[diamondheart]

I've been trying a treatment my acupuncturist (Dr. F) does to try to clear food allergies. I thought some of you might be interested in what I'm doing and how it has been going.

I have been doing a treatment called BioSET. It was started by a woman in California. I've provided a link to her website, but I can't say I found the website particularly useful. Also, I'm not going to be able to tell you how it works, because I really don't know.

A little background on my story: I had developed quite a few food intolerances, including gluten, dairy, corn, soy, quinoa, nuts and seeds. To me, this seemed ridiculous to have to cut out so many foods. I started seeing Dr. F because of his article on leaky gut syndrome. There was no question I had leaky gut syndrome. The challenge was to find a doctor who could treat it.

When I first saw Dr. F, we did stool testing to see if I was harboring any unwanted hitchhikers. I was diagnosed with bacterial dysbiosis and low SIgA. Dr. F said my SIgA was probably low because I was fighting off the bad bacteria for a long time. After we went through the first round of treatment for the bacterial dysbiosis, I asked him how I could start eating more foods again. He said he could try this BioSET treatment to clear my food allergies. He told me it's about 60% effective, but I was a good candidate since my digestive enzymes on tests were normal. Since all I had to lose was money, I decided to try it.

The "easy" foods were cleared first, and the more difficult ones, like dairy and gluten, were dealt with last. Dr. F does his measurements with a machine that tests the eletrical current of the food and it somehow measures if it agrees with you or not. Remember, I said I didn't know much about how this works. I think I saw him about 8-10 times for clearings. First, things like metals and phenols were cleared. Phenols are in a lot of foods, particularly aromatic foods, so they are impossible to completely avoid. It took two sessions to clear the phenols. Then we cleared the eggs, nuts, soy, and corn. Every time I was cleared for a food, I thought, I can really eat this again? The clearing involved acupuncture while I was holding on to the offending substance.

Dr. F told me I might have one core allergy that he won't be able to clear. He said usually these are either dairy or gluten. I thought it would be gluten and he thought it would be dairy. I was right, sort of. Dairy cleared in one appointment. Dr. F would clear me in one appointment and then I would have to wait until the next appointment to see if it "held" before I could eat the food again.

Right about this time, the bacterial dysbiosis seemed to come back, so I went back on the herbs to treat it. The gluten did not clear after two sessions, so we stopped the BioSET treatments and decided to just focus on healing my intestines. I figured that I was going to have to give up gluten for life.

At my last appointment, which was Wednesday, Dr. F was checking the foods again to make sure they were ok. Eggs, ok. Dairy, ok. Wheat, ok. What? How did that happen? Dr. F explained that as my intestines are healing, the food intolerances should go away. I was shocked. I really wasn't ready for this.

It's been two months since I have been doing this treatment intensively. While I have tested (i.e.eaten) all the foods I have been cleared for, except for gluten, I'm still not eating all of them. I went back to eggs because I never gave them up in the first place. I've also added some soy and some nuts back in. However, I'm still having digestive problems, but after thinking long and hard about this and keeping a diary of my symptoms and meals, I think the root of my problems right now is the bacterial dysbiosis. I seem to have problems no matter what I eat. I think it has more to do with the amount of carbs I eat, and those feeding my "pets". My goals right now are to focus on healing the bacterial dysbiosis and healing my intestines by taking the herbs prescribed to me, cutting out sugar, lowering my carb intake, adding probiotics in food form (in addition to the supplements I'm taking) such as yogurt and sauerkraut, and limiting processed foods (kinda sounds like SCD?!).

I also have not ruled out a IgA deficiency as a potential root to my digestive problems. I'm not sure how that would change anything I'm doing right now, so I'm not pursuing that at this point.

I also think I'll never consume much gluten even if I have the option. When I feel that my intestines are healed enough to try it, I'm sure I will, but I think I'm several months away from that. As my friend says, I'll cross that bridge when it's burning .

I know there were other people here interested in this treatment, especially for kids. Dr. F told me he just cleared his son for dairy, and he's eating pizza again. I don't think he could have dairy for years. Dr. F just kept treating him, and he was successful! So, the intestines do heal eventually. He thought that in the case of his son, that the MMR vaccine was the problem. According to Dr. F, it's thought that the measels portion of the vaccine causes the virus to go into the intestines. I suppose this is how the intestinal damage happens. Luckily, I didn't show any problems with vaccines when Dr. F tested me.

Hope this information is useful to some of you out there. Feel free to PM me!

Claire

[jennyj]

Thanks for all of the info Claire! I am beginning to think that leaky gut may be the root issue for me too. I have had multiple sclerosis since 1993 and had to take NSAIDS for 6 years straight to help with side effects of a shot I took once a week. Tylenol didn't help me. Of course, when I took the Advil, I took it on an empty stomach because the side effects would come on in the middle of the night. I would always take 2 pills at least 2-4 times in a 24 hour period.

I always had a "nervous" stomach when I was younger if I got stressed out, but could pretty much eat anything back then. Starting the latter half of my treatment for M.S., I had horrible intestinal problems, and it got progressively worse until I started eliminating problem foods including gluten and dairy.

I'm definitely going to check more into the whole leaky gut thing...

[JudyLV]

HI Jenny,

I never really thought about all the Advil I took for the Avonex side effects. I used to have to take 2 every 4-6 hours for at least 36 hours each week. The side effects were the reason I decided, with support from my neurologist, to take a break from Avonex. I'm sure the Advil was not good for me.

--Judy

[diamondheart]

Oh yeah, I forgot to mention the NASID connection. I took large quantities of ibuprofen last summer after my surgery. I thought I was taking something more benign than the heavy duty pain killers. I always took it with a little bit of food, but I think it really damaged my intestines. My digestive problems got worse after my surgery, so this is one clue that the ibuprofen was part of the problem. I was clueless until I read Dr. F's paper that I linked in my post above about leaky gut syndrome.

I also took large quantities of ibuprofen after each major back muscle spasm I had, and I've had about 3 in the last 10 years. I had heard once about a local beekeeper who became sensitive to bee stings after taking ibuprofen. If I'd known then what I know now about ibuprofen and leaky gut, I probably wouldn't have taken so much or been much more careful taking it with food.

Gosh, I'd forgotten all about that until now. I first started having problems with gluten after that one really bad muscle spasm in my back nine years ago. Light bulbs are going off in my head !

Claire

[KimS]

Hi Claire,

I really hope it works for you.

For children, I would not suggest taking the risk though. They have too much brain/body development at risk if it's 'not really' worked. You've got a better guarantee just to stick to a diet that does not offend their system and then let them decide whether to poison () themselves when they're adults.

That being said, I would seriously consider it for them... not to allow them to ingest the foods purposely but to (hopefully) protect them from contamination in the more severe cases (like my son who had/has trouble even sitting at a desk that looks clean but apparently still has gluten on it from another child's snacktime treat).

Although, with everything still going on with you... it doesn't sound like it's working all that well.

I look forward (hopefully) to some better outcomes for you after this treatment.

[rachelb]

Colin and I did about a year of NMT treatments. They did relieve some of our other sensitivities a bit--not completely. And I feel the same--no way I am deliberately exposing either C or myself to gluten because it's not worth the risk and we don't *need* to eat gluten anyway.

Our smell sensitivities have lessened a lot, and that is great. I can go shopping now without massive headaches and getting really cranky. IMO, that itself made the treatments worthwhile.

We also can both tolerate some corn syrup now, when neither of us could tolerate it before.

There's a few other things, too, that are much better. I still can't eat a lot of dairy (but don't need to) and as I said I have no intention of trying gluten.

Rachel

[diamondheart]

Originally Posted by KimS

Hi Claire,

I really hope it works for you.

For children, I would not suggest taking the risk though. They have too much brain/body development at risk if it's 'not really' worked. You've got a better guarantee just to stick to a diet that does not offend their system and then let them decide whether to poison () themselves when they're adults.

That being said, I would seriously consider it for them... not to allow them to ingest the foods purposely but to (hopefully) protect them from contamination in the more severe cases (like my son who had/has trouble even sitting at a desk that looks clean but apparently still has gluten on it from another child's snacktime treat).

Although, with everything still going on with you... it doesn't sound like it's working all that well.

I look forward (hopefully) to some better outcomes for you after this treatment.

I'm wondering why you suggest not doing this treatment on children? Is it your own personal experience? I really think it's not normal for people to not eat certain foods, unless you really have an autoimmune disease like celiac disease. I do not have the genes for celiac disease, so my gluten intolerance could have been caused by something besides genetics. As far as I know, the BioSET treatment is completely safe for children. I believe that the food itself is not bad (not talking about fake foods here), it's something that happens in our bodies that causes the immune system to react against foods. I just don't think this is normal and I'm more concerned about getting to the root of the problem than with living with multiple food intolerances. It's a very difficult thing to do to constantly worry about which food is causing a problem, and develop more and more intolerances.

I don't think I said that the treatment isn't working for me. I believe that leaky gut syndrome is a multi-faceted disease, and that is the way I am treating it. The BioSET treatment is just one piece of the picture. The fact that I did not test negatively for wheat after two months means my intestines are healing and how I react to the foods is changing. I just don't think I have killed off all the bad bacteria yet and my intestines are still healing from that. I think it takes a minimum of 4 to 7 months for the intestines to heal, and I don't think BioSET is a quick fix. I'm approaching this pragmatically and holistically. I developed these problems over many years, and it may take me that long to heal, but I believe the body does have that ability to heal.

Rachel, as far as I know, NMT is different than BioSET. Glad you had some positive results with it.

Claire

[jccgf]

Finally catching up on this thread...very interesting.

Claire, I agree with you in principal that for those without celiac disease, and for those who seem to be sensitive to everything... that removing all those foods for a life time my be a band aid approach to stop the symptoms without fixing the problem.

How to fix up the gut...seems to be the million $$ question, as well asking what we are doing to mess it up in the first place? Vaccines? NSAIDS? Antibiotics? Primary food offenders, like casein and gluten? All of the above?

These discussions always bring me back to consider something I've posted several times in the past...

"We've had many patients who were extremely sensitive to dairy and wheat.... and did marvelously after the CF/GF diet. Many of these same patients completely lost their sensitivity to casein and gluten after the antioxidant supplementation..... and now can eat a normal diet without a problem. (Aug 21, 2003) " [NOT Celiac Disease]

Oxidative Stress by William Walsh

I had a lot of testing done on my older daughter...the one with pyroluria, also a condition associated with oxidative stress, and she had low IgA, bacterial dysbiosis, etc. Of course, she is not willing to stick to the complicated regimens often set forth as part of treatment, but the point is... there is so much to explore.

I think its worth exploring and even trying some of these treatments so long as they are safe treatments. I have mixed feelings about 'experimenting' on children. Some things yes, other things, maybe not. I guess it somewhat depends upon whether what you are already doing is working, in which case...why mess with something that is working, and risk a relapse. Also depends upon whether you find a doctor you trust, to work with you.

In any case, I think for those who continue to struggle even with all the dietary changes in place, definitely need to keep searching.

Thanks for sharing your experience. I don't think I've known anyone whose tried this. Keep us posted on your progress.

Cara

[KimS]

Originally Posted by diamondheart

I'm wondering why you suggest not doing this treatment on children? Is it your own personal experience?
Claire

I didn't say not to do it. Actually I said I thought it was worth a try, esp. for contamination scenarios... but that I still wouldn't feel my child that food (meaning gluten or perhaps dairy, soy.... the biggies) ... just in case it didn't work as well as they thought... I would wait to try that food when they are finished growing... because I like to try to err on the side of caution with children.

And this is why I thought it wasn't working as well as you'd hoped... but understand that you are hoping that the results will improve with time. I also said that I hoped to hear of a postive outcome from this treatment in the future. It would be a great thing for everyone if it could work as even celiacs have food intolerances that are not part of being celiac but are part of an injured gut.

I have been doing a treatment called BioSET. It was started by a woman in California. I've provided a link to her website, but I can't say I found it particularly useful. Also, I'm not going to be able to tell you how it works, because I really don't know.

However, I'm still having digestive problems, but after thinking long and hard about this and keeping a diary of my symptoms and meals, I think the root of my problems right now is the bacterial dysbiosis. I seem to have problems no matter what I eat.

It certainly never hurts to heal faster and I fully support anyone's search for a method that works. We went the long route... two years of healing before adding back in the nightshade or lily families. It was quite doable but life sure would've been easier if we had been able to track down some help.

[rachelb]

Claire, yes BioSET and NMT are different for sure. I was just sharing another path that you or others might be interested in and agreeing with your assessment that even though we are supposedly OK for gluten, we aren't eating it.

I totally agree that leaky gut needs to be treated on many levels and when you're as sick as some of us have been there isn't likely to be a one size fits all answer. Gluten is a piece of the puzzle for us and many, and NMT was a piece of the puzzle for us. We're just starting some a probiotic regimen that will hopefully help even more. It's all a process and a path, IMO, never an end point.

Rachel