No Safe Food?

[chrissygirlca]

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.

[CR5442]

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.

[UKGail]

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.

[ravenwoodglass]

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.

[AVR1962]

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.

[AVR1962]

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

[CR5442]

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.

[CR5442]

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!

[ravenwoodglass]

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.

[captaincrab55]

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...

[AVR1962]

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!

[ravenwoodglass]

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.

Open Original Shared Link

"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 "

[dilettantesteph]

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.

[CR5442]

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.

Open Original Shared Link

"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!

[chrissygirlca]

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.

[saintmaybe]

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.

Chrissy,

I've not had to do a total elimination yet, because I haven't yet developed the intolerances that many people do once they go gluten free. However, from what I understand, it might be best to go with three or four easily digestible foods that you know DON'T make you sick, alongside some supplementation.

Quinoa is one suggestion for grains, along with greek yogurt. Rice cakes. Apples. Whole foods that have little to no processing. It's boring, I know, but it's really all your stomach can handle in probably the first week to two weeks of true gluten free.

I personally also supplemented/ continue to supplement A LOT with Boost. 2-3 a day, until you start to see a leveling off/ weight gain. It has all your essential nutrients, is gluten and lactose free, and is REALLY gluten free. Ensure, btw, is not even though it says it is. I always, ALWAYS get miserably ill on Ensure.

Once you've stabilized a bit, you can start adding foods back into your diet from blandest to more exciting, adding a couple new ones every few days. If you have a reaction, it's very easy to pinpoint exactly what is making you ill. Avoid eating out unless you're extremely familiar with the menu/prep conditions. I've ordered what I thought was perfectly innocent tomato soup, only to have it show up with ghastly and unexpected croutons in it!

This whole process requires, absolutely requires the discipline of a food journal for at least a month. It's slow, laborious, time consuming, and frustrating. Everyone will tell you that. But the results, the vast improvement in health and outlook are so, SO worth the work.

[ravenwoodglass]

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.

It is possible to be sensitive to ingredients in supplements and personally I go for ones that are minimal ingredients. I never add more than one new supplement at a time as that way I will know within a week it if is giving me problems. I don't know if that might be helpful for you to do for a bit also.

If your having a lot of issues with gas do delete dairy for now if you haven't already. Make sure your veggies and fruits are cooked at first as that makes them easier to digest. Personally I have problems with lettuce so I make salads with just stuff like cukes, shredded carrots etc and leave out the lettuce. If the raw salad stuff is too tough on your system right now than just go with the cooked veggies until your feeling better.

If your still having a lot of issues be really careful about CC and maybe go with a simple diet of a meat, like chicken, rice or potatoes and a couple of well cooked veggies for a bit and see if that helps. Do make sure that your cooking area is as safe as possible.

[T.H.]

Oh hon, I feel for you! Awful to feel this bad about something that we have to have in order to live!

So, phew, okay:

1. Might want to look at fructose malabsorption. It causes a lot of gas for some, involves grains, legumes, fruits, AND veggies. And dairy, too, if I recall right. If you look up frucmal diet on a search engine, some safe foods for that may turn up.

2. Some folks I know with gall bladder issues have a huge problem with digesting oils and fats. I know that's not always the case, but gall bladder problems can be caused by nutrient deficiencies in celiac disease. Keeping to a very low fat diet seems to be what most of them did until they had it looked at and taken care of.

3. If you can garden, or have someone who could do it for you, I would do that. At least that way, when you are eating a veggie or fruit, you have a better idea that what you are reacting to is purely involving that veggie/fruit (or your gut), and not cross contamination of anything. We have started an herb garden so I can make my limited diet a lot more tasty, without spending tons of money on store bought herbs.

4. If you are trying to find the least contaminated fruits/veggies, I'd suggest going to a farmer's market and doing some interviews with the farmers. Find some produce that is not sprayed, washed with soap, gassed, or given any coatings. Wash 'em with soap and water at home before eating.

5. Many of us in your position give up grains for a while. Some people just seem to have trouble with them in the beginning, and some seem to continue to have trouble even after a while.

6. There are some natural parasite remedies I hear about periodically that you could probably look up, just in case. I believe squash seeds are a common one. The tribes around where I live have used them for quite a while to eliminate certain types of worms, supposedly. We have been buying squash and roasting the seeds - pumpkin, spaghetti, butternut, and acorn squash seeds can all be roasted and eaten, and you'll know they won't be contaminated, yea? Also give you a little fat in your diet.

7. When I was really sick, I was eating sweet potatoes (peeled, chosen carefully, because they can be waxed and gassed) for one of my high calorie foods. Had one meat as another (I picked bison at first, then went to beef. But I'm allergic to chicken, so that had an influence). Then I bought carrots with the tops still on, peeled 'em. And avocados, another of my high-fat foods. Meat with avocado, home grown chili peppers, and salt, was my meal for SO long. Gets very boring, but at least I wasn't feeling so bad!

I also tried quinoa from bolivia, which worked well for a while, but it does seem problematic for some.

Wish I had more for you, but I should add one last thing. When I stopped eating for a couple days (thought I had the stomach flu), i felt SO much better. That was a good clue for me that what I was eating WAS what was causing the problem, you know?

[chrissygirlca]

Thanks soo much everyone is there anything i can do for the cravings i have always had depression and since i was young ive binged on junk food during those times. To the point where i used to miss dinner and eat a bag of lays chips and like two chocolate bars and then to go bed. i know it sounds gross right. I still get the cravings especially when i am healing and when i get the cravings thats when i will go and eat something with sugar and i will for another two weeks. What can i do to stop the cravings? and should i be concerned about lipstick i love lipstick and toothpaste? lipgloss? gum? can i be getting cc from that?

[ravenwoodglass]

Thanks soo much everyone is there anything i can do for the cravings i have always had depression and since i was young ive binged on junk food during those times. To the point where i used to miss dinner and eat a bag of lays chips and like two chocolate bars and then to go bed. i know it sounds gross right. I still get the cravings especially when i am healing and when i get the cravings thats when i will go and eat something with sugar and i will for another two weeks. What can i do to stop the cravings? and should i be concerned about lipstick i love lipstick and toothpaste? lipgloss? gum? can i be getting cc from that?

Yes you do need to check your lipstick and gloss. Most toothpastes are gluten free but do check those also. Ask in the products section if your favorites are safe or check with the maker. People will also give you ideas of what they are using. Many of us go with totally gluten free topicals because anything that gets on your hands or skin can get to your mouth or eyes and gluten you.

For the cravings, well that is tough. The cravings can be a sign of withdrawl and the best way IMHO to handle them is to go for something that is safe for you. If you crave chocolate maybe get some dark chocolate chips if you want to go lower with sugar. Lay's plain chips are safe for most of us but what you may want to do is to put a handful in a bowl rather than eating them straight out of the bag. Another option when cravings hit hard and your feeling depressed is to get out of the house and go for a walk or do some other form of excercise until it passes. The depressive issues may resolve once you have been gluten free for a bit as celiac can have nasty impacts on our brains.

[chrissygirlca]

I think the oil in lays might even be too much for me im really sensetive but ill try it i think they make baked ones too maybe after my eliminationtest i will try it and see whathappens. I just need a lot of will power for this elimination test. What about green tea? its the only thing i get when i go anywhere should i stop. Its hard when your out on the weekend to go somewhere and not get anything then i cant go and i miss alot of birthdays and dinners. Ughhh i hate this none of my friends have it so they do not understand. No one in my family either.

[Reba32]

binging on junk foods that are high in carbohydrates will just make you crave more high carbohydrate foods. The sugar high, then sudden crash is what does it.

If you regulate your blood sugar levels though with a balanced and healthy diet, you can manage, and even eliminate, sugar cravings. Even if you don't have diabetes or pre-diabetes, you get yourself into horrible highs and crashes with the junk food bingeing, and this could lead to diabetes.

Eat whole, natural foods, and at regular intervals through the day. Eat breakfast within 30 minutes of waking, and eat small balanced meals at least 4 or 5 times per day. Have healthy fats, protein, and lower carb options at each meal. The fats and proteins digest at a slower rate than refined carbs, so you will feel fuller for longer. Steer clear of "low fat" or "lite" processed food options, they're usually full of extra added sugars just to make them palatable. Have healthy snacks between meals like sliced veggies with dip, or cheese and olives, or nuts and seeds, rather than fruits full of fructose like apples, or oranges.