How long to see effects of gluten-free diet?

[shoshin]

Super_sally888 or anybody,

I was interested in the discussion on a gluten-free diet on another thread and wonder how long would it take to tell if a gluten-free diet is having any effect on MS symptoms. I was in a situation a couple years ago where I ate a gluten- and dairy-free diet for five weeks (someone else was cooking) and it didn't seem to have any effect on my symptoms. Would that have been long enough to tell?

sho

[yorkieville]

Hi, shoshin.

   I have been told, that it depends on age. If you are an older person, (like me, 55) it can take two years for healing, but with younger people, you can see improvement in 2 months because it takes that long for gluten to get out of your system. It also depends on how much damage gluten has done.

  Sheila

[shoshin]

Wow, that's a long time! I'm 38 so not so young and not so old. I'm okay with being mostly gluten-free, but it's really hard for me to do it 100%, especially with sauces or seasonings or eating out. Well, and the occasionally cookie calling out to me.

I guess you have to be pretty strict though to really tell if you're getting results.

sho

[julia111]

Hi - I do not have MS , but I am on a gluten free diet as well - I'm 41.  I definitely feel better when gluten free, but it's difficult to tell if it's really helping the neurological symptoms.

I totally agree that its difficult to do it 100%.

There are a lot of sauces and good salad dressings that are gluten free.

Have you tried any of the "Pamela's" Gluten Free products?  They make these REALLY good Double Chocolate Cookies - they're so good even my five year old oves them - also, they make a really good Lemon Almond Biscotti;  Pancake and Muffin Mix .  .  . and more!

As far as eating out:  a lot of restaurants have a gluten free menu these days.  Some of my favorite places to eat are Bonefish Grill and Outback Steakhouse - both have gluten free offerings.

Hope this helps some!  : )

Julia

[yorkieville]

Hi, sho.

   At 38, you are young enough to see results within 2 months. (Actually, to me, 38 is pretty young. :)) But, and this is a BIG but, you really cannot eat so much as one cookie containing gluten. I can't think at the moment, (or rarely many any more LOL) but there is a tiny measurement of flour that will cause serious problems. I'll try to look up the measurement. You'll be shocked!

  You can make some delicious Chocolate Chip Cookies with Pamela's Pancake & Baking Mix. And like Julia said, you can get the pre-made Double Chocolate and they are excellent!

  It's a restrictive diet, but well worth it if it eliminates any discomfort.

  Sheila

[LATW]

I went gluten free for 4 years. I lost weight and felt better within 4 months.  But then after a while I started to feel bad again.

I lost weight but I also lost hair. A lot of hair. I felt like that way of eating was making me depressed because I could not eat the foods I enjoyed.  Eating out is difficult at times since we RARELY go to a sit down restaurant because we have the five kids with us most of the time.   Traveling was very difficult.  Family get together meals impossible.  I was always the odd ball.

Anyway.  For me, after a year or so, the benefits did not seem so great. Except for my weight was down and my blood pressure was great.  But as far as feeling better, I really didn't.  

But that is just me.  If you are gluten sensitive or especially if you have Celiac then you MUST be gluten free.  I could not even use the alternatives because of certain food allergies I have that include Tapioca which is used in place of flour in certain recipes.


LA

[yorkieville]

Hi, LA.

  I am so sorry that you lost a lot of hair on the gluten-free diet. Tat shouldn't happen. It sounds like you were not getting enough nutrients in the diet. It is a very precise diet, where you have to make sure that you are not just eliminating foods containing gluten, but also replacing them with foods that contain the vitamins and minerals, etc. that you remove with gluten foods.

If you ever find that you need to go gluten-free again, please consult with a dietitian that understands the gluten-free diet.

  Are you able to eat cornstarch? It is a good alternative to tapioca.

  I agree, eating out is extremely difficult on a gluten-free diet.

Sheila

[LATW]

I'd love to go back on that diet.  I didn't know there were consultants that could help.

How would I find one?

I can eat cornstarch.

Just for the benifit of getting my bp lower it would be worth it.

  Plus I have packed on 15 pounds since my MS dx and starting medications in February.

That is a lot of weight gain really quickly. :(

Lee Ann

[yorkieville]

Hi, Lee Ann.

  I sent you a message.

  May I have those 15#s, please? I am down to 78#s and sick! Lost 10#s in 2 & 1/2 months. :( I don't think our hearts can handle these rapid gains/losses.

  Sheila

[LATW]

Hi Shelia,
I would gladly share with you if I could.  My dad had a NISSIN done because of severe reflux and he is having a terrible time keeping weight on.

We really worry about him.  At least when you have some fat on your body you can handle being sick a little better.  

Him being so thin he ends up in the hospital.  I understand your dilmma.  Are you having stomach problems?

Lee Ann

[yorkieville]

Hi, Lee Ann.

   Wouldn't it be great if you could share the #s with me, that you don't want? :)

   I am so sorry your Dad is having health problems, too.

   I am having bowel issues. Actually have no bowel function, and am trying to get it diagnosed.

  Sheila

[Super_sally888]

Hi,

I was having tummy problems.  Was actually diagnosed with IBS.  Then I tried gluten free and the 'IBS' disappeared almost overnight.  Suffering for years when it was such a simple solution.

I find gluten free is generally very easy (unless I don't plan when I'm out and hungry), and I generally just stick with the naturally gluten free foods; fruits and veges.

Oh, and learn to read labels.

Sally

[LATW]

Sally---Oh, IBS is one of my problems too. I was dx'd about 20 years ago.  I also had my gall bladder removed and have always wondered if that has played a part in my stomach problems.
I have awful reflux when I am not gluten free.

Sheila- Yes, life would seem a little more fair if we could spread our unwanted pounds around to those who need them! :)  

Sounds like you are having a lot of trouble. I hope they can figure it out for you.  :(

Lee Ann

[shoshin]

Thanks everybody for all the info. I don't have any GI problems so maybe this isn't a likely avenue for me to pursue, although if I could come up with a two-month time period where I could be reasonably likely to stick to it, I might give it a shot. And I'll definitely check out the product recommendations if I go that way.

I am a long-time vegetarian so I already have limited options eating out around here sometimes, although I try not to be too strict about it--like I don't interrogate them about whether they've used meat or fish stock in the sauce or things like that, which I wouldn't use at home. With the gluten-free I guess you'd have to be really sure.

sho

[yorkieville]

Hi, Lee Ann.

  Yes, I think life would be more fair if anyone that had unwanted pounds could share them with those that need them. It's just so unfair that some people practically starve to lose a few pounds, and some of us are force feeding to gain.

  Yes, I guess I am having a lot of trouble, and I wish the Docs would figure it out. And just as importantly, I wish they'd figure all of us out.

   Sheila

[yorkieville]

Hi, sho.

   I just wanted to tell you, that many people with Celiac and gluten intolerance don't get G.I. problems. I know, just what you wanted to hear. :)

   I eat primarily vegetarian, occasionally I'll eat a bite or two of chicken. So I understand what you mean about your diet being limited already.

  If you do decide to try gluten-free, you would have to be really strict to see the benefits.
You would have to check with restaurant managers to see how foods are prepared.

Good luck with whatever you decide. :)

Sheila

  

[alastria]

It is tough to know exactly what foods aggrivate your symptoms.  Anti-inflammatory diets usually restrict gluten, wheat, other flours, sugar, dairy, etc.  - then reintroduce those foods one by one to see which ones are related to the symptoms.  So just cutting out gluten may not give you great information if your body is having a big issue with sugar or dairy.  A lot of people who go gluten free replace breads, muffins and cakes with gluten free substitutes which are also very sugary.  

With celiac, of course, cutting out gluten has a dramatic effect on symptoms (when there are symptoms).  With MS, I would say it is probably much more complicated.  The recovery diet and others are about eliminating the big allergic/inflammatory foods and then slowly reintroducing to look for reactions.  Not that diet can be a cure, but for some people, controlling inflammation in the gut can be really helpful for the whole system.  

It's hard when you feel lousy to make great choices with food.  It wasn't until I committed to giving up sugar that I realized I had a real issue with it.  I craved it, thought about it, dreamt about raisons:)  It's not like I ate cake everyday, but I had some sugar everyday (in the form of bread, chocolate, cereal).  I can't say that so far I've noticed huge changes in my MS since I am eating really well, but I figure, at least, I am eating well!  Before, I had this thinking like I should have snacks and sugar b/c I feel terrible - I should at least enjoy food, but I had to fight this thinking.  

Not sure if this is helpful. There is a lot to consider with diet.  There are a few interesting medical nutrition journals out there (you can search and see abstracts on pub med).  People often think there is no research on nutrition out there - but there is lots really.  

[Super_sally888]

Oh, yes, I also get awful reflux when i eat gluten!

[LATW]

There must be an intolerance or somthing then I would think. I can eat meat and vegis all day long and be fille to my eye balls but I never have any reflux

When I start adding breads and pastas I have a terrible time. Then add fat and tomato products and I am in real trouble!

I just started an antidepressant.  So I am hoping to start feeling a bit better and maybe I can get myself back on that low carb gluten free diet.  But not until after my daughter graduation party this weekend.  I want to eat CAKE!!  :)

LA

[shoshin]

Have been somewhat under the weather and preoccupied by other things, but just wanted to say thanks to all for the additional info.

I am trying to pay more attention to my diet. It does seem to be difficult with neuro symptoms (at least for me) to tell if diet is having any effect, especially if it takes a while to see the effect and there are all sorts of other mysterious factors that could be causing changes in your condition. If you stopped eating something and felt better in a day or two that would be one thing... On the other hand, it can't hurt to eat more nutritional food and less junk.

Sheila, I had read that you can have celiac or gluten intolerance w/o GI symptoms, but not having those, I guess I am somewhat less motivated. BTW I hope you get some helpful (and hopeful) answers from your liver scan (not sure if you did--am behind on reading the forum)

sho

[yorkieville]

Hi, sho.

   I'm sorry you have been under the weather. :(  Me, too.

  I don't blame you for not wanting to embark on the gluten-free diet with lack of G.I. symptoms.

   Thanks, I haven't gotten the results of the Ultra-Sound yet, but I am thinking he may want to just discuss those when he sees me on the 10th.

Sheila