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ECLAIREP Posts: 75
1/13/12 11:18 A

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So, you can never eat pizza?

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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
1/11/12 1:37 P

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You are right in that if it is a trigger you might reduce the the severity of flares. It well not affect what you all ready have with your MS. I have several auto immune diseases that are associated with gluten having caused damage for years before I went gluten free. I have noticed that when I have an accidental consumption of gluten that it does cause flare ups in those diseases to be more sever until the gluten is out of my system.

You are right that gluten free advocates are hard core. It is an attitude of none is aloud. That is because the primary reason for being gluten free is Celiac Disease in which an gluten consumed is bad for you and cause damage. There are a lot of people (like my sister) who have been gluten free for years and every now and then cheat on the diet and have no problems. While if I were to cheat I have problems every time. So I do not risk it.



Mark
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1/10/12 1:42 P

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Thxm GrnThmb. That is helpful information.It gives me more food for thought. I will likely choose to continue to experiment with low gluten and enzymes until such time as I feel confident enough to schedule a couple of weeks trial of GF. I have a vacation coming up next month, so I'll likely wait until sometime after that.

I probably need to do more research on what you call triggers. If gluten is a trigger for my MS, then it sounds like you are saying that, once gluten is out of my system, I'll have some symptoms/reactions to consuming gluten.

So, my question is (and you may not have an answer to this), if gluten is a trigger for my MS, and gluten does not currently appear to be "triggering" intestinal, or, other typical gluten symptoms, what is it "triggering"?
- I've assumed that, if gluten is a trigger for me, that going off gluten may reduce the frequency and severity of my MS flares? I really don't anticipate that going GF will get rid of my residual symptoms (balance, fatigue and stamina issues), as there are currently lesions in my brain that cause those.

I may have to go to my msworld.org message board to ask some of those questions. Sometimes, though, I feel like the GF advocates on that board are more hard-core than what I want to deal with. Here, I've felt accepted (and not pushed) for where I am right now in my journey in thinking about GF possibiities for myself.

~ Faith

Leader:
Doing It With Multiple Sclerosis;
Plateau Busters!!!!;


2005-2009: 185 lbs. Some minor yo-yo-ing.
2010/Sept: 180 lbs; Waist 46"
2011/Jan 1: 160 lbs; May 22: 133 lbs for DD's wedding
2012/Jan 1: 119.8 lbs; May 1 117.2 lbs
2013/Jan 1 - 121.2 lbs
Monthly wt is in my SP intro

Reached 118 lbs for about 6 months; working hard to maintain weight, w peri-menopuase now;
Goal range: 107-118 lbs/W31.5. Under 123 OK


 current weight: 121.6 
 
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JENCORINNE's Photo JENCORINNE Posts: 1,932
1/10/12 1:13 P

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Only people with Celiac Disease can get Dermatitis Herpeformitis, so if Donna's only symptom is DH she does have CD.

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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
1/10/12 12:58 P

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I understand completely what you are saying. Some people respond and react to things differently. You are trying to see if gluten is the cause or trigger for your MS since there is an association between them. The only way to really find out if YOU are one that has gluten as a trigger is to go completely gluten free. That is really the only way to test it. It can take a couple of weeks for your body to completely get all the gluten out of your system because it does get in your blood stream. You may not respond at all to going gluten free because that might not be one of the triggers for your MS. If that is the case and you have tested it for yourself then you know that the gluten free diet is not for you. But if you never go completely gluten free you will not know if gluten is one of your triggers.

The reactions I had with gluten is because I do have Celiac Disease. And eating gluten containing foods after having been off them caused symptoms to show up. That is very typical with people who have Celiac Disease and even Gluten Intolerance. If you do not have either of those but gluten is just a trigger for your MS then you well not have the same types of reactions that I have.

There are some members on the team that do not have Celiac Disease. Donna is one. She has Dermatitis Herpetiformis which is a skin reaction to gluten. There are others that just feel better when they are on the gluten free diet even though they do not have either CD or GI.

Mark
Leader: Gluten Free and Healthy
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Co Leader: Ankylosing spondylitis is anky-losing bad habits!
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1/10/12 12:29 P

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Thanks for your comments, GrnThmb.
- I already have no obvious gluten problems, so it is difficult to ascertain if either decreasing gluten, or adding enzymes and probiotics regulate anything.
- Glad you brought up pro-biotics. My enzyme includes some probiotics, and I take an additional probiotic supplement.
- Interesting that, after you went gluten free, you experinced severe reactions when your body then encountered gluten. I'm not sure that I wish to subject my body to reactions, when I am not currently having them. That seems like one more reason that might make me rebel against going 100% GF.
- I know that many GF advocates think GF has to be an all-or-nothing commitment. But, it just makes sense to me that, if going GF avoids triggering the reactions that gluten causes, that decreasing the amounts and the fx of gluten would avoid triggering those reactions every time gluten is avoided. If gluten is unhealthy for someone, it just has to be more healthy to cut back than to make no changes at all. And, if enzymes can mitigate those triggers even further, I think that I am making some healthy changes that make sense, even if total commitment is not yet the place I'm willing to be.
- Thanks for your comments, GrnThmb, about barley and rye. I guess I haven't looked into the more "hidden" sources of those ingredients. However, I've been low on simple carbs, and especially white flour products for quite some time already. And, that has meant, usually, no cold cereals and no crackers. I suspect that even hidden sources of barley are not a big issue in my diet.
- Regarding oatmeal, I've heard that even regular oatmeal (although it causes problems for some people) seems to be OK for many. I eat oatmeal most mornings, and I don't purchase a GF product. Again, since I do not have CD, and because I take enzymes and probiotics, I tend to believe that I can get by with a more flexible diet. I really don't wish to cut out all grains, because I think our body benefits from some of what we get from them. And, if I cut out wheat and barley and rye AND oatmeal, there aren't a lot of grains left. There are other issues with corn products that concern me, so, even though they are not a gluten issues, I don't eat a lot of corn products either.

~ Faith

Leader:
Doing It With Multiple Sclerosis;
Plateau Busters!!!!;


2005-2009: 185 lbs. Some minor yo-yo-ing.
2010/Sept: 180 lbs; Waist 46"
2011/Jan 1: 160 lbs; May 22: 133 lbs for DD's wedding
2012/Jan 1: 119.8 lbs; May 1 117.2 lbs
2013/Jan 1 - 121.2 lbs
Monthly wt is in my SP intro

Reached 118 lbs for about 6 months; working hard to maintain weight, w peri-menopuase now;
Goal range: 107-118 lbs/W31.5. Under 123 OK


 current weight: 121.6 
 
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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
1/10/12 11:33 A

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My brain sometimes side tracks. Some people really respond well to digestive enzymes and probiotics. It is always worth a try taking them and well not hurt anything. I myself never had any improvement with digestive enzymes but the probiotics really seemed to help me, especially after I was on long term anti-biotics. They seemed to help regulate my system so that I was more regular. But it seemed to at first cause a bit of diarrhea which cleared up after a few days.

There are some that say that enzymes well make you so you can eat gluten without problems. But there is no proof that they work. Many do find that they help with symptoms after eating gluten but not that they take it away completely. There are many sites that you can find that will say that they sell enzymes that well make it so you can eat gluten. Most of these are false and just want to take your money. However there is a medication that is being studied that is supposed make it so Celiacs and those Gluten Intolerant can eat normal diets with out problems. My doctor tried to get me in on the trial but I was all ready in a medical trial for a different problem so I was not accepted in it.

I found that after I went gluten free, that when I did eat things with gluten in them I had severe reactions which seemed so much worse then when I was still eating gluten. My body got used to not having gluten continually and when I ate something with gluten in it my body revolted.

You said that it has been easy for you to avoid Barley and Rye. Rye is very easy to avoid. But Barley is in a lot of foods and the source of malt and malt flavoring. Most cereals seem to have barley in them.

Oats used to be on the list of forbidden foods until they discovered that most people with Celiac have no problem with certified gluten free oats (those grown in fields not rotated with wheat and having no cross contamination in processing). However they do still say that .075% of people with Celiac still react to oats. I am on of those "lucky" few that fall into that category.

Edited by: 1GRNTHMB at: 1/10/2012 (11:53)
Mark
Leader: Gluten Free and Healthy
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Co Leader: Ankylosing spondylitis is anky-losing bad habits!
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1/9/12 8:54 P

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Wow. Sorry to hear of your previous problems, Jen, both with dx, and with insurance. I've had problems (albeit different ones) with both of those issues as well.

And, yes. Thanks for understanding when I don't jump on the bandwagon right away. I absolutely will continue pondering. And experimenting. Yesterday I ate GF. Today, I ate several things with gluten, but, I chose to save them all until supper, rather than spreading them out during the day. Wondering if more frequent gluten (because every gluten exposure could trigger something?) is worse than the same amounts of gluten more spread out. Hmmm. I don't know. I expect that I will likely eat GF on Tues and Wed too. I'll decide about Thurs later; it will probably end up being a go-out-to-eat meal.

Hearing of others' experiences helps me continue to have new things to ponder, and might lead me slowly down the path to evenutally being ready to go totally GF. Thanks for sharing your experiences. :-)

~ Faith

Leader:
Doing It With Multiple Sclerosis;
Plateau Busters!!!!;


2005-2009: 185 lbs. Some minor yo-yo-ing.
2010/Sept: 180 lbs; Waist 46"
2011/Jan 1: 160 lbs; May 22: 133 lbs for DD's wedding
2012/Jan 1: 119.8 lbs; May 1 117.2 lbs
2013/Jan 1 - 121.2 lbs
Monthly wt is in my SP intro

Reached 118 lbs for about 6 months; working hard to maintain weight, w peri-menopuase now;
Goal range: 107-118 lbs/W31.5. Under 123 OK


 current weight: 121.6 
 
180
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127.5
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JENCORINNE's Photo JENCORINNE Posts: 1,932
1/9/12 5:45 P

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My unorthodox finding out about gluten being an issue came from a psychic hence my denial for a while. Then I developed Dermatitis Herpeformitis (DH), it is a very painful rash that some people with CD get, best description is imagine the worst poison oak/ivy then thrown in a wool rug with stinging nettles and biting ants. It starts both knees, both elbows, buttocks and/or back of the head. my head was the only place I didn't have it by the time I found out that was what I had. No insurance so kept dealing with it until I couldn't stand it anymore. My legs were worst from ankles to thighs were one big bloody mess. Once I went GF the DH got better but still took about 2 months to stop itching. There is one medication but it causes liver damage something that many CD's already deal with so opted to not take it.

After I started looking at my symptoms and my reactions after my accidentally on purpose incident I realized I had been dealing with it since an accident at 13. I think of it like being drunk or on drugs for those 20+ years, my brain had major brain fog. I barely graduated from HS after being an A/B student before the accident.

continue pondering, I will do it at times and its amazing what it will resolve or come up with.


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1/9/12 5:19 P

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Jen --

Thanks for your comments. Interesting, how going low gluten didn't tend to yield enough health benefits for you to initially make the leap to totally GF. (You don't say what motivated you to eventually make the leap.)

I mean, really. Thanks. Your comments got me thinking.

Although I find it interesting that, after going GF, you became aware of how 20+ years of gluten had caused some symptoms that were more severe than you had previously noticed, I also note that you say that you have CD.

My MIL has CD (celiac disease), but has also been fairly resistant (as I am, and, it seems, as you were initially) to going totally GF. She is the one who got me started on digestive enzymes, and she takes them both to ward off the effects of CC, as you do. But, also to allow her to cheat on her diet sometimes. However, she acknowledges, and the reading I've done seems to confirm, that enzymes really don't make cheating worth it. She continues to experience unwelcome symptoms when she chooses to eat gluten.

I continue to feel healthy, except for my MS symptoms. Whether I eat gluten or not. Whether I take enzymes or not.

And, even my MS symptoms have improved, some, since I've a) changed my diet, and b) lost weight. So, I really am still at the point where you say you were before. You didn't feel enough "better" to have you "make the leap to totally GF". And, partially GF doesn't not only help me not feel enough better, but, because I'm not experiencing gluten intolerance symptoms, it actually does not make me feel any better at all. (I have some GF days every week.)

In spite of that, I likely believe what you say about the "bastardization of wheat in the last century", and, MS, like CD, is an AI disease. So, I do question whether going totally GF would help my AI disease in the long run.

I can't imagine, though, that because I don't have CD (like you do), and because I don't experience symptoms of anything, other than MS symptoms, that a one month trial would show me anything. I only experience brain fog when I am in an MS flare; I experience regular fatigue, but that is a typical MS symptom, and, it has improved with my better diet and my weight loss; I don't attribute that to gluten consumption. I don't experience achy joints, tummy issues, skin issues, etc.

I typically have one MS flare per year, although it varies from two a year to one every 18 months. I expect that I'd need to look at the long-term results, and not the short term to see if GF impacted my MS. And, there are no other symptoms to look at. That is what makes committing to this drastic change so difficult. My understanding is that, unless one has CD, taking digestive enzymes allow for more flexibility with the diet.

Hate to be so long-winded. (My husband hates it when I do that; I tend to think out loud and share all of my thoughts.) But, I guess that, because you, Jen, have CD and I do not, I expect that your results with being less than totally GF, and with CC, would be different than mine.

But, as I said, you got me thinking. And, sometimes, I have to ponder things for awhile before I'm willing to take any leaps. Just not done pondering yet, but, also not ruling out taking a leap at some point -- even if it is only a one-month trial kind of a leap to start with. Thanks for that suggestion, Jen. It's a new thought for me.

~ Faith

Leader:
Doing It With Multiple Sclerosis;
Plateau Busters!!!!;


2005-2009: 185 lbs. Some minor yo-yo-ing.
2010/Sept: 180 lbs; Waist 46"
2011/Jan 1: 160 lbs; May 22: 133 lbs for DD's wedding
2012/Jan 1: 119.8 lbs; May 1 117.2 lbs
2013/Jan 1 - 121.2 lbs
Monthly wt is in my SP intro

Reached 118 lbs for about 6 months; working hard to maintain weight, w peri-menopuase now;
Goal range: 107-118 lbs/W31.5. Under 123 OK


 current weight: 121.6 
 
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MAMABUGAZ's Photo MAMABUGAZ SparkPoints: (19,845)
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1/9/12 1:09 P

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Thanks, Mark. I'm assusming, since you avoided the digestive enzyme question that you might not have knowledge, or, experience, about them? Still looking for comments regarding knowledge or experience with digestive enzyme use, rather than going 100% GF.
- Also, are there others on your team who are trying the GF diet for non-celiac reasons?
- And, anyone using a GF diet (perhaps the Best Bet Diet) for MS?

Regarding the "if nothing else, you should try to be wheat free" advice, going wheat free is the problem. I don't eat rye or barley, so wheat is the only gulten I am trying to cut out. So,, there is "nothing else".

I do fine when I cook for myself. the problem is going out to eat. Pizza crusts, mexican food (flour tortillas), buns on fast food burgers (burgers at my local diner are tasty enough to eat without a bun, but, I can only manage to get by with half, but not no, bun at fast food places), occasional egg rolls, baked goods at special occasions, etc.

When my only motivation was weight-loss, portion size was an easy way to limit wheat flours. but, I'm having a difficult time with the idea of not only limiting them, but eliminating them altogether. And, I don't have any doctor's order to avoid gluten, so I don't wish to expect others to cater to my dietary whims when they cook, or, when we choose where to go out to eat.

I have made so many changes to my diet in the past 18 months that I believe to be healthy. It is just difficult to decide to make this particular drastic change when I remain so unsure about whether it will yield health benefits for me, in particular, when I do not appear to be experiencing symptoms.

Will continue to experiment with decreasing wheat and taking my digestive enzymes. What I read, is that, in non-celiac diseases, "using very specific enzymes for gluten intolerance has worked quite well in reducing or eliminating the need for a gluten-free diet". So, I am hopeful that the combination of reduced gluten and supplemental enzymes will produce better managament of my MS without going 100% GF.

As I said, I am still looking for comments regarding knowledge or experience with digestive enzyme use, rather than going 100% GF.

~ Faith



Leader:
Doing It With Multiple Sclerosis;
Plateau Busters!!!!;


2005-2009: 185 lbs. Some minor yo-yo-ing.
2010/Sept: 180 lbs; Waist 46"
2011/Jan 1: 160 lbs; May 22: 133 lbs for DD's wedding
2012/Jan 1: 119.8 lbs; May 1 117.2 lbs
2013/Jan 1 - 121.2 lbs
Monthly wt is in my SP intro

Reached 118 lbs for about 6 months; working hard to maintain weight, w peri-menopuase now;
Goal range: 107-118 lbs/W31.5. Under 123 OK


 current weight: 121.6 
 
180
162.5
145
127.5
110
JENCORINNE's Photo JENCORINNE Posts: 1,932
1/9/12 1:09 P

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I have CD and only have digestive enzymes to ward against feeling the effects of CC(Cross contamination). I had a really unorthodox diagnosis that led to a traditional Dx in the meantime between the 2 I went low gluten and although I felt better it wasn't enough to have me make the leap to totally GF. Once I did make the leap I noticed some things clearing up within 2 weeks others a couple of months. It wasn't for another month when I got CC'd (accidentally on purpose - I ate before going out but got hungry and my friend didn't finish her fries. I knew they were CC but didn't think a few fries would hurt) did I realize how far I had gone in healing, my brain fog was severe and 20+ years of gluten leached out of my brain so slowly that I hadn't realized how clearer head I was.

Do yourself and me a favor, go completely GF for a month and after that month try to eat some gluten. Note any reactions, it doesn't have to be MS related, it could be exhaustion, mind fog, achy joints, tummy issues, skin issues, etc. I know some of what I listed can be MS related but I'm sure you can tell the difference. I have a friend with MS and she can tell when something is MS related or not.

I will add that I'm on the train of thought that believes that all AI can be helped by going GF. I believe that the bastardization of wheat in the last century has led to the explosion of AI's that were pretty unheard of 60+/- years ago.

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1GRNTHMB's Photo 1GRNTHMB Posts: 4,791
1/9/12 12:41 P

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If nothing else, You should try to be wheat free. Wheat cause more problems then any of the other grains. And often people find that just being wheat free is all they need. I know you said that you do not feel any different while on the diet. But some people do not notice a difference right away. It might take so time to have an effect on you. I wish you luck in what ever you do.

Oh, And some people seem to respond really well to taking digestive enzymes and probiotics. So it does not hurt to try to see how they work with you,

Edited by: 1GRNTHMB at: 1/10/2012 (11:27)
Mark
Leader: Gluten Free and Healthy
teams.sparkpeople.com/gfh

Co Leader: Ankylosing spondylitis is anky-losing bad habits!
teams.sparkpeople.com/as


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MAMABUGAZ's Photo MAMABUGAZ SparkPoints: (19,845)
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1/9/12 11:18 A

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Hi. Joined this SparkTeam several days ago, and introcuded myself here. www.sparkpeople.com/myspark/t
eam_messa
geboard_thread.asp?board=-1x1
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7233329


I described myself as a fence sitter. By focusing on cutting refined carbs during the past year, I have already, by default, decreased my consumption of gluten. I don't have celiac disease, and I don't exhibit symptoms of gluten intolerance. it is difficult to motivate myself to commit, 100%, to such a restrictive diet when I am unable to actually observe benefits.

However, I have mutliple sclerosis, and there is a school of thought that believes that gluten is contraindicated. Since I am not exhibiting symptoms of gluten intolerance which I am attempting to decrease or get rid ot, it may take a year or more of no MS flares for me to be able to see that, maybe, a GF diet could be effective in helping to manage my MS.

Because I am reluctant to jump into a full GF commitment, I am beginning to supplement my diet with some digestive enzymes. It is said that, for some, these enzymes allow more flexibility with a GF diet. However, I realize that there is more than one school of thought about that.

I am willing to continue to work to decrease my consumption of gluten, and, it is possible, that, over time, especially if I am able to observe some benefits related to managing my MS, that I'd be willing to make more of a dietary commitment. That is why I titled this thread "Transitioning in to GF Diet", because I like to think that I am heading in that direction.

Does anyone here have knowledge or experience regarding a less than 100% committment to GF when supplemented with digestive enzymes?

~ Faith

Leader:
Doing It With Multiple Sclerosis;
Plateau Busters!!!!;


2005-2009: 185 lbs. Some minor yo-yo-ing.
2010/Sept: 180 lbs; Waist 46"
2011/Jan 1: 160 lbs; May 22: 133 lbs for DD's wedding
2012/Jan 1: 119.8 lbs; May 1 117.2 lbs
2013/Jan 1 - 121.2 lbs
Monthly wt is in my SP intro

Reached 118 lbs for about 6 months; working hard to maintain weight, w peri-menopuase now;
Goal range: 107-118 lbs/W31.5. Under 123 OK


 current weight: 121.6 
 
180
162.5
145
127.5
110
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