I couldn't find that article, but I do have it here on LN. I'll look later.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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cottonbrain
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posted
hey tutu, thanks for the great link to the veterinarian. i'm reading it right now and found this:
'Wheat gluten is 25% glutamic acid by weight. Casein from cow�s milk is 20% glutamic acid by composition. Soy protein has much more glutamate than either of these two. Corn contains the least amount of these two non-essential amino acids but it can do harm to the intestinal villi in susceptible individuals.'
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Keebler
Honored Contributor (25K+ posts)
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posted
- It's not about glutamate or glutamic acid - that's a totally different thing - but anyone with lyme should also be very cautious as to not consume too much.
Many excellent links here about the damage that gluten and diary can cause to many folks:
See post: Caution: Aspartate; Glutamine; and Phenylalanine -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- I do not know why those with MTHFR issues are instruted to avoid gluten and dairy but - they really are not good for so many folks and, especially (I think), for those with any health complications.
As for "not noticing improvement" or "not feeling better" or any other way that some may describe their frustration with "restrictions" - I think it can be very tough to notice the kind of improvment we think we should see when one has any tick-borne infection.
I know that being gluten-free and dairy-free HELPS me but I sure do not feel great as there are just so many other variables with all the chronic stealth infections, etc.
But I do know that I might not even still be alive were I to have not gone gluten-free, it IS that much of a difference for my body.
As for the torture many feel from being gluten-free, that need not be. There are so many fabulous foods and flavors. I don't even miss it. If I think of something "normal" that I'd like, I just get the flavors in other ways and usually it's much better.
For those who don't notice any difference, it can take over 6 months. For celiacs who get even a trace of gluten, there can be brain effects for up to six months after even a trace is consumed. Really.
And, many THINK they are GF but are not. It's sneaks in so many place. Even many lip balms -- or dishes in some restaurants that say it's GF may not be if their kitchen is not certified GF space.
No one here wants to may life more difficult for anyone dealing with lyme, et. al. still, I know the importance of this so I do keep stressing it -- and also hope that with all the other fabulous foods available, you won't even notice over time.
Going GF has been the best thing that could have happened to my diet. I have learned so much about what real food is and I take delight in that wealth of texture, variety and flavor. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Neither of the LLMD's I have seen told me to give up dairy unless I was having issues with it. These are two prominent doctors on the east coast.
Both my husband and I have MTHFR C677T. We avoid gluten but we were doing that way before we knew we had Lyme because of gmo's.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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cottonbrain
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posted
this is all good information. I have been searching all day for a coconut milk or milk alternative that has neither guar gum nor carrageenan.
Keebler--or anybody-- is there somewhere you can point me to good gluten-free recipes? The thints I am not supposed to or cannot eat due to migraines, candida, MTHFR mutation include:
Please help with suggestions one and all I'm getting hungry.
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beaches
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posted
I have heard that cheese and yogurt are OK (unless of course you can't tolerate them), as opposed to slugging down milk and eating ice cream.
Posts: 1885 | From here | Registered: Jul 2012
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cottonbrain
Frequent Contributor (1K+ posts)
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posted
I just found a way to make your own coconut milk without carrageenan or guar gum:
8 oz. shredded unsulfured coconut shreds 4 cups boiling water
combine and let sit for one minute. then blend thouroughly. Finally, pour through cheese cloth. I will try this tonight.
I read that cheese should not be consumed, except for goat cheese, for the MTHFR mutation.
Posts: 1173 | From USA | Registered: Nov 2007
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"Some companies, like Tofu Shop Specialty Foods and Straus Family Creamery, unlike many of their competitors, have always offered foods without carrageenan.
In February 2013, the organic yogurt maker Stonyfield Farm announced it would remove carrageenan from the few products that contain it (Squeezers�, ultrapasteurized whipping cream and caramel Oikos yogurt).
In doing so, it joined companies Eden Foods, Kalona Supernatural, Clover Stornetta and Natural By Nature, which have committed to removing carrageenan."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Razzle
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posted
stephfino,
MTHFR makes detoxing difficult, because it prevents the formation of glutathione. Glutathione is used by the body to aid elimination of toxins.
B12 & Folic Acid levels get really high in the blood from this mutation because the body is unable to convert the Folic Acid for use with the B12 for methylation. Methylation creates glutathione.
So to compensate, one needs to supplement with methylcobolamin (Methyl-B12) and methylfolate (5-Methyltetrahydrofolate), along with the Active form of Vitamin B6 (P5P, or pyridoxal 5 phosphate).
Yes, the MTHFR mutation is common. And this mutation can increase one's risk of heart disease (because of elevated homocysteine and decreased antioxidants), blood clots, and many other issues. Hence why the nutritional treatment is important.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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posted
I am homozygous for the C667 mutation. I thought that gluten and dairy increase inflammation, therefore should be avoided.
With the MTHFR mutation, we have difficulty metabolizing toxins. So the increased inflammation from the gluten and dairy compound our problems.
Have I got that right??
By the way, I feel much better since going gluten-free, and treating the mutation with methylfolate.
Posts: 873 | From WA | Registered: Dec 2005
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Razzle
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posted
hopeful4,
Yes, you are correct.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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posted
Thanks, Razzle. Wow, that was a fast answer!
Posts: 873 | From WA | Registered: Dec 2005
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cottonbrain
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posted
here's an update to say I just made the coconut milk. wow!! this tastes waaay better than any coconut milk I have bought at the store.
I had to blend it a lot -- probly a food processor would work better. I used 8 ounces of coconut and it made about 5 cups of milk -- lots of fiber left over -- could probably use it in something?
Posts: 1173 | From USA | Registered: Nov 2007
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posted
Cottonbrain, I had an allergy test and this is what showed up I am allergic to: Bananas #56 Casein (Milk, butter) Wheat Egg whites Chocolate Beef Tomato, white pootato (night shade -eggplant Corn Apple Orange If you are allergic to something it can cause you pain.
-------------------- If you could get up the courage to begin, you have the courage to succeed. David Visott ~ Posts: 56 | From VT | Registered: Jun 2012
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
LT that recipe sounds delish. I will have to try it. I LOVE coconut and lime. Bananas, not so much but I'll try it out.
Maryinvt2, my testing indicated I was allergic to casein, wheat, eggs, yeast, corn.
We are GF as it is and that's hard enough to stick with. We are also dairy-free with the exception of some cheeses and greek yogurt (and my half and half for my coffee which I am NOT willing to give up at this point in my life).
I tried to do the entire egg-free, dairy-free, corn-free, yeast-free diet for me and the family. It lasted a few days. This type of diet is just not realistic for a family.
At this point, I am focusing on feeding my family organic produce to the extent possible, along with organic chicken and grass-fed beef and good seafood to the extent-possible too.
For starches my favorites are sweet potatoes and risotto. But I also turn to the good old standards of baked potatoes and rice.
It's a very expensive diet and it involves quite a lot of planning and prepping and cooking.
I feel like I am a sous-chef in a restaurant, but with no pay Sometimes I feel like a slave to the stove, but I know I'm doing right by them and I do like to cook and grill, so that's a major plus (at least for them!).
Ironically, they've all become quite the foodies and now critique what I put in front of them. Yeah, and they used to say I was fussy!
"Why isn't there any avocado in the salad?"
"Is there a reason why we've had grilled sausage so many times? Do you think this is really a healthy choice for us?"
"This orange juice tastes like chemicals have been added. Can you please just buy the Tropicana?"
"Please buy the pineapple you cut up yourself because the ones that are already peeled in the plastic containers just don't taste right"
"There isn't enough mangosteen vinegar in the salad"
"When are you going to make string beans with garlic again?"
So my family is now used to my cooking from scratch and have grown to appreciate good and fresh ingredients. You could say I've created foodie monsters. But that's a good thing (for them, not necessarily for me as they're now very high maintenance food people).
And their palates have developed so much and are so far away from the diet of chicken nuggets, fries, mac n cheese that most kids still consume.
But don't get me wrong, I still have GF chicken nuggets in the freezer and Amy's GF mac and cheese in the pantry for special treats, mainly for me. Hey, I NEED some comfort food.
Just goes to show you that what you feed your kids matters a whole lot. If you feed them fast food that's what they'll crave and love.
If you feed them real food instead, they'll have a taste for it throughout their lives and know that an occasional order of fries from a fast food joint is just an occasional treat, and not a staple in their diets.
As usual, I have veered off-topic, so Cottonbrain, getting back to your original question...
I don't really know if ppl with MTHFR should avoid gluten and dairy. I think it might be a good idea for those with LD to try going GF and dairy-free for a few months to see if it makes a difference.
From what I've read, folks with the 677 mutation have to be careful about their sulphur intake, ie, animal proteins, sulpha drugs, supps high in sulphur.
I've never heard of an anti-migraine diet? Can you elaborate on that?
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posted
Just goes to show you that what you feed your kids matters a whole lot. If you feed them fast food that's what they'll crave and love.
If you feed them real food instead, they'll have a taste for it throughout their lives and know that an occasional order of fries from a fast food joint is just an occasional treat, and not a staple in their diets.
-
True!! I've been eating organic for about 10 months now and anything that is not real food totally grosses me out now! I think I've said or thought everything your kids are saying!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
I think it might be a good idea for those with LD to try going GF and dairy-free for a few months to see if it makes a difference.
- Absolutely!!
I know some things you have to avoid if you have migraines is chocolate, bananas, and yogurt. I know there's more, but I've forgotten since I no longer have migraines!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Razzle
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posted
MTHFR doesn't have to watch sulfur intake. It is those with SUOX or CBS (especially CBS 699T) that have to watch sulfur intake.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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dbpei
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posted
I am positive for 1 copy of the C677T mutation and one copy of the A1298C mutation. I wish I understood this all better. I was instructed to take the methylated versions of folic acid and B12.
I used to take MSM for years following a back injury and it made me feel better. So I don't know that the sulfur intake was a problem for me (at least I hope I wasn't doing damage when I took this!).
I would love to take it again, except I tested high for mercury and arsenic and I still have mercury fillings in my mouth so don't want to cause more harm than good by taking this.
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posted
I don't have any issues with sulfur drugs even though the data says I should have.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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beaches
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posted
dbpei, we share the same genetic makeup I tried the MSM before I knew this. It caused constant urination for me, but other than that I had no ill effects from it.
But once I found out about the CBS677 mutation, I got scared and d/ced it. So I didn't stick with it long enough to see whether or not it made a difference.
I have been on Bactrim in the past and recently went back on it. Never had an issue with it and it's a sulpha drug. Also always consumed lots of onions and garlic, two things very high in sulphur.
So I wonder. And like you I wish I just understood this all better. Another day, another learning curve.
Razzle We don't know if any of us have SUOX. Not concerned about me at all, just one of the kiddos.
LT to you too. Thanks for the info on what to avoid w/migraines. I don't get them, but that info will help someone here.
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Razzle
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posted
Beaches,
I was able to eat onions and garlic a long time ago, seemingly without problems. So my tolerance for sulfur/sulfite has decreased with time. I don't know if this is due to depletion of molybdenum (& other minerals needed for sulfite processing), or if it is due to other things (Lyme/co's, etc.).
Also, if one is heterozygous for the mutation instead of homozygous, then the issue is not nearly as severe. I'm homozygous for CBS, so it may be more significant an issue for me.
And I also think that sometimes mutations in these genes may not be "activated" unless something switches them "on" (infection, toxic exposure, etc.).
And there may be confounding factors (genetic, environmental, etc.) that make one person's experience different than another, despite similar methylation SNP variants.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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beaches
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posted
Hi Razzle, I do think you're on to something when you say that that these genes may not be activated til something switches them on.
Sorry to hear you are homozygous for the CBS677 mutation. We are all hetero for that, thank goodness, but we do not know our collective SUOX status.
I had stopped cooking with onions/garlic for awhile after learning 2 of us were hetero CBS677.
But then I said, "what the heck??" I always cooked with onions/garlic for many years pre-Lyme. These are healthy ingredients overall, so I went back to cooking with them.
Maybe I'd think twice if any of us were homogenous for CBS677 or if I had a way of knowing our status re: SUOX.
Talk about speaking/understanding another language!!
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cottonbrain
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posted
Thank you to everyone for all the suggestions.
tutu, I will definitely try the banana-coconut-lyme drink as soon as I am done with the candida diet. I'm sticking to the diet well but the candida is hanging on. Maybe need to go off antibiotics?
Things to avoid on the migraine diet: yogurt soy sugar cheese all cultured foods mushrooms caffeine glutamate msg yeast, yeast extract (many soup stocks) guar gum carrageenan natural flavors, colors pesticides vinegar, except apple cider
lots of other stuff I can't recall off hand. If you like eating it, it's probably bad for you (kidding -- sort of)Some people can tolerate some of these foods but if you get migraines, pay attention--sometimes it is the cumulative effect of combining several foods rather than one specific food that may trigger a migraine. Reducing or eliminating sugar can make a huge difference.
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I'm getting hungry.
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Sometimes I feel like a slave to the stove, but I know I'm doing right by them and I do like to cook and grill, so that's a major plus (at least for them!). ![[hi]](graemlins/hi.gif)
We don't know if any of us have SUOX. Not concerned about me at all, just one of the kiddos. 
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