Gluten Intolerance

[CarlaB]

You know, it'd be just my luck that I'm a celiac who was bitten by a tick ...

There are others of you, too. Anyone can get Lyme Disease.

[Rachel--24]

You know, it'd be just my luck that I'm a celiac who was bitten by a tick ...

This is more common than most would ever imagine.

Its not uncommon to have more than one issue going on. Also, since Celiac requires a "trigger"...any type of stress on the body can trigger the genes. Thus many people with Lyme also have Celiac.

[Rachel--24]

Hi Rachel,

We were posting at the same time ..

BTW. Did either of you have problems with gluten as a child ?

I had no health problems until 5 years ago (at age 31).

I was healthy as a child and never had any problems with any foods. I was never sick and I had never experienced sensitivities to environmental allergens, chemicals or foods until 5 years ago. I got hit with it all at once.

All of my sensitivities/symptoms came on after some dental work. I was exposed to more mercury than my body was able to handle and all heck broke loose after that.

[CarlaB]

I didn't have a gluten problem as a child, though I did have some stomach issues, which run in my family. I'm not talking about anything major, just stomach aches. I was exposed to Lyme when I was 9.

Many of my stomach issues seem to have come from one of the tick-born infections (Bartonella) and from bacterial dysbiosis.

Anytime I had a Lyme flare-up of symptoms, stomach issues were always involved ... in fact, stomach issues always came first before other symptoms, which is why we thought it was celiac, especially when I had such improvement on the gluten-free diet.

I think part of it has to do with the Lyme bacteria attacking the weakest system the most ... with my family history of GI problems, it hit there first.

[marciab]

The reason I was asking about problems as a child is that I was wondering how many DQ2's or DQ8's have nuerological problems without digestive problems early on and if that's a clue that they should avoid gluten for life.

I believe my childhood nuerological problems were from gluten. And if we'd known that I was a DQ2 and I'd avoided gluten, it could have saved me from getting so sick back in 1990.

I'm sorry if you've discussed this somewhere and I missed it, but how do you know your gluten intolerance is from mercury or Lyme ?

[CarlaB]

I'm sorry if you've discussed this somewhere and I missed it, but how do you know your gluten intolerance is from mercury or Lyme ?

I actually had lead toxicity. I tested positive for it in a provoked urine test.

I also had a positive Lyme Western Blot.

I have been diagnosed with Lyme Disease, Babesiosis, Bartonella, heavy metal toxicity, and bacterial dysbiosis.

Once we were treating the Lyme and I chelated the lead, I realized I wasn't getting glutened anymore when we'd eat out. At home, the whole house was gluten-free.

As time went on, I wondered whether my gluten intolerance was caused by the Lyme and metals, but the only way to tell was with a gluten challenge. I thought back and realized any time I had been sick with the Lyme (which was misdiagnosed for over 30 years), I had GI problems. Any time I was not sick with the Lyme, I did not.

I was afraid to do a gluten challenge because I had been so sick prior to cutting out gluten (I am still very sick) and had been losing a lot of weight. Finally, after eating at a buffet, I decided it was a good time to challenge, after all, I was probably already glutened. So I did and no problems. That was back in July. In case you're curious, I ate a piece of angel food cake.

I have challenged several times since then and after a few months of it, I still have no problems. Sometimes I've eaten it a few days in a row. (Most things I've tried are not nearly as good as I remember, particularly pizza and anything with a bun).

I am still very sick with Lyme Disease, but the heavy metals have been chelated and I am getting better, slowly. My GI problems are almost completely resolved ... just some lingering diarrhea, but not related to eating gluten or not eating gluten. I was also diagnosed with bacterial dysbiosis that we are working on, which very well could be causing the lingering diarrhea.

The reason I wanted to test gluten to see if I was really intolerant was because Lyme was my primary health problem. Lyme can cause all kinds of sensitivities -- chemicals, EMF's, food, etc. -- so I thought that the Lyme might be causing my gluten intolerance. It appears that it was.

I just want to say at this point ... If someone reading this has celiac disease, you cannot eat gluten, so do not do what I did. I tested negative for celiac disease and did not have the celiac gene.

[Rachel--24]

I'm sorry if you've discussed this somewhere and I missed it, but how do you know your gluten intolerance is from mercury or Lyme ?

I cant say with 100% certainty that mercury is the cause of my gluten intolerance...but *something* certainly caused it.....prior to this event I had absolutely no problems with gluten.

Also I continued to have additional food intolerance and sensitivities after eliminating gluten which led me to believe there was much more to this then a gluten intolerance. I did not believe that the gluten intolerance was the cause of my problems....but intstead it was a symptom of something else that went wrong. Thats how I looked at it then and still to this day.

It didnt make sense to me that suddenly my body could no longer tolerate the foods I'd been eating all my life...and the Celiac tests (blood, biopsy and genes) were all negative.

Enterolab was positive but the stool test is not diagnositic. It told me I had a gluten intolerance but did not tell me *why*. Yes, I have leaky gut and yes, I'm reacting to gluten....but I wanted to know what had caused this to happen.

Not only was I dealing with the digestive issues but severe neurological symptoms as well. The digestive stuff was minimal in comparison....although I did have a 25 lb. weight loss and pretty bad malabsorption.

Everything I'm dealing with can be linked to mercury and I *did* become ill following my dental work. That was something that always stuck out in my mind. Now that I've been diagnosed and am under the care of some very knowledgable specialists....there is not much doubt as to what happened.

Besides the mercury...there are the infections that go along with it (yeast, parasites, etc.)....there is the leaky gut situation, there is enzyme dysfunction, etc. At this point all I know is that all of these things need to be treated...the mercury needs to be dealt with for any real healing to take place.

The DPPIV enzyme is required for digesting gluten and casein. This particular enzyme is highly sensitive to mercury and is easily blocked by mercury and other heavy metals. Other enzymes can also be blocked causing even more food intolerance. This might be the case for me....but at the same time I have gut infections and leaky gut....so its difficult to say what exactly is causing the gluten intolerance. It could be more than one factor involved.

The Dr.'s that I see are all specializing in treating Autism...alot of the issues are the same...the treatment is very similar. Being an adult, who had no issues for 3 decades....the liklihood that I will resume a "normal" diet is strong. The fact that I am not genetically susceptible to Celiac makes it a real possibility.

If mercury is behind the intolerance...and we are able to remove the mercury...enzyme function may be restored.

If yeast/leaky gut is behind the intolerance....getting rid of the mercury and treating gut infections should allow for the gut to heal.

Only time will tell but I know from other patients (and from what the Dr.'s have told me) that people do overcome their intolerances.

There is no evidence that my gluten intolerance is in any way related to Lyme...but for some people it is. My Lyme infection is not very active....and it is not in my digestive tract.

[marciab]

I'm happy to hear that you can eat gluten again ... albeit a tad jealous too ...

I was thinking that since you and Rachel (I don't know anyone else, but feel free to chime in) have had a lot of experience with gluten intolerance w / celiac, if you could tell others the kinds of things to look for that would cause gluten intolerance. And how you would proceed knowing what you know now. I remember when the OMG thread was started and this could save others a lot of time ..

Hope you feel better soon ... Marcia

Rachel,

We posted at the same time again. It appears that you and I are treating similiar problems.

But, I wasn't tested as I don't have a DAN doctor down here. Have you seen the research by Rich Von K on the GD-MCB (Glutatathione Depletion - Methylation Cycle Block ) ? He hypothesises that autistic kids and people with multiple immune dysfunctions (CFS) have blocked detoxification system.

[CarlaB]

The number one thing I would stress is that if you do not get 100% better on a gluten-free diet, then keep looking for what else is wrong. Be persistent with doctors and do your own research. If it were not for the internet I still would not be diagnosed.

Don't be jealous ... Lyme is no picnic. I would rather never have gluten again .... but it is nice not having to deal with both issues.

The first things I would look for is Lyme Disease, heavy metal toxicity, and bacterial dysbiosis. But do your research ... these are not health issues you can rely on just any old doctor to be able to diagnose.

[Matilda]

...

[CarlaB]

Matilda, you are right. There are no set rules here as gluten intolerance is not widely studied.

I am double DQ1 myself, so there was the chance that it was a permanent intolerance just as a DQ2 or 8 who tested negative for celiac disease may respond like I did.

There REALLY needs to be some research done on gluten intolerance.

Lyme is a lifelong struggle, too, so don't be jealous, and because of the treatment I can have no sugar, alcohol, caffeine, yeast, or simple carbs .... of course, I cheat once or twice per month .... except for alcohol and caffeine.

[marciab]

Copied in from -

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Journal of Neurology Neurosurgery and Psychiatry 2002;72:560-563

[Rachel--24]

I was thinking that since you and Rachel (I don't know anyone else, but feel free to chime in) have had a lot of experience with gluten intolerance w / celiac, if you could tell others the kinds of things to look for that would cause gluten intolerance. And how you would proceed knowing what you know now. I remember when the OMG thread was started and this could save others a lot of time ..

I would say the same thing as Carla...if the symptoms are not clearing up on a gluten-free diet...if there is only temporary improvement...or if there is a worsening of symptoms....look into other problems.

Of course it does take some time to really determine how the diet is working for you. I was gluten-free for a few months before I started acknowledging that this was not the complete answer for me. I could tell that my body wasnt responding as it should...if gluten were the only cause of my illness.

I did need to eliminate alot of other foods....actually MOST foods....but still...in my mind this did not seem normal. It didnt feel right for me to have to restrict so many things just to be able to function.

Research, research, research!!

The answers are out there...but we have to be proactive because the medical community is not acknowledging these issues.

Mercury toxicity is very difficult to determine. Provoked urine tests are the best way to test for it.....however, its not always showing up. This is especially true for the autistic kids or in those who are not excreting well due to blocks in the pathway function. Many times its the ones who are most toxic that are having the lowest levels of mercury show up. It doesnt mean that mercury isnt the problem...it means the body isnt able to excrete it.

Also....mercury causes intracellular issues....it causes all kinds of disturbances in the body which are not identified in any kind of testing. All we know is that things arent working right...we do not feel good...yet standard tests reveal nothing abnormal.

Lyme works very much in the same way.

Both are difficult to diagnose.

You cannot get help with these issues seeing conventional Dr.'s.

Although two of my current Dr.'s are MD's.....they are outside of the mainstream and they are specializing in conditions such as chronic illness, autism, Lyme Disease and heavy metal toxicity.

The two *key* points I always try to make are the importance of educating yourself and finding the right Dr.'s who specialize in the problems you're dealing with. If the mainstream Dr.'s arent coming up with the answers....its because they dont HAVE the answers.

From what I have learned I would say that heavy metals and infections would be the main reasons for gluten intolerance w/out Celiac. Some might say that its leaky gut...but generally there is something causing the gut to become leaky in the first place. Most of us were not born with these issues....although obviously times are changing as far as that goes.

Also...all of these things cant be looked at as seperate issues...because they really arent. Our bodies are very complex and problems tend to pile up over time. It may start with mercury from fillings...which might overtime impair a persons ability to detoxify...as a result they begin to accumulate more and more toxins.

The immune system is affected by the toxic burden...as are the elimination organs. Infections are also an inevitable consequence of a toxic body...and THEY produce toxins as well. So...its really a cascade of events that occurs and gluten intolerance can be only one piece of the puzzle. All body systems can become affected and even though we would feel some relief by removing gluten...under these circumstances the relief would only be temporary.

If symptoms persist....if there are additional food intolerances, chemical sensitivities, brainfog, fatigue, depression, thyroid imbalances, etc....there are probably underlying issues that have yet to be identified.

[Rachel--24]

We posted at the same time again. It appears that you and I are treating similiar problems.

But, I wasn't tested as I don't have a DAN doctor down here. Have you seen the research by Rich Von K on the GD-MCB (Glutatathione Depletion - Methylation Cycle Block ) ? He hypothesises that autistic kids and people with multiple immune dysfunctions (CFS) have blocked detoxing system.

I have seen this research and YES...its true that the autistic children, people such as myself...as well as those diagnosed with CFS or Fibromyalgia often do have blocked detox systems. If there were no problems detoxing...there would be no illness.

Impaired detoxification is a common factor in chronic illness.

The real question is *why*???? Why is there such an increase in ASD's (autism spectrum disorders), CFS, Fibro, etc.??

It is known that mercury can totally block the methylation cycle. It can disrupt all pathways and severely impair a persons ability to detoxify.

It is also known that Lyme can impair detoxification.

Toxins deplete glutathione....heavy metals and chronic infections (such as Lyme) can reduce glutathione to the point that the body does not have the ability to detoxify efficiently.

Its the toxins which end up causing the symptoms of chronic illness....the toxins are not able to leave the body and we become sick.

Dr.'s who are testing the autistic kids for Lyme have reported that up to 90% are positive for Lyme Disease. The majority of these kids have Lyme...most of them were born with it. They also have heavy metals as well as other infections.

The same thing goes for adults with CFS or Fibro....up to 90% test positive for Lyme...and they have heavy metal issues as well.

All of my Dr.'s have stated that these things go hand-in-hand. The people that have Lyme...will also have toxic levels of heavy metals. Likewise, those who have heavy metal toxicity....very often have Lyme. Most of these people also have additional infections and especially problems with yeast and molds.

Food intolerance is pretty much a given. My Dr.'s dont actually test for a gluten intolerance....I was told by every Dr. to avoid gluten, cow dairy, sugar and alcohol.

So I cannot say with 100% certainty that mercury was the cause for *everything* that went wrong with me. It certainly was the thing that tipped the scales but there were things building up long before my fateful dentist appt.

I dont know how much my Lyme infection may have contributed to my inability to detox mercury. I was exposed to alot of mercury in a short time...so that in itself may have been enough to cause a block in the pathway function. There is just no way to determine what came first.

I am currently being treated for everything but the priority is to get the mercury out. If that problem isnt addressed....none of the other treatments will be successful.

[marciab]

Great discussion ... We've learned a lot over the last few years.

While I respect Rich's work on the GD-MCB, I was wondering if many of us actually have an overloaded detoxification system as opposed to a blocked detoxification system. And maybe this is just semantics too. I do question his use of supplements to unblock the detoxification system as opposed to simply removing the toxins we eat first to see if it helps. This just seems safer to me and it's working for me so far.

IMHO Detoxing may be the key here though. I believe that once the body gets overwhelmed with toxins, whether it's all one toxin or several, it only takes one more to trigger an illness. This explains why there are so many holistic "cures" and "causes" for illnesses including CFS, Fibro, etc. Some people only have to eliminate mold, so they believe mold is the answer. Others believe that it's candida, because it cured them. And for a long time, I believed that everyone just needed to eliminate gluten or certain foods, but that's not been the case for me.

It's interesting that doctors are telling people with Lyme, mercury toxicity, etc to avoid gluten, cow dairy, sugar and alcohol. I realize these are toxic to some, but most people can handle these. Do you think these doctors are just hitting all the bases so to speak ? Have either of you been told to do a general detox ?

I'm not sure if detoxing in the manner most natural doctors recommend is a good idea. Treatments like chelation, colon cleansing, etc. It just seems to be too harsh. It makes an interesting marketing tool though. But, I really don't know enough about these and I may change my mind and try this as time goes on.

I would detox slowly using mild herbs, like cilantro and raw garlic, vitamin C, green tea, etc. IMHO Our bodies are already in a fragile state, no reason to tax our livers, hearts, etc with any drastic treatments.

Sooo, does this mean that the alcoholic who eats gluten, etc and detoxifies will out live us all ??

[CarlaB]

Marcia, you bring up good points (so has Rachel).

My doctor is not mainstream. No doctor treating Lyme with long-term abx is mainstream as it's not an accepted protocol. Oddly enough, my doctor is a holistic oriented MD and uses abx for Lyme treatment.

I am on a TON of supplements. I take Cholestyramine as a binder to eliminate toxins. I take everything from Juice Plus to mushrooms, to probiotics, to minerals/vitamins/essential fatty acids. I drink undenatured whey protein twice daily as it supplies what's needed to produce glutathione.

I do a daily coffee enema (yes, I was desperate when I tried it the first time, LOL, and not because of constipation but because of a toxic feeling). The coffee enema helps the liver to detox. For years it was in the Merck manual for use in cancer patients.

I also take a daily FIR sauna.

I was toxic in lead. I had my amalgams removed back in 1991 by a biological dentist and did the detox protocols, so my mercury, though there, was low. I chelated with EDTA suppositories and am getting ready to do another provoked urine test to see if it took care of it.

I think there are just a lot of toxins in dairy and gluten, so that's why it's good to cut them out. I also think they put unneeded stress on the digestive system because they are hard to digest ... just my opinion on that one. I did not cut out dairy because it was a signiicant source of calories for me and I still struggle with keeping my weight up.

I agree though with your perspective on gentle herbs. I was in a more severe state so needed more than that ... I was mostly bedridden with fatigue/pain/etc.

I do have my liver enzymes tested monthly.

I think sugar is bad for everyone. It not only does not supply nutrients, it takes away nutrients just to digest it. I have a bowl of ice cream once per month ... the more months that go by, the less I can eat because it's so sweet! I am now noticing how sweet other foods are! Before that was disguised by my sugar consumption.

Alcohol wreaks havoc on Lyme patients. Most of us become so ill from drinking even a little that we wouldn't dream of drinking it. In fact, that is a BIG symptom of Lyme Disease. One of the top Lyme specialists says that alcohol consumption is in the top three reasons that Lyme patients don't get better.

I guess this is the long answer, but I think detox is critical. Sometimes it's not enough though. Some of us eventually have to address the bacteria, metals, or whatever is making us ill.

I was into eating right, detoxing, supplementing, etc. for years before I got sick with Lyme ... from 1991-2003 I was healthy after having had three severe flare ups of Lyme Disease 1982-1991. Stress has always been my trigger. Stress reduction is critical in healing/detoxing. In 2003 we had a severe stress in our life for a long time ... it got me sick, but I already had the bacteria and some symptoms that I had just gotten used to living with, so the stress just made it so I couldn't live with it any longer.

Our immune systems are designed to fight bacteria ... but sometimes they need help ... so detox is important, but not always enough.

[Rachel--24]

IMHO Detoxing may be the key here though. I believe that once the body gets overwhelmed with toxins, whether it's all one toxin or several, it only takes one more to trigger an illness.

Detoxification *is* the key. These illnesses would not occur if the body were not overwhelmed with toxins. My entire treatment program is based on detoxification...thats what it takes to become well.

Allergies and symptoms of chronic illness are a result of a toxic overload.

The toxins accumulate....its never just one toxin that is making someone sick. Also, wherever the body is storing toxins there are also going to be some "bugs" hanging out in those areas. This adds to the toxic burden and furthur weakens the immune system.

It might be one thing that pushes someone over the edge....but prior to becoming symptomatic we are already very near the threshold.

Studies were done in which they took random healthy people off the street to be tested for a long list of toxins. The only requirement was that you had to be in good health....meaning no obvious symptoms.

They tested tissue, blood, urine, etc....and found that EVERY person was carrying loads of toxins. All of the toxins were found and in LARGE amounts.

These people were all free of symptoms... their immune system's were still able to cope with it all.

As you stated....it only takes one more thing to push someone over the top. The autistic children and those who are chronically ill have reached the limit and the immune system is no longer "handling it"....the immune system is struggling with the burden when symptoms are chronic.

Detoxification is the only answer as far as bringing balance back to the body.

It's interesting that doctors are telling people with Lyme, mercury toxicity, etc to avoid gluten, cow dairy, sugar and alcohol. I realize these are toxic to some, but most people can handle these. Do you think these doctors are just hitting all the bases so to speak ? Have either of you been told to do a general detox ?

Most people who are chronically ill are not handling these foods well at all. The Dr.'s arent suggesting the diet to cover all the bases....they are wanting to remove any obvious stressors on the immune system. These foods are all problematic for people who are already dealing with a toxic overload and immune dysfunction.

To help reduce stress on the immune system its best to not consume the foods that are difficult to digest and highly allergenic. Many people with Lyme...and especially those with heavy metal issues will be reacting to these foods....even if the symptoms arent obvious to them.

Sugar feeds the infections and weakens the immune system....so thats why sugar is not recommended when trying to fight off infections and when trying to detox.

Alcohol puts a huge burden on the liver.....which is already severely taxed when people have Lyme and mercury issues. Yeast issues also put a tremendous burden on the liver. Most people are avoiding alcohol long before the Dr. is telling them to....this is because its not worth several days of feeling hungover....for just *one* drink.

I'm not sure if detoxing in the manner most natural doctors recommend is a good idea. Treatments like chelation, colon cleansing, etc. It just seems to be too harsh. It makes an interesting marketing tool though. But, I really don't know enough about these and I may change my mind and try this as time goes on.

I would detox slowly using mild herbs, like cilantro and raw garlic, vitamin C, green tea, etc. IMHO Our bodies are already in a fragile state, no reason to tax our livers, hearts, etc with any drastic treatments.

Depending on where your health is and what toxins you are dealing with....some people do need chelation and other stronger methods of detox to become well.

Heavy metal detoxification is not something that should ever be done without being under the care of an experienced and knowledgeable Dr.

It can be very harsh and unsafe if done incorrectly and not by an experienced Dr. If done correctly things can go smoothly. It all depends on the Dr.'s knowledge...unfortunately there are not alot of Dr.'s qualified to do this kind of treatment.

My Dr.'s have worked with me for one full year before even attempting any kind of chelation. There was alot of preparation...bringing down some of the infections, removing stressors (other foods were identified as probelmatic for me), supplementation to help my immune system and my elimination organs. I had to get to the point where I could tolerate the suuplements necessary to support detoxification of heavy metals.

Some Dr.'s might just jump into something like chelation without preparing the body for it....that can cuase some serious problems if the person is not able to excrete any of the metals.

I would never attempt to detox on my own..not even with the herbs. Cilantro is actually a very powerful chelator of mercury....it also crosses the blood brain barrier. If someone is mercury toxic and consuming alot of cilantro without being on a full detox program...it can be just as dangerous as any other chelator.

Personally, I dont think of chelation as a marketing tool. I think of it as a very necessary treatment....without it I do not think I would be able to regain my health. Mercury does not easily leave the body...especially the central nervous system...it has a half-life of 30 years. I definately need help to get it out if I want to become well.

Sooo, does this mean that the alcoholic who eats gluten, etc and detoxifies will out live us all ??

Some people are more susceptible to certain toxins. There are genotypes that are more susceptible to mold toxins....there are also those who are more susceptible to Lyme toxins. Some people are just better at detoxifying than others....genetics has alot to do with how well our bodies handle the load.

So yes...I'm sure there are penty of alcoholics who are eating gluten, smoking cigarettes, lots of junk food, amalgam fillings, etc....who are doing ALOT better than I am as far as detoxing.

I guess the way I look at it is that the toxic load *has* to be lightened....and in order to do this some type of detoxification has to take place.

If you have mercury at the root of your problems.....it will help (to some extent) to eliminate alot of foods, eat organic, treat candida, treat other known infections, etc...but ultimately if you do not do something about the mercury....the other problems will not disappear. The infections will keep coming back...more food intolerances will keep popping up...etc. etc.