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No Safe Food?


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21 replies to this topic

#1 chrissygirlca

 
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Posted 27 September 2011 - 11:57 PM

i dont know what to eat anymore i keep cutting out things i dont eat breakfast cause i cannot eat fruit eggs wheat obv dairy any form of sugar no nuts nothing oily nothing fatty! I do not sleep at all i am depressed like crazy i cry all the time. When i start feeling better i try differnt things like certain vegetables and i get gassy. I do not like to go out to much because i am scared of the embrassment that i used to have before. People talk about my skininess all the time and apparently now they are saying i am on drugs. I do not even care about that at this point i just want to feel better. My head hurts all the time my muscles were like throbing/jumping last night usually they hurt so bad when i eat any kind of sugar or anything i am sensitive to. Keep experiencing new symptoms. And the non stop D and gas i just want it to go away i do not know what to eat. I feel like everything is making me sick again i hate my life i cant do this anymore. I do not have money for a nutritionist now. I think even the natural gravy from the meat makes me sick because of the oilyness same with the oil from the salmon and the skin but ohhh i cant stand plain rice and chicken but i guess i have no choice. I feel like even that gives me gas but apparently it could be anything i don't want this anymore im tired of this i can't live like this i want my life back i hate the cravings and i hate food i stopped eating i only eat like 2 times a day now i was gaining weight finally now i look anorexic again my legs are like sticks.
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#2 CR5442

 
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Posted 28 September 2011 - 12:38 AM

Hi there, I totally feel for you. Like you, when I went gluten free some of the symptoms subsided, such as migraine and upper bowel swelling, but then a whole other raft of issues started appearing. I felt like I was reacting to everything I ate...chicken, all grains, nightshade plants, starches. It was getting ridiculous, and a lot of my symptoms were still there... D being the most obvious. Then I started to suspect that, with some tiny red egg like things in my stool, there were some unwelcome visitors in my GI tract. So I started on a protocol for parasite and bad bacteria reduction. I think we are all meant to have a few of these, but with Celiac and other GI issues often the visitors multiply to a point were they start to do damage. Start off slowly and increase, otherwise you will feel very poorly. Here is a list of what I take at the moment.
L-glutamine - 6 grams spread throughout the day - this controls reactions to food getting in to the blood stream.
V2000 vitamins by solgar 1 twice daily
Solgar magnesium citrate 1 three times daily
Solgar Calcium Citrate with D3 1 three times daily
Eridicidin by Biocare 1 three times daily
Nutrigen digestive enzymes 1 three times daily
Lifeplan digestive enzymes 2 three times daily
Bromelain by Viridian 2 three times daily
Mebendazole (Ovex over the counter) 100mg or 1x 5ml teaspoon twice daily.
Paracleanse by Inna Health (not sure of quality) 2caps three times daily.
Probiotic - bio-kult 1 at night before bed.

The ones that are twice daily I make sure I take 12 hours apart when waking and before dinner. Take the Anthelmintics (wormers) on an empty stomach, though it can aid absorption through the gut if you take mebendazole with something fatty. One thing I find that really boosts these is taking raw crushed garlic on every meal you eat. Takes a bit of getting used to but they HATE it! The digestive enzymes are also very important as they will digest everything in your gut... even worms! Perhaps start with the raw garlic then add things in. I don't know if you are from the states but perhaps look at Humaworm. They say to be on these courses only a few weeks or so but frankly I think if you have a really bad case of dysbiosis you need to stay on a course for 2-3 months. Don't stop when you feel better, keep going for at least a month afterwards. L-Glutamine for me has been a lifesaver - it has stoppped me reacting to foods - which was my main reason for not wanting to eat too! Also food wise, stay away from dairy, grains and starches. Some alkaline fruits like pineapple, raisins, figs, dates, lemons are really good as they create an undesirable environment for visitors. You will need to eat proteins to help, so well prepared beans with only oil/cider vinegar/salt pepper, meat (stick to lamb, duck and free range corn fed chicken) stay away from sugars too. It took me a while to get in to this diet but I am SOOOO glad that I did. I feel better than I have done in years! You may find you get bunged up a bit on these, but take a desert spoon of aloe vera juice in the day time if this happens - adjust to requirement. You do not want to get bunged up as the toxins from the critters will end up in your bloodstream - making you itch!
Hope that all this helps. If you can't find particular supplements let me know and I'll let you know quantities in each so you can find substitutes.
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#3 UKGail

 
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Posted 28 September 2011 - 01:04 AM

i dont know what to eat anymore i keep cutting out things i dont eat breakfast cause i cannot eat fruit eggs wheat obv dairy any form of sugar no nuts nothing oily nothing fatty! I do not sleep at all i am depressed like crazy i cry all the time. When i start feeling better i try differnt things like certain vegetables and i get gassy. I do not like to go out to much because i am scared of the embrassment that i used to have before. People talk about my skininess all the time and apparently now they are saying i am on drugs. I do not even care about that at this point i just want to feel better. My head hurts all the time my muscles were like throbing/jumping last night usually they hurt so bad when i eat any kind of sugar or anything i am sensitive to. Keep experiencing new symptoms. And the non stop D and gas i just want it to go away i do not know what to eat. I feel like everything is making me sick again i hate my life i cant do this anymore. I do not have money for a nutritionist now. I think even the natural gravy from the meat makes me sick because of the oilyness same with the oil from the salmon and the skin but ohhh i cant stand plain rice and chicken but i guess i have no choice. I feel like even that gives me gas but apparently it could be anything i don't want this anymore im tired of this i can't live like this i want my life back i hate the cravings and i hate food i stopped eating i only eat like 2 times a day now i was gaining weight finally now i look anorexic again my legs are like sticks.



Dear Chrissy

You know I logged on thinking of asking pretty much the same question as you. I too am having trouble eating anything, and am fed up with eating the same small number of foods all the time, and still feeling tired and nauseous and no appetite. However I am managing just about to keep the D at bay most of the time. I have only been gluten free for 4 or 5 weeks. I lost weight hand over fist for the first 2 or 3 weeks, then it stabilised as I started to be able to eat more, then last week I think I got glutened and it all kicked off again, so now I am back not being able to eat etc etc.

Anyway what works for me while while things are bad is to avoid anything fatty or oily, including salmon when things are really bad, and to rely on a few very plain and simple foods. I have been making a lot of soups (I call them soup but it is really just boiled veggies pureed up in their water), maybe with a boiled chicken breast chopped small thrown in at the end (don't puree the chicken breast as it is yukkie). The advantage of soup is that it is good nutrition which is also easier for a damaged digestive system to process. I also boil quinoa with chopped chicken breast, diced sweet potato or swede or something to get some sweetness, and peas up in one pot for a filling meal. Breakfast is more problematic as the options are more limited. So it is either more soup, or a gluten free porridge made with water (where I live there is one based on rice and buckwheat flakes) or gluten free rice crispies (chex?).

Anyway all that is a diet which is only suitable for a short term problem, and cannot sustain anyone for more than a few weeks at most. You have obviously been struggling with this problem for much longer than I have, and it if isn't settling down despite your best efforts to avoid gluten and other trigger foods, I really think you should go and see your doctor as soon as possible. Forget the nutritionist, as I see this is a medical problem and not one where diet advice can help. There are other medical conditions which have similar symptoms to celiac disease, and having celiac doesn't rule out you maybe having both. There are also instances of celiac disease not responding to a gluten free diet. Either way, you may need further medical advice and possibly treatment. There are other members here who will also mention cross contamination issues which can cause continued problems and this is also perhaps something to think about, but please do see your doctor as well.
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#4 ravenwoodglass

 
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Posted 28 September 2011 - 02:33 AM

Have you been gluten free since last December? If you have been have you been back to the doctor? You could have more going on than just Celiac. You should see the doctor ASAP. If money is a concern and you don't have insurance call your local hospital and see if they have a sliding fee scale or see if you qualify for any of the low or no cost insurance that is out there. Your local social service office can fill you in on what is available. I would not take anything for intestinal worms without knowing if you actually have them as that can be very dangerous.
  • 1
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 AVR1962

 
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Posted 28 September 2011 - 02:44 AM

It can be very frustrating and sometimes I look in the cupboard and think the same thing. Look at your options as far as foods you can eat. If your stoamch is a mess still look up a low acidic diet, is helping me immensely. The muscle issues are probably due to a lack of magnesium in your diet and if you cannot get that thru your foods I would suggest supplementing. Load your diet, if you can, with as much greens and vegetables as you can, you are probably low on a other nutrients needed in your diet. B12 is another common deficency among celiacs. If you are having D issues and are gluten-free, dairy free I would say something else is getting you, perhaps soy. I cannot have high fructose, effects me like gluten. best to go with a raw foods diet and try to get your body on track. Sleep issues can mean there is a lack of nutrients which leads me back to your vitamin B and magnesium levels. There is magnesium in grains and once we take that out of our diet we have to replace it somehow, same with your calcium. There is a huge balance there that has to be created for your body to operate correctly.
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#6 AVR1962

 
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Posted 28 September 2011 - 02:47 AM

Caroline, can you tell me what you use the V2000 for? Is that a multi vit?
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#7 CR5442

 
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Posted 28 September 2011 - 02:50 AM

Have you been gluten free since last December? If you have been have you been back to the doctor? You could have more going on than just Celiac. You should see the doctor ASAP. If money is a concern and you don't have insurance call your local hospital and see if they have a sliding fee scale or see if you qualify for any of the low or no cost insurance that is out there. Your local social service office can fill you in on what is available. I would not take anything for intestinal worms without knowing if you actually have them as that can be very dangerous.

I kind of agree here, except I certainly do have parasites as I can see the eggs and some other worm like bodies, and my test from the NHS just came back negative because the labs only test for 20% of what actually exists! So I was forced to take my healing in to my own hands... I would be 90 before the NHS did all the tests required for my condition as they do them one at a time with a good 4 or so weeks inbetween! Honestly this is the healthiest I have been for ages. Sleep is better, body pain/aches are better, alertness etc. etc. Herbal anthelmintics are much safer than then drug variants. But again it is better to start off slowly, try one or two individual herbs and build on that, and rotate them. Parasite infection is very very common, much more than we realise. If we worm our dogs and cats every six months, or more frequently, what's to say that we shouldn't do it for ourselves? There are a few people on here who have been through testing, treatment, herbal courses and have improved massively. Do a search. I also wonder what makes us all believe that we don't carry parasites - when a lot of them float in on the air, are in our water supplies - particularly if you have been to developing countries.
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#8 CR5442

 
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Posted 28 September 2011 - 02:53 AM

Caroline, can you tell me what you use the V2000 for? Is that a multi vit?

Of course! Yes, the V2000 is a multivitamin and has some complimentary herbs in it. If you look up Solgar the sites it is stocked on give a breakdown. I take, in my opinion, a ridiculous amount of supplements but they are definitely working for me! It is not food based though... they are much more expensive and my budget just doesn't stretch!
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#9 ravenwoodglass

 
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Posted 28 September 2011 - 03:26 AM

I kind of agree here, except I certainly do have parasites as I can see the eggs and some other worm like bodies, and my test from the NHS just came back negative because the labs only test for 20% of what actually exists! So I was forced to take my healing in to my own hands... I would be 90 before the NHS did all the tests required for my condition as they do them one at a time with a good 4 or so weeks inbetween! Honestly this is the healthiest I have been for ages. Sleep is better, body pain/aches are better, alertness etc. etc. Herbal anthelmintics are much safer than then drug variants. But again it is better to start off slowly, try one or two individual herbs and build on that, and rotate them. Parasite infection is very very common, much more than we realise. If we worm our dogs and cats every six months, or more frequently, what's to say that we shouldn't do it for ourselves? There are a few people on here who have been through testing, treatment, herbal courses and have improved massively. Do a search. I also wonder what makes us all believe that we don't carry parasites - when a lot of them float in on the air, are in our water supplies - particularly if you have been to developing countries.


Glad it is helping you but I do have to disagree that everyone has worms. Animals have worms because they eat other animals, have fleas (which carry some parasites) eat feces, lick their paws after being outside etc. I have pets and none of them have any worms of any kind but they are indoor pets and my dog is checked for them on his regular visits. When checking for parasites it is usually necessary to do at least 3 stool samples to be sure. If this is working for you that is great but it is not the solution for all and even herbal items can be dangerous for someone with a compromised digestive system and should be used IMHO only when it is confirmed that parasites are present. Just plain garlic is also effective on parasites and if a person tolerates garlic that would be what I would go with first.
  • 1
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#10 captaincrab55

 
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Posted 28 September 2011 - 03:42 AM

chrissygirlca, Were you ever checked for H PYLORI ??? A year ago I was in a bad way thinking that all foods were bad for me... I waited till the end of October to contact My GI, but couldn't get an appointment til early January... I went through food allergy testing before agreeing to having both scopes done.. Five days later after the scopes, I was diagnosed with H PYLORI.. Now I can eat most Gluten Free foods.. Onions and dairy both cause some gut/colon pain.. Just recently I learned that quite a few meds contain dairy.. For quite a while I thought a few of my meds may contained Gluten, but it appearss it may just be some hidden dairy..

IMHO, Get to your Doctor ASAP...
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I'm a New Man Without GLUTEN!

#11 AVR1962

 
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Posted 28 September 2011 - 05:19 AM

Of course! Yes, the V2000 is a multivitamin and has some complimentary herbs in it. If you look up Solgar the sites it is stocked on give a breakdown. I take, in my opinion, a ridiculous amount of supplements but they are definitely working for me! It is not food based though... they are much more expensive and my budget just doesn't stretch!

Not a rediculous amount. I thought my doc was going to croack at my last appt when he saw what I was taking but he approved it, said it looked good and to keep doing it. I take less calcium, an iron supplement, potassium, and vit E & C, also B vits but other than that our supplementing looks very similiar. Right now I am trying to put healthier vitamin rich foods into my diet in hopes of being able to cut back on the supplements. Thanks for the reply!
  • 0
Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#12 ravenwoodglass

 
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Posted 28 September 2011 - 05:19 AM

Caroline, can you tell me what you use the V2000 for? Is that a multi vit?


They appear to be a good vitamin but if you are sensitive to oats or soy they may not be for you as they contain both.

http://www.iherb.com...lets/11863?at=0

"Whole Food/Herbal Blend
(Alfalfa [whole-plant], Orange Peel Powder, Dong Quai [root], Eleuthero [root], Oat Fiber, Suma [root], Watercress [whole plant], Echinacea Purpurea [root], Parsley [aerial], Spirulina) 260 mg **
VM-2000 Soy Protein/Amino Acid Blend "
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#13 dilettantesteph

 
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Posted 28 September 2011 - 05:33 AM

Watch out for the oat fiber in that supplement. Some celiacs are sensitive to oats!!

I feel for you. I have felt like nothing is safe to eat too.
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#14 CR5442

 
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Posted 28 September 2011 - 05:58 AM

They appear to be a good vitamin but if you are sensitive to oats or soy they may not be for you as they contain both.

http://www.iherb.com...lets/11863?at=0

"Whole Food/Herbal Blend
(Alfalfa [whole-plant], Orange Peel Powder, Dong Quai [root], Eleuthero [root], Oat Fiber, Suma [root], Watercress [whole plant], Echinacea Purpurea [root], Parsley [aerial], Spirulina) 260 mg **
VM-2000 Soy Protein/Amino Acid Blend "


I agree re the oats - I nearly flipped at my nutritionist but after speaking to the nutritionist by email at Solgar the oats are refined to just the fibre part, and I haven't had a problem with them. Some people may well do though so worth going with something you are 100% sure about, as well as the Soy. I was also worried about some of the herbs but they really didn't do anything apart from the whole supplement made me feel more energetic. The L-glutamine in my diet allows me to eat things like eggs, potato, rice milk that I was reacting to before. L-glutamine helps the cellular reconstruction of the gut wall - it forms a sort of barrier on a cellular level to prevent particles that are too big getting through. I know when I haven't taken it!
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#15 chrissygirlca

 
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Posted 29 September 2011 - 02:27 PM

if i am really sensitive are all those supplements gonna make it harder to find out what is making me sick. I know some have like citric acid and all differnt types of acid and other ingredents. I heard that rice can give gas is this true? and potatoes is this true? what should i be eating salad? hat are the vegetables with the least gas/fructose i think even cucumbers make me gassy i might have ibs or maybe its cross contaminaiton i just want to stick to a couple foods all day but im not sure what. If i keep taking out foods im gonna be left with nothing.
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