Celiac Testing

[home-based-mom]

Its not a pipe dream! There IS a test like this and it has saved me alot of time, money and suffering.

Its an alternative method of testing called "Autonomic Response Testing" (ART).

That sounds great! Looking forward to the day when that is where doctors *start* looking rather than what gets done as a last resort!

[fedora]

Liz,

sorry to be confusing.I only have two genes. Here is what my enterolab gene result says:

HLA-DQB1 Molecular analysis, Allele 1 0202

HLA-DQB1 Molecular analysis, Allele 2 0501

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,5)

My DQ2 gene is DQ2(subtype 2).Also known as DQ2.2. It has been proven to cause genetic gluten intolerance in people, but rarely reaches the threshold of celiac villi damage.

The full celiac gene is DQ2(subtype 1). Also known as DQ2.5

It is written as HLA-DQB1 Molecular analysis, Allele 1 0201

The thing is serologically the two DQ2 genes look the same. The are both written as DQ2,2

But molecularly there is a difference.

When people say that a third of the population have the DQ2 gene, that includes both DQ2.2 and DQ2.5

But the vast majority of celiacs have DQ2.5

Rachel,

I agree with you completely that there are things that cause gluten intolerance other than celiac genes. I am glad you were finally able to figure out the cause of your problems. I am sorry it took years. I know an boy with autism that made huge leaps while on a gluten and casein free diet. But I do believe some people may have a genetic element to gluten intolance without villi damage(DQ 5 has been researched heavily). The difference between the celiac gene DQ2.5 and the non celiac gene DQ2.2 is threshold. There is a reaction to gluten, but not usually high enough to cause villi destuction. DQ7 also.

As you said, I did not get the blood test or biopsy(I am horrified of medical procedures and break out into a cold sweat just getting blood drawn). My intuition says if I did not have full blown celiac I was on my way eventually. Yet I don't know. So much research says my chances of having celiac are only 0.04% That is very small. You are right that many make the assumption of celiac without knowing. I don't, but I chose to be on the cautious side and avoid it completely. My grandmother had lymphoma and my other grandmother has melanoma. My family is full of symptoms. If I had not gotten so much better I would look for a possible cause other than celiac, just like you. I am still dealing with fatigue. And I just got diagnosed with a genetic joint issue in my spine(yuck, trust me it sucks).

Hope you continue to heal.

[Lizz7711]

Hi Fedora,

Thanks for this info. Can you please help me then to interpret my genes? This is what I had:

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0601

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,6)

From what you wrote this looks like I have 2.5, right? I didn't have a biopsy but I did have positive blood test for IgA and IgG (tTg wasn't done unfortunately). No malabsorption.

thanks!

Liz,

sorry to be confusing.I only have two genes. Here is what my enterolab gene result says:

HLA-DQB1 Molecular analysis, Allele 1 0202

HLA-DQB1 Molecular analysis, Allele 2 0501

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,5)

My DQ2 gene is DQ2(subtype 2).Also known as DQ2.2. It has been proven to cause genetic gluten intolerance in people, but rarely reaches the threshold of celiac villi damage.

The full celiac gene is DQ2(subtype 1). Also known as DQ2.5

It is written as HLA-DQB1 Molecular analysis, Allele 1 0201

The thing is serologically the two DQ2 genes look the same. The are both written as DQ2,2

But molecularly there is a difference.

When people say that a third of the population have the DQ2 gene, that includes both DQ2.2 and DQ2.5

But the vast majority of celiacs have DQ2.5

[fedora]

HI Liz,

your HLA-DQB1 Molecular analysis, Allele 1 0201 is the celiac gene DQ2.5(commonly known as DQ2)

HLA-DQB1 Molecular analysis, Allele 2 0601 is a DQ1(subtype 6) gene also known as DQ6

My daughter has this gene, but I don't know much about it.

Your daughter has the other half celiac gene DQ7(DQ3 subtype 7)

So you have positive blood tests and the celiac gene. Seems like you do have celiac disease.

I spent a lot of time studying the genes because I was confused by mine.

Happy healing

[Lizz7711]

thanks for the clarification. What does it mean to have a "half celiac gene"? She never had blood tests, but seems to definitely have a leaky gut and reacts to many different foods and chemicals.

HI Liz,

your HLA-DQB1 Molecular analysis, Allele 1 0201 is the celiac gene DQ2.5(commonly known as DQ2)

HLA-DQB1 Molecular analysis, Allele 2 0601 is a DQ1(subtype 6) gene also known as DQ6

My daughter has this gene, but I don't know much about it.

Your daughter has the other half celiac gene DQ7(DQ3 subtype 7)

So you have positive blood tests and the celiac gene. Seems like you do have celiac disease.

I spent a lot of time studying the genes because I was confused by mine.

Happy healing

[fedora]

The genes are seperated into an alpha part and a beta part.

The DQ2.2 gene I have is half of the celiac DQ2.5 gene because it has the identical beta part as the DQ2.5 gene

There are actually several kinds of DQ7 genes. Of these some of them have an identical alpha part as the DQ2.5 celiac gene.

So the DQ2.2 gene and the correct DQ7 gene can form a complete celiac gene if both are present in a person.

Individually they are half the celiac gene. Though cases of celiac have been found in people with only DQ2.2 or DQ7 without DQ2.5 or DQ8 present. It is rare though.

Let me know if this is confusing. www.mlo-online.com/articles/0106/0106cover_story.pdf

This was very helpful to me. It is weird because I have half the gene which has been proven to cause gluten intolerance.

I am sorry about your daughter. Mine has just gone off gluten again. I hope it helps her out. I was reacting to things very sensitively for a couple months after going off gluten, but am better now. To you have any idea why she would have a leaky gut? I am sensitive to some chemicals too, but they don't make me get sick, just yucky. We were on a bus this weekend. I already felt quessy(spelling?) from fair food(gluten free just lots of beans) and someone got on with too much lavender on. It bothered my husband too.

[Rachel--24]

I was ready to get a shrink for her because of her extremely angry, rage-like, behaviors...she also exhibited some autistic-like behaviors in those episodes such as repeating phrases over and over again for literally 45 minutes non-stop. It was terrible and I had family members saying "it's not food Liz"....they were wrong. She's a new kid now, and she knows and can tell the difference now when she has gluten or food dyes and goes off the deep end.

After I got sick I had some odd behaviors as well...it was all stuff which was totally out of character for me. I didnt have any problems until I was 31 so when everything started happening I was very aware that I wasnt acting "normal". I had the same problems with rages...even the tiniest thing set me off and it would be a HUGE ordeal. I'd usually end up in tears and totally exhausted. I also repeated phrases....but only in my head...not out loud.

I kind of withdrew from everything and it was harder for me to communicate so I was just keeping to myself more and more. I couldnt get online and research or post on message boards like I do now...I couldnt really process anything and I couldnt retain any info. Before I got sick I read books constantly...but then I found myself unable to get through one page because I'd keep starting over...and it would go on for hours! Sometimes I would just be sitting there on my bed and just staring at the wall...alot of time would pass and I wouldnt even be aware of it.

I was on disability at the time and I had alot of physical symptoms and pain but this stuff was probably most disturbing....plus I had gotten severely depressed. I was never a depressed person...I had always been happy.

I pulled myself out of all of this even before I started seeing doctors who could help me. All of this was caused by foods and chemicals....when I made dietary changes these problems were the first ones to improve. I was able to think more clearly and the depression went away in a matter of days.

I can still have "outbursts" if I'm exposed to a strong chemical or if I eat something that triggers it...but for the most part thats really rare now. Gluten doesnt really seem to set me off like the chemicals do...I cant tolerate the food dyes at all.

I really didnt have anything going on as a kid or while I was growing up. I was never sick and I wasnt sensitive to anything. I told one of my Dr.'s that the only thing I can think of is that until I was a teenager I used to bang my head repeatedly on my pillow at night and I've always had the tendency to rock back and forth rather than sit still. I still do that...probably on a daily basis. She said those are the top two symptoms (head banging and "rocking") that she sees in her autistic kids that she treats.

Another Dr. told me that if I had been exposed to this same level of toxicity as a one year old I'd be autistic for sure. The behaviors are similar but since my brain is fully developed I'm obviously not nearly as susceptible as the kids are.

I really dont know what to think about all of that but my mom did have 11 fillings...I'm not sure if that was having some affect early on or not.

Diet has been the biggest help to me so far but I still have a ways to go with everything else.

What's the best way to check for her mercury levels, or to do detox for a kid? It's so hard to find supplements/treatments for children.What's the best way to check for her mercury levels, or to do detox for a kid? It's so hard to find supplements/treatments for children.

I agree completely we need to get to the root of the problem and focus on treating THAT. I think with my daughter i'll start with hair analysis, and also get the enzymes you recommended. I'm sure she has yeast issues since I'm pretty sure i have systemic yeast issues although I no longer get many vaginal infections so I should do the yeast diet...but getting her to do NO sugar when she's already so restricted will be very difficult.

I cant say which way would be best for detoxing a kid because each person is different. My Dr.'s like to use Transdermal DMPS (TD-dmps) for the kids who are toxic from heavy metals. But since each kid is different no single treatment works for everyone. That would be the most mild and safest method of chelation using a chemical chelator. There are other more natural methods but it just all depends on how toxic a person is and how well they can tolerate the treatment. Mercury detox is something that has to be done under a doctors care.

Hair analysis is not good for checking mercury levels...because in most cases where a person is toxic mercury doesnt show up elevated. Instead its good for checking to see if the essential minerals are balanced or not. Mercury does its damage in the cells and it interferes with normal mineral transport....so usually if a person is toxic from mercury there will be some evidence of that in the essential minerals. Mercury can cause them to become severely unbalanced.

One of the best tests they're using to determine whether or not mercury is an issue with kids is the porphyrin test. Its a simple urine test. They are not looking for mercury in the urine...they are looking for mercury's "signature" (kind of like with the minerals in the hair analysis). There are specific porphyrins that are elevated in the urine when a person is toxic from mercury....or other heavy metals. They know that these certain porphyrins become elevated from mercury toxicity and the levels decrease as a person detoxes the mercury.

Heres some info. re: the porphyrin test.

Physicians experienced in mercury detoxification have long been in need of reliable laboratory markers that quantitatively and qualitatively determine which individuals are mercury toxic. Identification of the endpoint of mercury detoxification has also long been in need of objective laboratory markers. Urinary Porphyrin Profile, a relatively new test on the market, can objectively quantify how mercury-toxic a patient is and also help determine when a patient is "cleaned up" from their body burden of mercury.

Prior to the availability of this test, physicians could look at the excretion of mercury in the urine following a chelation challenge test with DMPS or DMSA. However, because of the ability of mercury to "hide" in the body, the amount of urinary excretion of mercury may not always be a reliable measurement of persistent body burden.

Porphyrins are organic ring-shaped structures required in the synthesis of heme, a molecule necessary in the formation of hemoglobin, the iron chelate in red blood cells that transports oxygen in the body.

Numerous steps are involved in the pathways that result in porphyrin ring formation, and each step is dependent upon specific enzymes. Porphyrins are formed from coproporphyrin, which in turn forms pre-copropophyrin. All three of these porphyrin compounds are excreted in the urine.

Measuring the ratios between the coproporphyrin and the pre-coproporphyrin relative to the porphyrin levels in the urine reveals if the conversions of these precursors are blocked on their way toward porphyrin synthesis.

Elevated ratios of coproporphyrin/ porphyrin or pre-coproporphyrin/ porphyrin indicate that the enzymes performing these conversions are impaired. While these enzymes can be genetically impaired, they are sensitive to the toxic effects of mercury, and to a lesser extent other toxic metals as well as xenobiotics (toxic foreign chemicals).

This urinary assay is thought to be more suggestive of mercury toxicity because mercury is highly toxic at nanomolar concentrations relative to the other toxic metals.

This is a useful test to identify the end-point of mercury chelation.

Urinary porphyrin tests that start off showing impaired enzyme function, and subsequently, following detoxification of mercury, show restored enzyme function, suggest that mercury levels have dropped to a point at which the enzymes are functioning again for that patient.

Until recently, the only lab that performed this assay was in France. However, Metametrix Clinical Laboratory in Georgia and Great Plains Laboratory in Kansas now offer this assay, and perhaps others I am not yet aware of. It's prudent to ask the laboratory to provide you with their controls for this assay. Certified labs in the United States are required to perform and maintain adequate controls on their tests. I am not aware whether such criteria are required for foreign labs.

...and more with reagards to ASD's/porphyrin testing:

WASHINGTON, DC - A new peer-reviewed scientific/medical case study confirms that many children with autistic spectrum disorders (ASDs) suffer from mercury poisoning. The new study, "A Prospective Study of Mercury Toxicity Biomarkers in Autistic Spectrum Disorders" by Mr. David A. Geier and Dr. Mark R. Geier has been published in the most recent issue of the Journal of Toxicology and Environmental Health, Part A (volume 70, issue 20, pgs 1723-1730).

This study utilized urinary porphyrin profile analysis (UPPA) to assess body-burden and physiological effects of mercury in children diagnosed with ASDs.

Using UPPA, Geier and Geier (2007) examined 71 children diagnosed with ASDs, neurotypical siblings, and general population controls. The researchers studied urinary porphyrin patterns using results reported both by the US Laboratory Corporation of America (LabCorp) and the French Laboratoire Philippe Auguste.

Their findings demonstrated that:

* Only the non-chelated patients diagnosed with ASDs had porphyrin patterns indicative of clinical mercury toxicity.

* Treating ASD diagnosed patients with chelating agents resulted in lower mercury-specific urinary porphyrins.

* The UPPA patterns reported were consistent between the two labs used.

The results of the present study confirm and extend previous observations by Nataf et al. (2006) and Geier and Geier (2006) on the use of UPPA profiling to establish the causal role for mercury in ASDs. Additionally, the current findings are consistent with those observed by many other physicians who treat patients diagnosed with both ASDs and mercury toxicity.

Thus, urinary porphyrin profile testing is being successfully used to:

* Demonstrate the role of mercury in ASD populations,

* Identify those children and adults who are mercury poisoned, and

* Track mercury excretion from affected children undergoing treatment.

For the past several years there has been a raging controversy as to whether or not mercury in medicines, especially in vaccines, has caused a dramatic rise in the rate of children diagnosed with an ASD. Many experts have insisted ASDs are caused by some yet-to-be-identified genetic cause. A paper recently published in Nature Genetics described the results of multi-million-dollar genetics study (which studied a thousand-plus families with at least two children diagnosed with an ASD using in-depth genetic screening). Tellingly, the authors reported, "None of our linkage results can be interpreted as 'statistically significant'..."(The Autism Genome Project Consortium 2007).

With the current study's results, public health officials should now publicly admit what they have been saying in their private transcripts and memos: Mercury from Thimerosal-containing vaccines and other medicines has been a major cause of ASD cases, which, based on recent CDC estimates (CDC 2007), may exceed a rate of one in 100 children.

Today, any parent, physician, or healthcare provider can easily confirm whether a non-chelated child with an ASD diagnosis is mercury poisoned by having UPPA testing run at either laboratory.

I actually just took the porphyrin test last week and I'm awaiting the results.

[ShayFL]

I have always regarded any level of the antibodies as indicative of at least an intolerance, if not Celiac. It doesn't make sense to me that the immune system would be reacting at all otherwise. If antibodies to every natural food substance can be identified, then that's a different story, but until then I see no reason to think the antibody levels must reach any particular point. A reaction is a reaction, no matter how small.

To put it another way, it would be like saying you could turn down a volume control until the level got below a certain point, and then say "there's no sound at all". It's either there, or it's not. If it can be measured, then it's there.

Recently, I heard a news story about how astronomers pointed a telescope at what they thought was empty space, because nobody ever saw anything there. However, since the telescope was highly sensitive, it eventually collected enough light to prove that the area of space is actually chock full of galaxies. So the better our method of detection, the more we are able to discover.

I am thinking this is true. I showed antibodies for ALL of my tests: EMA Iga - tTg - AGA both IgA and IgG ALL showed antibodies, but were "within range". Enterolab showed 2 gluten intolerance genes. DQ1 and DQ3.

The diet is proving to help me. Not cured. I have neuro symptoms which I understand can take time. But I am no longer bloated, pooping all day, running to the bathroom barely making it and migrainous.

I dot need an official Dx. I know a duck when I see one.

[Lizz7711]

I have a lot to learn about the genes I think! From what I'm understanding, the fact that my daughter has the 1/2 celiac gene really does not mean anything as far as her perhaps being celiac since she doens't have the "other half"...right? I'll try to read up some more on the topic, thanks for your help!

I think she has a leaky gut (me too) just based on how many foods and chemicals she has reactions to--usually just behavioral/emotional reactions...which means the molecules are crossing the blood/brain barrier I think. She does also get headaches, leg aches etc on occasion, and has hard stools most of the time still. I think she probably developed the leaky gut from mercury poisioning in utero since I have so many fillings...add on to that I couldnt' breast feed much, and from day one had to supplemetn with formula, then a few courses of antibiotics for ear infections, then vaccines...so i'm not sure how it all works but that's my guess!

She cheated yesterday and had a bagel at a friend's house...she was terrible last night behaviorally and is still having a hard time...she confessed to me tonight after I heard her asking her friend on the phone to get her a bagel. Luckily, she hates lying, and usualy confesses, but i'm hoping she makes the connections about how bad her life gets for her when she cheats. It's rough on an 8 year old, almost 9!

take care,

Liz

The genes are seperated into an alpha part and a beta part.

The DQ2.2 gene I have is half of the celiac DQ2.5 gene because it has the identical beta part as the DQ2.5 gene

There are actually several kinds of DQ7 genes. Of these some of them have an identical alpha part as the DQ2.5 celiac gene.

So the DQ2.2 gene and the correct DQ7 gene can form a complete celiac gene if both are present in a person.

Individually they are half the celiac gene. Though cases of celiac have been found in people with only DQ2.2 or DQ7 without DQ2.5 or DQ8 present. It is rare though.

Let me know if this is confusing. www.mlo-online.com/articles/0106/0106cover_story.pdf

This was very helpful to me. It is weird because I have half the gene which has been proven to cause gluten intolerance.

I am sorry about your daughter. Mine has just gone off gluten again. I hope it helps her out. I was reacting to things very sensitively for a couple months after going off gluten, but am better now. To you have any idea why she would have a leaky gut? I am sensitive to some chemicals too, but they don't make me get sick, just yucky. We were on a bus this weekend. I already felt quessy(spelling?) from fair food(gluten free just lots of beans) and someone got on with too much lavender on. It bothered my husband too.

[Lizz7711]

Hi Rachel,

I'm so glad you were able to figure out what was going on and get help and that you are on the path to healing...it sounds like you really went through a lot. It's so frustrating how little the whole medical community understands about all of these issues, especially the role of heavy metals in human illnesses. My whole life i've suffered from depression, social anxiety, panic attacks, and rage/emotional imbalances at times. The thing that helped me the most, and this is before I found out I was celiac, was that last fall I started taking hydrocortisone (physiological dose) for adrenal fatigue...within a few DAYS I found myself feeling patient, less angry, calm, and having energy to get through the day and handle little stresses. It was life-changing for me. I'm now also on Armour for hypothyroid, and I do hope to eventually wean off of the hydrocortisone. I think many many people are suffering from low adrenal function due to the stress put on them from toxins, heavy metals, food sensitivities etc.

I have about 12 big fillings, so i'm sure my daughter got poisoned through that unfortunately. Based on what you've been saying, i'm very thankful she did not become autistic from vaccines since she had them all, on their stupid fast schedule too.

I'll be curious to know how the porphyrin test goes for you. I will look into that...thanks for all the info, i'm going to print it. Unfortunately, my daughter is on Medicaid and i don't think her doctor will order any of this stuff so i'll have to pay out of pocket--do you know how much that test is? Can I order it without a doctor? Did your insurance cover the test? I currently do have insurance for myself so may order it through my doc. But for my daughter, I'm very curious to know what her mercury levels are. And I also want to do a saliva test for her adrenal function sometime. The hair analysis might still be good to check on other minerals right? I'm just going to have to bite the bullet and pay for this stuff because I want her body to heal!

thanks again!

I really didnt have anything going on as a kid or while I was growing up. I was never sick and I wasnt sensitive to anything. I told one of my Dr.'s that the only thing I can think of is that until I was a teenager I used to bang my head repeatedly on my pillow at night and I've always had the tendency to rock back and forth rather than sit still. I still do that...probably on a daily basis. She said those are the top two symptoms (head banging and "rocking") that she sees in her autistic kids that she treats.

Another Dr. told me that if I had been exposed to this same level of toxicity as a one year old I'd be autistic for sure. The behaviors are similar but since my brain is fully developed I'm obviously not nearly as susceptible as the kids are.

I really dont know what to think about all of that but my mom did have 11 fillings...I'm not sure if that was having some affect early on or not.

Diet has been the biggest help to me so far but I still have a ways to go with everything else.

I cant say which way would be best for detoxing a kid because each person is different. My Dr.'s like to use Transdermal DMPS (TD-dmps) for the kids who are toxic from heavy metals. But since each kid is different no single treatment works for everyone. That would be the most mild and safest method of chelation using a chemical chelator. There are other more natural methods but it just all depends on how toxic a person is and how well they can tolerate the treatment. Mercury detox is something that has to be done under a doctors care.

Hair analysis is not good for checking mercury levels...because in most cases where a person is toxic mercury doesnt show up elevated. Instead its good for checking to see if the essential minerals are balanced or not. Mercury does its damage in the cells and it interferes with normal mineral transport....so usually if a person is toxic from mercury there will be some evidence of that in the essential minerals. Mercury can cause them to become severely unbalanced.

One of the best tests they're using to determine whether or not mercury is an issue with kids is the porphyrin test. Its a simple urine test. They are not looking for mercury in the urine...they are looking for mercury's "signature" (kind of like with the minerals in the hair analysis). There are specific porphyrins that are elevated in the urine when a person is toxic from mercury....or other heavy metals. They know that these certain porphyrins become elevated from mercury toxicity and the levels decrease as a person detoxes the mercury.

I actually just took the porphyrin test last week and I'm awaiting the results.

[Rachel--24]

Hi Rachel,

I think many many people are suffering from low adrenal function due to the stress put on them from toxins, heavy metals, food sensitivities etc.

I think so too. I took the saliva test a couple years ago and they actually didnt look as bad as the Dr. had anticipated....unfortunatly I couldnt take anything to help it because I was really reactive to everything. At that time I didnt know what a HUGE issue salicylates were for me and everytime I took anything herbal I was getting alot worse.

Now that I get tested for everything its easier because so many things were actually putting more of a burden on my detox pathways. One of my Dr.'s ended up making a homeopathic adrenal support because thats about all I could tolerate.

Thats great that you were able to take something that really made a difference!

I take Armour also. I'm usually saying that I had no health problems before all of this happened and I forget that there were some things going on....they just werent making me sick...I would have rated my health a 15 on a scale of 1-10. I guess I really took it all for granted.

Anyways, looking back...I can see that I had some OCD tendencies as far as keeping things clean and organized. It mostly started in the years right before I got sick. Around that same time I was also diagnosed with hyperthyroid. I pretty much kept the thyroid problem in check without taking any meds but if I got overly stressed I would go hyper again and have to take meds to calm it down. When I got sick I could no longer control the thyroid problem and the meds didnt seem to work.

I was having such bad symptoms (which could easily be linked to hyperthyroid) that eventually I gave in to the Dr.'s and had radioactive iodine treatment to "kill" my thyroid. It was something I'd rejected in the past but I got desperate because I was actually sick and feeling bad and this was suppossed to be the "cure". Obviously it wasnt and my problems only got worse after going Hypo. I have to take Armour now....forever.

I think the underlying issues were causing problems all along....maybe my whole life. I wish I had known because I would have understood that destroying my thyroid wasnt the right answer. I'm sure the Graves Disease was triggered by mercury or some other toxin.

I did have two vaccines a few years before my dental work pushed me over the edge. I had 2 vaccines.....both containing thimerosal. I didnt associate any problems with the vaccines and I didnt have any adverse reaction....but I dont know how much it may have contributed to what was already "building-up".

I think if I would have known about this stuff I could have prevented all of this by avoiding these exposures to mercury....especially with regards to the fillings. I wasnt aware of any dangers.

I mostly post all of this stuff so that maybe someone else will make smarter decisions than the ones I made.....and maybe it will prevent them from going through all of this.

I have about 12 big fillings, so i'm sure my daughter got poisoned through that unfortunately. Based on what you've been saying, i'm very thankful she did not become autistic from vaccines since she had them all, on their stupid fast schedule too.

I think I got lucky...I had 31 years of good health and I enjoyed it. I think there's a strong liklihood that I would have been robbed of all of that if we had this same heavy vaccine schedule back when I was a kid. There are definately some genetic factors which are going to cause some of us to be more suceptible than others....but when it comes to toxins like mercury I think we are all very vulnerable.

I'll be curious to know how the porphyrin test goes for you. I will look into that...thanks for all the info, i'm going to print it. Unfortunately, my daughter is on Medicaid and i don't think her doctor will order any of this stuff so i'll have to pay out of pocket--do you know how much that test is? Can I order it without a doctor? Did your insurance cover the test? I currently do have insurance for myself so may order it through my doc. But for my daughter, I'm very curious to know what her mercury levels are. And I also want to do a saliva test for her adrenal function sometime. The hair analysis might still be good to check on other minerals right? I'm just going to have to bite the bullet and pay for this stuff because I want her body to heal!

I'm very anxious about the porphyrin results. Mostly worried that they'll come back totally normal which would really confuse matters. So far everything has pointed to mercury being the problem but I do worry each time theres a new test. If the results are positive I'll be very happy to know that we're doing the right thing with regards to the direction of my treatment. I did have 5 months of chelation already but with the low mercury levels coming out that whole time I'm thinking that most of the mercury burden (if there still is one) hasnt been touched.

I cant remember exactly what I paid for the test...I'm thinking it was around $160. It was more expensive then the urine tests I've done to check the metals/minerals in my urine following chelation...which are $99.

My Dr. orders all of the tests so I'm not actually sure whether or not it can be done without a Dr. I think you may be able to order a test kit online but you may need a Dr. to sign for it...not really sure though.

I do pay more out of pocket because I'm seeing Dr.'s who are outside of my plan. I'm covered 50% for the tests, treatments and office visits.

yeah....the hair analysis is good for checking all the toxic metals (just not reliable for identifying mercury) and the minerals. If several minerals are unbalanced its often a result of mercury toxicity. Calcium being vastly elevated can be a big clue.

[fedora]

Lizz,

the thing about the half celiac genes is they are proven to cause a genetic gluten intolerance, but it does not usually reach the level needed to destroy villi. My theory is that if gluten intolerance is triggered then given enough time it probably will eventually reach the threshold to cause villi damage. This will just take much longer. This is just my theory after studying scientific research on the matter. I spent many hours reading science papers about celiac and genes.

The other thing is in the celiacs without DQ2 or DQ8, almost all of them have DQ2.2 or DQ7(of course there are exceptions to that also).

It sounds like she definately has other things going on also.

good luck

[Rachel--24]

My theory is that if gluten intolerance is triggered then given enough time it probably will eventually reach the threshold to cause villi damage. This will just take much longer. This is just my theory after studying scientific research on the matter. I spent many hours reading science papers about celiac and genes.

The other thing is in the celiacs without DQ2 or DQ8, almost all of them have DQ2.2 or DQ7(of course there are exceptions to that also).

I wonder about the ages of those diagnosed Celiacs with DQ2.2 or DQ7?? I would think that if some of them are very young it would indicate that it doesnt necessarily take any longer for villi to become damaged than in a person who has DQ2 or DQ8.

Is there any info. like that available?? It would be interesting to see.

[Lizz7711]

It's so easy to look back and see how we should have done things differently isn't it? The tragic thing is that the doctors just really don't know what they are doing. I"m sorry you had to lose your thyroid and go through all of that. But I guess our only choice is to take the positive and see what we've learned, and as you said, try to help others NOT go through what we did. My mom died of cancer a few years ago, prior to that she had major digestive problems and got down to only 86 pounds at one point. As i say in my signature, the cure from Mayo clinic was pepto bismol. Give me a break. it worked, she gained weight, but the cancer was already there i'm sure. She had ulcers her whole life, a mouth full of mercury and gold fillings, for sure hypothyroid and adrenal problems, but no treatment. But her death was not in vain. because of her, I went to grad school for nutrition, and through various "coincidences" ended up working for a holistic doctor who sent me to a conference on celiac disease. Since my daughter had always had constipation issues, I decided to do enterolab testing, and from there found out that I have celiac disease, and now know for certain that my mom had it her whole life as well. So her suffering and death is literally helping me to heal and preventing my daughter from a life of problems. Of course, I think we may have found out anyway and I don't think it was necessary for my mom to go through all of that...but it's my only way of reconciling it all and it's better than being bitter against the doctors (still working on that forgiveness thing). Now I really want to help others become aware of these food sensitivity issues (as well as the risks of the heavy metals, food additives etc)--but often my words fall on deaf ears...so many people just don't get it.

By the way, I think my daughter and i also react somewhat to salicilates (feingold was the first site I found that helped me to realize my daughter may not be psycho). Is it possilbe to only react to some of them? It seems to me she reacts to red grapes, and I react to some apples. And I also have problems I think with some spices like curry, red pepper spice...but I still use them because I like them so much--stupid I know.

thanks for the info on the porphyrin test, i'll probably start with hair analysis, then when I have the money go for that test. When will you get the results from your test? Hope it validates what you have been doing. Do you have high lead as well? Does the chelation you are doing also get rid of the other metals?

take care!

I think the underlying issues were causing problems all along....maybe my whole life. I wish I had known because I would have understood that destroying my thyroid wasnt the right answer. I'm sure the Graves Disease was triggered by mercury or some other toxin.

I think if I would have known about this stuff I could have prevented all of this by avoiding these exposures to mercury....especially with regards to the fillings. I wasnt aware of any dangers.

I mostly post all of this stuff so that maybe someone else will make smarter decisions than the ones I made.....and maybe it will prevent them from going through all of this.

I'm very anxious about the porphyrin results. Mostly worried that they'll come back totally normal which would really confuse matters. So far everything has pointed to mercury being the problem but I do worry each time theres a new test. If the results are positive I'll be very happy to know that we're doing the right thing with regards to the direction of my treatment. I did have 5 months of chelation already but with the low mercury levels coming out that whole time I'm thinking that most of the mercury burden (if there still is one) hasnt been touched.

[Lizz7711]

Rachel...

you had mentioned that Doctor's Data is a good one to go with for hair analysis, but you have to have a doctor's account with them to order a test. My daughter's doctor won't do this. Is there another lab you or anyone else would recommend for doing hair analysis where I can just order it online?

thanks.

Hair analysis is not good for checking mercury levels...because in most cases where a person is toxic mercury doesnt show up elevated. Instead its good for checking to see if the essential minerals are balanced or not. Mercury does its damage in the cells and it interferes with normal mineral transport....so usually if a person is toxic from mercury there will be some evidence of that in the essential minerals. Mercury can cause them to become severely unbalanced.

[Lizz7711]

Rachel...

you had mentioned that Doctor's Data is a good one to go with for hair analysis, but you have to have a doctor's account with them to order a test. My daughter's doctor won't do this. Is there another lab you or anyone else would recommend for doing hair analysis where I can just order it online?

thanks.

Nevermind this question...my doctor gave me 3 of the hair kits so I can use them for me, my daughter, and send one to my dad in Florida!

[LuvMoosic4life]

Personally, I think our family has Celiac genes. But I'm the only one who is trying to get a dx. I think part of that is that if I can get a Dx, then maybe the rest will think about it. My father has reflux, my aunt (his sister) is pretty intolerant to wheat and has a messed up thyroid... hmmm

Then her two daughters cannot eat wheat very well, but they have yet to go gluten-free. They are of the belief, everything in moderation. One has hypothyroid, dairy intolerance and soy intolerance, the other is speculated to have fibromyalgia.

My brother has more gastro problems than ANYONE I know, and has thrived on a whole food diet. Somedays he says that bread bloats him, some days he doesn't. And honestly, I'm not so sure about my other brother.

Then there's me: a case study unto itself.

Ya think there's a pattern here?????

That's pretty much everyone from my father down. Oh yeah, did I mention that my grandma has a touchy stomach too?

So, I agree with you. I think the incidence in family is far greater than 10%. When the diagnostic tool can only be used after damage has occured, it can't help but be faulty. I thankfully, caught my digestive woes early on. Do I believe I have celiac? Absolutely. Will I ever find out for sure? I don't know. But removing gluten was only the beginning, I am still working on getting my health back on track.

Statistically, this is the most common genetic disorder. But, as you said, the research is still in it's infancy. Somewhere around 98 or 99% of people with celiac disease go undiagnosed. I think that until the diagnostic criteria change, that number will remain high. I agree with you, what if the number of people with the gene who develop celiac is much higher than they think? I think that it is possible to have the gene with out actually having the disease: there are people with the gene for Cystic Fibrosis, but never actually develop it.

But given the fact that people can be asymptomatic (or what they consider to be) and have celiac disease, it would stand to reason that more people who carry the gene would actually have Celiac than not.

Ok... that's enough of my incohesive reasoning for tonight... what a great thread!!!!

I agree with this. My family is exactly the same way. Every, and I mean EVERY perosn I know in my family has some kind of digestive problem. EVen my brother who said doesnt have any problems like me : after every meal he'll go to the bathroom, I can't help but hear it doesnt sound like normal pooping HAHA. and most of my family has the same mind set - moderation. they know wheat bothers them, but dont take it seriously. I'm the only one who went gluten-free.

[AliB]

It just looks to me that nearly everyone I know has a problem with gluten to a greater or lesser degree.

I have had family members with Cancer, several with Diabetes, others with emotional and neurological conditions, depression, anxiety, many with stomach and digestive issues. Friends with Chronic fatigue, Fibromyalgia, hemochromatosis, blood disorders, neurological problems, digestive problems, migraines, heart conditions, liver disease, the list just goes on and on and the net spreads out in an ever-increasing circle.

As far as determining who has Celiac, I think we have to be careful not to draw too many conclusions.

The understanding of this disease is still very much in its infancy - the understanding of how our bodies work is still a mystery in many areas, and even when there is understanding, there is no guarantee that new information will not turn up and blow it right out of the water. After all, at one time, their 'understanding' of Celiac was that it was a childhood disease that was grown out of. Yeah, right.

None of us is safe in our assumption that any of the doctors, conventional or 'alternative' actually really knows what they are talking about. Their expertise is based on certain 'opinions' and we all know there are as many of them as there are people!

If we find a source of treatment that helps us and we can respond to and get better, then that is great, but for too many of us the answer is not that simple. Many spend a lot of time, money and effort searching for a solution to their health issues which may or may not be forthcoming.

My parents spent years and thousands chasing 'alternative' solutions, as they were getting none from conventional medicine, but none picked up that they were gluten-intolerant or that Mum was actually Celiac. Had they done so, then she, if not both of them, would undoubtedly still be alive.

So, although just being gluten-intolerant may not indicate that we have Celiac Disease, conversely it also might. So little is so far known about genes and how they work, who knows that at some point the understanding will change again.

At the end of the day, if people get better on a gluten-free diet then that is the way they should go. Unless it can be proven beyond any reasonable doubt that an individual does NOT have Celiac (and under the current testing procedure it can't), then it is safer by far to follow the diet for life. It is not a life sentence. It is just a change of diet. If wheat didn't exist we would have no problem. If not eating gluten means that I have a life, then better that than no life at all.

PS. A comment was made in this thread that 'Celiac Disease IS villi damage'. That may well be true, but unfortunately often the villi damage will be of a kind or in an area that is not evident under the current testing procedure, and is not investigated until the gut damage has become so bad that digestive and other issues 'might' finally bring it to the notice of the medical profession, if you are fortunate.

My Mother was Celiac all her life, but she did not have the more obvious gut issues until 2 years before she died at the age of 64 and even then the suspected probability of Celiac was not picked up until a few weeks before she died when the gluten-free diet she was put on was way too little too late. Sadly, my Mum was very much into good healthy food and was so good at controlling her diabetes that I know she would have run quite happily with the gluten-free diet if she had known about it years earlier.

[Rachel--24]

By the way, I think my daughter and i also react somewhat to salicilates (feingold was the first site I found that helped me to realize my daughter may not be psycho). Is it possilbe to only react to some of them? It seems to me she reacts to red grapes, and I react to some apples. And I also have problems I think with some spices like curry, red pepper spice...but I still use them because I like them so much--stupid I know.

Liz, good news about the hair tests!

Reactions to salicylates occur when the "load" becomes too high. Salicylates are a natuarally occuring "pesticide" to keep plants, fruits, veggies, etc from being harmed by pests. They are actually toxic but fortunately we are equipped with an enzyme which metabolises them and they are eliminated before they could ever cause us any harm.

The enzyme is a part of the sulfation pathway and if for some reason that enzyme is inhibited and the pathway faulty...we may not be eliminating those salicylates quite as effeciently. Salicylates are "phenols"...and they are processed/detoxed through the PST enzyme/sulfation pathway.

When the system is faulty and the phenols are not removed they end up accumulating and circulating through the body. Depending on how faulty the system is and depending on what a person's threshold is....tolerance levels will vary. So basically, the reactions occur when the level of phenols in the body becomes too high.

Can you handle aspirin? Aspirin has a very high salicylate content. That can give you some idea as to whether or not salicylates are a problem.

thanks for the info on the porphyrin test, i'll probably start with hair analysis, then when I have the money go for that test. When will you get the results from your test? Hope it validates what you have been doing. Do you have high lead as well? Does the chelation you are doing also get rid of the other metals?

Yes, the chealtion I'm doing gets rid of other metals as well. I had 9 toxic metals showing up in my urine tests. So far none of the toxic metals have been out of range....so if I have high lead we dont know it at this point.

I should get the porphyrin results back late this week or sometime next week. I spoke with one of my Dr.'s last night and she requested that I have this test done. I told her I've already done it but the results arent in yet.

She said this test will let us know whether or not we need to continue with chelation. Certain porphyrins can be elevated due to mercury, lead or arsenic. If the test turned out to indicate lead as a bigger problem then we would need to switch my method of chelation to something more specific to lead. If everything turns out normal then we probably wouldnt pursue mercury any furthur at this point.

If thats the case we will have to look at other things (besides metals) which we've already started to do. The Dr. I talked to last night is primarily treating autistic kids. She's one of several Dr.'s across the country who are working really hard to put the puzzle pieces together so that these kids can recover.

I have alot of the same "dysfunction" that is showing up in these kids. The phenol intolerance/sulfation pathway issue is the same..as are the gut problems, impaired detoxification, yeast issues, etc. My Dr. is hoping to learn some things from my own situation since I've been able to pinpoint alot of things and communicate that to her. Unfortunately, the kids she's treating with the same issues are non-verbal....so they cant let her know what they're feeling, what bothers them, etc. We know which things may have been "triggers" for me and we've been able to pinpoint some important problem areas and we are doing all of the necessary testing to try to get a more clear picture.

So basically, I'm taking lots of tests and hoping that we can figure out some important "missing pieces" so that I can get past all of this and so that hopefully they'll know more about how to treat some of the kids who have issues very similar to my own.

We are looking at different things right now...and we dont know how much mercury is involved but hopefully alot of questions will be answered in the upcoming weeks/months.

[Rachel--24]

It just looks to me that nearly everyone I know has a problem with gluten to a greater or lesser degree.

I have had family members with Cancer, several with Diabetes, others with emotional and neurological conditions, depression, anxiety, many with stomach and digestive issues. Friends with Chronic fatigue, Fibromyalgia, hemochromatosis, blood disorders, neurological problems, digestive problems, migraines, heart conditions, liver disease, the list just goes on and on and the net spreads out in an ever-increasing circle.

As far as determining who has Celiac, I think we have to be careful not to draw too many conclusions.

I agree that the tests have alot of room for improvement. As far as drawing conclusions....I have to agree thare as well...and I think that 1 out of 3 having Celiac is really stretching things since we know *for sure* that this is an autoimmune disease which requires a genetic predisposition AND a trigger.

I dont think it would be wise for us to link all of those diseases and conditions (CFS, FMS, Diabetes, Cancer, liver disease, migraines, etc) to ONE single cause.

We cant say that every illness that every person in the country is experiencing is a result of gluten consumption. In my opinion if we lump every symptom and every condition into *one* diagnosis (Celiac) alot of people are going to continue to suffer.

The bottom line is that while the gluten free diet *is* very helpful in certain conditions (autism is an example)....it is not the answer that everyone is looking for. If it was.....many people would not continue to suffer symptoms despite a diet which is 100% free of gluten.

Speaking from my own experience with gluten intolerance I would have to say that if I had not looked *past* that I may not be here today. If I put all of my eggs into one basket and just left them there...as if there were no other possible answers...I would not be getting up and going to work each day....and I would not be sitting here with a brain that is now functioning quite well.

At the end of the day....despite my positive anti-gliadin antibodies (Enterolab)....gluten was not my main issue. Actually, it wasnt even one of the bigger issues.

So yes....I'm a person who has a gluten intolerance "to a lesser degree". In my mind it would have been tragic if I'd left it at that without ever trying to determine *why* I have that problem "to a lesser degree". Possibly there is something more significant that I'd be overlooking?

So, although just being gluten-intolerant may not indicate that we have Celiac Disease, conversely it also might. So little is so far known about genes and how they work, who knows that at some point the understanding will change again.

At the end of the day, if people get better on a gluten-free diet then that is the way they should go. Unless it can be proven beyond any reasonable doubt that an individual does NOT have Celiac (and under the current testing procedure it can't), then it is safer by far to follow the diet for life. It is not a life sentence. It is just a change of diet. If wheat didn't exist we would have no problem. If not eating gluten means that I have a life, then better that than no life at all.

I can agree 100% that if a person recovers on the diet that is certainly the way they should go.

I dont think its reasonable to say that every person should be on the diet regardless of lack of evidence supporting a Celiac diagnosis. Personally, I dont feel the testing is as bad as some make it seem. Overall, I think the tests are fairly decent...some cases will be missed because the tests arent 100%. However, a great deal of people are not testing positive because they actually DO NOT have the disease. I dont think its necessarily fair to blame the tests when in fact alot of people who are reacting to gluten are intolerant for reasons other than Celiac.

I could have easily diagnosed myself as Celiac and ended it right there as I did have many "classic" symptoms of the disease. However, I think we have these tests for a reason...I think that Celiac is pretty well understood and I believe that the tests are very useful in identifying true cases of Celiac.

Its unfortunate that not everyone gets the diagnosis (even though they have obvious symptoms while consuming gluten) but I think its also important to realize that the tests are designed to identify Celiac Disease....and not every condition which may lead to gluten intolerance via leaky gut.

As much as some of us may want to have that "answer" in our hands (and trust me...I've been there) it would also be an injustice to be diagnosed with a disease that one did not actually have. I would not want to wish for ALL cases of gluten intolerance to be diagnosed as Celiac...because that really does close the door for so many people who may be left holding that paper....but yet not actually recovering.

PS. A comment was made in this thread that 'Celiac Disease IS villi damage'. That may well be true, but unfortunately often the villi damage will be of a kind or in an area that is not evident under the current testing procedure, and is not investigated until the gut damage has become so bad that digestive and other issues 'might' finally bring it to the notice of the medical profession, if you are fortunate.

The biopsy is a "hit or miss"....we already know that. Aside from that we have a blood panel, genetic testing and response to diet which can all be helpful in making the diagnosis. Some people will have terrible gut damage (I am one of them) and yet it is NOT related to Celiac. We cannot make the assumption that every problem in the gut is Celiac....or that every cancer is undiagnosed Celiac...or that every diabetic also has Celiac.

Villi damage was not evident in my case...because I do not have Celiac....and as I stated earlier in the thread "Celiac Disease IS villi damage". It doesnt really matter how sick I got (and I dont think it could have gotten much worse)...I wasnt going to suffer damage from a disease that I do not have...and that I am not genetically predisposed to. It doesnt mean that I have NO problems with gluten whatsoever....it just means that I have other issues which have played a role in the development of leaky gut and food intolerance.

[Lizz7711]

The enzyme is a part of the sulfation pathway and if for some reason that enzyme is inhibited and the pathway faulty...we may not be eliminating those salicylates quite as effeciently. Salicylates are "phenols"...and they are processed/detoxed through the PST enzyme/sulfation pathway.

Can you handle aspirin? Aspirin has a very high salicylate content. That can give you some idea as to whether or not salicylates are a problem.

I should get the porphyrin results back late this week or sometime next week. I spoke with one of my Dr.'s last night and she requested that I have this test done. I told her I've already done it but the results arent in yet.

She said this test will let us know whether or not we need to continue with chelation. Certain porphyrins can be elevated due to mercury, lead or arsenic. If the test turned out to indicate lead as a bigger problem then we would need to switch my method of chelation to something more specific to lead. If everything turns out normal then we probably wouldnt pursue mercury any furthur at this point.

So basically, I'm taking lots of tests and hoping that we can figure out some important "missing pieces" so that I can get past all of this and so that hopefully they'll know more about how to treat some of the kids who have issues very similar to my own.

Hi Rachel,

I need to read up on the "phenols". It makes sense that reaction would go along with load. I haven't reached a point yet since going Gluten-free Casein-free where i'm ready to re-evaluate the salicylates and go off of all of them again. We did it for about 6 weeks, but that was before going gluten-free, so I think if we did it now i'd notice effects of certain foods more clearly. As far as aspirin, it's been so long since I took it so i have no idea if i'd react..and i'm too scared to try! Don't think my daughter has EVER had aspirin.

How did you figure out you have a problem in the detox pathway? Was there a test you did for that?

About the porphyrin test. Did you read Great Plains Lab's article on their doubts about using the test for heavy metal testing? Here is the link: Open Original Shared Link After reading it, it sounds like it may not be an appropriate test unless you have current HIGH toxicity (i.e. right after your mercury exposure of those two fillings being replaced), and that it is not so useful for those with low levels...esp. if you've been doign chelation for awhile maybe your level will not show up on this test.

It's amazing to me how almost 70-80% of the good information I find out there about food sensitivity issues, mercury poisoning, leaky gut issues, BBB issues etc, all comes from those dealing with AUTISM. I think what we're seeing is just a continuum of damage, but for many of the cases, underlying causes may be very similar. In reading about glutamate neurotoxin issues as well it seems to be on the spectrum with people suffering later in life from Alzheimer's etc. Basically, we've all got brain damage/nerve damage to some extent whether it's from the mercury combined with yeast, combined with gluten and casein proteins doing their thing, etc. I don't have much of a handle on the issues you mentioned as far as the various detox pathways and enzyme disfunction yet.

I sincerely hope and pray for your continued healing as you uncover all that's going on in your body. If you weren't so on top of your own healthcare, imagine where you'd be right now! The human body has an amazing capacity to self-heal, given the ability to do so, so i'm sure that as you continue unraveling it all, your body will bounce back. Of course there may always be some long-term damage, but overall I think we can both hope for a pretty good prognosis

take care.

[Rachel--24]

About the porphyrin test. Did you read Great Plains Lab's article on their doubts about using the test for heavy metal testing? Here is the link: Open Original Shared Link After reading it, it sounds like it may not be an appropriate test unless you have current HIGH toxicity (i.e. right after your mercury exposure of those two fillings being replaced), and that it is not so useful for those with low levels...esp. if you've been doign chelation for awhile maybe your level will not show up on this test.

I actually responded to a post very similar to yours this morning...so I'll just "cheat" and re-post my response here.

Yeah....I looked into the test (as much as I could find anyway)....before I took it. Like everything else there seems to be some discreprencies but probably about 90% of what I read was positive regarding the accuracy of the test. There was even a PubMed article on studies showing that these specific porphyrins are elevated in the presence of mercury toxicty (or lead and aresenic to a lesser degree).

There seems to be some pretty clear evidence that the porphyrins are a good biomarker for detecting mercury toxicity.

Mostly, I like to hear from the dr.'s who are using the tests and what their experiences are with it. Does it seem like an accurate test? Are you finding it useful? Are there changes in the porphyrins as a direct result of chelation? etc. etc. Those are the kinds of questions I asked Dr. A. last night and it was all positive.

Also, if I see that alot of Dr.'s are using a certain test I tend to think there's a good reason...I know they arent really too gung-ho about tests that dont provide useful info. So I'm just crossing my fingers on this one.

To add to that my understanding is that changes in the porphyrins dont actully occur rapidly....so it does take time for them to "normalize" even after you've successfully chelated mercury.

If mercury truelly is a problem for me I would suspect that not much has changed since we have not yet been successful at pulling it out with chelation. I had very high copper and the chelator wasnt getting to any of the other metals since it has a preference for copper. Also, symptoms were not improving as they should with chelation....so either its because we were not able to get to the mercury or there just wasnt a problem to begin with. So far every doctor involved believes that the mercury is "locked up"...as it often is with the autisitic kids.

This is why we want to look at the porphyrin test. Because when everything is pointing to mercury but its not coming out....we need to know *for sure* before we continue chasing it. We dont want to waste time and money if its not the problem we think it is.

About the test...my Dr. said that yes...they are finding it to be very reliable. She said its the most reliable indicator they have right now because unlike the hair and provocation tests...there really isnt alot of "grey area".

I believe a person can have high toxicity regardless of levels. So far, I'm not aware of any test that can accurately measure total body burden...although this test can be somewhat indicative. There is really no certain level which can truelly indicate high toxicity in an individual since there is NO level of mercury which has been proven to be safe. Therefore, a small amount can be very toxic to a person who may be more susceptible.

The test is looking for actual changes in enzyme function (porphryin production) which occur as a result of mercury toxicity. As far as I know this doesnt correct itself...although some slight changes may occur I would assume that as long as the body remains in a toxic state the porphyrins would not normalize without some form of treatment.

Even as mercury is coming out the changes in porphyrin levels arent seen immediately. It takes some time for the tests to show that the problem has resolved.

I would have to assume that mercury was not a huge issue if my levels are normal...since not much was excreted during my 5 months of chelation.

Mercury is only high in the BLOOD after a high exposure (like when my fillings were first drilled out)....but once it is no longer in the blood and is stored away toxicity doesnt diminish....toxicity will remain high....its just more difficult to determine. Since the porphyrin test isnt looking for mercury itself...but rather the changes which occur as a result of enzyme dysfunction...it shouldnt matter how recent or how long ago the exposure occured. All that matters is if mercury is affecting normal functions in the body.

I think there are only two labs who are running this test....and only one in the U.S. I believe they've only been using this test to determine mercury toxicity for less than 2 years now.....so its still a fairly new method of testing. I'm sure that its not a perfect science but it does seem to be one of the better tests available....especially in the cases where mercury toxicity is suspected (or very likely) and yet nothing is coming out in the hair or provoked urine tests. Its a good "next step" for someone like me.

[Rachel--24]

How did you figure out you have a problem in the detox pathway? Was there a test you did for that?

Unfortunately, there is no specific test to determine that directly.

You can read this page to kind of get an idea about the sulfation pathway...which is where I seem to be having most of my problems. Open Original Shared Link

These answers did not come easy for me at all. I went through a LONG period of time trying various diets and trying to determine which foods or "food chemicals" were causing me problems. I researched each diet and eliminated salicylates...then glutamates...then amines...then sulfites...then oxalates....plus a bunch of other things in between.

It wasnt really until this year that I went back and focused more heavily on salicylates and started suspecting that as a major piece of the puzzle.

I also have problems with high sulfur foods which is an indication of impaired sulfur metabolism.

Also, I spent quite a bit of time working with a BioSET practitioner that my MD sent me to. His reason for sending me to her specifically...was to have her figure out whether or not I had "blocked" detox pathways. She's one of a handful in the country who does this kind of testing and "desensitization" treatments to "unblock" problems in the pathway. My Dr. had patients who would do chelation for months without ever excreting any mercury...and then after he'd send them to this practitioner for some help with pathways...they would come back and suddenly start excreting large amounts of mercury.

I was seeing her long before we even attempted chelation. With her energetic testing we could see that I had alot of problems with the sulfation pathway....and she treated me for those issues. However, I could "sense" that after a short period of time I would be having the same problems reoccuring. Not that they ever really "went away" but they would improve a bit and then get worse. I would tell her that we needed to re-check that pathway and sure enough...each time it was "blocked" again. This happened a few times and she said that *something* had to be overloading my system and causing enough stress that the problem wasnt resolving.

I now know that the problem is phenols....they are overloading the system. This all took months of research and putting little pieces together. Everything from high copper, to yeast issues, to low uric acid (old blood test), to specific reactions to foods and fragrances, to specific symptoms, to problems with sulfur....all kinds of different topics that I researched and then it all kind of started to come together.

Also, I've seen a couple other Dr.'s who test various things using alternative methods (such as kinesiology). They test literally hundreds of things but the "phenol panel" was always something that I had problems with. The panel might contain 50 different phenolic substances and I'd react to every single one of them. Unfortunately, noone really knew alot about phenols and there wasnt alot of attention or focus on that particular issue.

Once I put all of my ideas together and it was making sense I talked to one of my doctors and he said he felt that I was very close to the truth. I then discussed it with my other Dr. who is working with the autistic kids and things started to "click". So now she is finding out everything she can with regards to phenols/sulfation pathway and communicating with the other Dr.'s to see what they can come up with. There is some info. available but unfortunately...not alot.

This is all pretty much "new territory" for the doctors who are trying to figure all of this out. They are getting answers little by little. So this issue is a "piece of the puzzle" since its something that alot of the kids are dealing with...and so this is something I'm trying to help my Dr. with....since I'm going through it myself.

There is no specific labtest to determine if the pathway is faulty....but there are all sorts of "issues" which would indicate that there is a problem. Phenol sensitivity is a definate sign. For some reason my phenol sensitivity is more pronounced than any my Dr. has seen...with the exception of one little girl who may be worse than me with regards to the food reactions.

Also, this Dr. does an advanced form of muscle testing (ART) and after we first discussed all of this she was excited and wanted to test all of the phenols on me...as well as things involving the sulfation pathway. Sure enough every problem occuring in my body seemed to be linked directly to phenols and there is also seemingly some connection to the metals as well. So she said I was pretty much "right on target" with the phenol/sulfation thing.

Now we are working really hard to connect the dots and determine what might have triggered this chain of events...and what "glitches" might be in my system causing this to continue as it has. And what role are the metals playing? What role is yeast playing (and we know this is a factor)? What about the copper/zinc ratio?

These are all things that are showing up not only in my situation...but also in the kids who are having the same problems. So, unfortunately theres no easy answer to any of this. I'm taking various tests to see what can be determined.

Once you know what to look for...identifying problems with the sulfation pathway arent all that difficult. Its determining *why* the pathway is faulty that is a bit more challenging.

Oh...there are also test strips available for measuring sulfites and sulfates in urine. This can give some ideas about sulfur metabolism but not a direct indicator of problems with PST or sulfation pathway.

Sorry if I'm not explaining it all very well....but its actually pretty complicated stuff which took me alot of months to understand....and I still have alot to learn!

Here are some links that might explain some of it better.

Open Original Shared Link

Open Original Shared Link (scroll down to "Sulfur-Transferase Deficiency")

Autism researchers have been intrigued by the fact that a PST deficiency can cause the improper metabolism of some neurotransmitters (serotonin, dopamine and noradrenaline.) It has been known for years that autistics often have abnormal levels of serotonin, at least as is measured in the blood. but the buildup of serotonin may be less significant than another outcome of PST deficiency--namely, the effect this deficiency would have on the permeability of the intestinal lining. One outcome of an improperly operating sulfur-transferase system is insufficient connective tissue in the gut wall. Thus, this deficiency could be yet another reason (besides Celiac Disease and other gastrointestinal ailments) that the gut wall would be "leaky." As stated above, when improperly metabolized proteins (such as gluten or casein) are able to escape the gut lining into the bloodstream, they can cross the protective blood-brain barrier.

If you read up on this issue you can see that they do have some understanding of what is going wrong....but there is no real answer as to how to correct it...or as to what might be causing it. Obviously, *something* has to cause it because in my case I was not having these issues for the first 31 years of my life...and *something* triggered it at around the same time I had my dental work done.

[Rachel--24]

I sincerely hope and pray for your continued healing as you uncover all that's going on in your body. If you weren't so on top of your own healthcare, imagine where you'd be right now! The human body has an amazing capacity to self-heal, given the ability to do so, so i'm sure that as you continue unraveling it all, your body will bounce back. Of course there may always be some long-term damage, but overall I think we can both hope for a pretty good prognosis

Thanks Liz!

I agree that the body is AMAZING in its ability to heal itself.....if given the opportunity. Despite everything I have *always* felt like my body is still very strong and definately would bounce back fairly quickly if we can find the "glitches" in my system and correct them.

I was less proactive in the first couple years....mainly because I was too sick to put alot of effort into research. I also was severely depressed...it was definately a scary time for me. I also had horrible doctors who were totally unconcerned and who put forth no effort....except to fill out their prescriptions (my bathroom looked like a pharmacy).

I dont know what would have happened to me if I hadnt decided to cut those doctors loose and to take charge of my own health. I think things would have only gotten much worse for me.

It's amazing to me how almost 70-80% of the good information I find out there about food sensitivity issues, mercury poisoning, leaky gut issues, BBB issues etc, all comes from those dealing with AUTISM. I think what we're seeing is just a continuum of damage, but for many of the cases, underlying causes may be very similar

This is very true. The *only* reason we know as much as we do is because of Autism....otherwise there would be alot less info. out there.

There would also be alot less doctors who are very familiar with the underlying causes contributing not only to Autism but all kinds of neurological disorders, Lyme Disease, FMS, CFS, Leaky Gut Syndrome, Multiple Chemical Sensitivities, Candida, etc.

Everything that I ever researched from the very beginning was linked to Autism....food intolerances, special diets, heavy metals, yeast issues, dysbiosis, leaky gut, lyme disease, impaired detoxification, impaired enzyme function, etc. etc.

The underlying causes are actually very similar....however, the kids are more susceptible to a greater degree of damage because the BBB is not yet fully developed....also the immune system is not yet fully capable of handling the assaults.

One of my practitioners said the only real significant difference in my situation is that I am not suffering damage from vaccines as the majority of these kids are. I also do not have problems with viruses as most of the kids do.

[AliB]

I dont think it would be wise for us to link all of those diseases and conditions (CFS, FMS, Diabetes, Cancer, liver disease, migraines, etc) to ONE single cause.

We cant say that every illness that every person in the country is experiencing is a result of gluten consumption. In my opinion if we lump every symptom and every condition into *one* diagnosis (Celiac) alot of people are going to continue to suffer.

The bottom line is that while the gluten free diet *is* very helpful in certain conditions (autism is an example)....it is not the answer that everyone is looking for. If it was.....many people would not continue to suffer symptoms despite a diet which is 100% free of gluten.

I am not going to argue the point with you Rachel, but I did not say that all these illnesses were due to Celiac, simply that there seems to be evidence that a lot of people who suffer with these problems do get better when on a gluten-free diet. Very often they have only discovered it either because, like my husband, whose brain-fog has gone and his Fibromyalgia is much improved, have joined other family members who are following a gluten-free diet, or, they are following it on the advice of a health practitioner perhaps due to gut problems, but have then found that their migraines, or arthritis, or psoriasis, or whatever, has also gone into remission.

There does seem to be evidence of causal links between a lot of these conditions and gluten consumption, but it is up to the individual to try and figure it out for themselves as most of the time the help is not forthcoming from any conventional source.

Perhaps in your case it didn't work and you feel confident enough to assume that you do not have Celiac, and that is fine, but there are an awful lot of people out there who do not have the benefit of your mental clarity or ability to do research and gather enough understanding.

Just now I saw a post from someone who wanted to remove her login from the website as her blood tests had come back 'negative' and as she 'obviously' doesn't have it, she doesn't need to be on this site any more. Meanwhile she is still suffering and doesn't know what to do (fortunately someone did advise her that the tests are not conclusive (really??))

That is dangerous. We already know that a huge section of those with Celiac are being missed - that it takes an average of 11 years for people to get a diagnosis, and that many people are dropping dead every day undoubtedly due to undetected and undiagnosed Celiac Disease.

Personally, although it would be nice to have a diagnosis so that I could get more help an support from the NHS, to be quite honest I don't give a toss whether I am Celiac or not. I just know that eating gluten makes me sick and that I am better without it.

Whilst many do, no, some don't get better - that may be because, like you, gluten is not actually their problem. It might also be that gluten is only part of their problem, with other factors like dairy or some other antagonist that won't improve until the leaky gut is healed. But following a gluten-free diet, even for life, is not the worst thing that can happen to us! Saying that people don't need to be on it if they are not Celiac is like the Doctors saying "it's too restrictive" or "you can't be vegetarian because you can't eat meat". People have the right to eat the foods they choose or that their body dictates. I can't tolerate Dairy. Unfortunately there is no 'Lactose-Intolerance Disease', so I avoid it because I feel sick if I have it.

I agree that the tests have a lot of room for improvement. As far as drawing conclusions....I have to agree there as well...and I think that 1 out of 3 having Celiac is really stretching things since we know *for sure* that this is an autoimmune disease which requires a genetic predisposition AND a trigger.

I don't know where you gleaned your understanding that Celiac is an auto-immune disease but as is pointed out in 'Dangerous Grains', of the diseases that ARE linked to it, it is the only one that ISN'T auto-immune. The gluten triggers so-called 'auto-immune' reactions, but it is not an auto-immune disease in itself.

As 'current' understanding dictates it appears to need a genetic pre-disposition (undoubtedly an in-built lack of the necessary enzymes, either due to genetic factors or metabolic maladaption, or both), and as you state, a trigger. The possibility of the whole 35% of the population being 'triggered' into full-blown Celiac is not that far-fetched. Anything can be a trigger - a virus (a friend of mine), a pregnancy (me), an accident, an emotional trauma (my daughter), an operation, an illness, a medication (me), a change of medication (my Mum). Undoubtedly most, if not all of those people will experience something at some point in their life that could be the trigger.

Wheat has been modified and adapted over the last few centuries (and even more so recently) to grow in areas where it has never been grown or eaten before. Those, particularly genetically from the colder climes who have not inherited the genetic ability to cope with it are the ones who are most at risk.

If it is true that 35% of the population carry the genetic markers then it is quite logical to assume that they all, at some point, could potentially go through a situation in their life that would trigger Celiac out of hiding. Potentially and genetically, of course, it is already there - the biggest trigger is already there - gluten. Only those with the genetic marker who do not eat gluten will never develop Celiac Disease.