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#1 strkngfang

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Posted 12 January 2013 - 11:27 AM

Hello everyone. I'm Dan, a 48 yr old gluten sufferer that has been gluten free for 10 months, but still struggles with leaky gut syndrome. I've been working with a functional medicine doctor for treatments, supplements etc, after years of getting nowhere with GI doctors. They are only interested in slapping the IBS tag on you and prescribing as much worthless harmful drugs as they can. Who knows how long I've been gluten intolerant, it took two trips to the ER with severe cramping and diahrrea to finally convince me that this was more than just IBS.
I'm still only having limited success because now it turns out that I am eating cross reactive foods that my body is mistaking for gluten. I've had to shorten my already slim list of things I can eat and it is frustrating. I've never been scoped for celiac, but I've had the GI effects stool test, the ELISA food panel & various blood tests, all which showed high intolerance to gluten, so I was told for the most part consider myself a celiac.
I don't trust the "gluten free" foods out there either. The FDA only has to meet certain markers to label food, so the ingredients are still there, just in a smaller amount. I'm currently on a whole foods only diet, eating nothing that has any ingredients in it at all. Fruits, vegetables, meats, nuts and that is it. No rice, soy, dairy, potato, egg, which worked for awhile as a gluten substitute, but no more.

I'm on different all natural supplements to aid in healing my leaky gut but it seems like one step forward and two steps back. I'm lucky to have 2 "good" days out of 7. I was a steady 155 in early 2012, I stay consistently at 140 now.

Anyone else as frustrated as I am with any advice?

The good ole insurance companies won't touch any tests that I've had done and I've sunk over 3,000 dollars in treatments, tests, supplements, consultations etc with a functional medicine doctor. My current treatment plan with him runs out in June and then I'm on my own because I can't afford to keep going.
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#2 Takala

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Posted 12 January 2013 - 03:36 PM

I don't trust the "gluten free" foods out there either. The FDA only has to meet certain markers to label food, so the ingredients are still there, just in a smaller amount. I'm currently on a whole foods only diet, eating nothing that has any ingredients in it at all. Fruits, vegetables, meats, nuts and that is it. No rice, soy, dairy, potato, egg, which worked for awhile as a gluten substitute, but no more.

I'm on different all natural supplements to aid in healing my leaky gut but it seems like one step forward and two steps back.


Hi. You seem to be a bit low on "good fats" on that sort of restrictive diet. If you take out that much starch, you MUST add in fat, or you're going to feel very, very tired and be crashing a lot, especially if you are a male. :unsure: I learned from sharing gluten free meals with my spouse that I must carb-load him if we are about to do anything strenuous, or we don't have the same stamina at all. He feels full much sooner, but does not function well. I am another person who does best on a mostly "whole foods" diet, but as I fine - tuned the search for what was actually bothering me, (besides the gluten) I was able to add more foods, such as non lactose dairy, and sometimes even small amounts of grains and starches, back in. (this year will be year 10 on a gluten free diet, for perspective. I started out on a modified "SCD" diet, because I was even having trouble with yogurt.)

My first thought is, barring that you don't have another disease that is not being diagnosed/treated, such as Lyme or thyroid problems, that you have two things going: you've likely got another food intolerance/allergy/reaction that your haven't figured out yet, or you have cross contamination or other strange reactions to your supposed "all natural" supplements or something else in your environment. Example: Just over a year ago, I was slowly getting worse and worse, a combination of fatigue, weight gain, and my skin kept breaking out, and it seemed that I was starting to react to "everything," but after a conversation with a health food store owner, I tried eliminating anything that was processed in a facility with oats, and "bingo" there it was, or part of it. I also had to stop using a certain kind of artificial sweetener that was supposed to be "safe," (much to my surprise, I can do stevia, knock on wood) and I quit using salt that had any grain-derived bulking ingredients added to it which is used to carry the iodine mixture they put in iodized salt. I also noticed that my former source for almonds had changed their label to "processed in a facility with.... wheat" and since they sold a LOT of flavored-coated almonds in the same store, I changed that also, and went with a different one, since almonds are a staple for me. Many of the so- called grain reactions I thought I was having was, it turned out, reactions to what is very likely cross contamination in certain brands, (some are better about this, than others, I have a photo I took at a popular retail store, showing a leaking paper bag of spelt flour on the flour-y shelf next to and above the gluten free flours also packaged in paper bags, to remind myself to not take anything for granted.) and to what was NOT being measured by any testing facility.

I also ditched most processed, "gluten free" lunch meats with any sort of possible antibiotic or grain derived ingredients. Most people are not this sensitive, but I have tested this time and time again, and rice, boiled in iodized grain product salt, and certain lunchmeats were resulting in edema and puffiness in my ankles and fingers every time I consumed them. I wasn't imagining that my face was breaking out a day later, either. I can't do flax or millet. No big deal. But, I also learned years ago here that certain types of Rice Dream alternate milk products are made with barley as part of the process, and even tho they say "gluten free" on the label, some people react. Same with some hemp products, which can have minute cross contamination, or be made with the wrong kind of rice syrup (barley... again :angry: ) just enough to give me a headache or puffiness, which are harvested with machinery that is used on wheat and barley fields, or are packaged by a manufacturer who is making wheat products on the same lines, even if they are technically "gluten free" and tested. What a complete nuisance :ph34r: to have to be this "picky."


I would take another good look at your supplements and what is in them, and other than a multivitamin which has the B complex, that you are positive is gluten free, and are positive that are wheat, rye, and barley free, and some Calcium/magnesium/D, consider laying off of them, and seeing what happens - it is really easy to get up in this sort of "supplement mania," and sometimes these things are giving you side effects which are not obvious. <_<
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#3 strkngfang

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Posted 12 January 2013 - 07:01 PM

Hi. You seem to be a bit low on "good fats" on that sort of restrictive diet. If you take out that much starch, you MUST add in fat, or you're going to feel very, very tired and be crashing a lot, especially if you are a male. :unsure: I learned from sharing gluten free meals with my spouse that I must carb-load him if we are about to do anything strenuous, or we don't have the same stamina at all. He feels full much sooner, but does not function well. I am another person who does best on a mostly "whole foods" diet, but as I fine - tuned the search for what was actually bothering me, (besides the gluten) I was able to add more foods, such as non lactose dairy, and sometimes even small amounts of grains and starches, back in. (this year will be year 10 on a gluten free diet, for perspective. I started out on a modified "SCD" diet, because I was even having trouble with yogurt.)

My first thought is, barring that you don't have another disease that is not being diagnosed/treated, such as Lyme or thyroid problems, that you have two things going: you've likely got another food intolerance/allergy/reaction that your haven't figured out yet, or you have cross contamination or other strange reactions to your supposed "all natural" supplements or something else in your environment. Example: Just over a year ago, I was slowly getting worse and worse, a combination of fatigue, weight gain, and my skin kept breaking out, and it seemed that I was starting to react to "everything," but after a conversation with a health food store owner, I tried eliminating anything that was processed in a facility with oats, and "bingo" there it was, or part of it. I also had to stop using a certain kind of artificial sweetener that was supposed to be "safe," (much to my surprise, I can do stevia, knock on wood) and I quit using salt that had any grain-derived bulking ingredients added to it which is used to carry the iodine mixture they put in iodized salt. I also noticed that my former source for almonds had changed their label to "processed in a facility with.... wheat" and since they sold a LOT of flavored-coated almonds in the same store, I changed that also, and went with a different one, since almonds are a staple for me. Many of the so- called grain reactions I thought I was having was, it turned out, reactions to what is very likely cross contamination in certain brands, (some are better about this, than others, I have a photo I took at a popular retail store, showing a leaking paper bag of spelt flour on the flour-y shelf next to and above the gluten free flours also packaged in paper bags, to remind myself to not take anything for granted.) and to what was NOT being measured by any testing facility.

I also ditched most processed, "gluten free" lunch meats with any sort of possible antibiotic or grain derived ingredients. Most people are not this sensitive, but I have tested this time and time again, and rice, boiled in iodized grain product salt, and certain lunchmeats were resulting in edema and puffiness in my ankles and fingers every time I consumed them. I wasn't imagining that my face was breaking out a day later, either. I can't do flax or millet. No big deal. But, I also learned years ago here that certain types of Rice Dream alternate milk products are made with barley as part of the process, and even tho they say "gluten free" on the label, some people react. Same with some hemp products, which can have minute cross contamination, or be made with the wrong kind of rice syrup (barley... again :angry: ) just enough to give me a headache or puffiness, which are harvested with machinery that is used on wheat and barley fields, or are packaged by a manufacturer who is making wheat products on the same lines, even if they are technically "gluten free" and tested. What a complete nuisance :ph34r: to have to be this "picky."


I would take another good look at your supplements and what is in them, and other than a multivitamin which has the B complex, that you are positive is gluten free, and are positive that are wheat, rye, and barley free, and some Calcium/magnesium/D, consider laying off of them, and seeing what happens - it is really easy to get up in this sort of "supplement mania," and sometimes these things are giving you side effects which are not obvious. <_<


Thanks for the good insights and for offering advice.
I do have total faith in my functional medicine provider who is very knowledgable with digestive issues. He has literally healed hundreds of people, my case just isn't as "cut and dry" as most of his patients. All of my supplements have been advised by him and he is very picky on what he suggests. He only uses certain labs for the supplementation. All the ingredients are natural and fully allergen free. I am also taking Vitamin D, Magnesium Citrate and a GNC vegetable based gluten free multi vitamin.

I just started with the whole foods diet a few days a go after several extremely painful cramping sessions lasting hours. I was eating gluten free bread, Chex cereal, scrambled eggs and gluten free snacks like vanilla chip granola bars as well as fruits and veggies. I haven't had gluten foods since Feb 2012.

When I started treatments in May, I was initially on a ton of supplements. My testing originally showed parasites, overgrowth of yeast, overgrowth of bad bacteria etc. When I re tested again in July, I was rid of everything just mentioned and was feeling pretty good. I made it through July and August with no symptoms and then September I grew worse again and had terrible Oct and November. December, I had about 50% good days and so far this month I average 2 out of 7 days with no issues.

I've had two good days in a row, eating only the whole foods. I have been hungry and low on energy but pain free. My doctor wants me to stay this way until the gut heals properly and then I can try and add some different foods back in.

I took a food intolerance panel test a year a go that showed a lot of "red Flags" so I have to avoid them as well. My main goal is to just stay pain free, because I got crippling pain and couldn't function. I keep a record of everything and am always comparing and contrasting. Thanks again.
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#4 GottaSki

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Posted 13 January 2013 - 08:54 AM

Welcome!

Sounds like you are on the right path - only suggestion I have is stick with whole foods - nothing processed for at least six months. I've had a few windows of improvement over the past few years - trialing foods is very tough on a healing body.

Hang in there - oh I'm guessing your functional doc is testing your vits/minerals - I get these tested every six months - once they were at optimum levels I cut back supplementation - I am currently taking no supplements for the first time in years and am maintaining great nutrient levels.

There are several of us that have had to eat very limited whole food diets to improve ... once feeling good it is very easy to get a bit more creative with a short list of foods.

Let us know if you have any questions :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#5 strkngfang

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Posted 15 January 2013 - 05:34 PM

Thanks, it is so frustrating. I am only slightly better in the past year than I was eating full out gluten products and even then I was avoiding greasy, processed, fast foods, chocolate, caffeine etc, due to my IBS-D symptoms. If my main problem was gluten, which I was told and tests showed, shouldn't I be feeling a lot better? I've been gluten-free for 10 months, I still get gut wretching cramps, pain, diah, constipation etc that comes on when it feels like it, with no provocation. Between what my intolerance panel says I can't eat and the food I just plain don't like, there is only a few things left. Trying to rotate this small circle to not eat the same things days in a row is an almost impossible battle. I'm down to only 2 meals a day and I'm always hungry. Sadly, I was happier being "unhealthy", I'm down 15 lbs since starting treatments and changed diets. I was only 157, so I didn't have any to lose? My biggest fear is that the over 3,000 dollars I have invested will prove to be futile :(

The GI doctors could care less, they just push worthless meds and worthless tests. Been there, done that for many years.
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#6 mushroom

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Posted 15 January 2013 - 06:02 PM

Do you eat things like coconut oil, avocados, nut butters on celery, olive oil salad dressings, things that will bring good fat into your diet? Are you totally grain free, including corn, millet, quinoa, or could some of these be possible? (I know, they're not for me, but just asking since we're all different.) Just trying to get you some good fats and some bulk. Do you eat the root vegetables, like yams, parsnips, rutabaga, turnips, onions, carrots. Lots of times these can be combined and roasted in the oven and make a very tasty addition to the diet. Parsnips make a wonderful mash :) . Squashes are a whole world unto themselves, especially if you roast them first and then make them into a soup. They are also great stuffed. Roasted cauliflower is great. Be creative and tempt your taste buds and try to look forward to creating something good to eat. That way, just looking at the food will make you gain weight :D
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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
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#7 strkngfang

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Posted 16 January 2013 - 04:10 AM

I had quite an extensive list on my food intolerance panel taken in Dec 2011 so I can tell you the only things I can eat or can tolerate, either taste wise or non reaction wise?

Meats- Turkey, roast beef, Fish, Pork
Fruits- apples, peaches, grapes, blueberries, cranberries
Vegetables- lima beans, peas, carrots, spinach, lettuce, green beans
Misc- Sunbutter, lara bars, walnuts, cashews

I have tried in the past two weeks with ill results- broccoli, cauliflower, cucumbers, bell peppers.

I am totally grain free and have been for 5 days. Before that I was eating gluten free foods such as breads, cereal, granola bars etc. I've still had two "attacks" in the past 5 days, so no real difference in the change? My functional medicine doctor thought that I was having cross reactions so I was put on a whole foods diet only on the 11th.
I still believe there has to be something definitively wrong with me to not be getting any better. The handful of supplements I've been on should have offered some long term relief by their self. I've been on gut repairing, anti spasmodics, probiotics, digestive enzymes, magnesium citrate, vitamin D & a fiber???
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#8 bridgeofsighs

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Posted 20 January 2013 - 04:37 PM

I highly recommend the addition of homemade bone broth, live-cultured veggies and water kefir into your daily diet. I have a leaky gut and notice a significant improvement in my energy levels when i consume these things on a regular basis.

What part of Ohio are you from? I'm from the Columbus area and just found an amazing doctor.
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#9 GottaSki

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Posted 20 January 2013 - 05:04 PM

Completely agree on the bone broth and fermented foods (these only if you can tolerate) - sadly I cannot - I do make mass quantities of bone broth to use alone, in other soups and sauces.

Here is what I have found - there is a grieving process that accompanies the loss of more and more foods. Now that I am down to a very - VERY - small list of safe foods I feel much better and am able to get creative with my list of foods.

No, I don't have rose colored glasses - just battled hard for health and know it is possible.

Hang in there and keep finding the right foods for your body.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)



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