Dr says it will never go away

[melanie]

Melanie,

 

You really ought to get testing done to see what the underlying cause is-- whether it is yeast or wheat. If you can't afford testing you could try a simple technique to see if your son has an IgE allergy to wheat. Just rub wheat on your son's arm. Be sure to do it vigorously. Wait 10 minutes. If he develops a rash or hives you will know there is a wheat allergy and this would lead me to suspect there would also be gluten intolerance (inability to digest the proteins found in wheat). If nothing happens there still could be gluten intolerance/celiac (which you would find by doing a stool test, blood test, genetic test, or biopsy). Eating it could also cause an itchy mouth, swollen tongue, a tingling sensation in the mouth, a runny nose. These are all obvious signs of an IgE wheat allergy. (Not to be mistaken for gluten intolerance or an IgG food intolerance response). If your child has the above symptoms then it is quite possible they are also gluten intolerant.

 

Yeast overgrowth and gluten intolerance both have similar symptoms. Gluten intolerance can cause yeast overgrowth, but yeast overgrowth is not ALWAYS caused by gluten intolerance. If your child has gluten intolerance the treatment is 100% avoidance of gluten-- found in wheat, barley, rye, and spelt-- even oats that have not been properly tested gluten free.

 

In some cases even a little bit is problematic. For instance, I have never been tested for celiac but I know I am severely gluten intolerant. I still take regular communion instead of the low gluten (except when I feel I am under the weather and then I abstain). Yesterday the host gave me swollen glands. Today I feel better. I have always been pretty healthy, unlike my dxd son who had terrible digestive issues. He is now in recovery and we are in the process of checking his antibodies after 2 years on a strict gluten free diet. I believe the levels have gone way down based on his reactions. The doctors will tell you that it takes years to get them to go down to the normal range. So to answer your question, NO, it has to be all or nothing when you have a very reactive child whose immune system is out of whack. Your goal is to reduce the antibody levels and this takes time. Every ingestion of gluten keeps the levels elevated and this will also cause digestive and neurological symptoms. If you get consultation from doctors like Kenneth Fine of Enterolab they will tell you that lifelong abstinence is the only cure-- even in the absence of a Celiac diagnosis-- if the patient has gluten intolerant/celiac genes. These folks do not produce the enzymes necessary to properly digest gluten and it just moves around the body reeking havoc in the skin, brain, joints, etc....

 

Caryn

 

I hope my response is clear and not too confusing.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

xactly what is this test hes been tested for celiac yrs ago but nothing do i ask the dr to do a specific test whats it called ?

melanie

[Caryn]

Check out Dr. Fine's website:

 

https://www.enterolab.com/StaticPages/Frame...q.htm#diagnosed

 

IMO gluten intolerance can cause many metabolic problems in the absence of celiac. There are nine gluten intolerant genes and only 2 are associated with celiac. I don't know what kind of test your son took, but I am assuming it was a blood test. Dr. Fine does a stool test that is much more specific. Also, two years ago it might not have been in the blood and now it could be if your child is gluten intolerant genetically and eating gluten on a daily basis. This is a regressive disease. You are born with the gene and your diet plays a huge role in whether or not you develop a disease related to the gluten intolerance. It is toxic if you have the gene. Dr. Fine does genetic testing as well. We have tested our family and are taking a preventative route rather than waiting for symptoms to worsen.

[melanie]

Oh well it happend again I called the neuro about dannys ocd she finally called me back it was only 2days but feels like more.Anyway she says she dosent ttreat OCD only the tics odd huh and I am doing him a diservice by not giving him a nuroleptic and that I can give him a nuroleptic along with another med to counteract the side effects She didnt even want to listen to my concerns I thought this dr was going to be good maybe shes just no saying what i want to hear

[Chemar]

((((((((((((Melanie))))))))))))))

 

that sounds like the neuro who emotionally blackmailed us into starting the neuroleptics

 

and how infuriating that she even admitted that it would be a cycle of meds to relieve side effects of other meds

 

if it were me I would fire that doc

[Olivia]

((((((((((((Melanie))))))))))))))

 

that sounds like the neuro who emotionally blackmailed us into starting the neuroleptics

 

and how infuriating that she even admitted that it would be a cycle of meds to relieve side effects of other meds

 

if it were me I would fire that doc

[Olivia]

((((((((((((Melanie))))))))))))))

 

that sounds like the neuro who emotionally blackmailed us into starting the neuroleptics

 

and how infuriating that she even admitted that it would be a cycle of meds to relieve side effects of other meds

 

if it were me I would fire that doc

 

 

Hi Melanie,

 

I agree with Chemar. No neuroleptics, they caused this tourette's problem for us, you don't need more problems. There are many legal cases againist these medicaitons, they have been misrepresented. Find another doctor.

 

Olivia

[faith]

Melanie,

Could I ask if you've ever had your son on any medications at all? Did he ever have bad reactions or you just don't want to try? what type drug did the doctor want to put him on?

 

 

Olivia, would you mind giving a little more feedback on your comments about neuroplectic drugs having a bad effect on your child. Was he given medication that caused some tics?

 

Thanks

Faith

[MARYANN]

Check out Dr. Fine's website:

 

https://www.enterolab.com/StaticPages/Frame...q.htm#diagnosed

 

IMO gluten intolerance can cause many metabolic problems in the absence of celiac. There are nine gluten intolerant genes and only 2 are associated with celiac. I don't know what kind of test your son took, but I am assuming it was a blood test. Dr. Fine does a stool test that is much more specific. Also, two years ago it might not have been in the blood and now it could be if your child is gluten intolerant genetically and eating gluten on a daily basis. This is a regressive disease. You are born with the gene and your diet plays a huge role in whether or not you develop a disease related to the gluten intolerance. It is toxic if you have the gene. Dr. Fine does genetic testing as well. We have tested our family and are taking a preventative route rather than waiting for symptoms to worsen.

Hi Caryn, I don't know if you remember. I spoke to you before on celiac tests. My daughter got her blood work from Great plain labs and the blood test came out Negative. She had a very low number. no where near the range for celiac. She took the igg and came out in mid range for bakers yeast. Stool and urine also showed yeast. I just was reading Dr. fine's website. Do you think the blood test is enough? I have been meaning to ask you about mindlinx that you once recommended, do you also recommend if not celiac? I have my daughter eaten gluten free pasta. I know its easier on the digestive system but is it better for the yeast? I apologize for all the questions -thanks so much for your help

[melanie]

Melanie,

Could I ask if you've ever had your son on any medications at all? Did he ever have bad reactions or you just don't want to try? what type drug did the doctor want to put him on?

 

 

Olivia, would you mind giving a little more feedback on your comments about neuroplectic drugs having a bad effect on your child. Was he given medication that caused some tics?

 

Thanks

Faith

 

 

He has tried sooo many meds over the years most recent past 2 yrs hes been on Depakote,ABILIFY,Luvox,Seraquel(sp),Lamictal,Trileptial Ive exausted that route he had an allergic reaction to lamicatal and trileptial the others made things worse I think .Things didnt get better untill the antibiotics started and now hes on tenex,buspar,nystatin,zithro,lexaproand various supps also were doing biofeedback His dan dr wants to take him off the zith I called him today to discuss this Im not sure if the abilify made the tics worse I think they were pretty bad and thats why we gave it to him in the first place .He didnt get a tourettes dx untill after we started them but he had soooo many anger issues and when he was on the meds he coulndnt get"his words out" brain freeze

 

Does anyones insurance give them a hard time with long term antibiotics?

[Chemar]

mrsD just updated a thread at NT on meds for TS/OCD etc with some info on why these drugs may be such a problem for kids

 

http://neurotalk.psychcentral.com/post498216-8.html

 

also go to the beginning of the thread for more info that she posted re abilify