MS and now Celiac and Casein...ugh?

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Katie7
Regular Member


Date Joined Apr 2008
Total Posts : 114
   Posted 1/18/2009 8:57 AM (GMT -6)   
Hi friends...well I made it through all the Holidays and am starting this new year out with more health problems.

I have always been lactose intolerant, but now it seems no matter what I eat..I bloat terribly and my abdomin is very painful. I am losing some weight now because I can keep food in me. They don't think this is IBS.

Long story short, I also have this rash that I have had in the past and was told it was caused by gluten allergy( recently told that)it is documented on my charts as of 10 years ago. Last Friday I have blood test; IgA EMA;IgA and IgA AGA, and some other one and will get results back in a week or so. They also are going to do a CT Scan of my Abd and pelvic area tomorrow due to the painful exam I had Friday, weight loss and severe swelling. They suspect I have Celiac and maybe even Casein allergy OR just a Gluten Intolerance.

I am wondering if anyone else with MS in here is a Celiac.??? I thought since they are both autoimmune perhaps I am not the only one? I need help with suggestion on what to eat...seems like I have very few choices and dont know where to start IF IN FACT this is whats going on with me.

Also, I found this interesting but CELIACS have lesions that show up on the MRI that are often mistaken for MS, and Visa-Versa who'da thunk???? Theres different Medical opinions out there that are suggesting the 2 are related.

I am looking forward to hearing everyones thoughts on this. I am just beginning to accept the whole MS thing then this gets thrown at me. Hugs~Katie
What you put into the lives of others comes back into your own ; The will of God will never take you where the Grace of God will not protecxt you!
                              Hugs~Katie
                  Diagnosed ~ August 2008


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 1/18/2009 9:30 AM (GMT -6)   

Hey Katie,

I am so glad to hear from you.  I was wondering where you had gone!!  I am so sorry to hear about your continuing problems.  I have not heard of anyone having both MS and Celiac's but it does not surprise me.  I try to avoid all gluten because it is "inflammatory".  Some extremists say to avoid dairy and gluten in your diet with MS.  I have done the no dairy thing for over a year and now I am trying to do the no gluten.  So far, I have only managed low gluten. 

Good luck with your CT scan and please let us know what they find!!!  Email me if you want any good suggestions on the no gluten diet.  There is tons on the internet about it.  It is not easy at first but they say it gets easier.


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


theshultzgang
Regular Member


Date Joined Jan 2009
Total Posts : 38
   Posted 1/19/2009 9:18 PM (GMT -6)   
Hi there...I'm a newbie, but I wanted to chime in about gluten / dairy. I've had MS since 11/2001 -- crazy ride and went the natural way after all else failed. Anyhow, I was tested for celiac which was negative, but I believe I am sensitive to wheat. I think that wheat adds to inflammation with MS and have just learned to live without some items. I also stared following the "Eat Right for your Blood Type Diet" which lists wheat and dairy as harmful for my blood type, O.

Like the last post, there are tons of sources online for wheat / dairy free items. At first it is a pain until you find the substitutes, but Trader Joe's (if you have one near you?!?) has alternatives for everything and even has a list for us gluten free peeps. Raley's, Bel Air or Nob Hill has many items in the natural food department too. Our house is just wheat / dairy free now and my hubby and kiddo have no choice since I cook and shop. If you need help with any items or menu thoughts, I'm here to help.

Take care! Andrea

Katie7
Regular Member


Date Joined Apr 2008
Total Posts : 114
   Posted 1/20/2009 9:06 AM (GMT -6)   
Hi Andrea,

Thanks for the tips. I know I am allergic to milk, always have been so I do follow a Lactose Free/milk free diet. I know I am allergic to Gluten, but have not followed that o well. I won't get the blood work back till next week, I guess it takes awhile.
Meanwhile I decided to just eat as though I am Celiac. However, right now I have either a very bad stomach flu or a reaction to wheat going on now. I have lost over 10 lbs in just a few day, bad diarrhea, some vomitting and am badly bloated.

I just got a call from the CT scan done yesterday on me and it was normal. Now they want to do a colonoscopy. I also just learned about all the recalls on Peanut Butter ( which I love and eat alot). Cant help but wonder if that is my problem. Food poisoning from it. If so, it should clear up soon.

Thanks for all your tips, I will check into it. Hugs~Kate
What you put into the lives of others comes back into your own ; The will of God will never take you where the Grace of God will not protecxt you!
                              Hugs~Katie
                  Diagnosed ~ August 2008


theshultzgang
Regular Member


Date Joined Jan 2009
Total Posts : 38
   Posted 1/20/2009 10:47 AM (GMT -6)   
Hi again Katie,

The darn peanut butter!! I love the stuff too...it's bad for us though. I've switched to almond butter, but I do miss the good stuff. I thought of one more thing you may want to investigate. It is common for people with MS to have a "leaky gut". If you just search "MS and leaky gut" lots of information comes up which may just hit home with you. It took me a year to heal my gut, but it was really worth it. Good luck and I hope you feel better soon!

Sending good thoughts,
Andrea
Envision a health and your body will follow!
Diagnosed 11/2001
Andrea :)


Katie7
Regular Member


Date Joined Apr 2008
Total Posts : 114
   Posted 1/20/2009 4:22 PM (GMT -6)   
Hi again Andrea,

I just bought some Almond milk today, so I thought that was funny you brought up the Almond Butter. Dont know if I will like it yet or not but need to try.

I am not going for the colonoscopy. I told them I want to see if this is just a flu bug or gluten related first. I should have the Celiac test back by Friday I think.

I am still having diarrrhea ( I know I am a horrible speller, so sorry) but only if I eat. otherwise not. I am sipping peppermint tea which helps. I am not sick to my stomach, it just hurts, no nausea. Still very bloated. I am going to stay on fluids right now till this settles down and search that 'LEAKY GUT' thing you mentioned. I never heard of that.

Thanks so much for the food advise, Lord knows I need as much as I can get. I am not dehydrated...yet. I felt like I was this morning and managed to keep the tea down and some white hot white rice cereal w/o ( no milk on it). I was told they will admit me if I keep vomitting, but that stopped since Im not eating now? This stinks. I stay in touch, thank you again!Kate
What you put into the lives of others comes back into your own ; The will of God will never take you where the Grace of God will not protecxt you!
                              Hugs~Katie
                  Diagnosed ~ August 2008


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 1/20/2009 4:56 PM (GMT -6)   
Hey Katie,

I'm sorry you're still feeling so badly, yikes! If you're worried about dehydration, you might try drinking pedialyte (found in the infant/child section of grocery stores). I don't know if it is a safe food with all your sensitivities right now, but thought I'd throw out the suggestion. It is an electrolyte drink designed to help with dehydration in children, but I've used it for my low grade summer "fevers" I get when overheated, and it does seem to help. There are often generic equivalents out there as well, but here's some info on it:
 
 
Hang in there, and please do keep us updated on how you're doing.

Sunny

Post Edited (Sunnycitrus) : 1/20/2009 3:59:15 PM (GMT-7)


bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 1/20/2009 4:59 PM (GMT -6)   
Katie,
God Bless you my friend! It was so nice chatting with you on the chat forum last night. Hope we can do it again soon. Take care my friend.
 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.


Katie7
Regular Member


Date Joined Apr 2008
Total Posts : 114
   Posted 1/20/2009 5:58 PM (GMT -6)   
Hi Bo and Sunny,

Thank you both for your kind words. I had not thought of the pedilite, good idea Sunny! And Bo..it was so nice chatting last evening w/ you 2. I love the people in this forum, they are all so supportive and helpful.


nono I allowed myself just a weeeee bit of baked chicken tonight, now tummy is having real bad pain, so need to keep this short. I did want to mention though that I did a tiny bit of research on the 'leaky gut' thing and from what I have read...it sounds a whole lot like me AND......is often associated with guess what....MS and Celiac disease. Lovely huh?

Well, love to you both and I will keep ya' all updated on this tummy thing. ~Kate smilewinkgrin
What you put into the lives of others comes back into your own ; The will of God will never take you where the Grace of God will not protecxt you!
                              Hugs~Katie
                  Diagnosed ~ August 2008


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 1/25/2009 8:50 PM (GMT -6)   

Hey stranger (katie),

Come back and let us know how you are?  Are you feeling any better/worse?  Have you gotten any results on your bloodwork on the gluten allergy?  I have been thinking of you.

 


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Katie7
Regular Member


Date Joined Apr 2008
Total Posts : 114
   Posted 1/26/2009 8:35 AM (GMT -6)   
Hi Gretchen, sorry I didnt get back very soon. It has been so busy around here.

The good news I am feeling SUPER! I started eating Glutan Free and Casein Free and the change started overnight! I did test positive for being Celiac, which all started years ago when I had a skin biopsy for a very bad rash I had and still get now and then called dermititis herpatiformis ( DH). That rash alone is considered positive for Celiac. Unfortunatly, I was never told that.

In Celiac damage occurs to the lining of the small intestine from injesting Glutan. People who continue to eat Glutan who have Celiac risk serious complications down the road with their small intestine....even cancer can develop. I also found out that people w/ Celiac can have lesions on their Brain MRI that look similar to those of people w/ MS. This is something I need to investigate more but intend to ask my neuro Dr. about at my next appt. in June. I am also due to have another MRI then, ugh!

Casein is a milk protein that I am allergic to found in all dairy/milk products. I always thought I was just 'Lactose Intolerant but their is a difference.

With an allergy-our body has an adverse reaction as a result of the bodys immune system.

With an Intolerance- Our body cannot deal w/ the food properly, but it has NOTHING to do w/ immune system.

In Celiac the bodys immune systems response to ingestion of glutan causes damage to the Intestine.

Glutan, by the way, is a protein found in wheat,barley,rye,oats and any other foods derived from these grains. The only treatment for people with Celiac or people with Glutan Intolerance is a LIFETIME long elimination of glutan from the diet. You can't even share the same toaster to toast your brown rice bread in with someone whos eating wheat toast. No contact at all. The slightest bit will set off the symptoms and can begin damage to the small intestine.

Heres the list of symptoms for Celiac: ( you don't have to have them all to have Celiac Disease)diarrhea,gas,bloating,vomiting,constipation or constipation alternating w/diarrhea,nausea,skin rash,malabsorption, weightloss or gain,anemia,chronic fatigue,weakness,muscle cramps,neurological complaints such as seizures,headaches,concentration and memory problems....and more. Can you see the similarities of this disease and MS? There are specific antibody blood tests to and biopsy of small intestine or being dx. w/ DH to get diagnosed. HOWEVER....IF YOU ARE EATING A GLUTAN FREE DIET WHEN GOING THROUGH THE TESTING, THE BLOOD WORK WILL COME BACK NORMAL. Sorry, did not mean to use large caps there.

The hardest thing for me has been figuring out what I can eat, but I have found wonderful recipes, a support group, and a world of info. AND......My weight is literally 'dripping off', of me...mostly where I carried it the worse ( around the middle). I even feel like i am thinking clearer. Anyway, I have to run, but if ANYONE ELSE suffers from what they thought was IBS, they should get this checked out. I also found out theres a high percentage of folks w/ MS and Celiac. Hugs~Katie
What you put into the lives of others comes back into your own ; The will of God will never take you where the Grace of God will not protecxt you!
                              Hugs~Katie
                  Diagnosed ~ August 2008


theshultzgang
Regular Member


Date Joined Jan 2009
Total Posts : 38
   Posted 1/26/2009 11:25 AM (GMT -6)   
Hi Katie,

Wow!! It sounds like you have had a super information week. I'm glad you found so much information out. Will your intestines heal themselves once you stop eating gluten? It makes sense that weight is dropping off since your body can actually use the food you are eating instead of leach it out into your bloodstream. Crazy stuff.

Anyhow, I was thinking of you too, so glad to hear so much good news.

Take care!
Envision health and your body will follow!
Diagnosed with RR MS 11/2001
Healing more and more every day
Andrea :)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 1/26/2009 9:50 PM (GMT -6)   

Hey Katie,

I am glad you are feeling better.  You are doing great on adapting.  I hope this gets easy for you to manage very soon.  I too have noticed that my tummy is not so bloated when I avoid gluten.  I have done no dairy for a while now. 

Thanks for posting.  This is a wonderful, uplifting post!!

Andrea,

I read up about "leaky gut" and the MS connection.  It really makes a great arguement for healthy eating in order to manage MS better. 


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 1/27/2009 12:49 PM (GMT -6)   
Katie,
Glad you are feeling better also! I just wanted to tell everyone, like Katie, Gretchen, Andrea, Rhonda (wherever she is) and Sunny hello and that I hope everyone of you are having a great Tuesday! Love you all.
Take care.
 
 
 
 
                                        Chuck the old man :>)
                                   AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2006
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.


theshultzgang
Regular Member


Date Joined Jan 2009
Total Posts : 38
   Posted 1/27/2009 6:25 PM (GMT -6)   
Gosh...you all are so nice! I am thanking the Lord for finding such good people.

Gretchen,

I'm glad you checked into the "leaky gut" stuff. I also went wheat / dairy free and organic. I can absolutely feel the difference if I go off track. For me, I think part of the reason I got MS was because I didn't take care of myself or eat well. But I really feel empowered with good food choice now. It's like I'm giving my body the fuel it needs to fight well.

I'm off to get my kiddo. Have a good night :)
Stay at home Mom
wheat / dairy free & organic since 2007 -- amazing difference!
Diagnosed with RR MS 11/2001
Copaxone and starting LDN
Healing more and more every day
Andrea :)


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 1/28/2009 2:25 PM (GMT -6)   
Katie, I'm so glad you're feeling better!!!

Katie7
Regular Member


Date Joined Apr 2008
Total Posts : 114
   Posted 1/31/2009 5:18 PM (GMT -6)   
Hi all my dear friends, I am still feeling terrific and just wanted to 'pop in' and say how TERRIFIC all of you are . Isn't it great we can come to such a nice forum for our up and downs days with MS as well as for those who are in MS LIMBO LAND??


Hugs to all my ole friends, Gretchen, Rhonda, Sunny,Bohuck2,theschultzgang,...I admire your strength and encouragement....and to all of you 'newbies'...hugs to you all to. This last year was a tuff one for me, but everyone in here new and oldtimers, have helped me to accept and move on and 'LIVE' once again...Gretchens quote sums it up the best..."I have no lesions on my soul so I will live with no limits". I am so proud of her, she made that one up herself!!!!!AND ....I think thats speaks for all of us! Blessings friends!

PS......iI am very fond of reading and wondered if anyone has any new good read suggestions? My favorite Author is Beverly Lewis and I have read all of her books. I just finished reading a book called 'The Shack"...awesome read by the way and highly recommended by me. But I need a new author to follow...so any ideas???????????? scool
What you put into the lives of others comes back into your own ; The will of God will never take you where the Grace of God will not protecxt you!
                              Hugs~Katie
                  Diagnosed ~ August 2008


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 1/31/2009 7:56 PM (GMT -6)   
Thanks for the great update! :-)

I don't read all that much anymore, but one of my favs is The Good Good Pig, by Sy Montgomery.

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 1/31/2009 8:41 PM (GMT -6)   
KATIE!!!!

YAY!!! I"m so glad to see u'r still feeling well!! I have to say i'm not much of a reader....i honestly do get disinterested much before i get to the end of the rinse/repeat instructions on the shampoo bottle. I can tell u that many good movies are out there tho!!! :)) I actually heard that there was a book written after one very good movie, u may have heard of it....East of Eden?? I'm sure the book is not as good as the movie tho. U know how that is. ;) Take such good care my friend and don't be such a stranger!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 1/31/2009 11:46 PM (GMT -6)   

Hey Katie,

Sunny sent me the good good pig.......it is a great read.  It is about a self described introvert and social outcast (Sy).  Sy rescues a runt pig and keeps him as a pet.  This pet brings people into Sy's life and essentially cures her outcastedness.  It is so good. 

I am reading (slowly!!!!) John Steinbeck's East of Eden.  I love it.  It is really wonderful.  I have been boring poor Rhonda with the details, hence her movie reference!  Hahaha.  I also LOVE George Elliott's Silas Marner.  I have The Shack but I have not read it yet.  My recent faves are The Kite Runner, Snow Flower and the Secret Fan and Water for Elephants. 


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Katie7
Regular Member


Date Joined Apr 2008
Total Posts : 114
   Posted 2/1/2009 9:23 AM (GMT -6)   
Thanks guys for the book suggestions. I am gonna go look 4 that 'the good pig' book later today.
Rhonda, I love movies to. I just have not been out to see any new ones yet, but anxious to see 'DOUBT' with Meryl Streep. I really loved her in MAMMA MIA....She is one of my favorite actresses:)

Happy Feb. 1st..it is sunny here and a heated 45 degrees outside. We have tons of snow right now and don't need anymore but I hear we are getting another clipper this coming week and the deep freeze temps will be back...ugh! Hugs all; hows the weather where your all at? Hugs~Kate
What you put into the lives of others comes back into your own ; The will of God will never take you where the Grace of God will not protecxt you!
                              Hugs~Katie
                  Diagnosed ~ August 2008


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3539
   Posted 2/1/2009 9:31 PM (GMT -6)   
OH my gosh!!!  I saw doubt.  I also read the play.......I read the play first.  It is INCREDIBLE!!!!!  I should have told you to read that,......then go see the movie.  John Michael Shanley is pure genius as the author, screenplay writer and director.  He actually answered an email I sent to him.  Meryl Streep and Seymor Philip Hoffman are both great in it.

Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


Katie7
Regular Member


Date Joined Apr 2008
Total Posts : 114
   Posted 2/2/2009 8:53 AM (GMT -6)   
Cool, I am gonna go see if I can find that book 'DOUBT' today. Is book better than the movie? Usually they say if you read the books first your disappointed with the movie. I really cant wait to read/see it now!
What you put into the lives of others comes back into your own ; The will of God will never take you where the Grace of God will not protecxt you!
                              Hugs~Katie
                  Diagnosed ~ August 2008


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 2/2/2009 9:30 AM (GMT -6)   
Hey Katie

It's avail on Amazon. Make sure u find it by author. It's not at all pricey.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


theshultzgang
Regular Member


Date Joined Jan 2009
Total Posts : 38
   Posted 2/2/2009 9:18 PM (GMT -6)   
Hi there!

I had to chime in about books. Love them! When I have time and energy, of course. I agree that "Water for Elephants" was awesome, and I'm just starting to read "Marley and Me." "Everyday Blessings" is also good for helping you stay in the moment.
Stay at home Mom
wheat / dairy free & organic since 2007 -- amazing difference!
Diagnosed with RR MS 11/2001
Copaxone and starting LDN
Healing more and more every day
Andrea :)

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