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Joyous

The Celiac Genes

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Brian, If I recall this correctly, you said you had a pseudomonas infection last May and you were taking levaquin for it. Hopefully it's cleared up by now. However, I do wonder if a pseudomonas infection could be the cause of your digestive ailments.

neesee

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I actually have no idea if I have been tested for Lyme disease or mercury toxicity. I should ask my doctor, especially about Lyme disease because one of my dogs had it.

I did have a pseudomonas infection last May, but the levaquin cleared it up, so I don't think that it is still affecting me.

But at least now I have some things to discuss with my doctor. So maybe we can figure something out. But honestly the whole thing is getting old and I'm so sick of the constant disappointments, so I'm not going to get my hopes up. But we'll see.

-Brian

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just found your discussion on a search. i was diagnosed with full-on celiac -- had the biopsy - villous III atrophy - also have both genes, HLA DQ2 and HLA DQ8. that was about four years ago i found out. i have done absolutely everything right since then. i've eaten a perfect gluten-free dairy-free diet of amazing whole homemade organic foods. i've only had 3 gluten "incidents" :-) in all those years. also, for more than 4 years, i stuck to a candida type diet and took a bit of nystatin most mornings and other anti-fungals from time to time. i ate very little starch or sugars of any kind. i hardly even ate fruit as that caused bloating

but still, after 4 years i have serious food allergies (more and more) and bloating and, i'm pretty sure if i were to be tested tomorrow, my small intestine would still look like mown down grass. to make matters worse, i started to develop terrible chemical sensitivity. to everything it seems!

again, even though i, a confirmed celiac in every way had stopped all gluten, i was still not getting better. i was getting worse.

well, last week i received a test back for heavy metals and lo and behold, i have some of the highest mercury and lead content of any human my several doctors have ever seen. (i'm starting the andy cutler protocol where it's small doses of chelators done frequently. it's a very disciplined regimen that seems best for my high amounts.)

that's my story, simplified. i stumbled on this site because i started getting curious to know if there was any correlation between villous atrophy and mercury toxicity. i especially wondered if one's gut get could damaged simply from toxic metals.. i haven't an answer yet but i CAN tell you that, at least in my experience, there's something more than gluten that will mess up your gut.

being the good celiac girl that i am i will end my post by emphasizing here that i DO think gluten is behind all of my woes (and probably most other people's woes) simply because, since it messes with everybody's gut, yeasts, bacteria, mecury, lead, arsenic, aluminum and what have you all have an open door into one's bloodstream.

gluten is surely to blame but i now think these other things have to be addressed as well if we are to recover our good health.

~robin

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Robin,

You may have Refractory Sprue, which is what I have. It is rare, but its defined as: presence of persistently damaged villi in the small intestine that are not repaired after the gluten free diet has been successfully initiated and/or maintained, an increased presence of intraepithelial lymphocytes (IEL) in the small bowel, and severe malabsorption. If you still have flattened villi, it may be a possibility. I hope you feel better soon,

-Brian

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Robin with the mercury toxicity, I'd also check out lyme. There seems to be a high correlation there.

Brian, I don't know about lyme with your symptoms, but it could be worth checking out. Not everyone, but in some people the lyme really attacks the gut. Also some lyme coinfections are more likely to hit the gut. When you check out your labs about this, be sure you have had a test panel through Igenex, it seems the most accurate lab. You can visit the lyme disease thread on this forum for more info too.

If you do have it, I also have no idea if it could interact to cause or worsen the refractory sprue.

I am pretty sure I have celiac, plus have lyme and mercury toxicity. I am homozygous for DQ2. However, I haven't had biopsy or blood testing, just Enterolab since I'm overseas. After reading your post, I am thinking it could be still working checking to see if I have flattened villi, especially if my malabsorption hasn't improved when I check it next month.

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If I haven't been tested already for Lyme, I'm sure my doctor will test me for it. I'll tell her about Igenex. I'm sure if I did have it, it could definitely worsen the refractory sprue. Especially if it affects the gut.

I would say in your case it is definitely worth checking out if you have flattened villi. There's a good possibility that you do have flattened villi if you still have malabsorption. Do you have a good doctor who could help you out with this?

-Brian

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Robin,

You may have Refractory Sprue, which is what I have. It is rare, but its defined as: presence of persistently damaged villi in the small intestine that are not repaired after the gluten free diet has been successfully initiated and/or maintained, an increased presence of intraepithelial lymphocytes (IEL) in the small bowel, and severe malabsorption. If you still have flattened villi, it may be a possibility. I hope you feel better soon,

-Brian

hi brian, yes, my mainstream celiac doctor, a couple years ago, told me that he thought i had a "refractory" case. what I'M hearing him say though is that he is giving up; shoulders raised, hands in the air, "mystery illness" pronouncement, (once again,) "have a nice day" and "next?"

i mean, simply knowing the name, or simply knowing that my body isn't healing like he told me it would is no consolation and has only sought to made me look elsewhere for the why? of it...

that's how i found the other M.D., an integrative guy who helped me conquer the enormous yeast/mold population, bacterial infections, parasites and now metals i built up and housed over the years.

and throughout all this we've steadily been considering lyme and i've completed atreament with some homeopathics that helped me a great deal a year ago.

and now, to that end, i'm using something called sycirque (sublingual and lotion) and san pharma firmus (both from an evolution of the pleo remedies) to help my body search out and eliminate any residue of lyme or any other pathogen that might be the cuprit. having very recently completed this array of remedies, i get to move up to the next step in treatment. as mentioned, the stuff relies on a sublingual, a suppository at night and a cream you put on the liver points. interesting and i have absolutely no idea if it's working.

of course the heavy metal toxicity is firmly in my sites at the moment.

thanks for your kind wishes. i hope you feel better soon, brian.

~robin

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Robin with the mercury toxicity, I'd also check out lyme. There seems to be a high correlation there.

I am pretty sure I have celiac, plus have lyme and mercury toxicity. I am homozygous for DQ2. However, I haven't had biopsy or blood testing, just Enterolab since I'm overseas. After reading your post, I am thinking it could be still working checking to see if I have flattened villi, especially if my malabsorption hasn't improved when I check it next month.

hi mftnchn, having gone through the biopsy required for gaining the "marsch stage III villous atrophy" designation, i must say, in retrospect, it was, in my opinion, rather unnecessary and highly invasive. it's a pretty decent sized surgery, further messes up an already struggling system. and to what end? it will probably tell you something you already know...

as i said, i'm new here and have learned a lot since i got snapped up into the american medical establishment's pronouncements. this is no big news here when i say i quite honestly think that gluten isn't good for anybody, especially those with the hla genes. genes or not, if you don't eat it and then eat it and feel bad for awhile, maybe just a day or two, then you probably have some stage of gluten enteropathy. if you eat a mere grain of it and feel terrible for a month then you probably have a full-on problem, as i do, and probably have one or all the genes. you probably also have some stage of villous atrophy.

gluten intake has become quite easy for me to control. i don't even miss it. that's why i'm rarely on boards anymore. i'm definitely out of the loop on the politics and group-think about celiac these days so please forgive me if i sound glib.

what a person calls celiac or doesn't call it makes little difference to me these days. i think that widespread damage caused by gluten leads to all sorts of widespread damage by other things. it might be metal, it might be yeast/mold, parasites, bacteria, allergies, chemical sensitivities.. i've had them all because i was a rip-roaring wheat munching 52 year-old when i simply caved in with illness and health disasters. some of you may remember me from the native nutrition, gfcfnn yahoo group but i had poisonings, an h. pylori bacterial infection that put a hole in my stomach, the works. 911 on the speed dial i used to say... i finally had to move way up to the mountains to try to stay alive. get a handle on things. i was really sick.

i'm doing great compared to then but am now plagued by the continued lack of energy, weird food allergies and chemical sensitivities (the worst of the three).

but i continue to feel that if i peel each layer away, one tiny bit at a time, my so-called refractory sprue/celiac will be a thing of the past and, once again, i will be able to tell the doctors that they were oh so wrong. i can heal this thing.

~robin, sorry to get on a soapbox at the end thar... :-P

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i especially wondered if one's gut get could damaged simply from toxic metals.. i haven't an answer yet but i CAN tell you that, at least in my experience, there's something more than gluten that will mess up your gut.

The answer is yes...heavy metal toxicity can cause serious damage to the gut and to the intestinal lining. Mercury vapor (from amalgams) is especially damaging to the gut.

I do not believe...nor have I ever seen evidence that mercury toxicity can cause blunted villi which is specific to Celiac Disease. HOWEVER, mercury toxicity can and does lead to autoimmunity. Celiac is an autoimmune disease and can therefore be triggered by the stess and the burden to the immune system caused by heavy metal toxicity and the resulting prevelence of pathogenic organisms (yeast, parasites, bacteria etc.).

In my opinion if there is lack of healing with a firm diagnosis of Celiac Disease....there is very likely more going on which is preventing the body from healing itself. A body which is heavily burdened is not able to heal as efficiently as a body which is not dealing with multiple issues.

Personally I do not see refractory sprue as an "answer".....its more of a question I would think. If the body doesnt heal....WHY is that?? Why would some of us heal while others do not?? I think if we search for the answers we will find them...and not usually in the office of a mainstream Dr....unfortunately thats the reality of it.

My own story is that I tested negative for Celiac (bloodwork) after I'd already been on the diet. I did not feel that the diet was doing for me what it should....if the *only* diagnosis were Celiac. I did Enterolab testing and was positive across the board...including tTG and a very high malabsorption score.

Still, I did not recover on the diet...nor did I recover with the removal of more and more foods. I *did* get better in many ways...but certainly not recovered...and my goal is to NOT be sick. After several months of a restricted diet (gluten-free, anti-candida, etc) I had the endoscopy...because I still suffered from malabsorption and numerous food intolerances. The GI reported "text book perfect" villi.

I do not carry either of the main Celiac Genes...although I do have one DQ1 gene...which is the gene some biopsy proven Celiacs carry...without having either DQ2 or DQ8.

Still....in my mind...IF I had Celiac...or IF gluten were the cause of my problems...why was I not getting better??

I did not give up...nor did I accept the "labels" I was receiving from the mainstream Dr.'s. I looked elsewhere and I followed my gut instinct....knowing that *something* had happened to suddenly cause my body to be in so much distress. I knew it happened after having some dental work done....and I also knew that I had aquired a serious and chronic yeast overgrowth in my gut.

In the end mercury was the cause of so much damage to the gut ecology....creating a stituation of dysbiosis. My heavy metal burden is high...my gut is overrun by pathogenic organisms....especially yeast and parasites.

This situation has affected every body system (as leaky gut typically does)....and I did develop autoimmune disease (Graves) early on...before my health really began to decline.

Although I do not have Celiac and I do not have flattened villi...I DO have a very pourous and leaky gut....which causes many of the same disabling symptoms. The damage to my gut has not healed even on the strictest of diets. Clearly, there are things that are getting in the way. Yeast is one of those things and parasites are another. I've previously tested positive for bacteria overgrowth (c.diff) and undoubtedly I have many pathothens thriving in my gut right now.

In my case I do not feel that gluten caused the cascade of events that occured. I do believe that it was the mercury and as a result I became intolerant to gluten and nearly ALL foods, chemicals and other environmental toxins.

Simply stated, my liver is maxed out...totally overwhelmed by heavy metals and the toxins produced by parasites, yeast, etc. My body cannot heal without ALOT of help....my immune system is very stressed and highly reactive.

i'm doing great compared to then but am now plagued by the continued lack of energy, weird food allergies and chemical sensitivities (the worst of the three).

I am also doing great in comparison to where I was 2 years ago...or even 1 year ago. I have my energy back (most days) but I am still very seriously hindered by the food and chemical intolerances.

but i continue to feel that if i peel each layer away, one tiny bit at a time, my so-called refractory sprue/celiac will be a thing of the past and, once again, i will be able to tell the doctors that they were oh so wrong. i can heal this thing.

I am very much in agreement. I think you WILL be able to tell the Dr.'s who labeled you with refractory sprue that they were INDEED wrong. Your body can heal itself as long as you remove those burdens...as you stated...one layer at a time. :)

I am currently doing chelation for the heavy metals. I am not doing orals or anything similar to Andy Cutlers protocol...although I was on DMSA for a short time. I am doing IV DMPS every 2 weeks and seem to be excreting the mercury quite well. My Dr.'s have been very pleased. I worked with them for a little over a year before they felt confidant that I could handle the treatments.

The gut problems will persist as long as mercury is an issue...yeast and parasites can be treated but they will always come back as long as the environment is favorable for them. Mercury can and does prevent healing as it promotes the growth of pathogenic organisms and keeps the body in a state of chronic stress and chronic illness.

I will continue to treat these infections until I have unloaded the heavy metals and my immune system is less burdened and fully capable of fighting off these infections on its own.

I am also taking Ketotifen...an antihistimine which promotes healing in the gut. It has been used to treat leaky gut with very good results...but of course the underlying issues have to be addressed to keep the body in a healthy state.

http://www.collegepharmacy.com/AMTrx/Ketot...%20Protocol.pdf

http://www.pubmedcentral.nih.gov/articlere...i?artid=1379535

I also was found to have the Lyme bacteria as well as one parasitic co-infection present. In my case they were not the "main" issue and are not contributing much (if at all) to my symptoms. However, they ARE another "layer" and they are being treated.

Even though I requested my mainstream Dr.'s test me for mercury, yeast, parasites and Lyme...I did not get anywhere with them after 3 years. I only got sicker.

They did test me for mercury with a blood test and an unprovoked urine test...which I later learned through research was NOT a valid method of testing for mercury stored in the body.

They did test me for pasrasites with a stool test...I think they checked for maybe 3 parasites...when there are literally thousands. I have since learned that parasite testing is not at all adequate here in the US. I was recently diagnosed with a beef tapeworm through an alternative method of testing to detect pathogenic organisms in the body.

Mainstream Dr.'s totally dismissed the idea of candida overgrowth...stating that this condition does not exist. This was only a couple years ago but thankfully I believe this problem is finally starting to get some recognition....as it is known to be prevelent in autistic children. I was found to have high levels of yeast with alternative testing and a blood antibody test. The antibodies I had for intestinal yeast (candida) were extremely high...about 8 times the normal range.

I was refused Lyme testing and totally ridiculed for even suggesting it. Had they tested me they would have not used a lab with a high sensitivity... the results would have been unreliable.

I've learned that in order to get answers when symptoms are lingering we really have to take charge, seek the right Dr.'s and not give up hope.

If I DID carry one of the Celiac genes with a firm diagnosis of Celiac....and if I WAS facing a diagnosis of Refractory Sprue....I would definately be looking for answers elsewhere.

I would be doing just as Mydogisdewey is doing...and I would prove those Dr.'s wrong. They were the ones telling me I needed to learn to live with my symptoms...that there was no real identifiable cause for all that I was going through. Since I've been seeing Integrative Dr.'s who specialize in detoxification of heavy metals I believe I have proved my previous Dr.'s wrong in every way. :)

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