Every gut test is negative..NEED your help!

[Guest guest]

Hi all,

We have been treating my son who has severe autism for 6 years now. We've done every treatment, seen every doc and still have gotten nowhere. We recently had my son scoped upper and lower to see if he has anything wrong with him. Every blood test came back negative in every biomarker for GI inflammation or distress! But he has EVERY SYMPTOM of being more of a gut kid. But every test always comes back completely normal! Allergy tests - negative, scopes-negative, inflammatory biomarkers negative. We also did the gfcf diet a while back for about 3 months and no improvement whatsoever. Would you guys hang up the diet thing if you were me. He did have a really high rubella titer that I think we might tackle next. Would you be on a diet while doing this?

Thanks for all your help!!!

Luna

[Guest guest]

Have you done the pill cam?Ruth Sent from my iPhone

Hi all,

We have been treating my son who has severe autism for 6 years now. We've done every treatment, seen every doc and still have gotten nowhere. We recently had my son scoped upper and lower to see if he has anything wrong with him. Every blood test came back negative in every biomarker for GI inflammation or distress! But he has EVERY SYMPTOM of being more of a gut kid. But every test always comes back completely normal! Allergy tests - negative, scopes-negative, inflammatory biomarkers negative. We also did the gfcf diet a while back for about 3 months and no improvement whatsoever. Would you guys hang up the diet thing if you were me. He did have a really high rubella titer that I think we might tackle next. Would you be on a diet while doing this?

Thanks for all your help!!!

Luna

[Guest guest]

yes i went thru that in the early days when i believed in docters and their practices.

my son came back negative for allergies.. negative for all the tests they gave him.

problem is all the tests they did were wrong.

I leearned that the hard way. and i still have itty bitty anger issues over that.( just itty)

listen to your kids symptoms!! if he has symptoms of being gut kid treat him as gut kid..my son showed no improvment on GFCF it doesnt work for everyone. my kid did amazing on SCD now im doing GAPS diet.

there is so many diffrent diets and you must let your kids symptoms be your clues

channa

To: "mb12valtrex " <mb12valtrex >; "gfcfkids " <gfcfkids >Sent: Wednesday, September 28, 2011 3:07 PMSubject: Every gut test is negative..NEED your help!

Hi all,

We have been treating my son who has severe autism for 6 years now. We've done every treatment, seen every doc and still have gotten nowhere. We recently had my son scoped upper and lower to see if he has anything wrong with him. Every blood test came back negative in every biomarker for GI inflammation or distress! But he has EVERY SYMPTOM of being more of a gut kid. But every test always comes back completely normal! Allergy tests - negative, scopes-negative, inflammatory biomarkers negative. We also did the gfcf diet a while back for about 3 months and no improvement whatsoever. Would you guys hang up the diet thing if you were me. He did have a really high rubella titer that I think we might tackle next. Would you be on a diet while doing this?

Thanks for all your help!!!

Luna

[Guest guest]

can't get it. Would love to though!!!

To: "mb12valtrex " <mb12valtrex >Sent: Wednesday, September 28, 2011 3:25 PMSubject: Re: Every gut test is negative..NEED your help!

Have you done the pill cam?

Ruth Sent from my iPhone

Hi all,

We have been treating my son who has severe autism for 6 years now. We've done every treatment, seen every doc and still have gotten nowhere. We recently had my son scoped upper and lower to see if he has anything wrong with him. Every blood test came back negative in every biomarker for GI inflammation or distress! But he has EVERY SYMPTOM of being more of a gut kid. But every test always comes back completely normal! Allergy tests - negative, scopes-negative, inflammatory biomarkers negative. We also did the gfcf diet a while back for about 3 months and no improvement whatsoever. Would you guys hang up the diet thing if you were me. He did have a really high rubella titer that I think we might tackle next. Would you be on a diet while doing this?

Thanks for all your help!!!

Luna

[Guest guest]

I just asked because I had a friend in the same situation. It is apparently possible to have problems in the small bowel but that won't show up on tests and is near impossible to see via scope. She has seen Krigsman though and he treated her son on symptoms and trough what he could see on the pill cam. Her son has made improvements even though the gut is still a big issue for them. And she deals with docs telling her there is nothing wrong all the time. It is important for them to have a local contact because he has had complications. If you are going to check titers you may want to add mycoplasma to your list. Gut issues are not my thing but I have read that it can cause Crohn's. Worth a check I'd think for sure. Best of luck. RuthSent from my iPhone

can't get it. Would love to though!!!

To: "mb12valtrex " <mb12valtrex >Sent: Wednesday, September 28, 2011 3:25 PMSubject: Re: Every gut test is negative..NEED your help!

Have you done the pill cam?

Ruth Sent from my iPhone

Hi all,

We have been treating my son who has severe autism for 6 years now. We've done every treatment, seen every doc and still have gotten nowhere. We recently had my son scoped upper and lower to see if he has anything wrong with him. Every blood test came back negative in every biomarker for GI inflammation or distress! But he has EVERY SYMPTOM of being more of a gut kid. But every test always comes back completely normal! Allergy tests - negative, scopes-negative, inflammatory biomarkers negative. We also did the gfcf diet a while back for about 3 months and no improvement whatsoever. Would you guys hang up the diet thing if you were me. He did have a really high rubella titer that I think we might tackle next. Would you be on a diet while doing this?

Thanks for all your help!!!

Luna

[Guest guest]

Thanks Ruth! We just had mycoplasma checked and it was a 2.92 when it should be below 0.9 what do you think that means? THanks for any help!! Don't see the doc until 0ct. 13th and I'm just in tears over not getting any answers after a bazillion tests and the scopes!

Luna

To: "mb12valtrex " <mb12valtrex >Sent: Wednesday, September 28, 2011 5:06 PMSubject: Re: Every gut test is negative..NEED your help!

I just asked because I had a friend in the same situation. It is apparently possible to have problems in the small bowel but that won't show up on tests and is near impossible to see via scope. She has seen Krigsman though and he treated her son on symptoms and trough what he could see on the pill cam. Her son has made improvements even though the gut is still a big issue for them. And she deals with docs telling her there is nothing wrong all the time. It is important for them to have a local contact because he has had complications.

If you are going to check titers you may want to add mycoplasma to your list. Gut issues are not my thing but I have read that it can cause Crohn's. Worth a check I'd think for sure.

Best of luck.

Ruth

Sent from my iPhone

can't get it. Would love to though!!!

To: "mb12valtrex " <mb12valtrex >Sent: Wednesday, September 28, 2011 3:25 PMSubject: Re: Every gut test is

negative..NEED your help!

Have you done the pill cam?

Ruth Sent from my iPhone

Hi all,

We have been treating my son who has severe autism for 6 years now. We've done every treatment, seen every doc and still have gotten nowhere. We recently had my son scoped upper and lower to see if he has anything wrong with him. Every blood test came back negative in every biomarker for GI inflammation or distress! But he has EVERY SYMPTOM of being more of a gut kid. But every test always comes back completely normal! Allergy tests - negative, scopes-negative, inflammatory biomarkers negative. We also did the gfcf diet a while back for about 3 months and no improvement whatsoever. Would you guys hang up the diet thing if you were me. He did have a really high rubella titer that I think we might tackle next. Would you be on a diet while doing this?

Thanks for all your help!!!

Luna

[Guest guest]

I'd definitely mention it to the doc. Here is one paper I found that he may find interesting. There are many more if you search Crohn's mycoplasma or variations on that theme. http://www.revbiomed.uady.mx/pdf/rb061727.pdfI'm not sure about treatment although I'm sure antibiotics would be needed. There is also a natural mycoplasma supplement from Raintree if you don't want to try antibiotics. Again best of luck. I agree with the other mom who said to trust what your child is showing and your gut. RuthSent from my iPhone

Thanks Ruth! We just had mycoplasma checked and it was a 2.92 when it should be below 0.9 what do you think that means? THanks for any help!! Don't see the doc until 0ct. 13th and I'm just in tears over not getting any answers after a bazillion tests and the scopes!

Luna

To: "mb12valtrex " <mb12valtrex >Sent: Wednesday, September 28, 2011 5:06 PMSubject: Re: Every gut test is negative..NEED your help!

I just asked because I had a friend in the same situation. It is apparently possible to have problems in the small bowel but that won't show up on tests and is near impossible to see via scope. She has seen Krigsman though and he treated her son on symptoms and trough what he could see on the pill cam. Her son has made improvements even though the gut is still a big issue for them. And she deals with docs telling her there is nothing wrong all the time. It is important for them to have a local contact because he has had complications.

If you are going to check titers you may want to add mycoplasma to your list. Gut issues are not my thing but I have read that it can cause Crohn's. Worth a check I'd think for sure.

Best of luck.

Ruth

Sent from my iPhone

can't get it. Would love to though!!!

To: "mb12valtrex " <mb12valtrex >Sent: Wednesday, September 28, 2011 3:25 PMSubject: Re: Every gut test is

negative..NEED your help!

Have you done the pill cam?

Ruth Sent from my iPhone

Hi all,

We have been treating my son who has severe autism for 6 years now. We've done every treatment, seen every doc and still have gotten nowhere. We recently had my son scoped upper and lower to see if he has anything wrong with him. Every blood test came back negative in every biomarker for GI inflammation or distress! But he has EVERY SYMPTOM of being more of a gut kid. But every test always comes back completely normal! Allergy tests - negative, scopes-negative, inflammatory biomarkers negative. We also did the gfcf diet a while back for about 3 months and no improvement whatsoever. Would you guys hang up the diet thing if you were me. He did have a really high rubella titer that I think we might tackle next. Would you be on a diet while doing this?

Thanks for all your help!!!

Luna

[Guest guest]

Gluten can take up to 8-10 months to be gone from the body completely. Casein leaves the body much quicker which is why most people suggest starting with that. For some people, it can up to a year before they see a difference removing gluten. There is no guarentee. You will find people who insist that ALL autistic kids are gut kids. I, for one, do not believe this. My son is not a gut kid. But if he has symptoms, then you'd be wise to give the diet a fair chance. Tests are good guides but again, not guaranteed. It's important that your doctor knows how to interpret them. Your best bet is to always treat by symptoms. Many people have children who must remain on the diet long term (years) so yes, of course you can go

ahead and treat these symptoms while on the diet. Milk was created and for baby cows and wheat is processed to the point where it's barely recognizable, so they're not the worst things in the world to take away. More importantly, be sure to remove high fructose corn syrup, preservatives, artificial colors and flavors, soy products, refined salt and sugars...pretty much anything processed. These are excitotoxins and noooooo bueno. so so so important! You might also be interested to learn about enzymes (check out enzymestuff.com). But for sure, do not ignore your sons symptoms just because a test shows something different. Good luck! To: "mb12valtrex " <mb12valtrex >; "gfcfkids " <gfcfkids >Sent: Wednesday, September 28, 2011 3:07 PMSubject: Every gut test is negative..NEED your help!

Hi all,

We have been treating my son who has severe autism for 6 years now. We've done every treatment, seen every doc and still have gotten nowhere. We recently had my son scoped upper and lower to see if he has anything wrong with him. Every blood test came back negative in every biomarker for GI inflammation or distress! But he has EVERY SYMPTOM of being more of a gut kid. But every test always comes back completely normal! Allergy tests - negative, scopes-negative, inflammatory biomarkers negative. We also did the gfcf diet a while back for about 3 months and no improvement whatsoever. Would you guys hang up the diet thing if you were me. He did have a really high rubella titer that I think we might tackle next. Would you be on a diet while doing this?

Thanks for all your help!!!

Luna

[Guest guest]

I wanted to add: you may also be interested in checking out stopcallitautism.com. They have a study your child may be eligible to participate in that tests for neuroinflammation. Can't hurt to take a look : ) -TammyTo:

"mb12valtrex " <mb12valtrex >; "gfcfkids " <gfcfkids >Sent: Wednesday, September 28, 2011 3:07 PMSubject: Every gut test is negative..NEED your help!

Hi all,

We have been treating my son who has severe autism for 6 years now. We've done every treatment, seen every doc and still have gotten nowhere. We recently had my son scoped upper and lower to see if he has anything wrong with him. Every blood test came back negative in every biomarker for GI inflammation or distress! But he has EVERY SYMPTOM of being more of a gut kid. But every test always comes back completely normal! Allergy tests - negative, scopes-negative, inflammatory biomarkers negative. We also did the gfcf diet a while back for about 3 months and no improvement whatsoever. Would you guys hang up the diet thing if you were me. He did have a really high rubella titer that I think we might tackle next. Would you be on a diet while doing this?

Thanks for all your help!!!

Luna