Im Still Sick And Very Scared..

[amethystium-sky]

Well here is the story so far…

I will be 23 on the 28th and its been about 6 months since I was diagnosed ( April 3 06 ) and have went completely gluten free. I’m mainly a vegetarian usually eating veggies, fruit, rice and rice based gluten-free noodle and cereal products. I stopped drinking milk and switched to soy since I have heard that milk can be a promoter for symptoms, I would get a stomach ache on occasion if I drank milk. I do eat a lot of cheese and yogurt though for the calories, include nuts and eggs in my diet for protein as well. Healthy fats like olive oil and coconut oil for cooking and becoming some what of a natural food freak post diagnosis.

I thought I was taking good measures to get healthier and to get over my symptoms, which were constant nausea, constipation, headaches and vertigo to the point that I cant do anything but sleep 18 hours a day to try and ease the stress it puts on my body and mind, sever weight loss. I have always been a really small person 5’4 and was 115 pre becoming sick and now I’m only 85 lbs!!! my lowest point pre diagnoses was 78 lbs.. This is so ridiculous…I cant work.. much less have a life do to the weight loss and being so frail and fatigued…I am so tired of the whole anorexic bit from everyone.. I know I shouldn’t care what others think.. but it dosnt help at all when I’m not trying to do this to myself and people just do not understand that I have an actual medical condition and not a mental one.

For a while.. maybe about 2 months after going gluten-free I started to see some slight impromement.. wasn’t nauseas as much after eating.. I was actualy hungry and was putting a little more weight, was up to 92 lbs.. which was the most I weighted in 4 years dealing with this. Had more energy and actualy felt like leaving the house and being productive for a change!!.. It was nice and I had some actual hope I was finaly getting over this.

I don’t have insurance and just go to a free care clinic that has set me up with a GI and an allergy specialest.. Both are a waste of my time and offer little to no help..I have also seen a dietision and all she could offer was minimal information on meal plans that I already was aware of or found off this site.

This last week I have had the worst episodes of vertigo and fatiuge yet experienced since going gluten-free....feeling just like before I was diagnosed., always nauseas and lost 7 lbs in a week despite eating 4 small meals and snacks a day.. I try and space out my meals so I’m always eating something and trying to desperately gain some weight back… I started adding more gluten-free snacks with lots of calories cookies, muffins, bagels and chocolate.. I read all labels and haven’t bought anything new that I haven’t been eating for the last 6 months.. I have thought of everything that could be the case for me feeling so sick again.. I’m so scared about my weight.. I know worrying about it is only making it worse. I know I have the love and support of my boyfriend , family and friends but.. I just really don’t know what to do anymore.. What am I doing wrong??…I’m so scared and sad of what this horrid disease has done to me and my life!… I’m young an should be doing the things I have always wanted to do.. not be stuck sick in bed not knowing if this is how I’m going to be forever!!…but this "thing" is making me feel twice my age.. I know you guys are the only ones that truly understand the pains that going through this is like.

I have just about given up on going to my doctors..I wanted to have a full panel allergy test done and set up to maybe see a nuro doctor for the vertigo an my doctor never called me with an appointment date and that was over a month ago.. I called and just got the nurse and left a message.. still no call.. Its always a run a round and very ….very frustrating.

Dose anyone feel this way??.. Is there anything I can do to gain more weight??.. Perhaps the vertigo is in connection with the weight loss?. I just don’t understand how this has got so out of hand again…

I just need someone to give me a little insight because I cant trust a doctor to even do that for me anymore..

thanks to all that answer, your support means a lot right now.

-Kerissa

[gfp]

WOW .....

Well welcome to somewhere we do understand!

I have a few comments and a few speculations ... Im going to cast them all into the air together but that doesn't mean one or any of them is you, I just want you to look and read and then think

OK.... first off.. Soy is a problem for many. I personally am fine but I keep it in moderation because my mom was sensitive and actually being poisioned by some of her meds containing soy. I figure the last thing I need is to develop another intolerance so I moderate my soy intake...

Secondly... and Im sorry, lots of people are going to disagree with me but your a chronically underweight vegetarian. I honestly think you are going to have to make a choice between your health and morals.

I'm not saying vegetarianism is BAD per-se.... what I'm saying is eating a healthy balanced diet AND being a vegetarain AND celaic is damned hard!

If you want I can explain why.... but largely the balance of nutrients is hard to get* unless you are eating wheat and soy and these are the very foods causing problems.

(*Its not impossible but it does involve a very detailed knowledge of nutrition and a LOT of work... some people just manage better than others as vegetarians and their bodies get sufficient nutrients and others don't. )

The thing is in your case being really underweight is causing you problems and its time to consider why you have no energy and why you are loosing weight...

I know I shouldn’t care what others think.. but it dosnt help at all when I’m not trying to do this to myself and people just do not understand that I have an actual medical condition and not a mental one.

Please be entirely honest and say if you have ever had an eating disorder ... I'm not being accusative here but people need to know to give you the best advice so its best to get that out of the way.... I don't think you are ... but I need to ask ....

Now onto the real meat (excuse the pun)

You really need to check and recheck your gluten free diet.

Most of us started off thinking we were gluten free and missing things.

The most important two things you can discover here are cross contamination and hidden gluten.

I encourage you to please read and do searches on this site.....on these two issues.

Briefly: CC (cross contamination) means getting the slightest crumb... or stirring with the same spoon.. or using the same dishcloth ....

THIS SEEMS EXTREME AND PARANOID ...... honestly its not! You can read all the experiences here.... you will see so many people who say this because we all went through it....

The bottom line is if you share a kitchen with non celiacs you are more than likely getting contaminated.... if you kiss your BF after he eats gluten... you are getting contaminated.

Hidden gluten: WOW... they use the stuff everywhere..including lipsticks and cosmetics.

A recent study shows the "average" celiac takes 6-8 weeks to recover from a minor incident with gluten.

Yes... 6-8 weeks...what this means in practice is if you get a single crumb or piece transferred in dishwasher or from a pan used to cook gluten you will be ill for 6-8 weeks in varying degrees.

If you have been getting this since diagnosis then you are literally taking 3 steps forwards and 2 back but in your case it seems 3 forwards and 3 back.

I hope some of this makes sense and I hope you can find something that you hadn't thought of BECUASE if you do then you have your answer. MD's almost never warn people about the CC or hidden gluten because they simply never thought about it.... but the smallest piece of gluten you can see is more than enough to make you sick!

Have a think and see if any of this applies to you.... try and answer each question because a NO is aas valuable as a YES sometimes...(and lets get the food issues out of the way .. not because I think you have one but because we need to get that out of the picture or not)

We are all here to help you....

[Guest nini]

I agree with a lot of what GFP said (most actually)

I just want to toss out there that there still may be another underlying autoimmune disorder that needs to be addressed and you need to push the free clinic Dr.s to really try to find out if there is something else going on. Most of this can easily be determined by some simple blood tests where they can look for nutritional deficiencies or a hyperactive thyroid or something else.

I would however tend to agree that GFP's thoughts about soy and a vegetarian diet is very true. I was a vegetarian for a while and while I wasn't underweight, I was severely malnourished. I thought if I ate "healthy" that I was doing ok. But my Dr.s told my husband to "go buy her a steak and make her eat it"... Not telling you to give up vegetarianism, but to consider if this is why you are still having issues. I DID find some TVP yesterday that was labeled gluten-free. I think it was either Bob's Red Mill or Arrowhead Mills. Either way it was labeled gluten-free. But if soy is also a problem for you, you might have to consider another way to get your protein.

Also, what he said about hidden glutens and cross contamination is VERY important. I just recently found out that a bath gel I was using had gluten in it in the form of vitamin e oil from wheat germ. It didn't say wheat germ on the bottle, just vitamin e, but when I called the company they said that the vitamin e was from wheat germ. Lipsticks and other makeups, even shampoos and conditioners are possible sources of hiden glutens.

All that being said, It still took me two years to feel a lot better on the gluten-free diet. But I was also 34 by the time I was dx'ed. You've got some possibilities to explore, good luck to you and let us know what happens.

Try keeping a food journal to see if you see any patterns in the way you feel. Go back through ALL your personal care products. Consider that other food intolerances may be at play here like corn, soy, rice, lectins, or potentially anything else. Consider the posibility of another additional underlying issue (don't be scared, be proactive), And keep coming to this forum to ask any questions or for sympathy or guidance. If anyone can understand what you are going through, it's us!

[marciab]

Welcome to the board.

I wanted to add to what the others had said about eating meat. A vegetarian diet just doesn't work for some people. I felt very sickly on it.

If you are looking for healthy meats try eating buffalo, wild fish like salmon, free range chicken and Maverik Ranch pork and beef.

Also take a look at your diet and make sure that you are getting plenty of calories. I made that mistake in the beginning.

Marcia

[gfp]

I would however tend to agree that GFP's thoughts about soy and a vegetarian diet is very true. I was a vegetarian for a while and while I wasn't underweight, I was severely malnourished. I thought if I ate "healthy" that I was doing ok. But my Dr.s told my husband to "go buy her a steak and make her eat it"... Not telling you to give up vegetarianism, but to consider if this is why you are still having issues. I DID find some TVP yesterday that was labeled gluten-free. I think it was either Bob's Red Mill or Arrowhead Mills. Either way it was labeled gluten-free. But if soy is also a problem for you, you might have to consider another way to get your protein.

My issue with soy is its another closely linked allergen ....my mother who was much older than myself when diagnosed had problems from day 1.... I have never experienced any to my knowledge but I just think adding something that affects many coelaics into my diet as a subsitute is generally asking for trouble....

My girlfriend bought me some gluten-free mixed flour for instance with soy in.... I used it but I use it very occasisionally...I know many coelaics do have problems so I think its something if I push it I might also have problems...

Sorry this just bears repeating so many times.....

Also, what he said about hidden glutens and cross contamination is VERY important.

and I'm not anti-vegetarian...I just think some people are less suited than others and the work required to actually balance a vegetarian diet is hard enough already but add soy and grains to the equation and its even harder. I'm not saying its impossible, its not but many newly diagnosed peple find being gluten-free hard enough at first without adding complications....

[Rikki Tikki]

WOW .....

Well welcome to somewhere we do understand!

I have a few comments and a few speculations ... Im going to cast them all into the air together but that doesn't mean one or any of them is you, I just want you to look and read and then think

OK.... first off.. Soy is a problem for many. I personally am fine but I keep it in moderation because my mom was sensitive and actually being poisioned by some of her meds containing soy. I figure the last thing I need is to develop another intolerance so I moderate my soy intake...

Secondly... and Im sorry, lots of people are going to disagree with me but your a chronically underweight vegetarian. I honestly think you are going to have to make a choice between your health and morals.

I'm not saying vegetarianism is BAD per-se.... what I'm saying is eating a healthy balanced diet AND being a vegetarain AND celaic is damned hard!

If you want I can explain why.... but largely the balance of nutrients is hard to get* unless you are eating wheat and soy and these are the very foods causing problems.

(*Its not impossible but it does involve a very detailed knowledge of nutrition and a LOT of work... some people just manage better than others as vegetarians and their bodies get sufficient nutrients and others don't. )

The thing is in your case being really underweight is causing you problems and its time to consider why you have no energy and why you are loosing weight...

Please be entirely honest and say if you have ever had an eating disorder ... I'm not being accusative here but people need to know to give you the best advice so its best to get that out of the way.... I don't think you are ... but I need to ask ....

Now onto the real meat (excuse the pun)

You really need to check and recheck your gluten free diet.

Most of us started off thinking we were gluten free and missing things.

The most important two things you can discover here are cross contamination and hidden gluten.

I encourage you to please read and do searches on this site.....on these two issues.

Briefly: CC (cross contamination) means getting the slightest crumb... or stirring with the same spoon.. or using the same dishcloth ....

THIS SEEMS EXTREME AND PARANOID ...... honestly its not! You can read all the experiences here.... you will see so many people who say this because we all went through it....

The bottom line is if you share a kitchen with non celiacs you are more than likely getting contaminated.... if you kiss your BF after he eats gluten... you are getting contaminated.

Hidden gluten: WOW... they use the stuff everywhere..including lipsticks and cosmetics.

A recent study shows the "average" celiac takes 6-8 weeks to recover from a minor incident with gluten.

Yes... 6-8 weeks...what this means in practice is if you get a single crumb or piece transferred in dishwasher or from a pan used to cook gluten you will be ill for 6-8 weeks in varying degrees.

If you have been getting this since diagnosis then you are literally taking 3 steps forwards and 2 back but in your case it seems 3 forwards and 3 back.

I hope some of this makes sense and I hope you can find something that you hadn't thought of BECUASE if you do then you have your answer. MD's almost never warn people about the CC or hidden gluten because they simply never thought about it.... but the smallest piece of gluten you can see is more than enough to make you sick!

Have a think and see if any of this applies to you.... try and answer each question because a NO is aas valuable as a YES sometimes...(and lets get the food issues out of the way .. not because I think you have one but because we need to get that out of the picture or not)

We are all here to help you....

I actually agree with what you wrote. (kind of shocked me! ) I would push the doctor to sent you to a neurologist to check into the vertigo. It appears that the doctor found one thing and has stopped looking, not a good idea. I would also add that you need to eat more calories. Be good to yourself and help your body heal. Welcome.

[aikiducky]

The previous posts already covered most of it I think, so just one more question - have your vit. B12 levels been checked? Many celiacs are deficient, and I know vegetarians have to keep an eye on it, and considering you're both...

Pauliina

[happygirl]

Kerissa,

I'm so sorry to hear of your struggle. You poor thing. Hopefully some of the information on here will help you.

Through some testing, but mostly an elimination diet, I discovered that all of my recent problems (had been gluten-free for 1.5 years before "new" problems started) are related to food. I cannot tolerate dairy, soy, eggs, and corn products. I am still dealing with weight loss (about 10 lbs, so not nearly as severe as yours). I would strongly suggest an elimination diet. I know there isn't much left to eliminate .... and I never thought that it could be more food related than gluten...but go figure.

Whatever the answer is, I certainly hope that you find it. Let me know if there is anything I can do to help.

Take care and keep us updated.

xoxo,

Laura

[jerseyangel]

Hi

Lots of good advice so far--

Before I was diagnosed, I was sick for many years. During that time, I tried various things on my own to try and feel better. For several years, I was a semi-vegetarian (my term). I ate a lot of beans, rice, salads, veggies, fruits, cheese, yogurt, etc. Chicken maybe once a week--that was the only meat I ate--never red meats.

I thought that this was a healthy way to eat--and for some people, it might be. But as I went gluten-free, and my other food intolerances were uncovered, I find that I can't tolerate most plant proteins--I need to eat meat!

It's a difficult thing, I know what it's like to change basicly everything about one's diet! The fact is that it is entirely possible to be sensitive to plant proteins--legumes, coconut, corn--and dairy foods. I'm not saying that this is the case for you, but it might be worth looking into.

Since I began eating meat and cutting out the soy, legumes, corn, dairy and coconut I feel so much better. This, in addition to being gluten-free has also completely eliminated my chronic anemia.

I'm not for or against any diet--just offering my 2 cents!

[NicoleAJ]

I agree with LauraJ that you should try to do elimination diets, one at a time. Your doctors may not be responding to your need for help, but this is something that you can do without their help. Is there anyone who can help you with trying to get a hold of the doctors? Sometimes when you're so sick it's difficult to handle all of your medical appointments yourself. I was really sick for three months before getting a diagnosis on Monday, and I was so tired of keeping track of all of my appointment and calling all of my doctors that I'd sometimes ask my boyfriend to help me out, and between the two of us, we managed to get through it all without forgetting about something or not hearing back from one of the doctors, etc.

[lovegrov]

Check vitamin levels if you can, or start taking a B complex at least.

Try taking probiotics. You could also have bacterial overgrowth.

Seriously consider at least some meat for the protein and to add weight. When I was diagnosed, I was so weak and was losing weight so fast that my doctor ORDERED me to eat meat at every meal (I wasn't vegetarian). I would agree that you're so underweight now it could be causing some of your problems. I helped a woman who was a vegetarian when she was diagnosed but decided she needed at least a little meat. She started out by trying some chicken and was OK with that. I think she also ate some fish and seafood but never did go to beef.

richard

[CarlaB]

A few years ago I was primarily vegetarian (except for holidays and friend's houses). I found I needed meat to be healthy.

Now, my doc has me eating protein (meat, fish or eggs) every meal and snack. I can have one snack per day with nuts instead of meat.

I would highly recommend a book to you called Tired of Being Tired by Jesse Lynn Hanley, MD. Her program has finally turned my health around. It's a nice complement to our gluten-free lifestyle. I just wasn't getting any better, got dizzy, nauseous, fatigued to the point of not being able to get out of bed, lack of appetite, etc. All this is finally improving for me. I think you will like Dr. Hanley, she used to be a vegetarian, too.

[kbtoyssni]

I'm sorry you're still not doing well. I don't have a whole lot to add that other people haven't already talked about, but I figured I'd post anyway.

I was also vegetarian before I was diagnosed. I was feeling better but not 100% after a few months gluten-free, but then I started to lose a lot of weight. Some people on this board said that they feel better when they eat meat. So I started to eat a bit and now my weight is pretty stable. A few weeks ago I ran out of turkey and I started feeling tired again and losing weight. So I think I will continue to eat meat since I think it does make me feel better. The other thing I notice is that I feel a different kind of full when eating meat. It's like I'ave actually eaten something. When I eat other things I don't necessarily feel "full" - more like my stomach doesn't want to digest anything else so I stop eating. It was a weird feeling the first time - I think the celiac has made me very out of touch with my hunger signals and for the first time in years I could honestly say that was what full felt like. I think it's also harder for your body to digest veggies.

I was vegetarian for moral reasons. I now buy free-range, hormone free meat. I still struggle with whether I should eat meat when I go out to restaurants. I know it's not going to be free range, etc, but restaurants are the one time where it's nice to be able to eat meat since I get bored eating salad all the time.

I also figured out I have a peanut intolerance which was another reason I wasn't feeling 100%. You may also have other intolerances. I agree with everyone on the soy - that's a common intolerance. And the cheese. Would you consider eating a very, very basic diet for a few weeks and then adding in one food at a time?

I think you should look for an additional problem. It's got to be hard to do that when you don't have insurance, but maybe you could get a panel of blood tests done to check for hormone and vitamin levels as a starting point to go on.

Things I like to eat to keep my weight up that are stomach friendly: apple sauce, sherbet, gatorade, rice, dove chocolates.

Keep reading here and you'll find lots of potential gluten-contaminants in your house. Did you throw out old chapsticks? It took me a while to realize that they could have gotten gluten in them back when I used to eat it. What about pets - most pet food has gluten. Do you live with anyone who could accidently be contaminating things?

Good luck and I hope you start feeling better soon.

[RiceGuy]

I agree with much of what has been said thus far, if not all. I am basically vegetarian, and though it doesn't seem to work for many, I do feel better for it from what I can tell. That's not to say you can too though, as others have indicated. You already mentioned that you eat nuts and eggs for protein, and that's good. A quarter-cup of almonds actually has more protein than an egg. Still, there's always other nutrients to consider besides protein, and one or more deficiencies may be attributing to how you feel right now.

Various nutrients have a way if interacting. For instance, vitamin C helps the absorption of iron, so it's very important to get your vitamin C when you eat vegetables for iron. Almonds have a substance called oxalates, which may lower the absorption of calcium. So if you eat something for the calcium, it might be a good idea to avoid almonds for a few hours before and after that. As gfp stated, it can take quite a bit of research and knowledge to get the optimal balance, and we all have different needs, especially while healing. I can't say with any certainty that it means you need to be eating meat. I'm apparently in the minority on that one. Like I said, for me it works - at least it did up to the last time I tried meat. Generally, the suggestion by the experts is that a well-varied diet should give you a good balance of nutrients. Trouble is, when the gut doesn't absorb those nutrients, we suffer for it. So simply having a proper intake doesn't necessarily mean you will get the benefits of those nutrients. It can easily be that we must have amounts of certain nutrients which exceed normal recommendations, and I suppose decrease others below the norm in some cases.

It took me six months before I noticed anything from being totally gluten-free. Then, things started to go quite well by comparison, which lasted maybe another six to eight months. After that something wasn't right though, and I slowly lost some ground, though not much. Then suddenly things took a huge nosedive. Tons of muscle/joint pain, loss of balance, etc, not to mention the increased intestinal difficulties. After much struggling I found that nightshades where a really major culprit, if not the entire cause. That means I now must avoid potatoes, tomatoes, peppers, eggplants, and a few other things. A lot of prepackaged gluten-free products use potato starch/flour, so I'd be in trouble eating them. The point is, this didn't show up for months. I also found that casein was giving me problems, so I had to drop the soy cheeses/spreads I was eating since they have casein (the dominant milk protein).

Anyway, as many on this board have found, you will likely need to adjust your diet as your body changes. I can no longer expect to eat the same diet for too long before making some modifications. Some people find they can eventually add a bit of certain things as the gut heals. I guess I'm still on the other side of that though - having to cut more stuff instead. We all have our own particular set of symptoms to work with, and it also depends on how long the damage had been happening before we caught it. Unfortunately for me this seems to have been from very early childhood, so I may be in for a long rough road.

Hopefully your healing process will show signs of progress soon. Just don't despair too much. While it's good to be cautious, feeling desparate about it has a negative impact as you already indicated. Maybe it can help to think of it this way: Your body is telling you that something still isn't right. At least your insides aren't being silently destroying without warning. This is your opportunity to locate the culprit(s), whether it be a deficiency or an excess, or even something as little as shampoo or a cosmetic. I also had to switch shampoo.

I do hope you find the answers you need soon.

[amethystium-sky]

Wow thank you to all who responded .. I wasn’t expecting so many to actually care.

Firstly GFP.. I am not anorexic nor have I even had an eating disorder.. I love myself way to much to do undue harm like that. What I meant I was a small person in bone structure, my body’s just not capable of holding a lot of weight on.. I have never been much over 90-100 lbs despite eating a good diet. 115 was the most I had ever been and I loved it cuz I actually had a figure and looked like a girl and not a walking stick.. lol

All the women in my family are really tiny people. So I just have to deal with that aspect.. but being this thin isn’t healthy and I feel really uncomfortable..

I have thought about stopping the all veggie diet a lot lately and I think ill give it a try real soon. I live with a vegen boyfriend.. I don’t have a problem with eating some chicken and fish now and then but just haven’t recently do to not wanting food to get wasted by me being the only one eating it. I do eat quite a few eggs though, about one every meal to help with some protein.

as for the blood tests on vitamin levels there all fine and im right where I should be.. so the doc says.

The other allergy tests would be the key to finding if I had more problems with rice and soy.. I don’t eat much corn but I want that tested also. Its hard to do so when I have a doctor that’s not cooperating with me on this you know?

I know what you mean nini about the CC I check and re check everything.. I don’t buy anything new unless I know its safe, I always check online to get complete lists of everything in the ingredients. I checked my make-up and hair stuff too and all are fine.. thankfully!!.. I do take some real consideration the getting some CC from my boyfriend whose a frequent wheat eater.. I try and keep everything disinfected.. using different toasters and anything plastic I have my own. I think its time to get new dishes and pans though just to be sure.

aikiducky I have my b 12 checked all the time and its normal also.. so im not sure what to do... I have had blood tests for just about everything you can think off.. I have about a 12 page list of all the testes I have had.. and still nothing..

I will try cutting out soy and rice and adding more meats.. hopefully it might help me out.. im willing to try anything now to get better morals or not.. health is way more important.

again thanks so very much for your time.. it means a lot!!!

[Guest Robbin]

Hi, I just saw one thing that struck me and that is that you are eating cheese and yogurt. I made that same mistake, I thought cheese would be ok, and did not eat ice cream or drink milk. I was not getting any better at all and when I learned it was CASEIN and not lactose intolerance, it made the world of difference. I get the exact same symptoms from cheese as I do from gluten. After further investigation, I realized it can cause the same kind of damage as well. Replace the cheese with meat, use rice milk, and I sincerely hope you will see a change. My ds had the same problem as you have and was just getting thinner and thinner until we completely cut out all dairy. He has been slowly gaining and doing soooo much better. Take care and keep us posted.

[lorka150]

your story sounds so eerily close to mine - even the numbers

i was 22 when i was diagnosed, also. what freaks me out about your story is that my lowest was 78lbs, and i teetered around 92 for awhile. i was in the hospital for a long time, and i hear you on frail - my body was bruising itself just from leaning on it.

about the weight - are you SURE you aren't getting glutened somehow? the reason i was so ill was because, literally, one thing was sneaking in. the second i dropped it, i gained 10 lbs in about two weeks.

[gfp]

Wow thank you to all who responded .. I wasn’t expecting so many to actually care.

Firstly GFP.. I am not anorexic nor have I even had an eating disorder..

Cool we can drop that then I just had to check before so it doesn't come up.... so lets bury that and move on...I hope you didn't just go harumppppf and skip the rest of what i wrote

I have thought about stopping the all veggie diet a lot lately and I think ill give it a try real soon. I live with a vegen boyfriend.. I don’t have a problem with eating some chicken and fish now and then but just haven’t recently do to not wanting food to get wasted by me being the only one eating it. I do eat quite a few eggs though, about one every meal to help with some protein.

as for the blood tests on vitamin levels there all fine and im right where I should be.. so the doc says.

The other allergy tests would be the key to finding if I had more problems with rice and soy.. I don’t eat much corn but I want that tested also. Its hard to do so when I have a doctor that’s not cooperating with me on this you know?

Oh.... yes we know! Most of us have been through more MD's than we wish to remember.

I have had MD's say "you can't have that its too rare"... "its a childrends disease" and 101 other excuses.... and some of these after I was officially diagnosed.

Finding the right Dr. is hard (but getting easier slowly) .........

Your obviously really trying on non-vegan already.... eggs should be good .... and do contain all the protein you need. I understand about not wanting to waste food.. do you have a freezer? Perhaps what might help is you can prepare 3-4 portions and freeze some.

One thing I would worry about is getting dependant on any one food. For instance allergy to eggs is not so uncommon and celiacs do tend to have a 'gift' for other food intolerances...

I know what you mean nini about the CC I check and re check everything.. I don’t buy anything new unless I know its safe, I always check online to get complete lists of everything in the ingredients. I checked my make-up and hair stuff too and all are fine.. thankfully!!.. I do take some real consideration the getting some CC from my boyfriend whose a frequent wheat eater.. I try and keep everything disinfected.. using different toasters and anything plastic I have my own. I think its time to get new dishes and pans though just to be sure.

Yeah you really need to really really go paranoid on CC, that's easy...the hard part is getting those who live with to 'play' as well. The problem is people don't see wheat as a poision ... we are not brought up to go "uuugggh wheat.".. so even though people listen to differing amounts actually getting them to think automatically before they put a knife in a jar is really hard. It doesn't mean they don't care they just forget that its just touched gluten. Another thing worth mentioning but its a bit hard to express without sounding pompous (but heck everyone here knows I can be) is that people who are totally vegan often have a different view on food ... that is they have to work a bit harder on picking nutritious food so they look on it a little differently ... so its hard to confer to them that wheat is bad... because they have a mindset that wheat is good..meat is bad....

It doesn't mean they don't accept that for you its bad BUT I think it leaves a kind of nagging in their head.

(I was vegan-lite for 3-4 years pretty much like you ... pretty much at your age as well ... and my girlfriend was the vegan... I just went along with it because I didn't see eating meat as a big deal - in other words I never bought meat but only ate it if I went to peoples houses who served it for me) I was also probably about your weight/height ratio .... hang on I have to do English stones and pounds to pounds ...OK..back with y'all I was 170lbs and 5'10" (and a half) ...

I stayed pretty much this weight until I was diagnosed then went up to about 210lbs and since then I had to loose it and went down to about 180lbs.. (hence kinda podgy piccy since weight always shows on my face first...)

aikiducky I have my b 12 checked all the time and its normal also.. so im not sure what to do... I have had blood tests for just about everything you can think off.. I have about a 12 page list of all the testes I have had.. and still nothing..

I will try cutting out soy and rice and adding more meats.. hopefully it might help me out.. im willing to try anything now to get better morals or not.. health is way more important.

again thanks so very much for your time.. it means a lot!!!

You should try and post anything relevant in the tests.... we have lots of people here who might spot something your MD missed .. especially if you had them over time...

One thing about secondary intolerances is they seem to be less pronounced in many once the gut heals and I think that your problems boil down to one of two things.....

Either you have secondary intolerances (soy would be my favorite culprit from other's but even egg) and the other would be you are somehow getting gluten.

The CC issue is the hardest (actually I just wrote that and thought .... they are both freakin hard) .... but CC is so hard to pin down. Even if you have seperate dishcloths for instance its easy for someone to just pick up the wrong one and then you have it....

Another issue which never seems to resolve is alcohol.... the scientific ins and outs we keep debating but what is apparent is that many of us react to grain alcohol.. despite what Dr's tell us.

im willing to try anything now to get better morals or not.. health is way more important.

Well I have a suggestion.... how about keeping a detailed food diary. If you get a free blog you can give us a link and then we as a group of pretty expert gluten hunters and quite a few other intolerants too can look through and perhaps find something you didn't think of...or often just writing it down helps too.

The other thing is what I tell ALL noobies.... its what I wish I had done to start off but I spent 6 months of wasted time.....

Basically go back to basics.... cut out all allergens and go back to fresh meat/fish and vegetables ...

If your villi are still damaged then give them the best chance to adsorb nutrients and at the same time don't put anything in you that might aggravate them.... be ultra strict... that is no eating out and nothing you even suspect might be contaminated.

Do this for a few weeks and hopefully you see some positive response.

Then very slowly you start adding things back like rice ... spend a week with rice then add another potential allergen like corn.... lentilles, chick peas etc. one by one and give each one a week...

[amethystium-sky]

gfp.. You sure are a wealth of knowledge!, thanks for all your suggestions...

No I didn’t just go directly to the "eating disorder" part and dismiss all else. Its just an issue I have to deal with a lot, I wouldn’t go so far as to say im offended but I get the questions more often than I would like so that’s why I brought it up. I have a real problem with anyone inflicting self harm for attention, its silly and childish... anyways.. on to the important stuff!!

I will start the food journal ASAP, I tried one when I was first starting out.. but got really discouraged because when I listed how I reacted to what I eat I was always writing the same thing,.. nausea.. dizziness.. blah.. blah.. after every meal.

Actually my boyfriends pretty good about cleaning up after himself when it comes to the wheat foods he eats. But something I thought of was that im usually the one preparing his meals and sometimes I do make him noodle dishes and sandwiches.. I hope im not being to paranoid but can that maybe be the cause?.. I always wash my hands really well before I have them anywhere near my mouth after I make him food...but still..maybe I shouldn’t cook anything with wheat for him. I would like to just make my alternatives for the both of us so not to worry at all but its just to damn expensive to do, I swear its rape just trying to afford all the stuff for myself...but yea I do need to do the food eliminations just to be on the safe side.

With the alcohol.. I don’t drink at all so its nothing I have to worry about. I don’t eat out either for fear of CC.. so im doing good in those aspects. I will go through my paper work and list the tests I have had done some time soon… and I know what you mean completely about the weight. The first place its noticed is in my face, I hate it …not only do I feel sick I have to look sick as well and that’s when the comments start.. " oh she must be doing this to herself ".. or "oh my god look how skinny she is..".. its very depressing. I would much rather be a little over weight and under.

Do you.. or anyone else perhaps know of a site that has food lists or meal plan ideas for eating a simple diet.. or even some cookbooks with some recipes?.. I have read some on the SC diet and im wondering if that’s more of what I should be doing?..

[amethystium-sky]

Hi, I just saw one thing that struck me and that is that you are eating cheese and yogurt. I made that same mistake, I thought cheese would be ok, and did not eat ice cream or drink milk. I was not getting any better at all and when I learned it was CASEIN and not lactose intolerance, it made the world of difference. I get the exact same symptoms from cheese as I do from gluten. After further investigation, I realized it can cause the same kind of damage as well. Replace the cheese with meat, use rice milk, and I sincerely hope you will see a change. My ds had the same problem as you have and was just getting thinner and thinner until we completely cut out all dairy. He has been slowly gaining and doing soooo much better. Take care and keep us posted.

I meant to included this with my prior post.. Robbin that’s something I hadn’t thought of and your most likely right!. I eat way more cheese than yogurt. I will try it exclude that in my elimination diet as well, thanks for the info!

And lorka150.. im really surprised myself that I haven’t ended up in the hospital yet.. I know all about the bruising.. im like a banana.. even if the slightest thing bumps me I look like I have been beaten..

If you don’t mind me asking.. what was the one thing that was making you sick?..Im curious if its not the same for me and im just not aware of it.

[marciab]

"Basically go back to basics.... cut out all allergens and go back to fresh meat/fish and vegetables ...

If your villi are still damaged then give them the best chance to adsorb nutrients and at the same time don't put anything in you that might aggravate them.... be ultra strict... that is no eating out and nothing you even suspect might be contaminated."

This is your best bet at this point. I am still doing this after 1 year These are corn, dairy, soy and eggs. A lot of us don't do well with any of these. At least not in their natural states (whole). Whole eggs kill me.

I have some easy on the tummy food ideas. Try cooking a pot of gluten free grains and freeze what you don't eat. This makes meals so much easier.

Then top it with a EVOO (1 tsp at first, then increase it over time. I am at 1 tblsp now), and a meat and veggies mix. Chicken and fish are the easiest meats to digest. Aspargus, peas, baked potatoes w/EVOO, pumpkin, apples. Papaya, mango, and pineapple contain natural digestive enzymes and are soo easy to digest. Watch out for the pineapple though - it is known to cause oral allergies if you eat too much.

Eat small meals every 30 to 60 minutes. Eventually you can eat less often, but more quantity. For now though hopefully this will put weight on you.

Best wishes .... marcia

[lorka150]

it was a carob from bob's red mill. i didn't realize the two different plants, despite carob being gluten-free, in general. if you want to pm me, i can help you out with meal plans and so forth. we can exchange emails.

[CarlaB]

Kerissa, don't believe this Alfred, he's spamming all the boards!!