0

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I have gas reflux(not acid), EoE and a little thing you've probably never heard of before called PLE.

Commented on May 04, 2013
Created April 15, 2013 at 2:06 AM

So I guess I'm allergic to Milk, Wheat, Soy, Tomatoes, peanuts, peas, Shrimp, Tuna and corn. Along with some pollens. It seems I developed EoE from it, I don't have heartburn, at least I don't think I do. Sometimes I get a burning below my sternum but its usually pretty light. I mainly just belch all day long. Constantly belching. I eat I belch, I drink water I belch. Only time I'm not belching is when I'm laying down. My GI and Allergist don't want me to restrict my diet too much. So far I've been two weeks into a Low-Fodmap and elimination of the foods I'm allergic to. Which holy shit is hard to do. Dextrose/Maltodextrin/Soy Lecithin and Milk are in everything.

Now, you're probably going to ask if I've been tested for low stomach acid. Well the thing is, I have an extremely rare heart disease and a thing called Protein Losing Enteropathy. Basically I leak out protein. My albumin and protein levels are always half what they should be despite how much protein I eat. I'm always overweight in water, typically on the lower half of my body. Yet I am underweight in muscle/fat. I'm 5-6% bodyfat with very little muscle.

I'm also on coumadin so none of my doctors at Stanford will do any type of invasion action to check me out. I've had an Upper GI Series(twice), Hydrogen(lactulose) Breath test and now the allergy test. They will not do an EDG because of the coumadin.

Back when I was eating wheat/corn/legumes/etc all day I could eat all the time, I was never gassy, I belched occassionally. Now I can barely eat three times a day because I'm always gassy.

I want to try Betaine HCL however everytime I take pills I burp and I can taste the pill powder in my esophagus/throat. And I have a hard time swallowing pills because of my EOE. Even though according to the Upper GI I have no problems with my throat and I have no motility(esophageal or intestinal) issues. Not sure if there is a way I can open up the capsules and put it in some banana puree before I eat to help it go down or will that irritate my throat?

I noticed when I eat more fats and less carbs I have less edema(water retention) but my stomach also feels like shit when I eat more fats. Even if I limit my fats to MCT Oil and Coconut Oil only(except for the fats found in meat).

Chewing gum after meals helps with not belching but I usually spit out all the juices I get from the gum because it has mannitol and sorbitol(high fodmap). Also does anyone know if high carb would cause edema?

Also what's up with SCD and all the fructose at the beginning of the diet? I tried the intro and phase 1 but it was just way too much fructose. I have elevated liver enzymes already and my edema just went crazy trying that.

2006ccb2b60f9cc5ba5e8eff8a7abc46

(1533)

on May 04, 2013
at 01:04 PM

dr mercola article, linking lack of iodine to inability to sweat and muscle wasting. •20 percent of the iodine in your body is held in your skin (if your skin is depleted of iodine, you will not be able to sweat) •32 percent of your body’s iodine stores are in your muscles (if muscles are depleted, pain and other fibromyalgia symptoms can develop) http://articles.mercola.com/sites/articles/archive/2013/05/04/iodine-deficiency-affect-childs-brain-function.aspx?e_cid=20130504_DNL_art_1&utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20130504

2006ccb2b60f9cc5ba5e8eff8a7abc46

(1533)

on April 22, 2013
at 03:52 PM

have you ever considered iodine deficiency ? http://www.quailwoodherbal.com/Lugol.html read the symptoms towards the bottom

2006ccb2b60f9cc5ba5e8eff8a7abc46

(1533)

on April 16, 2013
at 07:44 PM

sounds like dubious advice. all of the systems in your body need to be exercise, skin, circulatory, lymphatic. oxygen is one of the most healing things you can get into your body. do you do any deep breathing exercises? sounds like you are very cold and damp and the best thing would be to heat you up. how is the body supposed to balance its electrolyes and minerals is you aren't using its best pathways?

Bac6097dbe19b79b40b1defc0d8d815b

(15)

on April 16, 2013
at 03:59 PM

You must have missed when I wrote. I'm also on coumadin so none of my doctors at Stanford will do any type of invasion action to check me out. I've had an Upper GI Series(twice), Hydrogen(lactulose) Breath test and now the allergy test. They will not do an EDG because of the coumadin. They already checked. And they don't believe I have an overgrowth. I think they're wrong anyways but I cannot afford to do the test again without insurance. So I started a lowfodmap diet+scd diet(started the intro diet yesterday). I can't tolerate the honey/grape gelatin it seems so I'm axing the fructose.

Bac6097dbe19b79b40b1defc0d8d815b

(15)

on April 16, 2013
at 03:55 PM

the 6000 ui was for vitamin D not copper. The copper I get is from the zinc supplement I take. I am unable to sweat and my cardiologists recommend for me to not do anything where I get hot. I must stay cool minus the occasional warm bath.

2006ccb2b60f9cc5ba5e8eff8a7abc46

(1533)

on April 15, 2013
at 11:07 PM

do you exercise or work up a sweat? have you tried using a sauna or steam room? skin brushing, manual lymphatic drainage or rebounding(mini-tampoline), these are all good to look into for cases of edema, sauna has helped me the most in the past, but since I don't have access to one I make sure I work up a sweat daily and use skin brushing and a rebounder.

2006ccb2b60f9cc5ba5e8eff8a7abc46

(1533)

on April 15, 2013
at 02:44 PM

why do you take so much copper? its competes with zinc and high levels tend to cause gut dis-biosis. I really think you would do best to check out ketogenic diets, and also think about taking a month to subsist on really hearty stews, such as oxtail stew, and also supplement with gelatin(great lakes brand is grassfed), seaweeds, and maybe even try more aggressive herbs for liver and kidney, Oregon grape root, burdock root, uva ursa, from bulk teas and made into heavy infusions. also consider eating egg yolks, high in choline, sulphur and lechithin, great to help digest fats, lots of aminos

96440612cf0fcf366bf5ad8f776fca84

(19413)

on April 15, 2013
at 10:22 AM

I'm not an expert on this by any stretch, but to me, it sounds like it might be, or related to, SIBO (Small Intestinal Bacterial Overload.) Might be a good idea to read up on it to see if your symptoms match and see if its treatment helps.

Bac6097dbe19b79b40b1defc0d8d815b

(15)

on April 15, 2013
at 03:23 AM

Zinc, Blood 60 - 120 ug/dL 62 Niacin 1.23 Riboflavin(Vit.B2) 10 Thiamin (Vitamin B1) 199 Vitamin B12 200 - 1000 pg/mL 861 A-Tocopherol, Vitamin E 14.3 Vitamin D, 1,25-Dihydro 40 Free Retinol(Vit A) 79.9 Those are my recent bloodwork results for vitamins/bcomplex

Bac6097dbe19b79b40b1defc0d8d815b

(15)

on April 15, 2013
at 03:22 AM

Zinc, Blood 60 - 120 ug/dL 62 Niacin 1.23 Riboflavin(Vit.B2) 10 Thiamin (Vitamin B1) 199 Vitamin B12 200 - 1000 pg/mL 861 A-Tocopherol, Vitamin E 14.3 Vitamin D, 1,25-Dihydro 40 Free Retinol(Vit A) 79.9 Those are my recent bloodwork results for vitamins/bcomplex.

Bac6097dbe19b79b40b1defc0d8d815b

(15)

on April 15, 2013
at 03:20 AM

I just had all my fat soluble vitamins,zinc and b-vitamins tested. I was high in Vitamin A and B1. Everything else seemed fine. I drink MCT oil with my morning dandelion root+chamomile tea mix. Only 1 tbps. I may bump it up to 2tbps in the morning but I don't know if that would minimize the effects of the tea. I take 40mg of Lasix for the edema but it only does so much. I started taking NAC with 2g of Vitamin C in the morning. And ALCAR+Alpha Linolic Acid with meals to help with my sperm count. I also take Zinc with copper.6000 UI vit D and selenium once a day.

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2 Answers

0
96440612cf0fcf366bf5ad8f776fca84

(19413)

on April 15, 2013
at 10:24 AM

I'm not an expert on this by any stretch, but to me, it sounds like it might be, or related to, SIBO (Small Intestinal Bacterial Overload.) Might be a good idea to read up on it to see if your symptoms match and see if its treatment helps.

Bac6097dbe19b79b40b1defc0d8d815b

(15)

on April 16, 2013
at 03:59 PM

You must have missed when I wrote. I'm also on coumadin so none of my doctors at Stanford will do any type of invasion action to check me out. I've had an Upper GI Series(twice), Hydrogen(lactulose) Breath test and now the allergy test. They will not do an EDG because of the coumadin. They already checked. And they don't believe I have an overgrowth. I think they're wrong anyways but I cannot afford to do the test again without insurance. So I started a lowfodmap diet+scd diet(started the intro diet yesterday). I can't tolerate the honey/grape gelatin it seems so I'm axing the fructose.

0
2006ccb2b60f9cc5ba5e8eff8a7abc46

on April 15, 2013
at 02:13 AM

high carb causes water retentnion but not necessarily edema, improperly functioning lemphaic and kidneys cause edema. glucose and glycogen in the body hold on to water, when you lower the amount of these in the body you will also lose water weight. other good things for digestion, liver, edema, and gas are dandelion tea, peppermint tea, cleavers herb tea, celery, sea weed.....

look into a paleo ketogenici diet.......meat, fatty meats, meat fat, offal, egg yolks, broth, bone marrow, fish and seafoods and seaweeds and greens......stay away form refined fats and oils for a while, it may take up to a year for your body to get back into balance, but I doubt it, you may find you are able to start eating coconut oils, raw dairy, when your digestive organs, including your liver and gallbladder and your adrenal glands start healing.

think about taking some supplements as well, I am going to assume your body has issues assimilating nutrients since you are underweight, start with a digestive enzyme like pancreatin(soleray brand), a good probiotic like garden of life brand primal defense, fermented cod liver oil and a multivitamin such as new chapter brand multi's. also think about taking sam-e for your liver.

it seems like a lot, but its not, its totally doable, and the supplement part is temporary while your body heals.

cut out any coffee if you are drinking it, maybe taper down with green tea, get plenty of sleep, take time off your life to RELAX, you have to do that, get your body into a healing rhythm, get some sunshine and fresh air each day

Bac6097dbe19b79b40b1defc0d8d815b

(15)

on April 15, 2013
at 03:20 AM

I just had all my fat soluble vitamins,zinc and b-vitamins tested. I was high in Vitamin A and B1. Everything else seemed fine. I drink MCT oil with my morning dandelion root+chamomile tea mix. Only 1 tbps. I may bump it up to 2tbps in the morning but I don't know if that would minimize the effects of the tea. I take 40mg of Lasix for the edema but it only does so much. I started taking NAC with 2g of Vitamin C in the morning. And ALCAR+Alpha Linolic Acid with meals to help with my sperm count. I also take Zinc with copper.6000 UI vit D and selenium once a day.

2006ccb2b60f9cc5ba5e8eff8a7abc46

(1533)

on April 15, 2013
at 02:44 PM

why do you take so much copper? its competes with zinc and high levels tend to cause gut dis-biosis. I really think you would do best to check out ketogenic diets, and also think about taking a month to subsist on really hearty stews, such as oxtail stew, and also supplement with gelatin(great lakes brand is grassfed), seaweeds, and maybe even try more aggressive herbs for liver and kidney, Oregon grape root, burdock root, uva ursa, from bulk teas and made into heavy infusions. also consider eating egg yolks, high in choline, sulphur and lechithin, great to help digest fats, lots of aminos

Bac6097dbe19b79b40b1defc0d8d815b

(15)

on April 16, 2013
at 03:55 PM

the 6000 ui was for vitamin D not copper. The copper I get is from the zinc supplement I take. I am unable to sweat and my cardiologists recommend for me to not do anything where I get hot. I must stay cool minus the occasional warm bath.

Bac6097dbe19b79b40b1defc0d8d815b

(15)

on April 15, 2013
at 03:22 AM

Zinc, Blood 60 - 120 ug/dL 62 Niacin 1.23 Riboflavin(Vit.B2) 10 Thiamin (Vitamin B1) 199 Vitamin B12 200 - 1000 pg/mL 861 A-Tocopherol, Vitamin E 14.3 Vitamin D, 1,25-Dihydro 40 Free Retinol(Vit A) 79.9 Those are my recent bloodwork results for vitamins/bcomplex.

2006ccb2b60f9cc5ba5e8eff8a7abc46

(1533)

on April 16, 2013
at 07:44 PM

sounds like dubious advice. all of the systems in your body need to be exercise, skin, circulatory, lymphatic. oxygen is one of the most healing things you can get into your body. do you do any deep breathing exercises? sounds like you are very cold and damp and the best thing would be to heat you up. how is the body supposed to balance its electrolyes and minerals is you aren't using its best pathways?

2006ccb2b60f9cc5ba5e8eff8a7abc46

(1533)

on April 15, 2013
at 11:07 PM

do you exercise or work up a sweat? have you tried using a sauna or steam room? skin brushing, manual lymphatic drainage or rebounding(mini-tampoline), these are all good to look into for cases of edema, sauna has helped me the most in the past, but since I don't have access to one I make sure I work up a sweat daily and use skin brushing and a rebounder.

2006ccb2b60f9cc5ba5e8eff8a7abc46

(1533)

on April 22, 2013
at 03:52 PM

have you ever considered iodine deficiency ? http://www.quailwoodherbal.com/Lugol.html read the symptoms towards the bottom

2006ccb2b60f9cc5ba5e8eff8a7abc46

(1533)

on May 04, 2013
at 01:04 PM

dr mercola article, linking lack of iodine to inability to sweat and muscle wasting. •20 percent of the iodine in your body is held in your skin (if your skin is depleted of iodine, you will not be able to sweat) •32 percent of your body’s iodine stores are in your muscles (if muscles are depleted, pain and other fibromyalgia symptoms can develop) http://articles.mercola.com/sites/articles/archive/2013/05/04/iodine-deficiency-affect-childs-brain-function.aspx?e_cid=20130504_DNL_art_1&utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20130504

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