Gluten Sensitivity or Gluten Intolerance - My MSAA Community

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Gluten Sensitivity or Gluten Intolerance

nicoly3467 profile image
11 Replies

Hi Friends-I’m curious if anyone has a gluten sensitivity or gluten intolerance? Several people who I met and have MS, had either one before they were Diagnosed with MS.

I remember when I was a 16 year old teenager having problems eating any type of bread and it always made me feel bloated, and gassy. Milk was the worst at this age onward. I wasn’t aware at this age of any connection to these foods causing the problems. In my early 40’s, I was tested for gluten intolerance/sensitivity when I went through a battery of tests before being lDx with MS: Gluten results were negative. I never understood this, and thought maybe it’s a gluten allergy causing these intestinal symptoms, hence an inflammatory response in my body.

Now I abstain from glutinous products and eat GF bread, or I bake my own bread, brown rice, GF noodles, etc. and feel much better-No digestive problems. It’s a mystery to me and would love to hear if anyone has had similar digestive issues in their life?

And I’m not saying a gluten allergy is the cause to my MS, but I know it surely doesn’t help me.

Thanks, Nikki

11 Replies
rjoneslaw profile image

I have MS and I don't have this but my sister who doesn't have MS does

carolek572 profile image

I have 'ms' and I have a gluten sensitivity. I did remove all gluten from my diet back in 2004 and have never felt better. I have always had a lactose intolerance, and I have always had problems digesting milk products. Then, I was diagnosed with 'ms' in 2006. Yes, your story rings very familiar and similar to mine. :-D

nicoly3467 profile image
nicoly3467 in reply to carolek572

That’s interesting. I’m glad to hear refraining from it has helped you so much.

Frances_B profile image

There are a few smallish studies showing both positive and negative relationships between MS and coeliac disease, and it is known that having one auto-immune disease can mean that you are more likely to develop another one, however it's not a foregone conclusion.

If your gluten tests were negative the problems you had probably had nothing to do with gluten. Depending on how may years ago you were tested you could always get the tests done again just to see what the results would be now, but the results could be inaccurate if you are not currently eating foods containing gluten. Many people who believe they have a gluten problem, even when tests are negative, are more likely to have problems caused by FODMAP foods. I've known a few people who were absolutely convinced that gluten was their problem but when they worked through FODMAP eliminations and challenges it turned out their issues had nothing at all to do with gluten.

There have also been a few small blinded studies done where people consumed foods containing gluten without knowing they were doing so, and actually had no digestive issues at all. Some participants in these studies were somewhat upset about this because they wanted to cling onto their supposed gluten "intolerance" despite the evidence that they didn't have one. (I wonder what other internet-driven fad health "problem" they adopted next...... :) )

Unfortunately, "being" gluten and/or lactose sensitive is incredibly popular these days, even when medical tests show there is no problem, but food manufacturers love this because it gives them whole new premium-priced high-profit product ranges that they can develop and promote and financially it is in their interests to encourage people to believe they have a problem. The latest fad products to hit the supermarket shelves are all the protein bars and other high protein products - most of which are heavily promoted as being healthy for you , but which are no better for people than most other pre-packaged processed foods - they just have a bit more protein in them, and some flashy packing.

The good thing about the internet is that it has made so much information available to people - the bad thing is that so many people are not able to judge the quality of that information, and end up being led down some pretty useless garden paths lined by all sorts of pseudo-science and junk academics with nonsense or made up "qualifications" (often with vested financial interests being served by them promoting their own "specially formulated" products which are, of course, vastly superior to anything else available in the entire universe!!!).

nicoly3467 profile image
nicoly3467 in reply to Frances_B

Wow thank you, you’re a wealth of information. I appreciate your help and knowledge. After reading this, I realized it may not be a gluten allergy after all. I agree with the “gluten hype” these days for healthy ordinary people who have no symptoms or digestive problems, but many food companies and especially the media make it sound healthier to eat this way, it’s really not if you don’t have a prob.

As for me, I associated connection of refraining from gluten to feeling better digestive-wise. I’m suspecting this may be more of a wheat allergy or along these lines. I’ve heard of Fodmap but don’t know details. I’ll check out link.

Also, I’ve never had a food/allergy test and it’s time I’ll request one from my primary doc to see if anything shows up. I know I’m allergic to flower pollen and grass; Pollen flies around in air on all the crops we eat, so this is a hard one to decipher.

Ok, I’ll see what I find, since I’ve always wondered.

Thanks, Nikki 😊

Weldon60 profile image

My brother is gluten intolerant and I am one with MS. I was tested for gluten intolerance, but the test came back negative.

IFwczs profile image

Per Ann Boroch (and it's also part of the anti-inflammatory diet), MS patients need to exclude gluten, dairy and sugar. I have been doing this for 3 months. It doesn't really matter if we are gluten-intolerant or gluten-sensitive. We should not have gluten.

nicoly3467 profile image
nicoly3467 in reply to IFwczs

Her book is great. I have to look up why she recommends no gluten or is it just based on refraining from it due to inflammatory aspect.

IFwczs profile image
IFwczs in reply to nicoly3467

I have read some things about gluten. I don't ever want to look at it again, MS or no MS.

IFwczs profile image
IFwczs in reply to nicoly3467

I resisted going gluten-free for years thinking it's all marketing. (My Integrative Medicine doctor told me no gluten five years ago.) To make an excuse, I actually found an article that says gluten-free diet if you have no gluten allergy or sensitive is bad for you. A lie! And I was an idiot!

nicoly3467 profile image
nicoly3467 in reply to IFwczs

Yea, there surely is some misleading info re: gluten out there.

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