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Ulcerative Colitis
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Posted 6/1/2015 6:06 PM (GMT 0)

Poppie said...
Gary, I don't know why so many people care whether people are Gluten free or not!!


I agree. I have no idea what his problem is. Because eating bread is in the Bible? I get it that he has no problem with eating gluten but why is he continually trying to discourage others to discover for themselves whether they are affected or not.

Doctors who pooh-pooh going gluten-free remind me when the overwhelming medical consensus 10-15 years ago was that probiotics were a waste of money. My last GI still thinks so. But now the mainstream consensus has changed about probiotics and is slowly changing about gluten.

I experienced two horrendous flares in the past 7 years. Two colonoscopies with biopsies confirming a ulcerative colitis diagnosis, or at least Crohn’s colitis. After monitoring my diet every day for years there is no doubt in my mind that gluten causes flaring symptoms for me. I know this as sure as I know that if I jumped out of my window I would crash to the ground. I really don’t need someone to tell me that gluten, or the force of gravity, is all in my mind.

Think how much suffering and aggravation that could have been avoided if the dozens of members here who now avoid gluten, Ima, Kaz, and myself, just to name a few, had read a post 10 years ago from here or anywhere that gluten was causing flares. But such posts were not available at least not on this forum and very little information in the mainstream media.

How would Gary feel if we presented a doctor’s view that there is no such thing as a DAO deficiency or histamine intolerance? Or that grape seed extract is a waste of money. I have seen medical authorities pooh-pooh that as BS.

But I would never quote those doctors here on this forum. First of all Gary is speaking from his own personal experience, and in my experience I know nothing about DAO. So why would I quote some doctor, especially when there are other doctors who believe in DAO. (Just like there are many doctors who advise avoiding gluten.)

I would not only be insulting Gary and putting down his personal experience, but there may be many others who might have been helped by knowing about DAO but would now avoid it because of my post quoting doctors who say it is BS.

But apparently there are some members here who relentlessly try to invalidate our personal experiences with diet and UC.
Posted 6/1/2015 6:27 PM (GMT 0)
Freedom of speech applies to speech being suppressed by the US government. In the world, there is no guaranteed free speech, and not on a private forum, either.

Why is it impossible to discuss ideas without attacking people?
Posted 6/1/2015 6:32 PM (GMT 0)

IamCurious said...


...I know after this thread I am a dead man and will probably be banned from the forum..

I certainly hope that is not the case, as I need to hear from you and others who are coping with this illness without benefit of medication. Anyway I don't think they can ban you absent some breach of the rules, which doesn't seem to be the case here.
Posted 6/1/2015 6:39 PM (GMT 0)
You should familiarize yourself with the rules/guidelines of the forum.
www.healingwell.com/community/default.aspx?f=46&m=106997

3. No posts that attack, insult, flame, defame, or abuse others. Respect other members' opinions regarding treatment decisions. Decisions about health and well-being are highly personal choices. We should respect all points of view. Flaming will not be tolerated.

9. Be respectful of moderators in both the forums and any private communications.
Posted 6/1/2015 6:39 PM (GMT 0)
Garylouville has been relentlessly attacking us for avoiding gluten for the past two years, calling us cultists and followers seeking a useless fad. Whenever we call him on it and defend ourselves he backtracks by saying that he didn't mean the people ”not on this forum, but people in general”. Yeah right. Then proceed to attack us at the next chance he gets.

According to the moderator Gary is free speech and people like us who prefer to watch our diet are attackers. We never attack anybody who chooses to eat whatever they want so why are they attacking us?
Posted 6/1/2015 6:46 PM (GMT 0)

the thinker said...
absent some breach of the rules, which doesn't seem to be the case here.

That is what I thought but he deleted my post anyway.
Posted 6/1/2015 6:49 PM (GMT 0)
***. This isn't a democracy, it's a moderated forum. And iPoop is one of the most helpful and knowledgeable people on here.

Edit: Lol, they censored W-T-F
Posted 6/1/2015 7:04 PM (GMT 0)

ks1905 said...
You should familiarize yourself with the rules/guidelines of the forum.
www.healingwell.com/community/default.aspx?f=46&m=106997

3. No posts that attack, insult, flame, defame, or abuse others. Respect other members' opinions regarding treatment decisions. Decisions about health and well-being are highly personal choices. We should respect all points of view. Flaming will not be tolerated.

9. Be respectful of moderators in both the forums and any private communications.

Ditto.

IAC, this is a moderated forum. Anyone's post can be deleted for violating forum rules. Violations are violations, regardless of who posts them.

This thread is not really helpful for the rest of the forum, as it seems you are just infighting with me? I am not sure what you are trying to accomplish?
Posted 6/1/2015 7:07 PM (GMT 0)
Since this isn't the only place you have had posts deleted, perhaps you should look at the words you are using that others are having a problem with.
Posted 6/1/2015 7:11 PM (GMT 0)
My thread on the psoriasis forum was deleted mysteriously. I never wrote one word of it myself, all I did was quote a scientific study saying that pycnogenol was effective for psoriasis. That's all, unless you want to include that I said “fyi:”.

check it out, the rewritten thread is still out there.
Posted 6/1/2015 7:12 PM (GMT 0)
I don't think IamCurious really said anything that bad.
I doubt that Gary was even offended, I have a feeling he enjoys a good debate.
I did not feel that Gary was attacking people that are Gluten Free, but I do think he enjoys chatting about the subject.
I think IPoop is a very good moderator, always with good advice, but I do think he was over zealous on this occasion.
Posted 6/1/2015 7:13 PM (GMT 0)

IamCurious said...
My thread on the psoriasis forum was deleted mysteriously. I never wrote one word of it myself, all I did was quote a scientific study saying that pycnogenol was effective for psoriasis. That's all, unless you want to include that I said “fyi:”.

Ask the psoriasis mods, their business not mine. Best I can tell is:

Rule 5 violation. No posts regarding research studies, surveys, or clinical trials without prior approval from the forum administrator.
Posted 6/1/2015 7:23 PM (GMT 0)

ki-wi said...
This isn't a democracy, it's a moderated forum.

Ditto
Posted 6/1/2015 7:24 PM (GMT 0)
In defence of Gary - I really don't think he has been attacking anyone. In this case it was also just a simple article share.

--------

The worthy discussion is gluten itself:

1) Yes Gliadin and Glutenin which make up "gluten" are high molecular weight, low soluble proteins. This makes them very "immunogenic", but only in some (genetic predisposition - celiac) and only if they can make their way through the physical barriers (mucus) in which case they need to diffuse across. So those with barrier issues may find difficulty with gluten which can lead to tolerance/sensitivity issues. In this case gluten is NOT the culprit... the underlying barrier issues is.

2) Bacterial metabolism of Gluten can alter and make the peptides (small protein fragments) more immunogenic - B.Fragilis is one is one type of bacteria that does this depending on the genes they possess.

3) Because of the above (#1 & #2) one has to remember that Gluten is in fact a protein..... and the problem lies in immune recognition of specific protein peptides. Not that bread and other gluten product are "unhealthy".... or killing anyone... as is promoted on many gluten free sites.

4) If you want to see Gluten for yourself - take a few slices of bread and put it in a large glass of water and stir it around for a while... The lump of "muck" that remains at the bottom will be almost pure gluten (proteins). The reset of the starches will have dissolved into the water and now to understand the solubility issues pour out the excess water so that only the lump of gluten remains... to further dissolve this (break down the proteins) you need to simply add alcohol... and stir away. So this is somewhat like the process the body goes through.. Enzymes break it down to a point but complete breakdown requirers alcohols - which are produced by some bacteria in our systems. Many of us with IBD seem to be low on these bacteria and this can further add to gluten issues as it leads to larger amounts of immunogenic peptides in our systems to react to.

5) Some people bite into certain types of apples and oranges (my niece for one) and this causes their mouth to tingle an lips/tongue to swell. This is a cross reaction - her father has a Birch Pollen Allergy and her immune system cross reacts with the proteins found in the skin of apples and oranges. They are very similar to Birch Pollen proteins. So in some cases a type of cross reaction may be taking place in some with gluten sensitivity. Not much is known at the moment.

-----------

I think he and many others on here have also discussed that "Gluten" is getting a bad rap.... It's not some evil thing that is harming our health and causing us all to die of inflammation. No one is saying there is no need to avoid it or that it is in our heads etc etc etc... just that it's probably getting a bad rap... and might not really be the true "source" of our digestive problems.

I think all he is saying that by all means - do try and avoid gluten and see if it helps. If it doesn't then start eating it again if you have no issues. Many on here have and eat sandwiches and cereals everyday.

I very much wish I was one of these people LOL. I miss breads like crazy. But I don't think Guten is my evil nemesis - just a consequence of my IBD.
Posted 6/1/2015 7:24 PM (GMT 0)

Judy2 said...
Freedom of speech applies to speech being suppressed by the US government. In the world, there is no guaranteed free speech, and not on a private forum, either.

Why is it impossible to discuss ideas without attacking people?

Ditto
Posted 6/1/2015 8:10 PM (GMT 0)
I am sorry but i don't find this thread to be productive. I am not trying to block your free speech because, frankly, I think opinions should be welcomed but, this post is pointless. If you need to discuss this, you need to email [email protected]. We, the moderators, do the best we can. We do not intend to block alternate opinions, we just try to keep the peace.
Posted 6/2/2015 2:25 AM (GMT 0)
I am locking this thread. IAC needs to cool off. Moderators do the best they can but in the end they're just like you.... Someone with chronic illness. It would behoove you to exercise some patience. I have talked with iPoop and I think he's open to a range of opinions as long as they aren't thrown around as insults. So I'm declaring a timeout. IAC I will ban you if you persist. Know that your concerns have been heard loud and clear. Let's grow up and move on.

BTW, sharing articles and research study information is fine. The rule refers to recruiting for research studies which is not allowed without prior permission. Therefore I think IAC was ok sharing what he thought was a useful resource.
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