Gluten and Tumors???

[MZB475]

All,
A VERY interesting development in my life....
Since I've rec'd my "gift" (AN), I have not only lost my hearing ,but have now begun to loose some of my eye sight.
I am being treated by a eye dr. in MA who, before even giving me an eye exam, asked me a battery of questions.  He had no idea that I had an AN.  He wrote me a script for a stool test and low and behold, I am Extremely allergic to GLUTEN. The test report comes back..."for optimal health...extreme Gluten Free diet...symptoms known to be associated with gluten...damage to tissues...nerves, brain, headaches, (the list is extreme).
My question is...has anyone else gone Gluten free and seen any difference? 
I swear...the tinnitus has "quieted" and some of my hearing has come back...and it's only been 1 month....
Maybe a holistic "treatment" for some?
All the best
MZB475

[LisaM]

Hey MZB475,

Saw your post on another thread...  I went off wheat and dairy, along with pretty much all processed sugar (still eat fruit and drink red wine but stick to low sugar intake) .  Very interesting what you have mentioned, gluten causing all kinds of health problems.  I've been on this gluten free diet since mid May. My MRI in July revealed a stable, no growth tumor.  I have my next MRI in January. Shrink tumor shrink!

When I get stressed and/or tired my tinnitus kicks up.  My mom passed away in September VERY STRESSFUL.  And I had to make plane trips coast to coast, twice.  Added pressure from flying, no sleep, jet lag, grief, etc.  My hearing started to go and I was really nervous.  I took turmeric and another supplement called Holy Basil which helps reduce cortisol levels.  Cortisol is the stress hormone.  And I got sleep.  My hearing is back to normal and the tinnitus is very, very faint.

What about your vision problems?

C'est moi,
LisaM

[MZB475]

Hi Lisa M:)
I'm going to try the turmeric and Holy Basil....thanks for the tips (I have a backyard full of basil for pesto...maybe I can make my own Holy Basil!!).  The nerve damage is extensive in the right eye (same side as the AN). Being treated with an eye drop treatment.  There's never a dull moment! I do travel on planes and trains for work...so I know the travel stress makes it a double whammy! Thanks for your reply:) MzB

[Mei Mei]

Oh Laura,   I didn't know your eye was involved, too.   My eye started twitching a lot the weekend before my Tuesday surgery back in Jan 2010.   The surgeon called me on the way to the hospital to check and and I said something new had started and my AN side eye was twitching.   He said that means it's time....
The next morning was the surgery.   I remember Dr. Kondziolka said at the Symposium for those of you on the W&W ... what are you waiting for?

On the Gluten problem...my daughter Ani was having headaches the entire 5 years of her Johns Hopkins program.   She went to a homeopathic allergist who took clippings of her hair and blood samples.   She went back and he took her off all Gluten.   Told her to change the detergent that he could smell on her and her shampoo.   Now she uses 7th Generation and Tom's shampoo.   No Gluten and her 3 year old has been off of Gluten since he was 12 months.  She sends in special snacks for day care and he is fine with his special fruit and yogurt and carrot sticks.    She feels fine now and is having baby #3.   No headaches, not tired.

What's part of this picture is the Ehlers Danlos Syndrome and you can google it.   I finally went to the geneticist in Baltimore that specializes in diagnosing this.   Gluten problems, headaches and disc problems are pieces of this puzzle.   She wrote a long report on me and says she wants to see the rest of the family to make sure which kind of Ehlers Danlos we have.    I'm glad I don't have the kind where your heart vessels pop and you die.    I am however getting an enlarged aorta.   I have stopped eating gluten and am feeling better.   There are so many choices now.   The best restaurants serve Gluten Free rolls and we went to an Italian restaurant yesterday that has a big sign outside:  Gluten free pasta!!!

If that is what your tests say, then don't argue and go for it.   You can do it.   It's so much easier now than before.   They are making really cool rice cakes now at Whole Foods that pop out of a machine right there in the store.

Hugs,
Mei Mei

[LisaM]

Holy Basil is different from basil.  You'll need to buy it from a health food store or online.  I think it's from India and has all kinds of other things it's supposed to help too. 

Also, turmeric (aka curcumin) works much better if you take with some kind of fat and heat it.  I often put mine in food I am eating.  Here's a link that explains how to take curcumin: http://margaret.healthblogs.org/life-with-myeloma/discovery-of-curcumin/bioavailability-of-curcumin/

How are your vision problems manifesting?  What size is the AN in your head?  How were you tested for the wheat allergy?  Was it a test for celiac?  I'm having a blood test for celiac soon.  It will be interesting to see what the test reveals,

Be well!

[schmidtkat]

Hello
"Gluten" in your subject line immediately caught my attention. My husband's side of the family has a long history of intolerance to gluten and it has passed on to several in the current generation. My mother-in-law struggled for quite some time to get diagnosed. By the time she did she had countless tumors and had to have 2/3 of her stomach removed. The good news on this...it's very managable by watching your diet. My 13 year old daughter has been diagnosed with this. It's actually called celiac disease for the type my family has. If you want more information I would be glad to share resources my family has used. An EXCELLENT doctor for this condition is at Mayo in Rochester. I can also get you his information if you have interest.
I know this can sound scary, but if you watch your diet you really can avoid so many other complications from this.
Kathy

[Mei Mei]

I'm sorry Kathy that your mother suffered for so long and it's wonderful that we have this Forum to share our information.   I can testify that managing your diet makes a world of difference.   We went up to Montreal last week and my daughter had just one bowl of ravioli.   She hadn't had wheat in over three years and got a headache.
As the saying goes...you are what you eat.
Thank goodness we have this information.
Mei Mei

[Tumbleweed]

Also, turmeric (aka curcumin) works much better if you take with some kind of fat and heat it.  I often put mine in food I am eating.  Here's a link that explains how to take curcumin: http://margaret.healthblogs.org/life-with-myeloma/discovery-of-curcumin/bioavailability-of-curcumin/

Thanks for the link, Lisa! Fascinating info. I almost always took my curcumin right before a meal, which often was hot and had significant fat content (e.g., from fish, nuts or coconut oil). So I'm thinking I probably assimilated it pretty well.

I think curcumin, along with other natural anti-inflammatory supplements such as bromelain, helped ease my dizziness noticeably.

MZB475, there is no doubt in my mind that maintaining a healthy diet and taking certain supplements can reduce some AN-related symptoms, dizziness and tinnitus in particular.

Best wishes to all,
TW

[MZB475]

Hey all...thanks for all the notes and replies. Between travel and the storm that wiped out the electricity, it's been crazy here! I've learned so much over the last month...and it seems like everyone you talk to has a gluten allergy as well! So many restaurants have gluten free menu's...even PF Changs!...I'm adjusting....finding myself eating more (seems like I'm always hungry!).  Potatoe and/or grape based vodka and hershey milk chocolate are also safe "treats" !  Be Well my AN friends!

[LisaM]

BTW... if you want to get really serious about taking curcumin and reservatrol check out the 2 links below:

http://www.pdazzler.com/archives/1005

http://www.youtube.com/watch?v=SeU--wadrMY

This is from a site for cancer patients.  It seems that both reservatrol and curcumin have a hard time getting absorbed into the system and binding the curcumin/reservatrol to lecithin apparently makes a hug difference.

[Rivergirl]

Very interesting stuff.........worth looking into........anything to help my brain.  Does it also help weight loss?

[arkansasfarmgirl]

A naturapath recently told me that very few people handle wheat gluten very well, just most are mild enough that they don't realize it.  It does make me wonder, with my family and personal history of IBS.

[Mickey]

Hi everyone! I`m one of those people who handle gluten (I think)... Alot of my diet over the years has consited of what I think was pretty healthy grains and pastas (mediteranian, Italian). In our situation I think the best thing we can do for ourselves is find out what is good for each of us individually and get on the right track. If gluten is bothering you or anything else which you may be allergic to find it and remedy it. So much good stuff out there to incorporate in our diets naturally which I know has made a big difference in my life. Don`t forget the exercise program! Best wishes, Mickey

[Mei Mei]

One Naturopath told us to stick to our ancestral diet.    My daughter stopped the Gluten and is all better.    I myself am half Asian and half Armenian which is Caucasian.     I'd like to investigate this further.    Asians in the south mostly eat rice and in the North...noodles.    Armenians eat bread but also rice and wheat pilaf.    I just don't know.
Mei Mei

[LisaM]

Just posted this on the China Study thread as well...

Hey Laura,

Just had an MRI last Wednesday.  The AN is about 5mm smaller than it was last July.  Stopped eating wheat and dairy last May.  I've been doing quite a few other things but I think that the change in diet has been a big help.  Thought you'd like to know.  I have not been tested for any sort of wheat sensitivity but its on my list of things to do.  Just need to find a Dr to order it so I can get insurance to pay.  I'm hoping the AN will keep getting smaller and smaller... and disappear!  I'll take the 5mm reduction for now...it feels miraculous from where I was last May!