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Member Since 29 Dec 2013
Offline Last Active Jan 01 2014 03:03 PM

Posts I've Made

In Topic: Feeling Better But Still Not 100% Since Going gluten-free

01 January 2014 - 02:47 PM

Bella, it's not narrow-mindedness, it's wanting to stick to the facts. All of the leading celiac researchers have stated that there is absolutely NO EVIDENCE that cross-reactivity exists. ALL of them. While a lot of us do have additional intolerances, they do not damage our villi, and if we were having cross-reations, they would. I would much rather heed the advice of the TRUE experts who have devoted their lives to researching this disease than those folks who have something to gain from their "theory". Almost all of the (mis-)information available on the internet about cross-reactivity come from people who are selling something. And because it has been all over the internet lately, the real experts HAVE done studies that have PROVEN the whole idea is false.


I think all of us "old timers" here get a little edgy about it because we don't want to see any newbies being mislead into giving up things they don't have to. We all recieved so much help when we first came here and we stuck around to pass it forward. Every time someone suggests cross-reactivity is a real thing, they are doing a real disservice to all of us here. I fear there may be SOME newbies who might read it and think the diet is just too hard, so they give up. Let's just stick to the things that are PROVEN, give help and advice where we can, and then sit back and enjoy the "I feel better!" posts these folks will be making soon. :)

I have given some examples showing where I got my information from.  As opinion is divided as to whether or not it is an issue I was simply suggesting it as something to consider.  I think when it comes to nutrition - as we are learning more and more all the time and NO ONE has all the answers - it would be nice if people can keep open minded and at the very least agree to disagree.  It has not been proven that cross reactivity either exists.  I came to this forum for support and to learn from others but it seems all I'm getting is narrow mindedness and not being allowed an opinion.

In Topic: I'm Unsure And Feel Terrible. Help

31 December 2013 - 01:41 AM

It's obviously easier to be diagnosed celiac if you are eating gluten but if you've already stopped, the best bet is a genetic test.  If that test comes back negative then you know you can't have celiac disease (though you might still have an intolerance or allergy.)  If it comes back with a result indicating you have at least one of the genes you MAY get celiac disease but may never.  


The skin rash combined with your vitamin/mineral deficiencies suggest you MIGHT have celiac disease.  Best to discuss with your Doctor. Some Doctors don't know much about these issues so if you are not satisfied with the first opinion, get another one. I was lucky to have a Doctor who specialises in nutrition so was diagnosed quickly.  It's great that your Doctor quite rightly suggested the correlation between having one autoimmune disorder and others, as it is often the case.  If you are genetically susceptible but do not have celiac disease at this point you might want to be re-tested from time to time (say every year unless you have symptoms in the meantime).

In Topic: Feeling Better But Still Not 100% Since Going gluten-free

30 December 2013 - 09:56 PM

Thanks for all the replies. Some really good ideas. I think maybe cross contamination could be a problem. I swear though it seems every processed food makes me sick. Last night I thought I would try something new and tried a gluten free, nut free, dairy free berry bar made with corn, rice, and soy. And 2 hours after eating it I started feeling unwell, I went to bed, and now all day today I've felt really sick in the stomach. The only thing I can think of is that maybe I'm allergic to soy as well. It's really strange.



And the rice milk which makes me sick in the stomach is the vitasoy rice milk: "Ingredient Declaration: Filtered water, whole brown rice (min. 13%), sunflower oil, calcium phosphate, sea salt". http://www.soy.com.a...emilk-original/



There is nothing in that at all that should make me sick... but it does. Again it's really strange.



And to answer the question about whether or not I got the genetic testing done, I didn't. However there does seem to be lots of food intolerances in my family. My mother also gets digestive issues and says after eating bread she feels sick, and she feels sick after eating the lindt chocolate too... My brother gets sick from drinking milk. And my sister has a really bad reaction to msg. Lots of skin allergies in my family as well. So I wouldn't be surprised if we are all just prone to certain food intolerances.



I think for now I'm just going to play it very safe and try reintroducing things again in 3-6 months time. So my list to cut out for now will be, gluten, dairy, nuts, soy, and pretty much all junk/processed food just in case it's been cross contaminated.



Can't wait to get back to 100% though, then finally I might be able to start putting some weight back on, I've dropped from 85kg (187lbs) to 70kg (154lbs) since having all these food intolerances. It really sucks.

Hope you feel better soon.  The elimination diet is a good idea.  My boyfriend has not only celiac disease but multiple food allergies so it can be a challenge.

In Topic: Feeling Better But Still Not 100% Since Going gluten-free

30 December 2013 - 09:55 PM

Nice to see everyone being open to different ideas.  I didn't say I was definitely correct just that it was a possible explanation.  I know people with severe food reactions in addition to celiac disease.  There is adequate support for cross reactivity - both for and against.  I believe when it comes to food allergies and celiac disease that it is better to be open minded and explore possible explanations when someone is not getting better.  As I said before people are entitled to their opinions.  I am not trying to make the diet "hard" just offer possible things to consider for someone having a difficult time.  Seriously didn't expect such narrow mindnessness from fellow celiacs.

In Topic: Feeling Better But Still Not 100% Since Going gluten-free

29 December 2013 - 05:06 PM

It's not my opinion, it is the opinion of celiac disease researchers.

Not a problem.  I have read that from some sources and I have read the opposite from others - from celiac disease researchers and Doctors.  I am not saying I know 100% that my view is correct, however from my reading I think it can be an issue for some.  The original link I gave was written by a Doctor, however here is another example (see below).  


What it comes down to is that regardless of which researchers you believe, it is up in the air, and some people on gluten free diets do not get 100% better as we all know.  As everyone is different, it is worth considering cross reactivity, cross contamination and food allergies if eliminating gluten doesn't do it (ofc also considering how damaged the gut lining was to begin with).



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