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danikali

Well, I Finally Did It

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Okay guys, I finally made the apt. with the nutritionist, I am having too many problems and my DF (fiance, I think I made that up myself? haha) has been telling me that I need some guidance ever since I found out about gluten. (Way before I was tested for anything). So, I've been having tons of problems this week and was up all night, so he called me today at work just to remind me to make that apt.

Before today, I kept telling myself that I didn't need any help because I have Celiac.com but the truth is, I need someone to make some kind of specific plan for me. This is the cycle:

-I get sick from 'something'

-I go back to my safe foods for a couple of weeks and start overeating everyday until I'm so full that I can barley breathe when I lay down. I overeat because nothing satisfies me. I have insane cravings, and with eggs, dairy, nuts and any gluten free processed foods bothering me, I'm left to veggies (some, low acid), fruit (some, low acid), fish, meat and my trusty rice cakes and potatos. And all these things are eaten plain. Maybe some salt and pepper.

-Finally, I feel 100% better and I am happy again. So I decide, let me just 'try' this, and for a few days, I'm still okay. I'm eating normal portions, I'm satisfied, I feel happy and then

-I get 'glutened' or I ate another food that I am intolerant to and I'm all screwed up again for a week.

-Back to the 'safe foods' and so on..........

Anyway, I've decided, I really need help because this is going nowhere. I'm not complaining, and I'm not really upset or depressed about it, I'm just exhausted from all of this. I'm thinking a nutritionist will give me exact amounts that I should be eating of each thing so that it can help me surpass my cravings and so I won't overeat. Then I can stay on my safe foods and venture out to those other options such as oranges, maybe some allergin free cocoa powder as hot chocolate, and be satisfied.

Anyway, my question is, have any of you gone to see a nutritionist/dietician?? And did it help? What do you think?

Sorry this is so long. And suggestions or comments are VERY appreciated. Thanks!

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Hi There-

I am new to the boards- but I am a dietitian, and I am also being tested currently for celiac.

My advice to you would be to make sure that you go to see a licensed dietitian- it is really important- just because there are alot of people out there who call themselves dietitians or nutritionists without really having the training. You want someone who has experience in the area of digestive disease.

Private nutritionists can now take health insurance if they are licensed, and if I were you, I would go see a private dietitian. Lots of personal attention and time.

If i can answer any questions for you- let me know.

Take good care,

Rebecca

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Thank you Rebecca! Well, I searched nutrition under my insurance company and this is how I found who I am going to. She said that although she does not specialize in Celiac Disease, she has had patients who have celiac disease. Also, how do I know if she is a registered dietician. I already made the apt. so I don't want to call her and ask her, I feel like that would be rude. Oh wait a second, it says 'RD' next to her name. That probably means registered diatician, right? And she went to NYU and was in the nurse practioner program. Also, she answered her own phone and talked to me for a few minutes about what's going on. I told her that I eat all the time because nothing satisfies me anymore and she said that we can work out a plan. So what do you think? Do you think she sounds good?

Also, as you read my cycle of life these days, have you ever experienced a patient like me? And if so, what would you have done for them?

I'm sorry if that's too specific, I'm not paying you after all! Thanks though.

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Hi Dani-

No problem at all!

I think that your dietitian sounds great! Yes- you either want an R.D. or an LDN. Both are licensed and educated and will be able to help you alot.

I have lots of clients who fall into the same cycle that you have- whether it is from food intolerances, or just being on a diet (which is usually the cause). Any time you are depriving your body of something that it was so used to, it is going to call out to you for those old foods. It can become really difficult.

If you want to email me- please do-

you can send me your email address and I will send you mine.

Good luck with everything!!

-Rebecca

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Ooh thank you so much!!! I would love to talk more through e-mail, I need all the help I can get! My e-mail is Danikali22@hotmail.com

I don't want to diet, but I want to stop making myself sick from overeating....it's like, I get so bloated from just the side effects of Celiac and then I add food, and more food, and before you know it, I'm so tight in my chest, and my stomach is bigger than when it was before, and so with those two things together, I'm filled to the rim, but in the meantime, my body is crying out for some variety of foodand ahh, you get the picture. Anyway, I would love any advice you could give me. So far I've realized that I can't have nuts, dairy (I'm in the process of getting tested for a casein intolerance, if not, it's def. lactose.), or eggs, and maybe soy. I've had soybeans before at Sushi Samba, and sometimes they hurt me and sometimes they don't. So who knows. But I'm also really sensitive to gluten, and I'm trying my hardest to even stay away from the products made in facilities with wheat.

Anyway, thanks for any helpful tips you can give me!

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Dani - first of all your cake makes me drool....

I've been blessed to have my mother's best friend to use a resource. She's also a RD and her daughter has Celiac. While I love my dr., he didn't know much about going wheat free nor did he refer me to anyone. My mother is the one who suggested I see her friend.

She was very helpful, esp. in the beginning. She had me keep (and I still do) a detailed food log and I also track my bathroom trips to find a correlation between foods. Sometimes I can, sometimes I can't. Like apples - used to eat them daily, now it seems one goes right thru me. She had me take my diet down as simply as I could then re-introduce foods back one at a time. Only one new food every four days and it has to be in the purest form so as not to be bringing back a ton of other things at once and not knowing what you're reacting too. A bit of a pain, yes - but if you can find what triggers you then it's worth it.

I'm still pretty much sticking to my safe foods. Tried to re-introduce dairy, but I had some reaction so I decided to give it up for a while and am praying my GI tract heals enough to at least have some. (My Kingdom for a slice of cheese!!) :P

Good luck, let us know what you find out!

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Hi Ev,

(Sorry, that's your name right?) thanks for replying. Well I'm glad to hear someone else decided that this might be a little too hard to do alone. That's great that your Mom knew this woman and she also has a child with Celiac. So, now that you know your for sure safe foods, do they stay that way? Because I heard that when you eat too much of the same things, you create intolerances to them! Like you said you could have apples with no problem before, but now they go straight through you......how does that really work? So many doctors I have talked to want me to take medicine because they say, once you are intolerant to one thing, you start becoming intolerant to a lot of things, and before you know it, you can't eat anything! And that scares me......so what does that mean? Either we can only have one food on this whole earth that will always be okay with us, or we should live on medicine and just eat those foods and deal with being sick most of the time? Do these intolerances ever go away? Have any of yours?

I'm sorry, but this whole thing still confuses me and it scares me too. What are your thoughts?

Oh, and thanks about the cake. I know, I'm actually dieing for that cake everytime I look at it.....I should probably delete it but I think it's so pretty!

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Most of the intolerances will go away if you allow your gut to heal. Things that slow down or prevent healing are obviously gluten as #1 but also ANY other food intolerances, bacteria infections, caffeine, alcohol, etc. If you are experiencing numerous food intolerances then you have a leaky gut. Yes, the cycle can continue and you can develop more and more intolerances because your gut remains leaky and the food particles "leak" out into the bloodstream where they do not belong. Your immune system will respond creating an intolerance. These will not last forever....but you have to end the cycle by allowing your gut to heal. I dont know how taking medicine is going to stop food intolerances...it wont. I suggest finding someone who knows how to put you on an elimination diet and also knows a little something about dealing with numerous food intolerances and leaky gut. The dietician I saw only showed me the food pyramid and gave me some stuff on Celiac she printed off the computer. Not too helpful. The nutritionalist I'm seeing now is excellent. Knows everything about leaky gut, food intolerances, elimination diet, Celiac, and most important healing the gut and stopping the cycle. I hope you get someone with this kind of knowledge to help you out.

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So, now that you know your for sure safe foods, do they stay that way? Because I heard that when you eat too much of the same things, you create intolerances to them! Like you said you could have apples with no problem before, but now they go straight through you......how does that really work? So many doctors I have talked to want me to take medicine because they say, once you are intolerant to one thing, you start becoming intolerant to a lot of things, and before you know it, you can't eat anything! And that scares me......so what does that mean? Either we can only have one food on this whole earth that will always be okay with us, or we should live on medicine and just eat those foods and deal with being sick most of the time? Do these intolerances ever go away? Have any of yours?

To be completely honest, the question of getting more food intolerences and how will I ever know what's safe to eat had me completely wigged out, esp. around the holidays. I also had some other issues going on (sick kid, job stress, holidays...) so between the whole combination I was getting very anxious and depressed. My dr. put me on an anti-depressant although I've been fighting them for a while (pre-dx too).

Other then that, my dr. has not recommended other medicines to me. I try to rotate foods as best I can. I log what gives me a reaction - but it's weird... sometimes, say, I'll get some D after I eat steak, other times I won't. Not sure why. Maybe it's a combination of things I've had? Maybe I'm still healing? Maybe it's just a normal reaction? I have noticed the apple thing lately, so I'm just avoiding apples but will reintroduce them soon again. I pray I don't get other intolerences. Not much else I can do, so I eat what I know I can - look forward to trying dairy again when I'm ready... and keep taking my anti-depressants :P (Not, of course, that I recommend them for everyone - work with your doctor an do what's best for you)

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Okay, now another question......

do you guys know if the foods that I am intolerant to, besides gluten, I should avoid like the plauge, as well? For example, I now know that dairy gives me 'C' mixed with 'D' and weird nerve headaches. So, should I avoid that like crazy too, even if the only time it bothers me is if I have too much of it, for example, a glass of milk every single day. Ev, you said that steak only bothers you sometimes. Are you supposed to always stay away from steak? And how long is all of this supposed to take? And what kinds of foods do you start out with? This is scary actually. I already feel like I can't eat enough....may I ask what you can eat?

I'm sorry to hear you were going through all of this at once Ev. You must be a strong person because God doesn't give you what you can't handle, and to handle all of that says a lot about you.

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Okay, now another question......

do you guys know if the foods that I am intolerant to, besides gluten, I should avoid like the plauge, as well? For example, I now know that dairy gives me 'C' mixed with 'D' and weird nerve headaches. So, should I avoid that like crazy too, even if the only time it bothers me is if I have too much of it, for example, a glass of milk every single day. Ev, you said that steak only bothers you sometimes. Are you supposed to always stay away from steak? And how long is all of this supposed to take? And what kinds of foods do you start out with? This is scary actually. I already feel like I can't eat enough....may I ask what you can eat?

I'm sorry to hear you were going through all of this at once Ev. You must be a strong person because God doesn't give you what you can't handle, and to handle all of that says a lot about you.

Everyone is different and you just have to find out (unfortunately through trial and error) what works best for you. I have a friend that can have some dairy without incident, another friend has all the cheese she wants but no milk or ice cream, I reacted last time to a half serving of plain yogurt...grr... Personally I usually try to avoid soy if possible (I have almond milk instead) but I don't go out of my way to avoid it - like I do with gluten.

I do have steak, but occasionally. I eat a lot of chicken, turkey, salmon and lean pork. I cook simply, and often cook a big thing on Sunday to have for lunches throughout the week. I do eat potatoes, corn - some people can't... again, you just have to try it. Thats why I recommend eating simply (i.e. just meat, veggies, rice) for a while, then slowly add in one thing (say corn) for a few days. Don't try other new things, including medicines - how will you know what you're reacting too?

Thank you for comments about God giving me only what I can handle... I'm also a single mother which adds a whole other dimension to my crazy days! Good luck, I'm looking forward to hearing what your dietician tells you next week.

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Dani,

If you know you are intolerant to something you should avoid that food until you are healed. Later on you will be able to slowly add foods back in. But this is not gonna take a couple weeks....you will have to avoid the foods that bother you for a good long while. Let your body heal. Lots of reactions are dose related so suppose you drink a glass of milk and feel fine you will then assume you can drink milk all the time. After a few days the accumaltive effect of all that milk will catch up to you. All food intolerances contribute to inflamation of the gut lining so if you know for sure dairy bothers you...you should stay off dairy. Its not forever like gluten. I've been doing this for about 10 months now. I'm a whole lot better than I was a year ago when I couldnt even get out of bed but I still didnt heal as well as I should have with my strict diet. I got more testing and ended up having intestinal bacteria infection. An infection is very damaging to the gut lining so if you dont get better after giving yourself at least 6 months to heal...maybe look into more testing. For now I think you really should stick to a plain diet...if you feel good then you are on your way. Dont take a step back by thinking its safe to go back to dairy or a bunch of processed stuff after only a week or 2 of feeling good. You didnt get messed up over night and you wont heal overnight either.

Good luck! :)

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Dani,

I have had the same problems with digestion. I think caffeine aggravates things too. Well, my GI doctor told me if you have IBS symptoms, that one day one food may bother you and not the next time you eat it. He said there is a list of foods to avoid if you have IBS symptoms. It sounds like you are having these symptoms besides celiac. I would read the treatment for IBS too, as well as following a gluten free diet of course. Also taking something like Citrucel could help with the C and D.

Good luck with the nutritionist.

MOnica

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Thanks guys!

I finally got my home computer working again. There was a virus on it and we finally had time to take it in, so now I can chime in on the weekends!

Anyway, Rachel, you're soooooooooo right. That was my problem. I would be good for a week or two and then assume that I could go back to the other foods!!!!!!! (besides gluten of course)......well, now I know for sure. That's actually exciting to know that now I will really be on my way by sticking to my safe foods for the next 6 months and NOTHING ELSE, and I will finally be able to heal!

And Monica, you are also very right. I have IBS, obviously due to Celiac and this leaky gut thing going on. So I can't have alcohol (gluten free or not) or caffeine, etc. etc. etc. And I know all about the IBS diet because I was trying that before I knew I had a problem with gluten. (the IBS diet says you can have sourdough bread and that was killllllllling my stomach, so I threw the IBS diet right out the window!) So besides the gluten in the IBS diet, I know I should also be following everything else.

I'll keep you guys updated with all of the things I learn from the nutritionist.

Thanks!

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make sure to get plenty of fat and protein while you're eating your 'safe' diet. what you listed was almost all carbs, and ones that metabolize fairly quickly, which could be why you're not satisfied (blood sugar swings). if you can't have eggs, dairy, or nuts, then have plenty of chicken/beef/fish/pork/turkey, avocados, coconut, olive oil in the cooking of the vegetables you do have, and higher fiber items like brown rice (not white), millet or quinoa, and flax.

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