GF, CF, Soy and Nut Free

[Betty04]

Hi,

 

I could really use some advice. My 4 year old has been GF, CF, Soy and Nut free for almost a year. Maybe some soy in restaurants in the last month- but other than that we have had strict adherance. Back in October we started a trial of antibiotics to see if there was a PANDAS component. It resolved his tics about 90%. Then we moved cross country and his tics are the worst they have ever been despite continued antibiotics and strict diet of GF, CF, soy and nut free. I stopped most supplements because it was no longer worth the effort to fight and nothing was helping. He was on B12 shots 2x a week, folic acid, P-5-P, magnesium, calcium and probiotics. At this time I have only continued the probiotics because I am still giving him the antibiotics and I give him calcium because he does not have a dietary source on his current diet. I am desparate to help him but don't know what I can do. The move has been stressful and he started a new school. Maybe I just need to let time pass and he will settle down as he adjusts to our new home. But as I am sure you can relate, it is so hard to do nothing. However it is hard to make all these sacrifices and have no improvement! I order the Feingold progam earlier this week thinking maybe I should cut out salicylates. I have started to try this on my own this week as it takes 7-10 days to get the program in the mail. This has been the ultimate diet challenge as I really feel like I have nothing but meats and pears to feed him! I have also tried to cut out corn since we have never tried that. However it is impossible for me to cut it out entirely because I need to give him some pudding to take his antibiotics (he does not swallow pills) and I think the yummi bears that I use as his calcium supplements have corn in them since it is not listed as a corn free product.

 

I feel I am driving myself crazy and have only seen my son worsen. I want to give up but can't... how can I not try to lessen the tics and we have also invested the last year in diet and supplements with a tremendous sacrifice to make it all work!

 

Any thoughts would be greatly appreciated! Thanks!

[Caryn]

Betty,

Yikes! I feel really bad for you. It sounds like your stress levels are hitting the ceiling.

Have you done IgG testing? What made you decide to do GF CF SF? I am curious. You say you are starting Feingold. Have you been watching the artificial stuff all along or just recently?

Did you have high titers for PANDAS? Is this why you are doing the antibiotic treatments? Have you recently changed the medication?

Have you ever tested for candida?

What kind of probiotic are you using?

 

I have been doing no gluten, corn, soy, and Feingold for almost 2 years. I do a lot of dairy free but have reintroduced a little dairy in the last six months in moderation with enzymes. So I know what you are going through and about some of the possible pitfalls involved. Corn is a biggie for us. What in particular makes you suspect corn?

[Betty04]

Betty,

Yikes! I feel really bad for you. It sounds like your stress levels are hitting the ceiling.

Have you done IgG testing? What made you decide to do GF CF SF? I am curious. You say you are starting Feingold. Have you been watching the artificial stuff all along or just recently?

Did you have high titers for PANDAS? Is this why you are doing the antibiotic treatments? Have you recently changed the medication?

Have you ever tested for candida?

What kind of probiotic are you using?

 

I have been doing no gluten, corn, soy, and Feingold for almost 2 years. I do a lot of dairy free but have reintroduced a little dairy in the last six months in moderation with enzymes. So I know what you are going through and about some of the possible pitfalls involved. Corn is a biggie for us. What in particular makes you suspect corn?

 

 

Caryn, thanks for your response. All my son's diet and supplements have been guided by his DAN doctor. We did have IgG testing last year (you thoughtfully responded when I was overwhelmed by the results) and that had the DAN doc recommend GF CF SF. I am just desperate and never cut out corn despite him testing posititve on the IgG testing. I thought maybe also salicytates might be a problem but we have always been on an organic, nothing artificial diet. My son has had candida testing with several different tests and they are always in the normal range and he takes 4 capsules of S. Boulardi daily. Long story on why we thought PANDAS. He had an explosive onset of tics after the flu shot. So obviously his immune system is involved in the tics. He had a long history of sinus/ear infections and his tics cleared with clindamycin after the flu shot episode. The tics returned after we removed his adenoids/tonsils preventatively. We tried diet and supplements for the past year and then in the fall retried the clindamycin and azithromycin with extremely positive results. But all gains were lost in our move. There may be an environmental allergy component was we moved from Connecticut to California? He is taking a nasal steroid for the past 3 weeks as we started it for a cold and his DAN doc thought it might be helpful to continue. But unfortunately nothing is working so I am just driving myself crazy to think what else I could do? I think I might just try to remove corn first while waiting for the Feingold material. Any advice on how long I might need to wait to see if he benefits from no corn or no salicytates?

 

Thank you!

[Caryn]

I am just desperate and never cut out corn despite him testing posititve on the IgG testing. I thought maybe also salicytates might be a problem but we have always been on an organic, nothing artificial diet. Any advice on how long I might need to wait to see if he benefits from no corn or no salicytates?

 

In our case the wheat and corn allergy were in the 'red' zone, which means our son was highly allergic to them. We also have not seen a major issue with yeast (although we tested after having him on a candida cleanse diet for four months w/o proper testing, so who knows?)

I am not sure how severe the corn intolerance is in your case, but I will tell you that I saw an improvement within 24 hours on the corn. He was a daily bed wetter and the first thing that resolved when we eliminated the corn completely was the elimination of the bed wetting problem. Even now if he gets just the slightest exposure I can be guaranteed that he will wet that night. It is weird.

Corn intolerant folks all complain of similar symptoms. I just wonder if you see any of these: irritability, tiredness, dark shiners under the eyes, inability to concentrate-- sort of brain fogginess. To me the symptoms seem similar to the gluten intolerant folks. I see in my son a sort of opiate effect. When he initially ingests it he gets hyper and silly happy, sort of 'drunk' and then when he comes down off of it he gets very moody, irritable and suffers a sort of 'hang-over' effect. It was a pretty consistent pattern with him, back then when I was still learning which foods were okay and which ones had hidden corn. Now when I introduce a new food to him even his teacher will recognize when he has gotten 'corned' by accident. 99% of the time when I call the manufacturer and really dig I will discover a corn connection. (Like the recent discovery with the EnviroKids gluten free rice crispy treats.)

 

Part of me thinks you should experiment with the corn free diet and another part of me thinks a lot of this might be just plain stress. I don't know. My gut tells me that he would have never had such a great recovery on the GF CF SF diet if he was truly reactive to corn and it was still being provided regularly. Unless you have gotten more relaxed in the snack department then you were in the beginning. Also, I don't know how severe his results were for corn. My son had 17 allergies, many of them mild and moderate. He can eat all of them in moderation now without ticcing episodes, allergy shiners, or any other issues. But the corn and wheat are an absolute NEVER.

 

If you really suspect corn it is not easy to eliminate and you have to do it right to get results. I was on a learning curve in the beginning and so my son's recovery was rocky at first, until I got a handle on things and learned all the hidden forms of corn. Jenny Connors http://www.cornallergens.com/ website is fantastic. You could also look at my thread on starting a GF MF diet (I use the term 'maize free' instead of 'corn free' so as not to confuse corn with casein and because in Europe and Australia it is often referred to as maize.) http://healthy-family.org/category/nutriti...on-a-gf-mf-diet

 

Having said all this, my gut still thinks a big part of this is stress. Moving is a major thing for all of you, and moving across the country is HUGE for a little kid. My son was a mess when he started kindy. On the first day his teacher accidentally gave him two freeze pops (loaded with artificial colors and high fructose corn syrup). The poor kid blinked non-stop for nearly two weeks after that. He had a major lack of sleep and tons of beginner's anxiety about school. I can't imagine what he would have been like if we plucked him out of his life and moved to another part of the country. I think in time when he feels more secure and starts to bond with kids his age things will naturally subside.

 

If you think your son suffers from allergy-related tics your best course of action is to treat for high histamine and watch the diet as you have. I will give my son Benadryl (dye free capsules) when he has had an exposure and I also give him methionine every day. This has been very helpful. BTW, the Benadryl dye free has sorbitol, which is a corn-derived sweetener. My son seems to tolerate it just fine but some highly allergic folks can't even tolerate the Benadryl. The liquid version has glycerin which is corn derived and will cause a reaction in my son.

 

Finally, about salycilates-- We originally avoided them for Feingold. At one point I did notice him reacting to them. I read up on that and learned that high doses of B6 can lead to a salycilate sensitivity. We reduced the B6 intake and the sensitivity resided again.

[Betty04]

I am just desperate and never cut out corn despite him testing posititve on the IgG testing. I thought maybe also salicytates might be a problem but we have always been on an organic, nothing artificial diet. Any advice on how long I might need to wait to see if he benefits from no corn or no salicytates?

 

In our case the wheat and corn allergy were in the 'red' zone, which means our son was highly allergic to them. We also have not seen a major issue with yeast (although we tested after having him on a candida cleanse diet for four months w/o proper testing, so who knows?)

I am not sure how severe the corn intolerance is in your case, but I will tell you that I saw an improvement within 24 hours on the corn. He was a daily bed wetter and the first thing that resolved when we eliminated the corn completely was the elimination of the bed wetting problem. Even now if he gets just the slightest exposure I can be guaranteed that he will wet that night. It is weird.

Corn intolerant folks all complain of similar symptoms. I just wonder if you see any of these: irritability, tiredness, dark shiners under the eyes, inability to concentrate-- sort of brain fogginess. To me the symptoms seem similar to the gluten intolerant folks. I see in my son a sort of opiate effect. When he initially ingests it he gets hyper and silly happy, sort of 'drunk' and then when he comes down off of it he gets very moody, irritable and suffers a sort of 'hang-over' effect. It was a pretty consistent pattern with him, back then when I was still learning which foods were okay and which ones had hidden corn. Now when I introduce a new food to him even his teacher will recognize when he has gotten 'corned' by accident. 99% of the time when I call the manufacturer and really dig I will discover a corn connection. (Like the recent discovery with the EnviroKids gluten free rice crispy treats.)

 

Part of me thinks you should experiment with the corn free diet and another part of me thinks a lot of this might be just plain stress. I don't know. My gut tells me that he would have never had such a great recovery on the GF CF SF diet if he was truly reactive to corn and it was still being provided regularly. Unless you have gotten more relaxed in the snack department then you were in the beginning. Also, I don't know how severe his results were for corn. My son had 17 allergies, many of them mild and moderate. He can eat all of them in moderation now without ticcing episodes, allergy shiners, or any other issues. But the corn and wheat are an absolute NEVER.

 

If you really suspect corn it is not easy to eliminate and you have to do it right to get results. I was on a learning curve in the beginning and so my son's recovery was rocky at first, until I got a handle on things and learned all the hidden forms of corn. Jenny Connors http://www.cornallergens.com/ website is fantastic. You could also look at my thread on starting a GF MF diet (I use the term 'maize free' instead of 'corn free' so as not to confuse corn with casein and because in Europe and Australia it is often referred to as maize.) http://healthy-family.org/category/nutriti...on-a-gf-mf-diet

 

Having said all this, my gut still thinks a big part of this is stress. Moving is a major thing for all of you, and moving across the country is HUGE for a little kid. My son was a mess when he started kindy. On the first day his teacher accidentally gave him two freeze pops (loaded with artificial colors and high fructose corn syrup). The poor kid blinked non-stop for nearly two weeks after that. He had a major lack of sleep and tons of beginner's anxiety about school. I can't imagine what he would have been like if we plucked him out of his life and moved to another part of the country. I think in time when he feels more secure and starts to bond with kids his age things will naturally subside.

 

If you think your son suffers from allergy-related tics your best course of action is to treat for high histamine and watch the diet as you have. I will give my son Benadryl (dye free capsules) when he has had an exposure and I also give him methionine every day. This has been very helpful. BTW, the Benadryl dye free has sorbitol, which is a corn-derived sweetener. My son seems to tolerate it just fine but some highly allergic folks can't even tolerate the Benadryl. The liquid version has glycerin which is corn derived and will cause a reaction in my son.

 

Finally, about salycilates-- We originally avoided them for Feingold. At one point I did notice him reacting to them. I read up on that and learned that high doses of B6 can lead to a salycilate sensitivity. We reduced the B6 intake and the sensitivity resided again.

 

Thank you so much for your helpful feedback! Eliminating corn from your diet makes gluten-free look easy... and that's no small feat! Sweetners with corn are everywhere. I am not sure cornis even an issue, its just that we have come with far restricting his diet so why not try this to see if it helps. Honestly if I don't see an improvement I am thinking of adding back in some dairy and trying a strict Feingold for a couple of weeks. I also believe that a large part of the problem is stress and I am almost fighting a losing battle until he settles in. But I can't help but want to reduce any additional stressors on his immune system that might be contributing to his tics... I like the bucket theory explanation! One last question, I did have my son on 60mg of P-5-P, a high dose for his age. Do you have any info on the link between B6 and salicylates? Thanks again for all your time!

[Caryn]

Sure,

 

Check out Dana's view to learn about phenol sensitivities (also called salicylates) and the B6/ P5P connection

 

http://www.danasview.net/phenol.htm

High doses of vitamin B6 and phenol

 

Here is information about mega doses of Vitamin B6 and/or P5P, found in a few vitamin supplements, which can aggravate the PST problem of some children [make it even more difficult for the child to process phenols], so if you are supplementing with mega doses of B6 and/or P5P, you can consider reducing the dosage to see if your child's phenol difficulty is improved.

 

Also read about methylation from enzyme stuff:

 

http://www.enzymestuff.com/methylation.htm

Q: What test checks histamine levels?

A: There is a blood test to measure histamine. Your pediatrician can do it.

 

Q: How can I lower the histamine level, and the results of a histamine reaction?

A: Some people who have trouble converting sulfur to sulfate (PST issue), and who have a sensitivity to certain foods and chemicals because of this, often times develop a high histamine level. My son develops a runny nose as a reaction to this problem. Benadryl helps my son with this, and anything else that lowers histamine would help him, also. I think the Feingold Diet, No-Fenol, or avoiding certain phenolic and high salicylate foods may help the sulfation problem and subsequently lower the high histamine level. Benadryl and Pepcid AC are histamine blockers. This might explain why Pepcid AC is so effective on some kids. A few parents have reported that a histamine reaction with certain foods did not happen when No-Fenol was given with those foods. MSM or Epsom salts also supply sulfur to the system and may be helpful. Some people cannot convert the sulfur in MSM to the needed sulfate form although other people can. Epsom salts supply sulfur in the sulfate form directly. Taking MSM or Epsom salts may alleviate a histamine reaction.

 

Q: What amount of B6 is considered "high"?

A: From the site http://www.methylmagic.com/faq.html

Some supplements have lots of B6 (e.g. 100mg) and the author usually aims for between 20 and 50mg per day of B6. Excess niacin (B3) is metabolized by methylation and thus uses up methyl groups. Also aim for 50 mg or less. These values are likely for an adult so a child needs much less.

 

Caryn

 

We do not give high doses of B6 at all anymore and have found that in our son's case it is not necessary as long has he is on the diet. We do treat him for high histamine and are careful with histamine creating foods.