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Hla-dq 1,1 (subtype 6,6)

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My daughter was dx'd with Lyme Dz in 2004 and I wonder if I may carry it, too, as we lived in a very populated "deer tick" zone. And I had mercury amalgams removed unsafely to boot. My dad has MS (and is a dentist and obviously is DQ1). Soo lots of history behind all of this

I would definately look into Lyme...absolutely. You dont even have to live in an endemic area to be carrying the bacteria. All of the doctors I see are considered to be LLMD'S (Lyme Literate Medical Doctors)....I recall hearing one Dr. say that over 90% on the East Coast have been exposed...over here on the west it was something like 45% or 60% (I cant remember now).

Anyways, this does not mean that every one of these people will develop symptoms of the disease. It all depends on the state of the immune system. If the immune system remains strong and not too heavily burdened...then it is capable of keeping Lyme in check.

The problems start to develop as things pile up. Stress is a huge factor....when you are having periods of stress your immune system is weakened...and during that time any "hidden" infection can gain a little ground. The immune system also deals with a huge amount of toxic exposures everyday...there's mercury, chlorine, an endless amount of chemicals, pesticides, food additives, molds, etc. etc.

Mercury doesnt leave the body quite as easily as some of the other toxins or metals and it can impair the body's ability to detoxify itself. Lyme Disease is not so much about the bacteria....its more about the toxins produced by the bacteria (neurotoxins). The higher the bacteria load...the more the body is dealing with these toxins. Both chronic Lyme and mercury have the ability to impair detoxification....as a result most people presenting with symptoms will be dealing with both. Its the rule rather than the exception.

In my opinion these chronic health problems are always about a toxic overload. Chronic Lyme is multifactorial and it is all about toxins and infections. People with chronic lyme have several infections....not just the Lyme itself. This is because as the body becomes more toxic the immune system is less able to deal with everything coming its way...it is not able to fight off every pathogen. The gut is usually affected because the balance of good/bacteria eventually is upset...and then there are parasites, yeast, bad bacteria....those things become the majority rather than the minority. It all has a profound effect on the state of our health.

Leaky gut can be a direct consequence of this chain of events. Toxins themselves can damage the intestinal lining (making it permeable), the infections can damage the intestinal lining, the food intolerances can contribute to that inflammation, etc.

When the intestinal environment is out of balance and unhealthy....digestion becomes impaired. Undigested food leads to inflammation. Undigested food which leaks into the bloodstream leads to antibody production.

Also enzyme systems can become blocked or impaired as a result of toxicity. Mercury is known to have the ability to block any enzyme system in the body. This includes the enzyme which breaks down gluten and casein (DPPIV).

This is just an example of things that can go wrong when there is an underlying issue which is chronic and unidentified. Some people can go on without ever having these problems....others will end up with chronic symptoms. Who gets sick and who doesnt depends on genetics, amount of stressors the immune system is faced with, lifestyle, etc.

Genetics is a big part of it.....which is why several members of the same family can develop similar problems with chronic disease symptoms. It is not uncommon for several or ALL members of the same family to have symptoms caused by chronic Lyme. Some people are more susceptible to these toxins than others. Its the same with mold....while these things can be harmful to anyone some people have an even greater susceptibility due to genetics. So their body may have a harder time getting rid of these toxins. Mercury is another one...it is toxic for everyone but people with a certain gene have greater difficulty excreting it. Genetics have a role in everything.

Lyme is frequently misdiagnosed...MS is one of the conditions which presents with symptoms identical to Lyme. There is really no way to know for sure that MS is not Lyme unless Lyme has been thoroughly investigated and ruled out. Lyme can even cause the same white brain matter.....some people originally diagnosed with MS have resolved these issues with treatment for Lyme.

Fibromyalgia, CFS, Parkinsons, Rheumatoid Arthritis, MS, Lupus, etc....all of these conditions (and more) can be undiagnosed Lyme...and all symptoms associated with these diseases have been resolved in patients who later discovered that they had Lyme.

So yes, definately look into this....dont wait until more symptoms appear. The more symptoms that appear...the more likely it is that the immune system is becoming more and more overwhelmed.

My symptoms over the years have been neurologically based, but I thought all were attributed to thyroid: tingling hands and feet, months of extreme fatigue on and off, unreplenishing sleep, heart palps, hot flashes, mild dizzy spells. Right now, I feel pretty darn great compared to all the years of that. Again, I thought I was resolving issues with my thyroid all along when the gluten thing "hit" and now soy and casein. As you describe, more things keep developing as I resolve others. When will it end?

My symptoms were neurologically based as well. My typical thyroid symptoms were sweating, feeling "wired", hairloss, headaches (with pressure behind my eyes), heart palps, huge appetite and trembling. I got the tingling hands and feet later on....but those symptoms I've never attributed to the thyroid.

My thyroid symptoms were never severe and for the first 3 years they were easily resolved. I didnt think much of my thyroid condition because I guess I felt that it wasnt interfering with my life in any way....and I rarely had any symptoms. It was only during times of high stress. I now know that stress itself can cause the gut to become more permeable....so I'm wondering if during those time my gut was becoming more leaky and stressing my immune system to a greater extent.

I dont know what exactly happened that pushed my body too far....but at the end of 2002 (and after my dental work) I started to get very severe symptoms of Graves and it was enough that I couldnt function anymore. Nothing helped...not the meds and not the RAI. I've had all of these ongoing problems ever since. I'm pretty sure I had some minor GI stuff going on but it paled in comparison to the neurological symptoms...so I didnt pay attention to anything going on in my gut.

Its all linked though....if the gut is not healthy....other areas of the body are affected....including the brain. The GI tract is where a large percentage of our immune system resides....so its crucial to keep the gut healthy. This is very apparant in Autism....the leaky gut problems have devestating effects on the immune system and brain function.

I spent alot of time totally focused on my thyroid. I adjusted meds, switched brands, tried T3/T4 combo, etc...nothing worked. I just thought it all HAD to be related to my thyroid because I wasnt aware of any other health problems. I did suspect mercury or Lyme but at the time I had no doctors who were knowledgeabe about that and noone who was willing to take me seriously. I was basically labeled "hypochondriach".

I had many arguements with my Endocrinologist because I felt that regardless of what the labs were saying things couldnt possibly be right....because I still had all of these crazy symptoms. He kept telling me that he'd never seen anything like this in his Graves patients and that whatever was going on could not be attributed to my thyroid. It had to be something else. It took me awhile to accept that...but I did and I moved on. I do believe he was right. There are lots of other things going on now. I think that the thyroid problem put my immune system under a great deal of stress....and during that time other problems piled on top of it.

My immune system took alot of hits during a short time span. My Dr.'s have told me that any one of those events could have been enough to cause problems....but as it happened my immune system was not given the opportunity to recover before being hit with another blow. So too much going on at once and it got to the point where it was no longer possible for me to recover without alot of intervention. I just cant get back up with all of these things pulling me down.

I just had some concern that I wouldn't be taken seriously on this board, or others if it seems my only concern is hair loss. I should be ashamed to admit that it is the one thing that pushed me to the research mode, but now that I have so much info on the amount of damage my system is carrying, I am even more worried about my health that it may seem, and am very serious about getting better.

I dont think *any* symptom is insignificant...so hairloss can be an indication that the body is not in a healthy state. I should say that I'm ashamed that I *didn't* go into research mode back when headaches and hairloss were my only symptoms. I took my health for granted. I wish I'd been more proactive when I was at the same place you're at now.

I just want to say that its great that you are showing concern for your health now and that you are serious about getting better. I admire that. I think it can only help us to become more informed....however, I hope you dont worry TOO much over the health problems because that can also have a negative effect on our health.

There were times when I would overwhelm myself with info. and then have nightmares...or just spend alot of my time worrying about all of the possibilities. My Dr.'s LOVE that I am so proactive.....but one of them did tell me that if I am getting to the point where the research is actually stressing me out...he would prefer that I take a break. So at times I have done that....just so that I dont get overwhelmed.

I believe knowledge is power...the more I've learned the more it has helped me. I just have to do it at my own pace. Espcially in the beginning everything was new to me and everything seemed scary.....mostly I'm past all of that because the more you understand things the less it is "foreign" or "scary".

One of my Dr.'s also told me that its the patients who are proactive and involved that have the greatest chance for recovery. They are the ones who are most likely to regain their health. The Dr.'s can only do so much....alot of it is up to us. He said the patients who are uninvolved and just waiting for things to "happen"....usually just keep waiting.

My plan is to investigate Lyme and Mercury Toxicity as the primary sources of immune attack. As I am double DQ1, I am very fearful of developing MS like my father, especially if I also have mercury in my system as he surely does.

I think this is a good plan. Hopefully you will read through the first pages of the Lyme Disease thread as there is some good info. there about the testing as well as how to go about finding a good LLMD.

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Linda...I would definately be the LAST person to complain about long winded posts! :lol:

I'm pretty happy when other people have alot to say....makes my lengthy posts not stick out quite so much. ;)

Anyways.....I responded to your post earlier. It was a lengthy response which I deleted by accident before posting. *sigh*

Its not the first time I've done that and I'm sure its not the last. But I'll be back later and I'll probably reply in sections so that I dont lose a whole post again. :)

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Linda...I would definately be the LAST person to complain about long winded posts! :lol:

I'm pretty happy when other people have alot to say....makes my lengthy posts not stick out quite so much. ;)

Anyways.....I responded to your post earlier. It was a lengthy response which I deleted by accident before posting. *sigh*

Its not the first time I've done that and I'm sure its not the last. But I'll be back later and I'll probably reply in sections so that I dont lose a whole post again. :)

LOL...about the long winded :lol: , thanks!!

Sorry about the lost post :( hate it when that happens, I'll be checking back in the morning, have a great night...:)

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Linda,

Hi, I have done tons of research on genes and gluten.

You state you are double DQB1, but according to your signature with your test results you are not. The B1 part you are refering to means Beta, meaning the Beta part of the gene. The gene also has an Alpha part, but enterolab does not test for that.

You have DQ 1 subtype 6(also known as DQ6) and DQ 3 subtype 7(also known as DQ7).

The celiac genes are DQ2.5(known as DQ2) and DQ8

The thing is DQ 2 can be created by two seperate genes. These genes are DQ2.2 and some of the DQ7 genes.

MOST celiacs have DQ2 or DQ8, but not all. In one study I read about, the Celiacs without DQ2 or DQ8 had DQ2.2(4%) or DQ7(2%).

So you have half of the celiac gene. Without knowing your parents genes, your sister could have had DQ7 AND DQ2.2 to form the whole celiac gene(if one of them had DQ2.2).

40 years is a long time to be sick. I hope you get better soon. I had symptoms for 23 years(I am only 32). I have the half celiac gene DQ2.2 and DQ5. I have tested many foods and only have problems with gluten and dairy. I won't try beef or pork to see because I don't want to eat them even if I could. I am not 100% perfect, but I am soooooo much better. It has been over 5 months for me. I don't know if I have Celiac or some underlying problem. My doctor thinks I have celiac.

For those of you with DQ5: DQ1subtype 5(DQ5) was the only gene in 0.5%(very small I know) of the celiacs studied, but DQ5 was also found in a large percentage of celiacs with the DQ2.5 gene.

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Linda,

Hi, I have done tons of research on genes and gluten.

You state you are double DQB1, but according to your signature with your test results you are not. The B1 part you are refering to means Beta, meaning the Beta part of the gene. The gene also has an Alpha part, but enterolab does not test for that.

You have DQ 1 subtype 6(also known as DQ6) and DQ 3 subtype 7(also known as DQ7).

The celiac genes are DQ2.5(known as DQ2) and DQ8

The thing is DQ 2 can be created by two seperate genes. These genes are DQ2.2 and some of the DQ7 genes.

MOST celiacs have DQ2 or DQ8, but not all. In one study I read about, the Celiacs without DQ2 or DQ8 had DQ2.2(4%) or DQ7(2%).

So you have half of the celiac gene. Without knowing your parents genes, your sister could have had DQ7 AND DQ2.2 to form the whole celiac gene(if one of them had DQ2.2).

40 years is a long time to be sick. I hope you get better soon. I had symptoms for 23 years(I am only 32). I have the half celiac gene DQ2.2 and DQ5. I have tested many foods and only have problems with gluten and dairy. I won't try beef or pork to see because I don't want to eat them even if I could. I am not 100% perfect, but I am soooooo much better. It has been over 5 months for me. I don't know if I have Celiac or some underlying problem. My doctor thinks I have celiac.

For those of you with DQ5: DQ1subtype 5(DQ5) was the only gene in 0.5%(very small I know) of the celiacs studied, but DQ5 was also found in a large percentage of celiacs with the DQ2.5 gene.

Fedora, thank you, Geez, talk about confused. Read below I think it's the standard paragraph in the results, and please tell me what it means when it says that I have two copies of a gene that predisposes to gluten sensitivity.

Interpretation Of HLA-DQ Testing: Although you do not possess the main HLA-DQB1 genes predisposing to celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

I am certain that it is a part if not all of my problem. I hate being long winded, just ask Rachel, but here goes.

In October of last year after reading about grains and the possibility that they could be making us sick. I stopped gluten, and it took a while, and it was very insidious but my symptoms, gradually got better. In May, of this year, before I went to Mexico for a family wedding, I was feeling really good, this was before I sent in my specimen to Entero Lab, so I had no medical/test confirmation that gluten was my problem.

I went to Mexico, fully intending to stay gluten-free.... But OMG I was in Mexico, and within a day or two I had convinced myself...(you can call it a stupid moment, I have a whole history of those kinds of moments in my life)....that I could have gluten, after all there was no documented evidence that that was my problem. So, I had beer, and tamales, which might have been ok because they use cornmeal supposedly, unless of course I have a problem with corn...see long winded, sorry....then I had bread, pasta, desert, no symptoms....I THOUGHT...right away, actually big fatigue set in, I began to retain water...my feet swelled up like balloons, I gained 4 pounds of fluid, hip pain was coming back, but all of these symptoms could be easily attributed to other things and in fact it wasn't until they returned and I recognized them from before I got off the gluten, that I realized they were from gluten, if that makes sense. I am not a heavy person 5'7 127 pounds, so the water weight showed quickly, and the brain fog....OMG, my 76 years old mother had to keep me straight...by the time I came home I was PROFOUNDLY fatigued, I was waking up exhausted, it was hard to go from room to room, I had to rest after a shower, chewing my food was work, the fatigue made me feel almost anxious inside for rest, the scariest symptom was a feeling of having a boot on....numbness up to past both of my knees, I thought this time I had really done it.

I had never had that numbness before...anyway it took 5 weeks to the day to recover. I had eliminated everything from my diet except chicken soup with bones, and was in tears the night before I woke up feeling much better. My husband looked at me the night before and said he could see the tiredness in my eyes and he said "What can I do?"....I replied that I had already stopped everything, gluten, soy, dairy, corn, etc...and didn't know what else to do....then felt sorry for myself and started crying, we cried together and agreed it was time to go to the doctor to get some bloodwork....but thank God I woke up the next day and felt a bit better, and the next even better and I've felt better ever since...since June 16th, most of my symptoms have subsided. I got my results on June 19th, but had already decided that it didn't matter what my results said, I knew Gluten was causing a HUGE problem in my life.

I have consistently had energy that I haven't had probably since before high school. I am very afraid to eat or get accidently glutened. I know now that eating out isn't worth it...I hate being different but we don't get to pick these things, and it could be worse....cancer, drugs, chemo, etc.

I began putting pieces together that fit my sister too...I think there is a connection, between leaky gut and MS, and many other probably otherwise labeled diseases.

Fedora can you tell me anything else about my genes?

Also my IgA was elevated, malabsorption test was 647...it all leads to the same thing for me. I know I cannot eat Gluten, and as Rachel says, there may be more to it, but I won't EVER willingly eat Gluten again. I told my husband not to ever let me forget how sick I got after reintroducing it....it was way worse than I felt before....he say's he won't because it hurt him to see me that way....but I don't think I will ever forget. I am keeping a daily journal now of everything I eat and how I feel. I seem to feel best on Chicken soup....:)

Thank you so much Fedora for taking the time to explain that to me and any other information you have will be much appreciated...:) Sorry for the long story...Linda

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The problems start to develop as things pile up. Stress is a huge factor....when you are having periods of stress your immune system is weakened...and during that time any "hidden" infection can gain a little ground. The immune system also deals with a huge amount of toxic exposures everyday...there's mercury, chlorine, an endless amount of chemicals, pesticides, food additives, molds, etc. etc.

Mercury doesnt leave the body quite as easily as some of the other toxins or metals and it can impair the body's ability to detoxify itself. Lyme Disease is not so much about the bacteria....its more about the toxins produced by the bacteria (neurotoxins). The higher the bacteria load...the more the body is dealing with these toxins. Both chronic Lyme and mercury have the ability to impair detoxification....as a result most people presenting with symptoms will be dealing with both. Its the rule rather than the exception.

In my opinion these chronic health problems are always about a toxic overload. Chronic Lyme is multifactorial and it is all about toxins and infections. People with chronic lyme have several infections....not just the Lyme itself. This is because as the body becomes more toxic the immune system is less able to deal with everything coming its way...it is not able to fight off every pathogen. The gut is usually affected because the balance of good/bacteria eventually is upset...and then there are parasites, yeast, bad bacteria....those things become the majority rather than the minority. It all has a profound effect on the state of our health.

Leaky gut can be a direct consequence of this chain of events. Toxins themselves can damage the intestinal lining (making it permeable), the infections can damage the intestinal lining, the food intolerances can contribute to that inflammation, etc.

I had no idea that Lyme could play that big of a role. I guess that's totally naive. Stress was a huge factor in my health. And the multiple layers are front and center. Within 2 years I had a complicated pregnancy, delivered my son, 12 weeks of screaming cholic and no sleep, my husband left, I spent 10 months alone with 2 kids and raging Grave's Dz, had my mercury fillings out unprotected, prepped house and sold by myself, packed and moved 2 kids and house by myself, was probably exposed to Lyme as this is when my dtr got it (Baltimore), lost all my hair, had RAI, filed for divorce, and had 2 surgeries (unrelated). Another thing I did to myself was majorly stress my system by self-medicating with Armour Thyroid... to the tune of 10 grains per day. I honestly believe that I was not absorbing the hormones, but at one point I started and my nerves were so "wired", I was tremoring while asleep. I am ok now with the Armour, but have to chalk that up to stupidity.

I spent alot of time totally focused on my thyroid. I adjusted meds, switched brands, tried T3/T4 combo, etc...nothing worked. I just thought it all HAD to be related to my thyroid because I wasnt aware of any other health problems. I did suspect mercury or Lyme but at the time I had no doctors who were knowledgeabe about that and noone who was willing to take me seriously. I was basically labeled "hypochondriach".

I had many arguements with my Endocrinologist because I felt that regardless of what the labs were saying things couldnt possibly be right....because I still had all of these crazy symptoms. He kept telling me that he'd never seen anything like this in his Graves patients and that whatever was going on could not be attributed to my thyroid. It had to be something else. It took me awhile to accept that...but I did and I moved on. I do believe he was right. There are lots of other things going on now. I think that the thyroid problem put my immune system under a great deal of stress....and during that time other problems piled on top of it.

I experienced this exact thing, hence the self-medication. All of my issues started with RAI and so I KNEW everything had to be related to thyroid. I was blind but now I see! I think I'll cut back more on the Armour with my next labs. I've been pushing not to lower it too much, but it may relieve my system. My free T3/T4 ranges are at the high end of normal, but my TSH is 0. I want to move on that very slowly b/c I feel terrible (even more so) when I am hypothyroid.

And lastly, I was either glutened, caseined, or soyed on Friday night as I spent the day yesterday with extreme fatigue, scalp itching and hand tremors. That is the first time that I've had symptoms after going gluten-free,cf,sf. Now I know what happens and I see the neuro outcome.

Hanging in there.

Tracy

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May I reach out to you all and ask for help deciphering my results. I can tell I have to eliminate soy, casein, gluten (have been gluten-free x 4 months), and yeast (?).

I have autoimmune thyroid disease (Graves AND Hashimotos antibodies) and my health trouble started immediately after having radioactive iodine ablation of my thyroid.

I am blessed to say that my only symptoms are major, constant hair loss and acne. I am 38, female. Acne cleared briefly when I went gluten-free. I've been CF, SF x 5 days and again acne is clearing. I realize these symptoms are nothing compared to the pain most on this board experience and I bow to that level of involvement. Nonetheless, it seems I am (was) heading right down the same highway as those with more severe symptoms?

Please interpret based on your experiences the following:

Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Antigliadin IgA 78 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 46 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein! (cow's milk) IgA antibody 54 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0602

HLA-DQB1 Molecular analysis, Allele 2 0602

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

C) Egg, Yeast, and Soy Food Sensitivity Stool Panel

Fecal anti-ovalbumin (chicken egg) IgA antibody 8 Units (Normal Range <10 Units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 10 Units (Normal Range <10 Units)

Fecal Anti-Soy IgA 17 Units (Normal Range <10 Units)

My father has MS and drinks Pepto Bismol by the gallon for as long as I can remember. He also is a dentist (Mercury!!) and violently denies that he could need a gluten-free diet... stubborn.

Thank you so much.

Tracy

Tracy,

Have you seen this presentation. With a family history of MS you might want to eliminate all Lectins according to this guy. Also if I am interpreting this correctly, according to slide number 34 you do have one of the genetic genes, though I am NO expert at this, as I have been misunderstanding mine all along. I am stopping all Lectins along with Gluten of course.

http://wildhorse.insinc.com/directms03oct2007/

Linda

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Tracy,

Have you seen this presentation. With a family history of MS you might want to eliminate all Lectins according to this guy. Also if I am interpreting this correctly, according to slide number 34 you do have one of the genetic genes, though I am NO expert at this, as I have been misunderstanding mine all along. I am stopping all Lectins along with Gluten of course.

http://wildhorse.insinc.com/directms03oct2007/

Linda

PS....he implies that removing these foods can stop the disease, so nothing to lose here...yes?

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hi Linda,

According to Enterolab, all genes except DQ4 are linked with gluten intolerance. And DQ2.5 and DQ8 are celiac genes.

No other research I have seen supports this entirely, but bits and pieces of research support this but have not been accepted by mainstream medical people. This is because it represents such a very very small number of people who have been diagnosed celiac by biopsy without the two main genes. Mainstream medical people do not address gluten intolerance, although there is PROOF of it in individuals with DQ2.2, DQ7, and DQ5.

What I have read is a link with DQ9 and celiac in Japan.

A link with DQ5 and gluten neuro problems and DQ5 coexisting with celiac genes in celiacs. Also DQ5 in Sardinian people with celiac disease.

Also DQ 2.2 and DQ7( both half celiac genes) have been seen in the small percentage of people who have celiac without the 2 main genes. Most celiacs without DQ2.5 or DQ8 have one of these genes alone. Also these two have been shown to cause a gluten reaction even if it does not cause villi damage.

For you:

DQ6 has been seen in the celiacs in latin america who did not have either of the celiac genes. (very small percentage)

For you DQ7:

" Our data do not support an earlier finding that HLA-DQ7 is a nonsusceptible molecule (2). In fact, DQ7 was present in 50% of our celiac disease patients in the absence of the heterodimer and of the DRB104 alleles. Because the DQ7 molecule is very similar to the DQ8 molecule, it could alternatively present similar gluten-derived peptides to restricted T cells (17). DQ7 has been detected in a few celiac disease cases in the absence of DQ2 but in association with the DRB104 alleles (18). "

Since I have DQ2.2(the nonceliac DQ2 gene) I was sooooo confused. That is why I researched it. DQ2.2 does cause gluten reactions, but not usually to the extreme that causes villi damage. The same is true for DQ7. But every once in a while it does pass the threshold and cause villi damage. I didn't have blood work or biopsy, so I do not know what those results would have been. My question is that if I am having a reaction to gluten, even without villi damage, why is that not important to doctors too? I know that even if I do not have any villi damage, I would NEVER want to go back to gluten. no way.

I would give it some time, then if you don't feel completely better then you can look into other things. You could be just gluten intolerant based on your DQ7 gene. But maybe not. I had problems with digestion at first, but now those things are fine. IF I do have something else going on with me,it is not horrible. I do plan on getting tested for Lyme at some point though because my DD got it here 6 years ago on our land. I have a spine joint issue that my DR says is genetic :( But just in case

I wrote more than you asked for, but thought someone else might want to know all this stuff. I hope it was not confusing. sorry if it was

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hi Linda,

According to Enterolab, all genes except DQ4 are linked with gluten intolerance. And DQ2.5 and DQ8 are celiac genes.

No other research I have seen supports this entirely, but bits and pieces of research support this but have not been accepted by mainstream medical people. This is because it represents such a very very small number of people who have been diagnosed celiac by biopsy without the two main genes. Mainstream medical people do not address gluten intolerance, although there is PROOF of it in individuals with DQ2.2, DQ7, and DQ5.

What I have read is a link with DQ9 and celiac in Japan.

A link with DQ5 and gluten neuro problems and DQ5 coexisting with celiac genes in celiacs. Also DQ5 in Sardinian people with celiac disease.

Also DQ 2.2 and DQ7( both half celiac genes) have been seen in the small percentage of people who have celiac without the 2 main genes. Most celiacs without DQ2.5 or DQ8 have one of these genes alone. Also these two have been shown to cause a gluten reaction even if it does not cause villi damage.

For you:

DQ6 has been seen in the celiacs in latin america who did not have either of the celiac genes. (very small percentage)

For you DQ7:

" Our data do not support an earlier finding that HLA-DQ7 is a nonsusceptible molecule (2). In fact, DQ7 was present in 50% of our celiac disease patients in the absence of the heterodimer and of the DRB104 alleles. Because the DQ7 molecule is very similar to the DQ8 molecule, it could alternatively present similar gluten-derived peptides to restricted T cells (17). DQ7 has been detected in a few celiac disease cases in the absence of DQ2 but in association with the DRB104 alleles (18). "

Since I have DQ2.2(the nonceliac DQ2 gene) I was sooooo confused. That is why I researched it. DQ2.2 does cause gluten reactions, but not usually to the extreme that causes villi damage. The same is true for DQ7. But every once in a while it does pass the threshold and cause villi damage. I didn't have blood work or biopsy, so I do not know what those results would have been. My question is that if I am having a reaction to gluten, even without villi damage, why is that not important to doctors too? I know that even if I do not have any villi damage, I would NEVER want to go back to gluten. no way.

I would give it some time, then if you don't feel completely better then you can look into other things. You could be just gluten intolerant based on your DQ7 gene. But maybe not. I had problems with digestion at first, but now those things are fine. IF I do have something else going on with me,it is not horrible. I do plan on getting tested for Lyme at some point though because my DD got it here 6 years ago on our land. I have a spine joint issue that my DR says is genetic :( But just in case

I wrote more than you asked for, but thought someone else might want to know all this stuff. I hope it was not confusing. sorry if it was

Fedora...not more than I asked for, I am very hungry for this knowledge right now, thank you again...very much appreciated. I do think Entero Lab should have explained that better, but I am thankful period.

I saved your notes to a file, and I'm sure it's going to help sort out some of the confusion for others too. I've learned so much reading on these pages.

Yes, I think that's good advice to give it time, and I was thinking of getting tested for Lyme disease too. I did a bit of research on the DQ6 and found a link to myasthenia gravis....sounds a bit like my muscle weakness that improves with rest....especially where it said chewing got tiresome...sometimes my jaw gets so tired, I guess weak. That's another day...time for a break!!

BTW I like your signature..."Gluten kiss my grits" LOL...good one!! :) Linda

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particular HLA types seem to predispose for MG (B8 and DR3 with DR1 more specific for ocular myasthenia)

good to know...my dd is DQ1 subtype 6(DR1) and DQ5(some of the DQ5 genes are DR1). She got the DQ6 from her dad and the DQ5(ours is a DR1, some are not) from me. She has no symptoms, but her twin brother has a couple of the symptoms. In fact we are trying to figure out why he has double vision up close. The opthamologist said his muscles and eyes look fine. So what is causing it?????He also has slurred speech. He has not been gene tested yet.

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particular HLA types seem to predispose for MG (B8 and DR3 with DR1 more specific for ocular myasthenia)

good to know...my dd is DQ1 subtype 6(DR1) and DQ5(some of the DQ5 genes are DR1). She got the DQ6 from her dad and the DQ5(ours is a DR1, some are not) from me. She has no symptoms, but her twin brother has a couple of the symptoms. In fact we are trying to figure out why he has double vision up close. The opthamologist said his muscles and eyes look fine. So what is causing it?????He also has slurred speech. He has not been gene tested yet.

All of these health problems in our society are so tragic, and clearly, there has to be a link between the foods we eat and the diseases we get. But the scale of it is so enormous, and we know....even now, so little. Makes the phrase..."listen to your body" seem like an understatement!!!

Did you notice big differences when you stopped dairy? I thought I had done that and then found it in some things...geez these things are crossed over in so many other foods.

I'm sorry about your son's vision and speech, is he off the gluten too...can't see your signature when writing a comment...hopefully your kids are going to be way better off because of the diet changes you are making now.

These genes are only a small part of the story right? I mean we have a lot of other genes that we have no clue about right? Is there a way to get the whole story? That might be worth while....:)

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hey,

I did not know I had a problem with dairy until I had cut it out mostly, then I noticed it. The symptoms from dairy I have are only digestive, but I had tiny amounts accidentally twice with no problems. I would like to try it again in a few months. It has been 3 months without any except those two bits. I miss it and would love to have a little real cheese on pizza.

No my son is not gluten free. we did a test run gluten-free a couple of months ago and he was totally willing then. But we went back to normal eating with him some how. This was before we knew about his eyes. He gets leg pains, and sometimes knee and hip pain. His sister became a bigger concern and she did not want to go gluten free. She was moody, was not growing, and had mouth sores. After confusing tests results we took her off gluten. Things are going well for now,but it has no been long. I am wanting to get my son tested for a couple of things then go gluten free. now he is the one not into it and his sister is okay with being gluten free. funny twins!!!

There is so much not known about genetics. It is important to listen to our bodies and intuition

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No my son is not gluten free. we did a test run gluten-free a couple of months ago and he was totally willing then. But we went back to normal eating with him some how. This was before we knew about his eyes. He gets leg pains, and sometimes knee and hip pain. His sister became a bigger concern and she did not want to go gluten free. She was moody, was not growing, and had mouth sores.

Fedora,

Was it your dd who had Lyme??

Since we're talking about genes I just wanted to mention that there is some evidence that genetics make some people more susceptible to Lyme toxins than others. Which is why sometimes many family members are all suffering symptoms.

I know you plan on getting tested at some point but with your son having these symptoms it might be worthwhile to have him tested as well. It cant hurt......even while implementing the gluten-free diet. I know alot of people say to wait for healing...and I do agree that this can take some time. However, with no diagnosis the waiting can also allow for something like Lyme to become more of a problem.

I know I stress these things alot...but if gluten is the problem it can easily be resolved by removing gluten from the diet....however something like Lyme can become a very serious battle (with many additional problems) if left untreated. I hate to see people finding this out after the fact.

Also, Lyme and co-infections do contribute to leaky gut problems. On the Lyme boards many people do have food intolerances...especially gluten and dairy....but also problems with sugar/carbs caused by yeast overgrowth.

I think it would be great if you can get him back on the diet....but just to be safe (because of his symptoms) it probably wouldnt be a bad idea to have him tested. I've just seen too many people go through decades with unexplained symptoms only to find out later that they had this infection for all that time.

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What do you think of this LECTIN theory. I have to say I was very impressed with the presentation at the wildhorse link.

The leaky gut....yes I think so too...and that is what the wildhorse presentation spoke to. I do believe they are on to something. Though he showed some of the genes and I don't think the DQB1 was one of them. Have you seen this before, and what say you?

http://www.krispin.com/lectin.html

http://wildhorse.insinc.com/directms03oct2007/

Linda,

I'm familiar with the first link but not the Wildhorse presentation. I cant view that right now....unfortunately, I'm on a very slow computer with dial-up connection at the moment. :(

I'm not sure about the lectin theory. In my opinion these things are very difficult to determine. For example one might recognize a problem with the grains and other lectin foods and come to the conclusion that lectins are a problem. However, those same foods are also high in oxalates??? So it can beceome very confusing when trying to pinpoint the real problem.

I'm not aware of any test that would point to lectins being a problem...but I also havent spent much time researching lectins. There is a test available for oxalates...and high levels can be found in the urine of people having problems with them. The low oxalate diet is used as a treatment for various conditions including Fibromyalgia and Autism. Oxalates are one of several things I'm currently being tested for.

Many people will find that they feel better following a certain diet such as one which eliminates lectins or oxalates or something else. For some people that is fine for them and they are happy to follow the diet.

My mind actually doesnt let me rest....as I said earlier I'm just extremely curious. I want to know exactly which food compounds my body is struggling with and why. For every problem there is an explanation. I've spent alot of time researching the different food components/chemicals (everything except lectins) and by knowing which ones cause problems it has given me and my dr.'s a more clear picture as to what body systems may not be functioning normally. So we've been able to narrow some things down by knowing which foods are creating problems.

In most cases its not the foods themselves...but if a certain enzyme is deficient it can cause problems, if the gut flora is out of balance, if minerals are out of balance, if a certain pathway is blocked or overwhelmed, etc...all of these "disturbances" can lead to problems with certain food components. Our bodies are like a perfectly designed machine...but if one part of the machine becomes faulty there is greater stress to the rest of the system....eventually the whole body can be affected.

I have mostly focused my attention on the food chemicals... lectins are not really included in this group which is why I didnt spend much time looking into it. I cant really comment either way since I dont have much knowledge on lectins.

I believe UrsaMajor (who posts on this board) knows more about the lectins....maybe she can offer some insight. :)

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My symptoms: the worst of all are profound and debilitating fatigue, muscle weakness, tremors, very difficult to handle stress, shake, heart pounds, etc. hypogycemia, low blood pressure, some tingling, back, neck, hand, and hip pain, fluid retention, which I am now finding is related to food...and which foods.

These are all the same symptoms I had/have....and in my case all of them have been linked to food chemical intolerance. I actually had a very long list of symptoms....especially during the first 3 years. Even though I had physical pain the most disabling symptoms for me were impaired brain function and severe depression.

Fortunately, once I started eliminating most foods (I started on a very strict anticandida diet) I improved dramatically....particularly with the depression which cleared up within days and has not been an issue since. Also brainfog, migraines, fluid retention, tingling, numbness, muscle pain, fatigue, weakness, etc....these all improved or went away completely.

Fluid retention was a big one for me....related to toxicity. Since I'm reacting to food chemicals...rather than the foods themselves...its more of a "toxicity" thing rather than an "allergic" thing.

The best way to describe it would be to use the "bucket" explanation. Basically, with food chemicals the reactions dont occur unless the chemicals exceed the body's tolerance level. Every food eaten (including natural foods) has chemicals which get broken down and are either utilized or eliminated by certain body systems.

If all of these things were being thrown into a bucket....they would also be processed out....so the bucket never actually fills up. Things come in and things move out. Under normal circumstances the bucket would never overflow. However, if the body is not able to break these chemicals down efficiently....they can begin to accumulate. If this happens eventually the bucket fills up and starts to overflow.

Under normal circumstances these food chemicals are not harmful...and many of them are beneficial. But if the system is not functioning as it it should the chemicals can rise to toxic levels. So when they are not broken down and they are not eliminated....the bucket overflows. This is when symptoms develop as a result of toxicity. These circulating toxins can cause a great deal of inflammation and damage.

This toxic overload also heavily burdens the liver as well as the immune system. If the bucket has already exceeded its capacity....and the body is already struggling with this overload...at that point any incoming chemicals will furthur burden the system and symptoms will increase in severity.

I find that the more overloaded my system is...the more fluid my body will retain.

Hair loss is also a symptom for me...I think it's related to the malabsorption, mine was 647, I remember yours was high too...in the 900's...I attribute a lot of my problems to not absorbing nutrients for probably most of my life. I was bone thin as a kid, as a younger adult, I was treated as if my problems were in my head and as if I were anorexic, I finally gave up on doctors, on top of feeling so weak and tired I coudn't deal with that. I just started to work hard on being well, and tried to put on a face to the outside world that I was normal, but I knew I wasn't.

I think my malabsorption score was 912. If I were to retest it today I think it would fall into the normal range (or close to it). It really all depends on what I eat.

Before making any diet changes I had actually gained weight...but it was obvious to me that the weight was not "solid". It felt like I had "puffed up" but it was mostly due to inflammation and fluid. I could feel it all over my body. I could weigh myself at night and in the morning as much as 8 lbs. would have disappeared while I slept. :huh:

I knew it was water weight but I never really understood where it went so quickly....since I wasnt ever prone to diarrhea and I was never up all night urinating. Some nights I did have severe drenching night sweats...but still 8 lbs. of water?? :unsure:

Anyways, the doctors didnt believe me. :rolleyes:

I "appeared" healthy to everyone...since nobody could *see* that I was sick...my complaints werent really taken all that seriously. So yeah...in the beginning I was labeled "hypochondriach". :(

People would ask whether I'd been working out when all I was doing was sleeping all day! I didnt have the energy to even walk downstairs and I knew malabsorption was an issue (long before Enterolab results) but the fluid retention was "masking" the severity of the situation. I was telling people that if for some reason all of the fluid left....I would be left with nothing but bones.

Eventually thats exactly what happened. Prior to getting sick my weight was around 115. With all of the water weight I got up to almost 130....which was totally unusual for me. I had always struggled to maintain my weight....and I always ate more than people twice my size.

After I restricted my diet I started losing the water weight and I fell down to only 94 lbs. The funny thing is that this is when people finally started worrying about me and showing concern for my health...but I was actually feeling BETTER! My brain was working better, I had less pain, I was happier....everything was improving but at that point you could actually *see* that I was unhealthy.

Fortunately, my weight has been stable (around 110) for a long time now. However, it doesnt take much for damage to occur and for the lbs. to start falling off....so I have to be really careful to not let things get out of hand.

I guess I never tried to put a face on...or try to appear normal when I knew I wasnt. I think it has alot to do with the fact that I wasnt dealing with this all my life. It just came on so quickly and after being healthy for so many years...I just couldnt make sense of it. Nobody could tell me there was nothing wrong when suddenly I was in so much pain and suddenly I seemed like a different person in every way.

I was angry at everyone...the doctors, my friends, my family....everyone who wasnt taking me seriously. I let them all know it....everyday. :lol:

I just wanted to get better so I figured if I pretended to be OK....nobody would help me. I was scared back then....it was the worst time of my life.....thankfully, since then everyone has made a copmlete turnaround and I have support from everyone. :)

If my health had deteriorated gradually over a period of years I may not have been as proactive. Since it happened suddenly and the symptoms were severe I couldnt just "accept" that there was no reason for it. Even though the Dr.'s couldnt find anything wrong it didnt make sense to me that they werent trying harder....or that they could even think that I would "imagine" my symptoms.

I had no history of Dr. visits, I had no previous complaints, I was happy in my life, I enjoyed my job....there was really no reason for anyone to ignore my complaints or to dismiss them completely. But thats what happens when they arent able to make a diagnosis.

Fortunately, the doctors I see now are much more involved and have a great deal of determination. :)

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My son was diagnosed at 1 and 1/2 with Juvenile Rheumatoid Arthritis, he is fine, but tired, has tremors, doesn't sleep well, complains to me of weakness, another thing that has haunted me. (I just added melatonin to my supplements).

In my opinion anyone presenting with these symptoms should be evaluated for Lyme (by a specialist). Alot of these conditions should not be diagnosed without first ruling out Lyme.

Many people who have been initially diagnosed with RA, Fibro, MS, Parkinson's, Lupus, CFS...and a long list of other conditions were actually later found out to have Lyme. Proper treatment resolved the symptoms.

Unfortunately, the vast majority of Lyme cases are intintially misdiagnosed....many will never recieve the correct diagnosis or the proper treatment.

In some cases the treatment for these conditions results in a worsening of the Lyme infection (if that is the real problem). This is especially true of MS....because the treatment involves steroids. Steroids suppress the immune system which allows for the Lyme to progress.

I'm sure you read about my sister, who died after a horrible very debilitating case of MS, she lived with it for 20 years, most of those years she couldn't even feed herself. The neurologist said she had the 3rd most malignant case he'd ever seen, she didn't respond to mercury removal, experimental drugs, nothing, (even bee stings) and now I am thinking it's because "the leaky gut" set it off and that there was a gluten connection, and after watching that show yesterday on Lectin's perhaps that played a part too.

I'm very sorry about your sister. :(

People who are sick dont typically respond to mercury removal....and if not done correctly (by a biological dentist) they will usually only make things worse for themselves. I dont know if she had safe removals or not but that is probably the most important part. Its better to leave them in...then to have them removed improperly.

Also, if mercury is burdening the system...removing the fillings only eliminates the biggest source of exposure. What is already in the body (and possibly causing disease) remains in the body unless removed with some type of chelation therapy. Other than that mercury in the brain and in the central nervous system has a half-life of about 30 years. So its not going anywhere on its own.

And my whole family is suffering from one thing or another. I think it's all related. I have a brother who was recently diagnosed with schizophrenia....which is all over the literature as being implicated in gluten sensitivity...other sisters who are also having neurological symptoms....so to find the answer...would be so wonderful.

Yes...I agree that alot of it is related. And yes...to find the answer would be wonderful. :)

But Rachel I do at this point in my research....believe that there is a relationship between the food that we are eating and the symptoms that we have. The "leaky gut" I believe that we all have different symptoms, because we all have different immune systems and "triggers". But in the end, and maybe it's just wishful thinking, that hopefully we will all get to the same place, where we can reclaim our lives, and our health.

This was kind of the theme of the "OMG" thread.....and in the end its true that we all have different symptoms, immune systems, genetics and triggers. However, in every person the same types of problems were found in testing....so just as gluten can affect people in many different ways...so can alot of these other things. The goal was to work together....supporting each other....and through our discussions and research to make new discoveries which might guide us to the answers.

Alot of that was accomplished...and many people did find answers. In the beginning I had wondered if we might all come to similar conclusions...but at the time it seemed unrealistic. However, for the most part....that is exactly what happened.

I agree 100% that there is a relationship between the food we eat and the symptoms that we have. Most if not ALL of my symptoms are a direct result of what I eat.

I also believe that in most cases people will have to dig a little deeper to get to the root of the problem. Through these boards I've had the opportunity to meet lots of people, who like me, have multiple food reactions. Of these people...many have chosen to test for problems that may be *causing* the food intolerance. Of those people I am not aware of anyone who has not found some answers in the additional testing.

I think it is everyones hope that in removing the foods we will restore our health. We have all prayed for that at one point or another I'm sure.

As far as DQ1....I have made the statements that I have not seen anyone making full recovery by eliminating gluten alone. Although it does sound discouraging....in no way am I saying that those of us with this gene CANT recover. I believe the reason we are not experiencing the same results as those who have DQ2 or DQ8....is because DQ1 is not actually a proven Celiac gene. Even though a very small percentage of people with this gene have received a diagnosis...we still dont have significant evidence that this can be considered a known Celiac gene.

The vast majority of those with DQ1 will never test positive for Celiac. So if we're trying to resolve our health problems in the same way that a diagnosed Celiac would (gluten-free diet) we are not likely to get the same results. Even if we feel better having removed the most problematic foods (in most cases gluten, dairy and soy) we are still left with unresolved issues/symptoms. If we dont actually have Celiac...how can we expect the diet to solve everything? To me its kind of like trying to fit a square peg into a round hole.

Of course I do think the diet is beneficial for anyone who has chronic symptoms...especially when leaky gut is suspected.

There are many things in our food supply which can be very damaging to the gut. Antibiotics in meat, dairy and eggs....food dyes, additives, preservatives, pesticides...to name a few. They can all contribute to leaky gut.

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I read somewhere that if you do have a 'leaky gut' that it's not unusual to be sensitive to a lot of foods because they have gotten into the blood stream and the immune system has developed antibodies against them, so it's key to find out all of the foods that might be making you sick and only through eliminating them can we begin recovery. I know you know that, but I have to say it...:)

Well, usually its more complicated than that...and usually with leaky gut we will continue to develop more intolerances as we remove more and more foods. Its a vicious cycle.

In my experience most people who have leaky gut also have gut infections. Those infections have much to do with the ongoing inflammation and the endless cycle of food intolerance. It is important to remove the most offending foods to reduce inflammation.....but if you leave the infections (or the problems which are allowing infections to occur)....the healing does not take place.

To say that removing the foods will allow healing to occur is to make the assumption that these foods are the only thing causing damage to the gut....which is usually not the case. For example....sulfate is necessary for maintaining the integrity of the intestinal lining. Some people (and this is very common with autism) have problems with sulfur metabolism...which can interfere with the body's ability to convert sulfur to sulfate.

If the body is lacking in sulfate....the intestinal lining becomes permeable (leaky gut). In addition, if the body is lacking in sulfate the enzyme required in breaking down various natural and synthethic food components can become deficient. So the result is food intolerance. Removing the foods alone does not resolve the problem of insufficient sulfate in the body.

This is just one example of many possibilities which do not involve foods as the initial cause for increased intestinal permeability. So thats why many people who only focus on removing foods just keep removing more and more foods as time goes on.

Food intolerances are an issue for nearly every autistic child.....however, they have all of these underlying issues. Removing the foods helps to relieve many symptoms (just like it has for me) but this is not going to cure the Autism. And yes...Autism is treatable.....many kids do recover completely (or close to it) but usually multiple issues are addressed in order to acheive these results.

So while, I'm sensitive to thousands of things its not because I have not removed enough foods. As far as food choices go....I would probably guess that my diet is more restricted than most people posting on this board. For sure I must be in the top 5. :P

Also, I have had testing for delayed food sensitivities (IgG). Over 100 foods tested and I end up with not *one* single significant immune reaction to any food. :huh: My Dr. at that time couldnt understand how those results could possibly be mine! :unsure: I only had a handful (mainly spices) which I had very low reactivity to. This was not correlating with the amounts of foods I react to...which is one of the reasons I chose to direct my attention to food chemicals rather than foods themselves.

Also, very early on I had read somewhere that it is much more common for people to react to the food chemicals. However, most people assume that it is the food itself. They may eliminate a whole category of foods (such as dairy) when they may not be reacting to casein or dairy itself....but maybe a natural chemical such as "histamine" which is present in many dairy products. There are many different natural or synthetic chemicals in the foods which may cause reaction in some people.

I did alot of allergy and intolerance testing a few years back with nothing showing up. I have no true allergies and no significant IgG reactions to foods. I tested postive for gluten with Enterolab...but not with any other method of testing....including the Celiac panel.

Another thing is that food reactions should be fairly consistent if the problem is the food itself....whereas food chemical reactions are dose related and the reaction does not involve an immune response. So for me there was no rhyme or reason to my reactions. One day I could eat something with no reaction.....and another day the same exact food could cause a major reaction...and then a week later that same food does not cause reaction, etc. etc. It can be like that with most of the foods....very confusing and very inconsistent.

The reason for that goes back to the "bucket" thing. If the bucket has reached its capacity and I happen to eat something which causes it to overflow...the reactions appear. After that...EVERY food may cause some reaction until the body is able to clear out some of the overload....which can take days. When symptoms subside I may be able to eat the same thing which triggered the overflow....but this time without incident.

Thats how food chemical reactions work...its very different than immune reactions. Although my reactions are inconsistent....the thing that IS consistent is that the foods which have the highest levels of phenol content will fill up the bucket very quickly. Certain things like food dyes have to be avoided 100%. Chocolate, strawberries, oranges, apples, berries, spices, herbs, milk, etc... all of these things have high phenol content.

Another clue in all of this was that I could eat something for the very first time and react very badly. If the food has never actually been introduced before.....it would be impossible for my immune system to have developed antibodies against it. So it was not realistic to think that my body had developed antibodies to all of these foods which I was reacting to with an immediate response.

Usually only true allergies and reactions such as the ones caused by food chemicals are immediate.....IgG reactions are usually delayed reactions. When food chemicals build up in the body the reactions can be very similar to true IgE allergy reactions...and they can happen immediately.

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Thanks Rachel,

For example one might recognize a problem with the grains and other lectin foods and come to the conclusion that lectins are a problem. However, those same foods are also high in oxalates??? So it can beceome very confusing when trying to pinpoint the real problem.

Yes I understand completely, you can second guess things like crazy, and in the end still not have a clue, or just be second guessing. I just made an appt with my doctor for the Elisa food allergy test, at least that will let me know which foods I'm reacting to. And hopefully be another piece of the puzzle.

The Lectins, refer to wheat, (wheat germ, whole wheat flour, white flour) dairy, legumes, tomatoes, kidney beans, soybeans, peanuts

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Before making any diet changes I had actually gained weight...but it was obvious to me that the weight was not "solid". It felt like I had "puffed up" but it was mostly due to inflammation and fluid. I could feel it all over my body. I could weigh myself at night and in the morning as much as 8 lbs. would have disappeared while I slept.

Yes, I put on weight too

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In my opinion anyone presenting with these symptoms should be evaluated for Lyme (by a specialist). Alot of these conditions should not be diagnosed without first ruling out Lyme.

Many people who have been initially diagnosed with RA, Fibro, MS, Parkinson's, Lupus, CFS...and a long list of other conditions were actually later found out to have Lyme. Proper treatment resolved the symptoms.

Interesting

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In my experience most people who have leaky gut also have gut infections. Those infections have much to do with the ongoing inflammation and the endless cycle of food intolerance. It is important to remove the most offending foods to reduce inflammation.....but if you leave the infections (or the problems which are allowing infections to occur)....the healing does not take place.

I did not know that

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Food chemicals

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Is there an enzyme that will take care of the insufficient sulfate?

No...there is no enzyme available to correct the problem. Whatever is causing the problem needs to be identified and corrected.

The whole description that I just gave has to do with one enzyme system in the body. So people having problems with this particular enzyme will have the issues with phenols.

There are many other problems that can develop from dysfunction in other systems within the body....this was only one example. Gluten and casein require the DPPIV enzyme....so if this is inhibitied (it is easily blocked by mercury) then the person affected becomes intolerant to these foods....because they will not be able to digest them.

Personally, I believe that in most cases the food reactions are not a result of the foods themselves....but because the body has lost its ability to process them.

It is helpful to know which foods or food components are causing problems because it *may* pinpoint a problem within a certain enzyme system or give some indication of what might be out of balance....and what might be necessary to correct it.

Its alot of work...no doubt about that....but in the end it will have been well worth my while.

Right now I'm being tested for some of the things we suspect may be causing problems.

As my Dr. described it..."The system is dysfunctional but it may be that all of the "doors" are open....and yet *one* door is closed somewhere. If we can find that one door....and open it back up....then the body functions normally again...as it once did."

So yes....by pinpointing the *exact* cause for reactions....it does narrow the search. Otherwise it can be like searching for a needle in a haystack. You dont know where to start looking.

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wow, there is so much covered here, I can't take it all in now.

Rachel, Thanks for your concern. I am definately wanting to get my son tested for Lyme. I wish I had had him tested for Lyme before, but at the time his leg pain was only at night and at growth plates. It was not regularly occuring. Now he has had pain in the daytime sometimes, in his knees a few times, and in his hip twice.

I looked up Lyme and genetics. The research I found showed links to Lyme induced arthritis and DR 15, DR16, and DR4. These are DQ8, some DQ7s, some DQ5s, and some DQ6s.

To know which DQ 7 genes were involved a person would need to know the alpha part of the DQ gene, not just the beta part of the DQ gene that enterolab shows. All DQ8 genes were involved. The DQ5 and DQ6 genes involved were identifiable by the beta genes alone.

The DQ 8 and DQ 7 patients had arthritis that did not respond to antibiotics well.

My daughter has one of the DQ 6 gene linked to Lyme arthritis, maybe her twin brother does too. Luckily, she never had any bone pain or joint pain at all. We caught it right away and treated her promptly. I do have muscle, and joint issues. My dr. says it is genetic, but I am not sure. I have had them forever though.....as long as I can remember.

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    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
    Our passion is to bake the very best products while bringing happiness to our customers, each other, and all those we meet!
    We are available during normal business hours at: 1-888-533-8118 EST.
    To learn more about us at: visit our site.

    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.

    Source:
    FoodProcessing.com.au

    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com

    Jefferson Adams
    Celiac.com 06/18/2018 - Celiac disease has been mainly associated with Caucasian populations in Northern Europe, and their descendants in other countries, but new scientific evidence is beginning to challenge that view. Still, the exact global prevalence of celiac disease remains unknown.  To get better data on that issue, a team of researchers recently conducted a comprehensive review and meta-analysis to get a reasonably accurate estimate the global prevalence of celiac disease. 
    The research team included P Singh, A Arora, TA Strand, DA Leffler, C Catassi, PH Green, CP Kelly, V Ahuja, and GK Makharia. They are variously affiliated with the Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Lady Hardinge Medical College, New Delhi, India; Innlandet Hospital Trust, Lillehammer, Norway; Centre for International Health, University of Bergen, Bergen, Norway; Division of Gastroenterology and Hepatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts; Gastroenterology Research and Development, Takeda Pharmaceuticals Inc, Cambridge, MA; Department of Pediatrics, Università Politecnica delle Marche, Ancona, Italy; Department of Medicine, Columbia University Medical Center, New York, New York; USA Celiac Disease Center, Columbia University Medical Center, New York, New York; and the Department of Gastroenterology and Human Nutrition, All India Institute of Medical Sciences, New Delhi, India.
    For their review, the team searched Medline, PubMed, and EMBASE for the keywords ‘celiac disease,’ ‘celiac,’ ‘tissue transglutaminase antibody,’ ‘anti-endomysium antibody,’ ‘endomysial antibody,’ and ‘prevalence’ for studies published from January 1991 through March 2016. 
    The team cross-referenced each article with the words ‘Asia,’ ‘Europe,’ ‘Africa,’ ‘South America,’ ‘North America,’ and ‘Australia.’ They defined celiac diagnosis based on European Society of Pediatric Gastroenterology, Hepatology, and Nutrition guidelines. The team used 96 articles of 3,843 articles in their final analysis.
    Overall global prevalence of celiac disease was 1.4% in 275,818 individuals, based on positive blood tests for anti-tissue transglutaminase and/or anti-endomysial antibodies. The pooled global prevalence of biopsy-confirmed celiac disease was 0.7% in 138,792 individuals. That means that numerous people with celiac disease potentially remain undiagnosed.
    Rates of celiac disease were 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania; the prevalence was 0.6% in female vs 0.4% males. Celiac disease was significantly more common in children than adults.
    This systematic review and meta-analysis showed celiac disease to be reported worldwide. Blood test data shows celiac disease rate of 1.4%, while biopsy data shows 0.7%. The prevalence of celiac disease varies with sex, age, and location. 
    This review demonstrates a need for more comprehensive population-based studies of celiac disease in numerous countries.  The 1.4% rate indicates that there are 91.2 million people worldwide with celiac disease, and 3.9 million are in the U.S.A.
    Source:
    Clin Gastroenterol Hepatol. 2018 Jun;16(6):823-836.e2. doi: 10.1016/j.cgh.2017.06.037.

    Jefferson Adams
    Celiac.com 06/16/2018 - Summer is the time for chips and salsa. This fresh salsa recipe relies on cabbage, yes, cabbage, as a secret ingredient. The cabbage brings a delicious flavor and helps the salsa hold together nicely for scooping with your favorite chips. The result is a fresh, tasty salsa that goes great with guacamole.
    Ingredients:
    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
    Purée all ingredients together in a blender.
    Cover and refrigerate for at least 1 hour. 
    Adjust seasoning with salt and pepper, as desired. 
    Serve is a bowl with tortilla chips and guacamole.