cwendyhawk
11-11-2006, 02:55 AM
Seems I am always finding information that my doctors should be finding and passing along.....such as the fact that if you are allergic to sulfur....it is found in food. A minor detail that my 1st bad doctor over the years left out. Some very kind person on the Internet helped pointed that out to me...months ago. I am very grateful for the info.
I however, had not run across any postings that explained why some people respond to the diet and others don't........ except for the main reason..... that there is hidden gluten out there......but then many of the people that are not responding to the diet are severe enough .....that they will educate themselves a great deal on cross-contamination...in hopes that they might start feeling better if they find some magical hidden gluten that is lurking in one of the supposedly safe foods.
So what..... I ask, are the chances that all the ones that are not responding are all just not careful enough. Mistakes will happen time to time.....since we are human and we make mistakes and God knows those darn manufactures aren't labeling their products well enough yet......but come on......there has got to be a better explanation as to why there are some people that "just do not respond to the diet."
Some of the doctors just shrug and say that the diet does not work for everyone. Well....there actually may be a reason...much better than a shrug.....which I'm sure someone has already figured out somewhere.......but I thought I would post anyway...........since if I can't find much about it on the Internet...it is likely that other people could be at an even worse disadvantage.
Many advised on forums to get checked for other intolerances and allergies. Many advised that people that are responding to the diet should get checked for the nurmerous diseases/conditions that are unfortunately connected to sub-clinical gluten intolerance.
After my doctor.......told me that she wasn't all too convinced that the sub-clinical gluten intolerance was the actual thing that was directly causing my numbness and weakness and fatigue.....I started thinking about it and looked over Dr. Fine's comments on the Internet about how lactose tends to put too much stress on some of our systems and I got to thinking about the fact that I have pretty severe allergies and that the histamines in my blood must be putting some stress on my system.......and then.....low and behold.....I found in an encylopedia ...OF ALL PLACES......that said histamines cause ..NEUROLOGICAL problems......muscle aches...joint pain.....extreme fatigue....depression.....and on and on......and then I found other articles on the Internet mentioning the link to MS and neurological problems and histamines......hmmmm.....gluten intolerance and MS......histamine and MS......
Now, I'm not saying that my symptoms are all histamine related. I do think the sub-clinical gluten intolerance is causing ..in some way.....the majority of the damage......the numbness that I have had for a whole year...../muscle weakness/likely atrophy /extreme fatigue/balance issues/foot drag/and "slurring words slightly"......(perhaps due to damage that it has already caused or some other crappy disorder it has already given me)......however.....I'm off gluten and am extremely careful about the gluten and I know that I get fooled every now and then and definitely can feel the "pain of the getting fooled part".......however....I do think....as do a few others (likely homeopathic doctors).....that if a person has severe allergies (which is one of the symptoms of sub-clinical gluten intolerance)......that they have moderate to high levels of histamine so yes....the gluten is gone.....but by that time...the body is pretty messed up and can't take the stress of all the histamine....which by the way...I heard......actually increases.....every time you accidentally get "glutenated"......so double trouble.....so...perhaps some of the symptoms can be eliminated .....perhaps......if histamine levels decreased......
perhaps....you never know.......
Personally, I know that I have rather severe allergies....and had cut back my anti-histamine meds.....about 4 months or so....prior to my toungue going numb last year(which was only the beginning unfortunately....of my troubles..)....Why did I cut them back (I listened to a doctor).....Shouldn't have.....but those doctors seem to not like people taking much antihistamines......which I'm sure their reasons are medically valid but as for how much you can take........I am sure that has to be somehow linked to the level of histamines in your blood......but then again....I may be off the mark.
So for everyone that is still going through "the pain of sub-clinical gluten intolerance".....I would advise you.....if you are wanting to get someting checked.....like I was....just a few days ago......to get your histamine levels checked.....and ask your allergist how much anti-histamines that you can safely take depending on your histamine level...... My allergist was extremely horrible....had a God complex.....and didn't tell me anything about sulfur being in food.....though I clearly stated on the workup that I was allergic to sulfur.....nor did he test for food allergies/intolerances. Nor did he offer me much of anything but the shots that made me feel worse and worse as I went along with the treatment.......could only stand 5 1/2 months of pain.....no more.....anyway...hope you have a better allergist than the one I had......
And did you also know.....that there is something you can take that actually breaks down histamines.......I think anti-histamines just blocks it....maybe? I don't know.....didn't go to med school but I'm the one that figured out from cross-checking symptoms (present sysmptoms and the ones I had back when I was in college....when I had another bad doctor)....that I was likely sub-clinical gluten intolerance a month after my neuro .....a suppossed specialist......wrote me off as a head case......and then I got if confirmed through Enterolab.....and now....I am learning that something can actually break down histamines......why the heck have I had such a bad time with doctors.....I have had allergies all of my life......the sub-clinical gluten intolerance activated when I was a child.....and I was a real sick kid......temporarily lost hearing and had years and years of speech therapy because I couldn't even hear good for a long time......good grief......something can break down histamines.....why the heck didn't I ever hear about that......
Anyway...just wanted to pass on the info that I had run across .....might be wrong...might be right.......but information is power.....so be advised.....and come to your own conclusions........about possible improvement of sub- clinical gluten intolerant people....(with neurological symptoms)......who are not responding to the gluten free diet...throught the use of anti-histamines and the stuff that also breaks down histamines.........for those that have lots of allergies.....(high levels of histamine)...
***If anyone wants me to look for other articles/more info on...I would be happy to do it for you......
***I also advise you to work with a doctor if you choose to change your current medications/supplements that you are taking since I am not a doctor...and your health is too important to be taking anyone's advice off the Internet........especially someone like me.....who is not a doctor...... :)...therefore...... can not give you actual medical advice........
------------------------------------------------------------------------
http://en.wikipedia.org/wiki/Histamine
"Histamine is a biogenic amine chemical involved in local immune responses as well as regulating physiological function in the gut and acting as a neurotransmitter. New evidence also indicates that histamine plays a role in chemotaxis of white blood cells.
Histapenia (deficiency of histamine) and histadelia (abundance of histamine) can cause both neurological and physical disorders.[citation needed] Histapenia may be caused by excess copper levels, as this decreases blood histamine.
Histadelia (histamine abundance)
hyperactivity, obsessive-compulsive disorders, inner tensions, mind blanks, phobias, chronic depression, suicidal tendencies, pain intolerance, rapid metabolism, lean build, profuse sweating, seasonal allergies, frequent common colds, urticaria."
" Iarosh OO, Kanevs'ka SA
Lik Sprava 1992 Jan;(1):75-6
--------------------------------------------------------------------------------
PMID# 1364615; UI# 95027875
Abstract
The authors investigated the amount of blood Histamine in 92 patients with Multiple Sclerosis, depending on the length of the disease and its clinical form. The biopsies of the Gastric Mucosa were studied in 32 patients.
It was established that the patients showed a high level of blood Histamine (disease length - under 5 years) and a low level (disease length - over 5 years). The histologic changes were pronounced in the Gastric Mucosa which is evaluated as a complication of Multiple Sclerosis."
http://www.diagnose-me.com/treat/T205248.html
"Dr. George Gillson, M.D., Ph.D., reports that after six weeks of treatment with histamine in 19 individuals with multiple sclerosis
11 noted dramatic improvement
3 reported one or more significant improvements in symptoms, including reduced numbness, better motor control, improved speech, much better sleeping, and more energy
1 had no change
4 had no change due to poor absorption of the histamine, poor patch adhesion, or an interfering drug.
The nurse responsible for the revival of the use of histamine, Elaine DeLack, MS, RN, has collected verbal reports from over 200 individuals diagnosed with multiple sclerosis who have used histamine: 72% report at least one significant improvement in symptoms, and some many more.
I however, had not run across any postings that explained why some people respond to the diet and others don't........ except for the main reason..... that there is hidden gluten out there......but then many of the people that are not responding to the diet are severe enough .....that they will educate themselves a great deal on cross-contamination...in hopes that they might start feeling better if they find some magical hidden gluten that is lurking in one of the supposedly safe foods.
So what..... I ask, are the chances that all the ones that are not responding are all just not careful enough. Mistakes will happen time to time.....since we are human and we make mistakes and God knows those darn manufactures aren't labeling their products well enough yet......but come on......there has got to be a better explanation as to why there are some people that "just do not respond to the diet."
Some of the doctors just shrug and say that the diet does not work for everyone. Well....there actually may be a reason...much better than a shrug.....which I'm sure someone has already figured out somewhere.......but I thought I would post anyway...........since if I can't find much about it on the Internet...it is likely that other people could be at an even worse disadvantage.
Many advised on forums to get checked for other intolerances and allergies. Many advised that people that are responding to the diet should get checked for the nurmerous diseases/conditions that are unfortunately connected to sub-clinical gluten intolerance.
After my doctor.......told me that she wasn't all too convinced that the sub-clinical gluten intolerance was the actual thing that was directly causing my numbness and weakness and fatigue.....I started thinking about it and looked over Dr. Fine's comments on the Internet about how lactose tends to put too much stress on some of our systems and I got to thinking about the fact that I have pretty severe allergies and that the histamines in my blood must be putting some stress on my system.......and then.....low and behold.....I found in an encylopedia ...OF ALL PLACES......that said histamines cause ..NEUROLOGICAL problems......muscle aches...joint pain.....extreme fatigue....depression.....and on and on......and then I found other articles on the Internet mentioning the link to MS and neurological problems and histamines......hmmmm.....gluten intolerance and MS......histamine and MS......
Now, I'm not saying that my symptoms are all histamine related. I do think the sub-clinical gluten intolerance is causing ..in some way.....the majority of the damage......the numbness that I have had for a whole year...../muscle weakness/likely atrophy /extreme fatigue/balance issues/foot drag/and "slurring words slightly"......(perhaps due to damage that it has already caused or some other crappy disorder it has already given me)......however.....I'm off gluten and am extremely careful about the gluten and I know that I get fooled every now and then and definitely can feel the "pain of the getting fooled part".......however....I do think....as do a few others (likely homeopathic doctors).....that if a person has severe allergies (which is one of the symptoms of sub-clinical gluten intolerance)......that they have moderate to high levels of histamine so yes....the gluten is gone.....but by that time...the body is pretty messed up and can't take the stress of all the histamine....which by the way...I heard......actually increases.....every time you accidentally get "glutenated"......so double trouble.....so...perhaps some of the symptoms can be eliminated .....perhaps......if histamine levels decreased......
perhaps....you never know.......
Personally, I know that I have rather severe allergies....and had cut back my anti-histamine meds.....about 4 months or so....prior to my toungue going numb last year(which was only the beginning unfortunately....of my troubles..)....Why did I cut them back (I listened to a doctor).....Shouldn't have.....but those doctors seem to not like people taking much antihistamines......which I'm sure their reasons are medically valid but as for how much you can take........I am sure that has to be somehow linked to the level of histamines in your blood......but then again....I may be off the mark.
So for everyone that is still going through "the pain of sub-clinical gluten intolerance".....I would advise you.....if you are wanting to get someting checked.....like I was....just a few days ago......to get your histamine levels checked.....and ask your allergist how much anti-histamines that you can safely take depending on your histamine level...... My allergist was extremely horrible....had a God complex.....and didn't tell me anything about sulfur being in food.....though I clearly stated on the workup that I was allergic to sulfur.....nor did he test for food allergies/intolerances. Nor did he offer me much of anything but the shots that made me feel worse and worse as I went along with the treatment.......could only stand 5 1/2 months of pain.....no more.....anyway...hope you have a better allergist than the one I had......
And did you also know.....that there is something you can take that actually breaks down histamines.......I think anti-histamines just blocks it....maybe? I don't know.....didn't go to med school but I'm the one that figured out from cross-checking symptoms (present sysmptoms and the ones I had back when I was in college....when I had another bad doctor)....that I was likely sub-clinical gluten intolerance a month after my neuro .....a suppossed specialist......wrote me off as a head case......and then I got if confirmed through Enterolab.....and now....I am learning that something can actually break down histamines......why the heck have I had such a bad time with doctors.....I have had allergies all of my life......the sub-clinical gluten intolerance activated when I was a child.....and I was a real sick kid......temporarily lost hearing and had years and years of speech therapy because I couldn't even hear good for a long time......good grief......something can break down histamines.....why the heck didn't I ever hear about that......
Anyway...just wanted to pass on the info that I had run across .....might be wrong...might be right.......but information is power.....so be advised.....and come to your own conclusions........about possible improvement of sub- clinical gluten intolerant people....(with neurological symptoms)......who are not responding to the gluten free diet...throught the use of anti-histamines and the stuff that also breaks down histamines.........for those that have lots of allergies.....(high levels of histamine)...
***If anyone wants me to look for other articles/more info on...I would be happy to do it for you......
***I also advise you to work with a doctor if you choose to change your current medications/supplements that you are taking since I am not a doctor...and your health is too important to be taking anyone's advice off the Internet........especially someone like me.....who is not a doctor...... :)...therefore...... can not give you actual medical advice........
------------------------------------------------------------------------
http://en.wikipedia.org/wiki/Histamine
"Histamine is a biogenic amine chemical involved in local immune responses as well as regulating physiological function in the gut and acting as a neurotransmitter. New evidence also indicates that histamine plays a role in chemotaxis of white blood cells.
Histapenia (deficiency of histamine) and histadelia (abundance of histamine) can cause both neurological and physical disorders.[citation needed] Histapenia may be caused by excess copper levels, as this decreases blood histamine.
Histadelia (histamine abundance)
hyperactivity, obsessive-compulsive disorders, inner tensions, mind blanks, phobias, chronic depression, suicidal tendencies, pain intolerance, rapid metabolism, lean build, profuse sweating, seasonal allergies, frequent common colds, urticaria."
" Iarosh OO, Kanevs'ka SA
Lik Sprava 1992 Jan;(1):75-6
--------------------------------------------------------------------------------
PMID# 1364615; UI# 95027875
Abstract
The authors investigated the amount of blood Histamine in 92 patients with Multiple Sclerosis, depending on the length of the disease and its clinical form. The biopsies of the Gastric Mucosa were studied in 32 patients.
It was established that the patients showed a high level of blood Histamine (disease length - under 5 years) and a low level (disease length - over 5 years). The histologic changes were pronounced in the Gastric Mucosa which is evaluated as a complication of Multiple Sclerosis."
http://www.diagnose-me.com/treat/T205248.html
"Dr. George Gillson, M.D., Ph.D., reports that after six weeks of treatment with histamine in 19 individuals with multiple sclerosis
11 noted dramatic improvement
3 reported one or more significant improvements in symptoms, including reduced numbness, better motor control, improved speech, much better sleeping, and more energy
1 had no change
4 had no change due to poor absorption of the histamine, poor patch adhesion, or an interfering drug.
The nurse responsible for the revival of the use of histamine, Elaine DeLack, MS, RN, has collected verbal reports from over 200 individuals diagnosed with multiple sclerosis who have used histamine: 72% report at least one significant improvement in symptoms, and some many more.