September Roll Call

[Purpel1]

*Looks around* Man, is it dusty and empty in here. Hellloooooo!!! Anyone home??!!

[Marciab]

Hi. I'm here. :) I really miss the folks at gfab, don't you ?

How's it going ?

I wanted to post a question about how well people are healing via the gf diet. Does anyone have details on this ? Do auto immune diseases associated with gluten resolve too ?

I'm still struggling with orthostatic intolerance and cognitive problems after 9 years on an elimination diet.

Tx .. marcia

[GFStephanie]

I read way too much about people not healing on the GF diet.

Most recently is this analysis which states that the safety of 20 ppm has not been proven. I agree wholeheartedly.
Only registered and activated users can see links., Click Here To Register...

[Purpel1]

Hi Marcia It's been too long, and I agree, I miss the friendliness of the old boards. I don't know about GF and autoimmune systems--Sorry. I hope it resolves soon. Good luck.

Hi Stephanie :hug: Thanks for the info...It's good to see you again, too.

[Marciab]

Thanks Steph but I knew about the gf diet not being gf enough for some. I was 99% paleo from 2008-2013 because I was super sensitive.

My auto immune diseases didn't resolve so I added gf processed foods back into my daily diet in Jan 2014. So far I'm not getting facial tics , a rash or worsening myoclonus from gluten cc. kow.

Possibly because the gf foods I'm eating are safer.

I'm curious about the recovery rate of auto immune diseases post gf diet. I have the dq2 gene so obviously gluten has always been a bad idea for me.

I found an article by Dr Hyman on healing auto immune diseases. In that article he seemed optomistic about diet and treating bad bacteria, candida and heavy metals reversing auto immune diseases.

Granted I could've treated for more but exhaustion, orthostatic intolerance, money, etc held me back.

Gotta rest. Marcia

[Marciab]

Hi purpel1. You're right. It's the freindliness I'm missing. We were all on similar missions so it was easy to relate. Tc .. marcia

[GFStephanie]

Thanks Steph but I knew about the gf diet not being gf enough for some. I was 99% paleo from 2008-2013 because I was super sensitive.

My auto immune diseases didn't resolve so I added gf processed foods back into my daily diet in Jan 2014. So far I'm not getting facial tics , a rash or worsening myoclonus from gluten cc. kow.

Possibly because the gf foods I'm eating are safer.

I'm curious about the recovery rate of auto immune diseases post gf diet. I have the dq2 gene so obviously gluten has always been a bad idea for me.

I found an article by Dr Hyman on healing auto immune diseases. In that article he seemed optomistic about diet and treating bad bacteria, candida and heavy metals reversing auto immune diseases.

Granted I could've treated for more but exhaustion, orthostatic intolerance, money, etc held me back.

Gotta rest. Marcia

OK then. The problem then lies in knowing where contamination might occur. I can get gluten tests that are used for certification by the GFCO since I have my own chemical contracting business. I have found gluten in unexpected places like strawberries and mushrooms, presumably because wheat straw was used in their culture. Studies have found gluten in ground spices: Only registered and activated users can see links., Click Here To Register...
and supplements: Only registered and activated users can see links., Click Here To Register...
and coffee: Only registered and activated users can see links., Click Here To Register...
Your problems may stem from continued trace gluten contamination in your diet.

[Marciab]

Bummer. Tx Steph. I only use Mc Cormick plain spices so I think or at least heard those were ok.

I knew about tea but not coffee. I've been off coffee most of the time from 2005 on. It just makes me jittery.

I was as careful as possible, mostly paleo, for about 5 years (after becoming gfcfsf etc free in 2005) and just gave up on it back in Jan 2014.

But I'm not sure my auto immune diseases are just from gluten. Several of my symptoms including ataxia and white lesions resolved but not all. Dr Hyman said his patients need other treatments as well.

I may be dealing with physical damage and/or auto immune diseases too. My lung scarring, Paget's, and lbbb are physical. My hyperinsulinemia, orthostatic intolerance, low elastase, etc. Could be either. It's confusing.

I have a history of leaky gut and have previous stool tests that show parasites, candida and low elastase (digestive enzyme). I never did get the candida and parasites under control despite my best attempts. Granted I'm exhausted and my orthostatic intolerance forces me to lay down regularly if I want to think.

I was just wondering what all this means. I've met about 60 celiacs now and we're certainly a mixed bag. Some recover with minimal effort while eating cross contaminated gf foods daily and some don't. I'm wondering about those who don't.

Tc .. marcia

[GFStephanie]

I have had positive results with a 5 ppm detection level with some samples of the spices that you mention. I don't think that anyone really knows about where contamination is and isn't. There just aren't enough tests being done and they are not sensitive enough. We have varied degrees of sensitivity and I think that is why some of us have continuting symptoms. Some of us have levels of sensitivity greater than the levels of contamination in our food.

Even being as careful as possible, it is likely that some of the most sensitive still don't have diets that are good enough. At some point maybe symptom control is the best that we can do. I don't know. I've started taking digestive enzymes and that's helped a lot with my worst symptoms.

There are two theories about other AI diseases, one is that they are caused by celiac damage and the other is that there is a genetic link. I don't think that they know yet. Only registered and activated users can see links., Click Here To Register...

They have made enormous advances in the understanding of this condition since I was diagnosed back in 2007, but there is still so far to go. Meanwhile all we can do is the best we can.

[Purpel1]

Bummer. Tx Steph. I only use Mc Cormick plain spices so I think or at least heard those were ok.

I knew about tea but not coffee. I've been off coffee most of the time from 2005 on. It just makes me jittery.

I was as careful as possible, mostly paleo, for about 5 years (after becoming gfcfsf etc free in 2005) and just gave up on it back in Jan 2014.

But I'm not sure my auto immune diseases are just from gluten. Several of my symptoms including ataxia and white lesions resolved but not all. Dr Hyman said his patients need other treatments as well.

I may be dealing with physical damage and/or auto immune diseases too. My lung scarring, Paget's, and lbbb are physical. My hyperinsulinemia, orthostatic intolerance, low elastase, etc. Could be either. It's confusing.

I have a history of leaky gut and have previous stool tests that show parasites, candida and low elastase (digestive enzyme). I never did get the candida and parasites under control despite my best attempts. Granted I'm exhausted and my orthostatic intolerance forces me to lay down regularly if I want to think.

I was just wondering what all this means. I've met about 60 celiacs now and we're certainly a mixed bag. Some recover with minimal effort while eating cross contaminated gf foods daily and some don't. I'm wondering about those who don't.

Tc .. marcia

Have you tried a plant based diet? I know there are several websites and blogs dedicated to Gluten free and Vegan diets. Only registered and activated users can see links., Click Here To Register... what came up on Google. I hope this helps. Good luck.

[Marciab]

Hi steph. They're certainly not making it easy for sensitive celiacs are they ?

I had high gluten antibodies in my stool from cross contamination so I'm an over responder.

Or at least I was. I'm not sure now that I'm not getting the blistery rash on my stomach or facial tics from gluten cc.

I looked for an article on how effective a gf diet is for the auto immune diseases associated with celiac but google didn't understand the question. Lol. I wonder if the gluten summit presenters know this by now.

Tc ... marcia

[Marciab]

Hi purpel1. I tried a vegan (veggies, fruits and legumes/ limited grains) diet for 6 weeks but became too weak to function. I need meat.

The paleo diet is great for me but too much work. I'm currently looking at making it easier.

Tc .. marcia

[Purpel1]

Hi purpel1. I tried a vegan (veggies, fruits and legumes/ limited grains) diet for 6 weeks but became too weak to function. I need meat.

The paleo diet is great for me but too much work. I'm currently looking at making it easier.

Tc .. marcia

Ah, ok. I hope something comes up and works out for you.

[aklap]

Hi! Yeah, kind of a ghost town here. I miss GFAB & glutenfree.com forums days as well. Gluten-free is in a very different place and space now days.

Not much different in my world. Still active online - almost exclusively Facebook. Still GIG support group branch mgr. Writing "The Gluten-Free Kingdom" for GIG's quarterly kids newsletter has been keeping me busy.

[GFStephanie]

Times are changing quickly. Is everyone on Facebook and Twitter now? I don't do much Facebook and even less Twitter. Forums are much changed. I agree that things are not easy for the more sensitive celiac. It is basically impossible to know what is going on. You really can't tell if your are reacting to something because it has gluten in it or for some other reason due to having had gluten in something else which has made you more reactive to everything. We need better analytical detection methods, less expensive and more accurate.

I don't know of any articles about GF diet and autoimmune diseases. I did read a review where they commented on not even being sure if the association was from gluten ingestion and celiac disease or linked chromosomes in which case it would likely be independent of diet.

I miss GFAB where there were two that were so good at reporting on the research.

My personal experience is with Sjogrens syndrome and arthritis. The symptoms from those things flare up significantly when I'm glutened and go away when I'm not. There seems to be more of a time delay with those symptoms than the obvious diarrhea and irritability. I am one person and those are subjective observations. Feeling sick sucks and not knowing what to do makes it worse. It is no wonder there is such a big quack industry out there and it is so hard to tell what works and what doesn't.

Being well for me is a lot of work. I grow a lot of food myself because that way I can be sure that it's safe. I also enjoy gardening and fresh food. It's worth the effort, but I'm hoping to be able to make things easier. It is quite possible that getting better is unrelated to all this careful food sourcing. I don't think so, but I do have my mind open to that possiblitiy.

Have you tried a simple unprocessed diet like in the Fasano Hollon paper? That one at least was shown to work in a published study. It's also a lot like what works for me.