!

[Mtndog]

.... and well my trauma of childbirth wasnt exactly a trauma lol i have 5 living kids at the age of 24 ...and the longest labour lasted 6 minuits from start to finish lol

thanks for the welcome

katie

Omgosh- that's amazing- 6 minutes!!!!!!!!!!!! Sorry you had such a horrid experience with the health visitor in addition to everything that happened with your son.

And RiceGuy is right- watch out for the Codex products- 200 ppm is too much for many people. Luckily, in the last few years, gluten-free food (bread, snacks, etc) has REALLY improved taste and texture wise.

[mrssittingduck]

Omgosh- that's amazing- 6 minutes!!!!!!!!!!!! Sorry you had such a horrid experience with the health visitor in addition to everything that happened with your son.

And RiceGuy is right- watch out for the Codex products- 200 ppm is too much for many people. Luckily, in the last few years, gluten-free food (bread, snacks, etc) has REALLY improved taste and texture wise.

thanks ,

health visitors really getting to me round here, but since a different health visitor said the test was positive i havnt heard a single thing from my usual one who was throwing the accusations around , even though she was suppost to have rang me about the test to sort out what will happen now .

and thanks to both of you, will keep my eyes out on the codex products, i am in united kingdom not the us so yes you are right

katie