This is a post to a site called Cancer Compass- the poster discusses the possibility of a relationship between celiac disease (allergy to gluten) and myeloma.
Do any mmers have celiac disease?
"We recently discovered that my wife, who has myeloma, also has celiac disease (gluten intolerance) which leads to damage of the lining of the small intestine if gluten is eaten. This results is malabsorption of nutrients and vitamins. The interesting piece of information is that celiac disease is the result of IGA and IGG antibody responses to gluten. Could celiac disease, in some people, lead to an uncontrollable production of IGA and/or IGG immunoglobulins resulting or contributing to myeloma? Could controlling celiac disease help treat myeloma? I do know - especially in North America - that celiac disease is far under diagnosed and that thousands unknowingly have the disease.
Anyway ... these are my questions, so if anyone has any further knowledge or ideas on this subject please post.
Regards,
Craig"
From acor post-
>From: MYELOMA Multiple Myeloma Support List on behalf of Barbara Teer
>Reply To: Barbara Teer
>Sent: Monday, October 8, 2007 1:55 PM
>To: MYELOMA@LISTSERV.ACOR.ORG
>Subject: Re: [MM] and celiac disease
>
>I do not have any definite information about celiac disease and MM being
>related. I was diagnosed with celiac disease 3 or 4 years before MM. I
>have seen on the list several others that had the same connection. I also
>was diagnosed with lymphocytic colitis just before the MM. I think there is
>a definite connection and I have felt much better when I stay on the gluten
>free diet. I was surprised when on my first visit to a gastrospecialist
>that he considered celiac disease as I had found most doctors thought it was
>imaginary.
>
>Barbara
>Dx 5/20/DOB 10/25/36
>SCT 9/03
>Remission
>Revlimid/dex
>Rev & Dex 9/06
>still on this
This is a post to a site called Cancer Compass- the poster discusses the possibility of a relationship between celiac disease (allergy to gluten) and myeloma.
Do any mmers have celiac disease?
"We recently discovered that my wife, who has myeloma, also has celiac disease (gluten intolerance) which leads to damage of the lining of the small intestine if gluten is eaten. This results is malabsorption of nutrients and vitamins. The interesting piece of information is that celiac disease is the result of IGA and IGG antibody responses to gluten. Could celiac disease, in some people, lead to an uncontrollable production of IGA and/or IGG immunoglobulins resulting or contributing to myeloma? Could controlling celiac disease help treat myeloma? I do know - especially in North America - that celiac disease is far under diagnosed and that thousands unknowingly have the disease.
Anyway ... these are my questions, so if anyone has any further knowledge or ideas on this subject please post.
Regards,
Craig"
Date:Â Â Â Mon, 8 Oct 2007 06:57:47 -0400
From:Â Â Â Rita Kautz <KaitlynK@AOL.COM>
Subject: Re: and celiac disease
The following URL should take you to a recent
abstract from PubMed.org about celiac disease and
monoclonal protein.
Rita Kautz, Attica, NY, USA
    http://tinyurl.com/2q5g88
Â
I have not been diagnosed with Celiac's but my leaky gut synddrome has not improved despite over 3 years of the doctor treating it. About 3 months ago she suggested that I try a gluten free diet. Although I did not think I felt any different on it, the two times that I have eaten wheat in the last three months have made me extremeley sick to my stomach with a terrable headache. I very rarely have either of these problems. She explained that when we overload our bodies with something that is "bad" for it, we forget how we would feel if we were not eating this item. Once out of the diet for a period of time and then reintroduced, we are able to see the effect it is having. She also said that if I started to eat wheat again daily that the stomach problems and headaches would become fewer and I would probably think that I was feeling "fine" again. There is a special allergy test which tests the IGG4 response to certain foods. I am planning on having this done. It says that these types of food allergies are the hardest to detect since the reaction to the food is not immediate but can occur from serveal days to a week or more after eating the food. IT is hard to make the connection.
Mary Jo
I have a vegeterian diet(most of my life) and have used guten as a protein replacement for years. [There are many other protein sources as well]. I have never had a specific reaction, and find gluten quite tolerable. However, as I've gotten older my digestive system seemed to be generally less agreeable, and I wondered how effective it is in absorbing nutrients. As a result I suspect my system was pretty defenseless when MM arrived. I was attempting to improve digestive problems when MM developed. Currently I use a number of different enzymes with meals, as well as probiotics. These products seem to help my system work better. Skin tone, color etc are good, blood work suggests I am getting the nutrients I need. But I do wonder about some of the finer elements in food, if they are being absorbed.
I was diagnosed with gluten intolerance in 2000, three years before I was diagnosed with MM in 2003. Prior to the gluten diagnosis, I had had food allergies, leaky gut and malabsorption of nutrients. I was relieved to discover that I had gluten intolerance because I felt much better after giving up gluten-containing foods. Most doctors in 2000 weren't checking patients for gluten intolerance or for celiac disease. (I found out about my intolerance from a naturopath.) I think this has changed since Italian studies show that 1/125 people have an intolerance to gluten. Although I no longer eat gluten, I haven't noticed that it has made a difference to MM cells.
I just posted the comment below to Margaret's Corner- can anyone out there think of a way for mmers/caregivers to recieve information and support more effeciently than trying to belong and read many lists/blogs each day?Â
Margaret-
Re a possible celiac disease (gluten intolerance) and mm connection. There was Margaret's Corner discussing the issue, acor mm list recently discussing the issue, cancercompass discussing the issue and beating-myeloma.org also discussing this issue. I think that I read 10 current mmers who have been dx also with celiac disease.
First and foremost, I think there is a link. Secondly, can anyone think of a way to coordinate the efforts of the different lists/blogs in an effort to help mmers communicate more effectively? David
I had also read long ago of the link between celiac disease and MM and signed up for a once a month (I think) newsletter with very good info. I meant to post this info when it was being discussed and forgot. This may have already been mentioned, as well. Â The newsletter has much info, latest research, free recipes, recommendations. I was at first getting it to try the recipes. I don't think, however that I have celiac disease, but still get the newsletter because of its quality and no sales followup or apparent spam from it. The website is celiac.com and go there and find the link to sign up for the newsletter. If someone does have celiac disease, I remember there were some very good common sense resources available such as a convenient wallet card to carry of safe foods to order in restaurants.
Linda from NC
Hi everyone. David, I don't really have a suggestion regarding making communication between the websites/blogs more efficient (impossible feat, in my opinion), but one way we, you and I that is, could perhaps coordinate our efforts is for you to put a link to my blog on your homepage. When I created my blog back in March, the Beating Myeloma and the MMSupport websites were the first websites to which I linked.
I haven't yet looked into this celiac MM connection, but if there really is one I will be devastated! No more PASTA??? OUCH! I live in ITALY, and IÂ love, no, IÂ ADORE pasta! Well, one way to see if gluten intolerance has anything to do with MM is to stop eating gluten-ridden foods for a few months and then have tests done. I may do that in the future. But first, I wlll do some research. I wonder if curcumin would offset the gluten...a glimmer of hope...
Hope everyone is well! (Lisa, are you back home yet? Alex, how are you doing?)
Take care, Margaret
Florence, Italy
Margaret-
I too intend to do more research on the issue- as far as I can tell, all of the mm listservs are discussing the possibility-
"I haven't yet looked into this celiac MM connection, but if there really is one
I will be devastated! No more PASTA??? OUCH! I live in ITALY, and I love, no, I
ADORE pasta! Well, one way to see if gluten intolerance has anything to do with
MM is to stop eating gluten-ridden foods for a few months and then have tests
done. I may do that in the future. But first, I wlll do some research. I wonder
if curcumin would offset the gluten...a glimmer of hope...
I love pasta, breads, oatmeal- I think celiac disease is like an allergy- some of us have it, some don't- however more research is needed.
DavidÂ
Hi, Margaret.
I have gluten intolerance, not full-blown celiac disease. If I accidentally have wheat or another forbidden grain, I experience terrible intestinal discomfort for several hours. Someone with celiac disease would have to be rushed to the ER under the same circimstances. Gluten in the small intestine, where nutrients get absorbed, wreak havoc with the intestinal lining, thereby limiting most nutrients from being absorbed. The Italians conducted gluten studies a few years ago and highlighted the importance and frequency (1/133 people, according to the celiac.org web site) of gluten sensitivity to the medical community. It has taken a while for doctors in the US to follow up on this, but I think you would be in good hands in Italy.  Here are lists of symptoms and blood tests for celiacs: http://www.celiac.org/downloads/Face-of-Celiac-Brochure.pdf I have read but had forgotten that celiac disease can cause bone-thinning and multiple fractures - a double whammy for someone with both celiac disease and MM. On a more positive note, fear not: gluten-free pasta is now made from brown rice, quinoa, corn or lentils. Almost as tasty as wheat pasta!
Greetings all! I'm just back from our trip to the UK to harvest stem cells, and trying to catch up on everything. I had wanted to post on this celiac connection because it has been on my mind for a few months, since I read something somewhere (can't remember where -it popped up on my myeloma google alert) about a possible connection between celiac disease and myeloma. I have no idea if my husband has celiac disease, but on the Gerson diet he essentially gets no gluten except in oatmeal (and from what I gather it is a debate whether celiacs can eat oatmeal or not - some sources seem to think it is ok). So, could avoidance of gluten over the past 8 months have helped him to CR? who knows? But it is certainly an idea.
Regarding pasta, surely there are some gluten free pasta products out there? but yes, I know, to a true Italian they are probably as anathema as American boxed "tabouleh" mixes are to someone who knows the real thing. (I remember first arriving to the US, from Jordan, where I grew up, and picking up a box of tabouleh mix and noting that the directions read, 'add parsley if desired." huh? tabouleh IS parsley, with a few other ingredients. Oh well!)
I think linking websites is a great idea (and Margaret, could I suggest that you have a signature line in your posts on other lists that includes the URL for your website?). I am currently pondering this issue of how to keep on top of the world of myeloma without going crazy and spending 20 hours a day reading emails and blogs and websites. I got back from our UK harvesting trip to find over 1250 emails in my inbox! That's too many emails for anyone to read, much less someone trying to make 13 fresh juices a day plus chase two kids and in between pretend to be a useful member of society and even work a little. There are probably no real answers, but the easier it is to link to other sources of good information, the better.
I'm going to create a separate post about our harvesting experiences, because I wanted to share what Dr. Gareth Morgan had to say. But, the short answer is, we got 3.04 million cells. That is not a terrific harvest by any means, and it was a little disappointing. But, we got what they say is the minimum needed for two transplants. And, since we hope NOT to go to transplant in any case, I guess it is ok. At least the staff at Royal Marsden were all very nice. And my five year old thought that the hospital gift shop was the cat's pyjamas! :-)
Lisa
Lisa-
"I think linking websites is a great idea (and Margaret, could I suggest that you have a signature line in your posts on other lists that includes the URL for your website?). I am currently pondering this issue of how to keep on top of the world of myeloma without going crazy and spending 20 hours a day reading emails and blogs and websites"
I agree with you- I am considering adding a blog to beating-myeloma.org- However, this listserv is not strong enough yet to be sent daily- I am talking to the web co to explore options-
This list will not, not go away- I am just talking about it arriving in your inbox 4 times a week instead of 7- I will post to the list any changes before they happen.
 In the meantime, Margaret's Corner will be linked to the home page. I will be trying to figure out how to link other important sites as well-
DavidÂ
Hi Lisa,
I look forward to reading your post about your husband's harvest and about the insights you gleaned in England. Did they use AMD-3100 (Mobilix?) to try to boost the cell #s? That's what got my husband Dave to the 5 million or so mark.
best wishes,
Patricia
Hi all,
Regarding my husband's stem cell collection, they only used GCSF injections. He started the injections on Friday, and by Monday when they were supposed to have started the collection, the counts were too low. We got worried, but they told us it happens. On Tuesday they were able to collect, and by Wednesday they had gotten 3.04 million cells. We were poised to delay our return to Cyprus (booked for the next day) but they said 3 million was enough. I sure hope they are right. If they hadn't been able to collect they would have used something else, but it seems they felt it was ok like this. Personally, I would have been happier with more cells - but not at the expense of chemo.
Here are some notes from our meeting with Dr. Morgan. He's a nice person, was friendly and open and encouraging. Not too interested in anything alternative, though. He admitted that there MIGHT be something to curcumin (he said curcumin was iffy - but that there was some research emerging). He had no time or patience for any discussion of dietary approaches, however. He wasn't rude about it, just briskly changed the subject. (I tried to mention the case of John Wagner but he brushed me off by saying that solitary plasmacytomas can give results like that - and then said, "Ok, back to the world of conventional medicine."
Anyway. The first thing he had to tell us was actually very encouraging: he mentioned that 25-30% of patients are alive at 20 years (after ongoing treatment, especially transplants). That is a statistic I have not encountered till now. He mentioned that the disase free period is not good from Thal/dex without maintenance - maybe six months.(so, that will be one way to konw if the Gerson/curcumin approach is working, in our case, since my husband is now off the drugs).
He said that the normal approach was to move to transplant, but he was fine with the idea of stopping treatment and monitoring carefully, and then doing a transplant at first relapse. He said that there is no difference between upfront TX and later TX. He did say that we should NOT do a double auto - that there is no good evidence for double autos. And, he said DEFINITELY DO NOT DO AN ALLO, that he would completely dissuade us from contemplating an allo (unless absolutely desperate). As for monitoring, he said that it is very important to do both immunofixation and electrophoresis (something we will have to take up with our doctor, who has mainly been doing electrophoresis). At first relapse, he would reintroduce the Thal/Dex to get to best situation before TX. He would also add cyclosophamide or Velcade to reduce numbers further, if necessary. He said he personally doesn't use Thal/Dex up front without adding cyclosophamide, because the response is so poor.We asked how many people on Thal/Dex get to CR. He said 4 %. So, that was encouraging in the sense that it reaffirms our sense that either we're just really lucky, or our alternative efforts have made a difference.
He thinks that transplant is better than Velcade - that there is more of a history there and they know how it works. He is less enamored of the new drugs like Velcade, and says they should be saved for later options, after post-TX relapse. He said that there is a 5% mortality risk ofauto tranplant, but that for someone in my husband's situation (youg, overall good health) the risk falls to 1%. He admitted the side effects of TX, including doubled risk of AML, damage to the immune system, and "any other nasty thing you can think of"
His idea of maintenance Thal is 100 mg. He said that PN is inevitable, a matter of time, and that median time to PN is 1 year. My husband mentioned his feeling of plasticity in the face and Dr. Morgan said that he's had other people mention this, and that it might be a form of PN. We said that our doctor told us it is unrelated, and he laughed and said that he tells his patients too that it is unrelated, but that when you have 20 people complaining of the same thing you begin to wonder.
Given my husband's infection in his back, he agreed that we could not consider moving to transplant at this time. Also, he urged us to STAY OFF DEX, as it impairs the ability to heal.
The other people we interacted with, like the transplant nurse, were pushing transplant up front. No one thinks waiting is the ideal thing to do, just that it is tolerable.
Now we're back home. There's a little bit of a let down, after the months of anxiety about harvesting stem cells - first, that the harvest wasn't great, and second, that that focal point is removed, and now we're back to the grind of just trying to maintain the status quo (and hopefully get better). The psychological component is hard. Also hard was being in the ward and seeing people really not doing well all around us. But, my husband overheard a couple of conversations wtih people who have been fighting the disease for a very long time - I think 21 years in one case, and 28 in another. (I want to double check those numbers with him, because I wasn't there).
So, that's the summary. England was in foliage season, which was nice for me as an ex-Bostonian who really misses the change of seasons here in Cyprus. It didn't even rain while we were there, either! We stayed in a gorgeous mansion (converted into apartments) which was sort of isolated, making transportation and grocery shopping a problem, but it sure was pretty.(We were in Redhill; the hospital is in Sutton). And we took the opportunity to reconnect with some old friends in the London area we haven't seen in 10-12 years. So, there were good parts to the trip as well, although you could not call it a holiday. The hospital staff expects us to be back soon for a transplant. We'll see.
Carole MMwife/caregiver Arizona
Would like to suggest that if, in responding to a topic or in creating a topic, the writer has a blog site that would enable us to know more about his/her experiences undergone in the MM world, a reference to this site would be part of the "signature" or would certainly be made reference to. When I do find these blogs, I realize what an amazing cadre of Strength and Leadership that exists in our own special world......
Carole-
I hope to program several of the most important sites and blogs into the home page (home page of the listserv/forum-not the home page of the site itself) I see these sites as being:
1) Margaret's Corner
2) Both the MMA site, listserv and Beth's Blog (Beth is the manager of each)
3) MM Acor- I am not sure about the acor list as they are often intoller ant of the spectrum of views- I would like opinions here, please...
3) CancerCare, DailyStrength.com- others???????
David
My suggestions: Minnesota Don's blog, Myeloma Hope (he is also a member of B-M).
I would also link to the Michael Gearin-Tosh story, you can find the link on my blog. I think newcomers in particular would find his story fascinating etc.
And how about Cancer Compass? There seems to be a bit of interesting activity going on there recently (the celiac's disease discussion, e.g.).
That's it for now.
Take care, everyone!
Margaret
Florence, Italy
Blog URL: http://margaret.healthblogs.org/Â
David,
I would encourage you to include sites that have an integrative approach to cancer. If you decide to include ACOR, you might mention that it has a more conventional approach. Newcomers may benefit from knowing about it and its focus.
The only grain that doesn't illicit Celiacs disease is corn. It has to do with corn is the only grain protein that has less than three glutamines in series. The thinking is when there are three or more glutamines in series the body confuses it with another biological agent.
Terry
Hi, Terry.
I seem to do OK with corn, perhaps for the reason you gave, which I'm not familiar with. I've also started eating gluten-free oatmeal, a grain I had to give up for several years. It has to be my favorite. I also have no problem with rice and quinoa. I think most celiacs avoid grains as much as possible, although the Celiac.org web site emphasizes staying away from wheat, barley and rye. Those are difficult, and there are others as well, such as modified food starch, soy protein isolate and other hidden additives in processed foods. Celiac patients also have to ensure that pharmaceuticals don't contain gluten, which they sometimes do in the added fillers, which can change without notice.
My guess is you also have reactivity to certain food proteins due to your gut not being totally in-tact, or a lack of optimum digestive power to reduce the proteins down to unrecognizable peptides/amino acids. This is a problem in infants with very immature guts. Remember all proteins, except for human proteins, the body recognizes as foreign if they still exist in large enough peptides by the time they are absorbed into the blood stream and attacks them. The gut is that area of the body where they are allowed to normally reside until they are digested down to where the body can't recognize them as "foreign". There are products like Alimentum, a infant formula by Abbott Labs/Ross Products, where the protein is predigested down to where ~ 50% of the protein are individual amino acids. I would not recommend this for adults because of taste, but infants don't know the difference and actually learn to prefer the taste, not to mention in severe cases, would starve to death without it. The easiest in-tact protein for infants to digest are whey proteins because of the order of amino acids, what amino acid is connected to what other amino acid, and because it does not denature as easily, where the protein folds on itself making it harder to get to the amino acid bonds which have to be broken to be fully digested. For adults, real yogurt is partially digested by the culture, but only barely.
Terry
Terry
A great supplement for pre digested proteins is called Sea Vive. It is a totally assimable pre digested fish protein. It gives your body the amino acids it needs for daily functioning as well as colostrum for immune support. People with gut problems should check out the information on this product on the internet. I had a consultation with Dr. Sherry Rogers a few years ago and she highly recommends this product. She sells no products in her office and requires scientific data on all products that she recommends.
 Sorry about the large print. I just cut and pasted this to make it a little easier to read about.
Mary joÂ
Take SEAVIVE When Your Immune System Needs A Boost ---
It's A Whole Lot Easier and More Effective.
SEAVIVE contains the highest quality Colostrum (lacttose-, casein-, and fat-free-D)
and the most bioactive B-1, 3-D glucan available. Further enhanced with SEACURE
and Vitamin C. SEAVIVE promotes an actively functioning Immune System to
help you maintain desirable health.
Doctors and their patients continue to report excellent results with SEACURE
fish protein concentrate as support for digestive health, tissue integrity,
 and various protein related health concerns
Pre-digested by WHOM, or even worse, by WHAT?
(sorry, my funny bone just couldn't resist! ;-))
But seriously, this opens up another kettle of fish or whatever the saying is (too many years spent living in Italy, I forget stuff like that): do we want to boost our already over-active immune system or not? I don't recall (it's early in the morning here, coffee hasn't sunk in yet...) if we have discussed this issue before, but it is one that has always interested me. I still have to do more research in this area, but my gut feeling is that we should boost at least parts of the immune system. What do y'all think?
Margaret. Florence, Italy. Blog URL: http://margaret.healthblo...
Margaret and all-
"...do we want to boost our already over-active immune system or not? I don't recall (it's early in the morning here, coffee hasn't sunk in yet...) if we have discussed this issue before, but it is one that has always interested me"
This issue has always interested me too- most every lifestyle change I have made since my dx involves boosting my immune system. I have read posts for years (on other lists as well as this) cautioning mmers not to boost our immune sytems but i boost mine nonetheless. David
Terry, I think you've figured things out pretty well. Yogurt is OK in small quantities, and most other foods are much easier to digest now than they were several years ago. At that time, in addition to gluten, I was also eating too much sugar, which resulted in poor digestion and compromised health. I've read that poor digestion usually precedes cancer, and cancer is a deficiency of amino acids. Can you add to that theory? Or dispute it?
Cathy,
 The medical community has looked for common factors for MM. The most common factor is chemical exposure, herbicides and pesticides. The chemicals cause gene mutations and the rest is history. I am a chemical engineer and early in my career, I worked for an organic synthesis company. When I was getting my transplant at the Mayo, the procedure is done as an outpatient. I was surprised that several of the MM patients in the Transplant House where I stayed lived on a farm. I do believe that gene mutation from outside attack is the most likely culprit. It could be chemicals or too much sun bathing, etc. You likely have to have a weakness in your immune system, to be one of the ones who gets MM. It should not be surprising that MM is known as the old peoples disease. The longer you are under attack, the more likely you will be to develop any disease.
If there is a Celiac disease connection, Celiacs may do nothing more than weaken your immune system enough to allow the MM to take hold.  Just a thought, I have not read this anywhere.
Terry
Hi all, I am one of those who reads all your posts to gather info about MM. I am stage 1, fighting all the other things that go wrong with this disease. I recently had a tumor removed from my T-4 area of my spine that they say is not related to MM. But a biopsy of the area showed 10% there. What struck me about this post is the common factor of many of those who lived on a farm. I was married to a farmer for over 20 yrs, he is still healthy and I have cancer. I never handled chemicals myself, but certainly was exposed to some by just being there. So I guess I have a weaker immune system than he does. I am the only one of seven children with cancer, but my siblings all have some health problems. My mother drank during all of her pregnancies, and I am wondering if that could also be a factor in my weak immune system. Just a thought. D Jones
djones-
Several questions/comments-
You mention that you are stage 1- a mm diagnosis is bad but stage one is better than 2.3.4- you may have more time to try supplementation (Margaret's Corner and curcumin for example), nutrition, detox, exercise, hydration, etc. Staging relates directly to survival time.Â
Please read my post about revlimid as front line therapy.
You mention one tumor- does this mean you were diagnosed with a single plasmacytoma? 3 percent of single plasmacytoma patients to not develop into full-blown mm.
I wouldn't consider the fact that because your husband is healthy and you have mm after 20 years both living on a farm to mean that your immune system is "weaker." You may react to pesticides differently than your husband does. I was dx with mm after five years working in a printing plant where most of the employees had worked there much longer.Â
"Hi all, I am one of those who reads all your posts to gather info about MM. I am stage 1, fighting all the other things that go wrong with this disease. I recently had a tumor removed from my T-4 area of my spine that they say is not related to MM. But a biopsy of the area showed 10% there. What struck me about this post is the common factor of many of those who lived on a farm. I was married to a farmer for over 20 yrs, he is still healthy and I have cancer. I never handled chemicals myself, but certainly was exposed to some by just being there. So I guess I have a weaker immune system than he does. I am the only one of seven children with cancer, but my siblings all have some health problems. My mother drank during all of her pregnancies, and I am wondering if that could also be a factor in my weak immune system. Just a thought. D Jones"
I notice that most of the tests for celiac disease (gluten intolerance) involve some measurement of IgA or IgG. For most of us myelomiacs, however, IgA and IgG are all messed up. My IgG is double the high end of normal and IgA is practically nonexistent.Â
Does anyone know if the standard tests for celiac disease would be useful if performed on the blood of a person with myeloma?
Don
http://myelomahope.blogspot.com/
In fact, Don, a friend from the UK (blog reader) took this test and was told that his IgA was too low for the test to be accurate. Mine is low, VERY low, too (I am IgG kappa).
Perhaps the best way to tell if we are gluten-intolerant is to go off gluten-ridden products for a couple of months and see what our numbers do. That could in fact be ONE reason (?) you are doing so well, now that you are on a gluten-free diet. Any other opinions on this? I personally would, of course, prefer to have a test done, but I am prepared to do the gluten-free test starting in January. I have to find that gluten-free pasta that Cathy spoke about. I have almost positive that I have seen it in the organic supermarket here.
Margaret. Florence, Italy. Blog URL: http://margaret.healthblo...
I thought it was pretty easy to tell if you have gluten intolerance, or carbohydrate intolerance as you would have stomach or intestinal problems, ie gas, bloating, burping, etc.Â
I've never heard that you had to go without to recognize the intolerance. Many people develop the intolerance as they age, and start to find that after meals they feel bloated, gas-y, or crampy. It's also very common for menopausal women to become gluten, lactose, or carbohydrate intolerant.
Testing would be easy, but how much better for one to really see and feel a difference by eliminating a problem food. Then you'd know for yourself - test or no test!  Â
Tinker
PS If you really like pasta, don't expect a whole lot from the rice or gluten free pastas! But then again, you might think it's better than none at all.
Margaret and Don, I took a saliva test that measured gliaden levels before a celiac blood test had been developed and before I had MM. I don't know what kind of results a MM patient might produce with such a test today, but the test may be worth looking into. I'll see if I can find the name of the lab that did the test and ask them what they think. An easy way - for me, anyway - to test gluten intolerance is to consume 1-2 T. of oat or wheat bran on a fairly empty stomach. If you notice intestinal discomfort within a couple of hours, you've probably developed an intolerance to gluten.
Hi everyone! A blog reader recently left me a comment on AVEMAR, which is a "nontoxic fermented wheat germ extract demonstrated to significantly improve the survival rate in patients suffering from various malignancies." Observational data shows that it works against MM, too. I am looking into this extract today, but was wondering if wheat germ is included in the celiac's no-no list. Sorry, but I confess my total ignorance in this field, a very new one for me.
Thanks!
Margaret. Florence, Italy. Blog URL: http://margaret.healthblo...
It was a blood test with 4 components- one vile of blood.
While looking around for info on cellic disease and wheat germ, I found these studies- like to lymphoma but no mention of mm-
 Â
  2  Next »
Increased Cancer Risk Associated with Delayed Diagnosis of Celiac Disease
Celiac Disease Increases Risk of Non-Hodgkin Lymphoma
Increased Risk of Additional Lymphoma Types in those with Untreated Celiac Disease
Malignancy and Mortality in People with Celiac Disease: Population Based Cohort Study
The doctor told me that the tumor they found on my spine was not a plasmacytoma, but a meningioma. They did find 10% cancer there in the bone marrow. Not the same as my hip. This tumor can return, so I have to have follow up MRI's to monitor this. I dont remember ever having any direct contact with pesticides while on the farm, but did work in the barn every day. Thanks for your input.
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