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I love trees
inactive member
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Posted: Wed Jan 3rd, 2007 20:04 |
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I'm wondering if it is a possibility that we may overcome gluten/gliadin sensitivey on the MP? I didn't test positive for gliadin antibodies 10 years ago, but I do now. I'm wondering if there is any experience with this subject? I'd love to be able to eat wheat again some day. Think there is any hope of that?
Carol
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Lyme/MS/Osteoporosis/IBS/WPW/Chronic hives - probios,mag.,silymarin. Oct06:125D=60,25D=26 /NoIRs /11-2-06 Benicar / avoiding light, D /using zinc oxide cream.
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Aussie Barb
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Posted: Wed Jan 3rd, 2007 20:14 |
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Carol
Dr Marshall said "Let me make a prediction. Your 'celiac disease/sensitivities' will disappear with your Th1 ..... "
see this post from an MP Member with Celiac as one of her diagnoses....
As with any Medical condition, a required Diet, medications or supplements Rx for symptom relief that are effective and not contraindicated, may be continued while symptoms are intolerable, and symptoms etc monitored and medications etc reduced or eliminated in consultation with your Dr as symptoms resolve with MP.
see also MCS success post re a number of sensitivities
The present known treatment for celiac disease is lifelong, scrupulous avoidance of gluten. Read more about treatment options for celiac disease.
all best, Barb ...
Tickbite wrote:
As you know, celiac disease is considered an "autoimmune" disease. My only comments are to say that "normal" levels of vitamin D which modern medicine claims to be 'optimal' are absolutely not optimal from MP standpoint.
I'm sure the gluten-free diet really helped, however the infection is still there. There may be less inflammation, but not reduced to "normal". Hell, 25D levels between 36 - 40 ng/mL is "most advantageous" according to http://www.medscape.com/viewarticle/541149. I suspect the study which you point out also use very high numbers to define "normal".
As you may also already know, Dr. Marshall has said that anything above 12ng/mL is absolutely immuno-suppresive. So when those scientists from the study we are talking about say "normal", you can tell yourself..........yeah! normal, ha! that patient is still sick today. The inflammation is building and will probably manifest into something else and never be associated with celiac disease.
There is no way to distinguish celiac patients because they are Th1 patients. I think looking at D levels is sort of short sighted now anyway. The picture which is presented by only looking at D levels is a fuzzy one at that. Too many variables. I would therapeutic probe someone if I were concerned.
Thanks for your question. I learned how much vitamin D is being touted as a miracle all over the world. Vitamin D..........ain't no miracle to me. (short poem).
~Grego
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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I love trees
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Posted: Wed Jan 3rd, 2007 22:49 |
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Barb,
Well, that's encouraging. What a bonus it would be! I won't get too excited, but I guess I dare hold out hope, at least.
 Carol
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Lyme/MS/Osteoporosis/IBS/WPW/Chronic hives - probios,mag.,silymarin. Oct06:125D=60,25D=26 /NoIRs /11-2-06 Benicar / avoiding light, D /using zinc oxide cream.
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jrfoutin
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Posted: Thu Jan 4th, 2007 08:18 |
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Carol,
I have Dx Celiacs in my family. You look remarkably like the cousin my age. I had to look 2x to make sure your picture wasn't her!
In any case, my Celiac side of the family all thought that is what I had when I got my Th1/Sarcoidosis Dx. When I self-weaned off of prednisone after 9 months, I tried to manage with diet alone and stopped eating bread products because I would get terrible digestive problems with breads/bakery.
My Celiac cousins wanted me to get tested for Sprue, but said I'd have to eat some Bread for tests to work... I wouldn't do that, bread was too much trouble! I got the Gluten gov booklet and read it all the way through a couple of times, just in case.
I now eat whole wheat for breakfast most mornings (sometimes w salt/pepper, sometimes with 1/2-1/2), have been fine with whole wheat bread I have made from scratch (no folates just a simple recipe) and even have a Costco Polish dog or Subway a couple of times a month. I don't overdo it, and still will generally skip breads, but have been able to introduce some I used to avoid back into my diet.
I won't say I have Celiac Dx (none ever tested for) or that I'm doing a lot of wheat/gluten even right now, but the point is my "wheat fussy" diet has changed over the time I've been on the MP.--Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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Shelob
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Posted: Thu Jan 4th, 2007 12:18 |
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Carol,
I do not post very often, but I feel so strongly about this that I cannot resist. I am not a celiac, nor do I test positive for gliadin antibodies (actually, my body does not produce many antibodies at all.) However, a couple of years ago while I was still trying to convince my doctors to let me begin the Marshall protocol and felt that I had to do something while I waited, I began a modified low-carb diet- primarily ultra-low gluten and low starch. Everyone is different, but I believe that I experience a noticeable reduction in my sarc symptoms when I avoid gluten and starches. Other carbs do not seem to have as much of an impact for me. This was reflected mainly by a reduction in my hip and joint pain, but also seemed to help with SOB. My doctors thought I was crazy when I mentioned it and quickly dismissed it as my imagination- but I know that I did not imagine it. It was the sarcinfo website's recommendation of a low-carb diet that tipped the balance for me and convinced me that I had to try the MP. Finally someone took me seriously!
After two years on MP, I get less of a reaction to gluten and starches than I used to. I can now eat them in moderation, although I still fell better and I believe I have more moderate herx when I avoid them. For me, I think they add to my body's inflamatory response. Whereas I used to temporarily gain up to a kilo the day after a plate of pasta (had to be water- not enough calories to account for it), I can now occasionally "fall off the wagon" without serious consequenses. I do notice it if I overindulge, but I find that I do not have to be nearly so strict in my diet as I used to.
Shelob
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Sarcosidosis CVID splenomegaly 25D7/6May04 Ph1Jul04 Ph2Oct04 Ph3Jul06 Zeiss/Jul08 25D too low to measure
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I love trees
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Posted: Fri Jan 5th, 2007 09:05 |
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Thanks guys,
I didn't get any emails notifying me of these messages. I guess my ISP's spam filters are working over time. Wonder what else I'm missing.
I've probably only been told I look like someone, once or twice in my life, so that's interesting, Janet.
This is not too critical an issue for me, because I'm used to not being able to eat bread, but I do miss more variety in my diet, and I always loved good bread. I've been on a severely low carb diet since March 2000. I'd had giant hives covering 2/3s of my body for a couple of months, and finally resorted to prednisone to keep them under control. (It took 20 mg a day to keep the itching to a bearable level.) I knew I HAD to get off the prednisone, and coincidentally had started a strict, low carb anti-candida diet. When I quit the prednisone, with the help of a dermatologist and prescriptions for zantac and benadryl, (strange combo, I know, but it helped), I realized the low carb diet was helping the most.
To this day, I can't eat many carbs at all, or the hives come back, in a modified form, and in fact, it seems to be getting worse all the time. (Perhaps part of the Herx? I've read that 20% of Lyme patients have chronic hives.) If I eat anything higher in carbs than the following foods, I get tiny, itchy bumps, and a sore tongue: meat, broccoli, bok choy, (or other low carb veggies), onions, garlic, ginger, nuts, oil and nonfat cottage cheese. (And coffee and tea.) Fruits, grains, and most dairy is out, and of course anything else containing any kind of sugar. (Good diet for the MP, I've noticed.)
Carol
Last edited on Fri Jan 5th, 2007 09:05 by I love trees
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Lyme/MS/Osteoporosis/IBS/WPW/Chronic hives - probios,mag.,silymarin. Oct06:125D=60,25D=26 /NoIRs /11-2-06 Benicar / avoiding light, D /using zinc oxide cream.
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coolbeans
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Posted: Fri Jan 5th, 2007 12:28 |
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Carol,
Oh, I miss bread too! My problems were IBS related. Even knowing it will cause bloating, discomfort. . . I sometimes indulge. Luckily, I can tolerate two varieties occassionally now with fewer repercussions; dark rye and nut oat bread. Just writting this makes me want to go have some!
Jan
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RA FM allergy asthma GERD MCS FBD IBS lichensclerosus 125D59 Ph1Jun06 ModPh2Aug06 Ph2Jan07 Ph3Jun07 tramadol diazepam NoIRs lite exp r/t work cover up 25D8
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eClaire
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Posted: Fri Jan 5th, 2007 13:24 |
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| As my illness has waxed and waned over the years, I have been sensitive to both wheat (tested negative to celiac, but I too don't have many antibodies even though I can't tolerate things) and milk and these sensitivities have waxed and waned with my health. Sometimes I only had trouble with milk and wheat when I put the two together--butter on bread or dipped breadsticks in blue cheese dressing--those behaviors would tear me up inside. During my best times I could indulge in both without any difficulty...I expect to be doing that again in a few years. Claire
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34mo on MP; CFS FMS MCS COPD hypermob. IBS/GERD osteopor.; 125D48 25D<4;
NoIRs during most daylight outings & covered up; home w/o NoIRs
Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08 * Ph2.Oct-Nov08 * Ph1.Jan2009
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Joy
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Posted: Fri Jan 5th, 2007 17:15 |
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I could add here that I developed wheat/gluten sensitivities along with the peripheral neuropathy in my feet about six years ago. I'm not a true celiac, in that I can eat gluten-containing grains once or twice a week without difficulty, which I usually reserve for meals out. I notice a distinct lessening of the neuropathy symptoms when I stay off the gluten grains. Lately milk seems to be becoming a problem also as I sneeze and sniffle after having it on my morning gluten-free cereal (there's a D-less whole milk I use). So that's going to have to go shortly also.
Now I've only been on the MP for less than six months, but I am already starting to feel a SLIGHT lessening of the neuropathy in my feet, on a daily basis. As to whether that will extend to the gluten grains and being able to include real bread back in the diet, time will tell. (The gluten-free breads are disgusting!)
So I think Trevor's prediction is most likely correct, we just have to soldier on through this symptom resolution till we break through into the clearer light of health . . .
Best of luck to you,
Joy
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CFS, FM, MCS, RA, low thyroid.
Began Ph 1 9/06, Phase 2 1/07. Stopped abx 11/07; stopped Benicar 5/09. 25D: 32,17,5,4,4
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I love trees
inactive member
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Posted: Sat Jan 6th, 2007 07:56 |
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What's so odd to me, reading all your posts, is that I didn't have any symptoms that I could relate to gluten sensitivity and was kind of amazed when I tested positive for gliadin antibodies. (It was just a routine part of my doctor's testing procedures.) I do have IBS, but have never been able to pinpoint the problem foods where that is concerned.
In fact, my lack of Celiac type symptoms is what caused me to wonder if the MP might eliminate the gliadin/gluten sensitivity. I suspect it will.
I guess we shall all find out one of these days!
Thanks all for your responses.
Carol
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Lyme/MS/Osteoporosis/IBS/WPW/Chronic hives - probios,mag.,silymarin. Oct06:125D=60,25D=26 /NoIRs /11-2-06 Benicar / avoiding light, D /using zinc oxide cream.
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slowmo
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Posted: Sun Mar 4th, 2007 17:29 |
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Some patients with celiac disease have low/normal 25D but elevated 1,25D apparently related to celiac. For examples, see PubMed articles 8186825 and 15310538
Quoting 15310538, "Our patient had hypocalcemia caused by celiac disease and values for serum 25-hydroxyvitamin D and 1,25-dihydroxyvitamin D that were normal and elevated, respectively. Correction was demonstrated after dietary
gluten withdrawal."
What is the proper way to distinguish such patients for treatment via the MP rather than treatment for celiac?
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Lyme? thyroid cancer joint pain 125D64 25D19 Ph1Oct05 Ph2Jan06 Ph3Mar07 25D<7(Jun08) levox TRcyto ranit neccessary:probio comf exp gngr MGcit indoors mostly NoIRs
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Aussie Barb
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Posted: Sun Mar 4th, 2007 19:56 |
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Slowmo
see topic Will the MP resolve gluten/gliadin antibody sensitivity?
FAQ Is the Marshall Protocol an Applicable Treatment for my Disease?
The present known treatment for celiac disease is lifelong, scrupulous avoidance of gluten, and.... read more about treatment options for celiac disease.
Thanks, Barb ...
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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jrfoutin
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Posted: Sun Mar 4th, 2007 20:51 |
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Slowmo,
Seems I am in agreement with Aussie Barb, although she posts quicker and with greater accuracy and fewer words than I do. I might add:
I found an interesting article/study. Can you tell me what it means?
Also, the premise of your question seems to be that there are Th1 diseases that have a dx that includes specific consensus recognition of low 25D/high 1,25D. Additionally, these Th1 diseases have been around for quite a while, too, so should they be treated as another Th1 disease on the MP, or should they be treated according to existing consensus?
I would recommend the first place to look for your answer:
Is the MP an Applicable Treatment for my Disease?
The MP science, and other researchers are describing the VDR, CWD L-forms and chronic disease with remarkable accuracy using Molecular Genomics to reveal the true nature of Th1 diseases. As the accuracy of this science is confirmed, a greater reliance on that data will be given and other research will be sorted out. I take great confidence in the fact that reliable sources are daily confirming the MP, some, without even being aware of the MP.
But the most important thing to discover about oneself could very well be something other than celiac, or even debating consensus methods vs MP to treat a Th1 condition:
How do I know if I have the 'right stuff' to be successful with the Marshall Protocol?
I happen to know that celiac isn't considered a curable disease by consensus. One just has to avoid gluten and similar food triggers for the rest of one's life. Sarc isn't considered curable by consensus methods either. I'm so glad to have the MP and to be getting well.
Best to you slowmo--Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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slowmo
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Posted: Sun Mar 4th, 2007 21:29 |
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Yes, I understand the MP's position is that Th1 inflammatory diseases are a response to intracellular bacteria.
I am curious as how the MP theory accounts for a case like that in PubMed 15310538 in which the patient's vitamin D levels returned to normal by avoidance of dietary gluten.
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Lyme? thyroid cancer joint pain 125D64 25D19 Ph1Oct05 Ph2Jan06 Ph3Mar07 25D<7(Jun08) levox TRcyto ranit neccessary:probio comf exp gngr MGcit indoors mostly NoIRs
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jrfoutin
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Posted: Sun Mar 4th, 2007 22:08 |
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Slowmo,
Please read the link:
I found an interesting article/study. Can you tell me what it means?
I looked at the abstract. There are lots of reasons why I would consider this study not surprising or as evidence pointing away from the MP.
I might even point to the fact that many with Th1 on the MP see their D's return to optimal MP-defined ranges so they might better eradicate the pathogens that are making them ill. You will notice in your study that researchers were satisfied with a short term result on one patient and nobody had a problem with the patient still being celiac and still requiring a modified diet at the end of the study (patient still had Th1). But those are just from glancing quick at the abstract.
If you are not sure of the MP for yourself, that is another issue that no moderator can resolve for you by discussion of any one anecdotal case study.
Did you take the time to carefully read through the links from Aussie Barb or the one above that I have given you 2x now? Please do that before you post again on this topic.
Choose well, get well--Janet
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Sarcoidosis 125D61, MP10/05 ModP2 12/05 Ph2 6/06 Ph3 10/06, NoIRs limited outings covered, 2/08 25D6.2, 10/08 25D6.9
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tickbite
Member in Phase 2/3
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Posted: Sun Mar 4th, 2007 22:21 |
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I would like to read the whole study. As you know slowmo, celiac disease is considered an "autoimmune" disease and hence the position here at MP is that there is no such thing. My only comments are to say that "normal" levels of vitamin D which modern medicine claims to be 'optimal' are absolutely not optimal from MP standpoint.
I'm sure the gluten-free diet really helped, however the infection is still there. There may be less inflamation, but not reduced to "normal". Hell, 25D levels between 36 - 40 ng/mL is "most advantageous" according to http://www.medscape.com/viewarticle/541149. I suspect the study which you point out also use very high numbers to define "normal".
As you may also already know, Dr. Marshall has said that anything above 12ng/mL is absolutely immuno-suppresive. So when those scientists from the study we are talking about say "normal", you can tell yourself..........yeah! normal, ha! that patient is still sick today. The inflammation is building and will probably manifest into something else and never be associated with celiac disease.
There is no way to distinguish celiac patients because they are Th1 patients. I think looking at D levels is sort of short sighted now anyway. The picture which is presented by only looking at D levels is a fuzzy one at that. Too many variables. I would therapeutic probe someone if I were concerned.
Thanks for your question. I learned how much vitamin D is being touted as a miracle all over the world. Vitamin D..........ain't no miracle to me. (short poem).
~Grego
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Phase3 8-2-07, MP on hold 11/2007
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slowmo
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Posted: Sun Mar 4th, 2007 22:38 |
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FWIW, before posting I had used the search feature for celiac, and found no useful information.
If I may suggest a constructive improvement to the search engine: always show a message excerpt that includes the search term. That way people could more easily find information that you have posted in the past, and you'd have less work (less repeating of your replies).
Right now, for example, searching on celiac returns 40+ matches; on the first page of 10 matches, only 2 of them reveal their context by showing an excerpt containing the word celiac.
The only match for 15310538 is this string.
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Lyme? thyroid cancer joint pain 125D64 25D19 Ph1Oct05 Ph2Jan06 Ph3Mar07 25D<7(Jun08) levox TRcyto ranit neccessary:probio comf exp gngr MGcit indoors mostly NoIRs
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Alayne
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Posted: Sun Mar 4th, 2007 22:47 |
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I would suggest trying this search option.
Go into Google, then type in:
celiac site:http://www.marshallprotocol.com
You'll find many more responses with perhaps a little more info on them. Note that with this search, you also find folks with celiac in their signature lines.
-Alayne
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ME/CFS/FM 6/05:25D-34 1,25D-69, 11/07:25D-8 1,25-37, Sick 6-11 mos/yr x30+yrs. NoIRs/Avoid Sun/D/Use Zinc oxide. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3, NonMP Meds: MThistle/Calc&Mag/Lysine
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I love trees
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Posted: Mon Mar 5th, 2007 17:58 |
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"Normal" on a 1,25 D test result, at Quest, is 60 or under. So, the person referenced in the abstract undoubtedly had a 1,25 D level over that amount, or it wouldn't have been reported as high. The abstract states that the 1,25 D level returned to normal, after eliminating gluten, but for all we know, it only came down to 60, which is still very high under the light of the MP. (This is because the reference ranges at the labs include people with Th1 disease, so they are skewed too high.) We would need to know the actual numbers involved for that study to have any relevance.
Carol
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Lyme/MS/Osteoporosis/IBS/WPW/Chronic hives - probios,mag.,silymarin. Oct06:125D=60,25D=26 /NoIRs /11-2-06 Benicar / avoiding light, D /using zinc oxide cream.
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jcwat101
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Posted: Wed Mar 28th, 2007 18:31 |
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Slowmo,
I would suggest that the explanation is that the celiac disease caused a malabsorption syndrome which can make the calcium much less available for absorption (it involves unabsorbed fat in the diet combining with the calcium and inhibiting absorption). The lower calcium availability would cause secondary hyperparathyroidism which causes the kidneys to excessively convert 25D to 1,25D and would give those type of D results.
I think the patient would clearly want to avoid the gluten. If they still had symptoms they thought might be Th1, they might try the MP and see how they respond. Or if they suspected subclinical symptoms might exist or wanted to see if their celiac disease would disappear on the MP, they could do a therapeutic trial. Of course, if their D levels were still abnormal after they avoided gluten, that would be another clue.
Joyce Waterhouse
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20 yrs with CFS/FM/Lyme/IBS, food sensitivities; 1,25D/25D 8/04:64/11 http://SynergyHN.com
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