Following gluten-free And Sick (One Year Later)

[Kathleen Smith]

Just need some advice or a pep talk.....

I am sick with extreme nausea again (it happened about 6 months after going gluten-free b/c of hidden gluten I guess-rookie mistakes). Now another 6 months later (1 year total, my last bloodwork was GREAT too) after I eat lunch (no matter what it is) I get VERY, VERY nauseou.

I did go out to eat a couple of times the past two months for work, but I had the group go to Charlie Browns and ordered off gluten-free Menu. Then twice with family I went to eat at a Resturant which I called ahead b/c they were listed as gluten-free "Friendly". They were very knowledgable about it and cooked me risotto in seperate pan and understood about hidden gluten in sauces.

Could i be so sick from accidental glutening a year later????

The last time I got this nauseos (last Sept/Oct) I ran back to the GI doc and she ran tons of tests and couldnt find anything except my antibodies were raised so we blamed gluten.

I am going to a a celiac research center tomorrow!!!! Hopefully that will help/

[Issy]

There are so many here that may have a better answer for you...however, I thought I would mention what it's been like for me. What ended up working for me.

I never felt like I was making any progress in symptoms until I did 3 things:

1. I gave up all grains per the Paleolithic diet (as well as legumes and white potatoes - the anti-nutrient compounds made by these plants can continue to make us ill. After all, the plants make these chemical compounds to discourage animals from eating them before they get a chance to go to seed)

2. I gave up dairy except for all-natural heavy cream in AM coffee and pastured butter (Kerry Gold from Ireland). It was brought to my attention that most celiacs cannot re-introduce cheeses and milk for a while. Some won't be able to use cream and butter either.

3. I got a blood glucose monitor and checked one and two hours after eating and made sure my blood sugar wasn't ever going over 120 mg/dl. This is something I think we should be taught to do from a very young age, as part of our daily care, like brushing our teeth. Now I can stay under 100, no matter what I eat. Newer research says this is optimal.

It just never worked for me when I was skirting around gluten and eating other starches and grains. I felt terrible after meals unless I was eating fats and proteins and non-starchy vegetables. Some of the replacement flours and starches could spike my blood sugar worse than anything else I ate. Udi's bread, so wonderful - yet it spiked my blood sugars to almost 170 - just one small piece of the whole grain type! That high a number is flirting with diabetes for sure. I had a cupboard filled with both corn and rice type pastas from all the major gluten-free manufacturers. But I didn't feel well and I had constant DH outbreaks and migraines 3-5 times a week.

One day, I found a podcast by a guy named Robb Wolf, that has been the absolute best source of health information for me. My life hasn't been the same since. Robb cannot eat gluten and believes that most everyone out there would be better off without it. His podcasts are the absolute best out there. Period. He is coming from a research background and is so incredibly knowledgeable in health and fitness - had I only known about him years ago. His podcasts are his answers to listener's questions, so there is a wide variety of topics covered. I would suggest downloading all of them - go to his website to get the 2009 ones. Some of the stuff is workout oriented, but a lot of it is nutrition and illness. Website is robbwolf DOT com.

There is also Dr. Kurt Harris' blog at paleonuDOTcom. Again, invaluable information and the detailed explanations for why avoiding gluten may not be the complete answer for us. For any of us. I devour everything these guys write and say. It causes a complete re-thinking of everything I thought I knew about providing nourishment to my body. They both have additional links on their sites to some of the best, most cutting edge thoughts on how to become well again. Dr. Harris' links were ALL added to my bookmarks.

You should also try to find a copy of a book at your library titled "Lights Out: Sleep, Sugar and Survival." Author is T.S. Wiley. It's from 2002. Robb Wolf talked about it and it was a VERY good read.

Sorry if I seem like I'm on a soapbox. But I was doing gluten free to near perfection, including replacing ALL my cookware and utensils. And still I was not having the progress towards health that I thought I should. Someone on one of these boards even mentioned eating paleo - maybe not this one, perhaps another board. And that comment just slipped by me until later on, when I begun to understand what it was. That was a real "Ah-Ha" moment for me.

Just my thoughts, YMMV. It changed my life for the better.

[Issy]

Well, I should say "make that 4 things."

Get rid of all vegetable oils. These are all high in Omega-6 which is very unstable when used for cooking and frying. In fact, it is probably oxidized when it leaves the bottling plant. They make us very ill.

I use coconut oil, bacon grease, clarified butter (ghee, that I make myself) for frying. I use extra virgin olive oil to dress salads and vegetables but never heat it because it's pretty delicate. I am trying to save up and justify the purchase of macadamia nut oil for a replacement for olive oil. I am NOT much of a fan of the taste of EV Olive oil. So I look forward to the Macadamia nut oil.

[Ahorsesoul]

When was your last period?

[GlutenFreeManna]

Hi, I'm somewhat new at this, but I was wondering if you have eliminated soy from your diet as well? I find that I get nausea when I eat products with soy in them. Many, many processed items have soy. Perhaps soy or something else beside gluten is causing your nausea. I did an elimination-type diet to figure out what else I needed to avoid besides gluten. If you have not tried this, I highly recommend it.

[Looking for answers]

There are so many here that may have a better answer for you...however, I thought I would mention what it's been like for me. What ended up working for me.

I never felt like I was making any progress in symptoms until I did 3 things:

1. I gave up all grains per the Paleolithic diet (as well as legumes and white potatoes - the anti-nutrient compounds made by these plants can continue to make us ill. After all, the plants make these chemical compounds to discourage animals from eating them before they get a chance to go to seed)

2. I gave up dairy except for all-natural heavy cream in AM coffee and pastured butter (Kerry Gold from Ireland). It was brought to my attention that most celiacs cannot re-introduce cheeses and milk for a while. Some won't be able to use cream and butter either.

3. I got a blood glucose monitor and checked one and two hours after eating and made sure my blood sugar wasn't ever going over 120 mg/dl. This is something I think we should be taught to do from a very young age, as part of our daily care, like brushing our teeth. Now I can stay under 100, no matter what I eat. Newer research says this is optimal.

It just never worked for me when I was skirting around gluten and eating other starches and grains. I felt terrible after meals unless I was eating fats and proteins and non-starchy vegetables. Some of the replacement flours and starches could spike my blood sugar worse than anything else I ate. Udi's bread, so wonderful - yet it spiked my blood sugars to almost 170 - just one small piece of the whole grain type! That high a number is flirting with diabetes for sure. I had a cupboard filled with both corn and rice type pastas from all the major gluten-free manufacturers. But I didn't feel well and I had constant DH outbreaks and migraines 3-5 times a week.

One day, I found a podcast by a guy named Robb Wolf, that has been the absolute best source of health information for me. My life hasn't been the same since. Robb cannot eat gluten and believes that most everyone out there would be better off without it. His podcasts are the absolute best out there. Period. He is coming from a research background and is so incredibly knowledgeable in health and fitness - had I only known about him years ago. His podcasts are his answers to listener's questions, so there is a wide variety of topics covered. I would suggest downloading all of them - go to his website to get the 2009 ones. Some of the stuff is workout oriented, but a lot of it is nutrition and illness. Website is robbwolf DOT com.

There is also Dr. Kurt Harris' blog at paleonuDOTcom. Again, invaluable information and the detailed explanations for why avoiding gluten may not be the complete answer for us. For any of us. I devour everything these guys write and say. It causes a complete re-thinking of everything I thought I knew about providing nourishment to my body. They both have additional links on their sites to some of the best, most cutting edge thoughts on how to become well again. Dr. Harris' links were ALL added to my bookmarks.

You should also try to find a copy of a book at your library titled "Lights Out: Sleep, Sugar and Survival." Author is T.S. Wiley. It's from 2002. Robb Wolf talked about it and it was a VERY good read.

Sorry if I seem like I'm on a soapbox. But I was doing gluten free to near perfection, including replacing ALL my cookware and utensils. And still I was not having the progress towards health that I thought I should. Someone on one of these boards even mentioned eating paleo - maybe not this one, perhaps another board. And that comment just slipped by me until later on, when I begun to understand what it was. That was a real "Ah-Ha" moment for me.

Just my thoughts, YMMV. It changed my life for the better.

I couldn't agree with you more. I did all the same as well, haven't done the sugar testing, but that's next. Good info!

[Looking for answers]

Take quality enzymes and probiotics with each meal has helped me tremendously. I would suggest you do the same, along with all the other advice given here (checked for other food allergies, eat whole, unprocessed foods, etc).

[T.H.]

Hmmm...well, a couple ideas, for what they are worth!

1. Could be that you have issues with more than just gluten. My GI doc says that most of his celiac patients end up having allergies or sensitivities to other foods, and that definitely applied to me. Certain foods now make me sick as a dog. Some of them were allergies, some of them don't show up on any medical tests, but after keeping a food journal and then testing to see how I feel if I eat them, we know that they are no good. So, that's definitely a possibility.

2. Fructose malabsorption. People with this have problems with grains, veggies, fruits...all sorts of things, if they have the right 'stuff' in them (info. about it here: Open Original Shared Link ). It's pretty new to the scene, so many doctors won't even think about it, if they know of it at all. It's also something that is caused, not inherited, and they are finding correlations between people with gut issues (like celiacs) and this condition.

Just need some advice or a pep talk.....

I am sick with extreme nausea again (it happened about 6 months after going gluten-free b/c of hidden gluten I guess-rookie mistakes). Now another 6 months later (1 year total, my last bloodwork was GREAT too) after I eat lunch (no matter what it is) I get VERY, VERY nauseou.

I did go out to eat a couple of times the past two months for work, but I had the group go to Charlie Browns and ordered off gluten-free Menu. Then twice with family I went to eat at a Resturant which I called ahead b/c they were listed as gluten-free "Friendly". They were very knowledgable about it and cooked me risotto in seperate pan and understood about hidden gluten in sauces.

Could i be so sick from accidental glutening a year later????

The last time I got this nauseos (last Sept/Oct) I ran back to the GI doc and she ran tons of tests and couldnt find anything except my antibodies were raised so we blamed gluten.

I am going to a a celiac research center tomorrow!!!! Hopefully that will help/

[Northern Celiac]

yes, you can definately get sick that easily. You are more sensitive to gluten then before. I am very careful when I eat out. just because they say gluten free you can't trust them. You need to call and ask questions. If ur going to eat out my advice is keep it simple as possible