Apt. With Nutritionist Last Night

[danikali]

Hi everyone,

I just wanted to let you all know how my apt. with the dietician went last night. I have mixed feelings about this lady.....but I'm giving her a chance.

For one, she said that she worked with Celiacs before over the phone, and when we got there and I told her about all of the intolerances that I figured out through trial and error on my own, she didn't seem to understand how Celiac Disease could cause this. My DF (he came with me) said, haven't you worked with Cealiacs before? She said yes, but they only had problems with gluten, and some of them dairy. She seemed shocked when I told her I couldn't have dairy, eggs, soy, nuts and processed foods. DF asked how this happens and she said, 'I don't know.... ' (She said this line a lot last night). I was very tempted to explain Leaky Gut Syndrome, etc. etc. but I decided, what's the point. I'll play dumb, listen to what she has to say and ask her test questions.

So, the conclusion she came up with (after looking through my food journal) was that I was eating too much of one thing during the course of the day. This, I agree with her on. I have had no balance. Then she said, this is a possible reason of the other food intolerances. I thought, okay, I've heard that before, possibly right, keep going. So she started writing down a diet plan for me with foods that I know I can have and showing me that you should have a little protein with every meal, at least 2 snacks in between meals, one after dinner if you are still hungry, and she helped me see which food groups fit in where. For example, instead of having fruit for the bulk of my meals (like I have been doing a lot), I should have them for snacks or add some with breakfast. She also gave me serving sizes of each food group. Then she gave me ideas of what I could eat for a week for each meal. Well, like half a week, because she ran out of varieties for me! So I guess I'm just switching things around every 3 days or so. So when DF asked if I should be better in 6 months, she said, I think so, is that what you read? And I was like, yeaaaaaaaaaaaaahh minimum. (Don't you know this lady? -I mean, I told her I had Celiac on the phone, if she didn't know too much, couldn't she have done some research? ) She didn't seem to know anything about casein and anything about intolerances and what symptoms are a red flag. I said, well with nuts I get HORRIBLE HORRIBLE STOMACH PAINS AND BADDDDDDDDDDDDDDDDDDDDDDDDD BACK PAINS, AND BLOWN UP LIKE A BALLOON! She was like, 'I don't know why that would happen' .

So, all in all, I'm trying her diet today and so far, very good. Before I never had meals, I just randomly ate foods all day long. I could eat a whole bag of rice cakes in one sitting. (not good, I know). So I obviously needed LOTS of help there.............but if this doesn't work, I can't stay with this lady because when I mentioned an elimination diet, she gave me a face like this:

Anyway, on that other note: my Mom went to the doctor today to start her own testing for Celiac. As she was telling me about it, she goes 'then I asked the doctor if when I'm healed, I could have bread and all that stuff again, right?' The doctor said, NO, NEVER! (well surprise surprise!!! ) I said Mom, we've been talking about this everyday since I got diagnosed, you didn't believe ME??????? She said, well, I don't know what to believe these days. I thought, well, all of the research you've been telling me you were doing was a LIE!

It upsets me that she thinks she never believes me even though I have explained INSIDE AND OUT the complexity of Celiac. It's like, she acts like she wants to hear what I say, but she doesn't really listen. She's in her own little world and then she tells me, so when you're healed and you can eat EVERYTHING again, I always add (except gluten!).....and she says, 'uh huh' and keeps going.......

She also doesn't seem to believe that I have all of these other intolerances. She always says, 'that doesn't make sense to me,' everyone I talk to who knows someone who has it just can't have gluten. She then implies that I'm making it up or I'm crazy or something. Then I'll say, this is not just me, she says, oh, I know, I believe you......then a few days later, now why can't you have nuts? I don't get why you're intolerant to these, how do you know? That's not Celiac disease!

Ahhhhhhhh!!

Sorry so long, if you read this thread, thanks for sticking through it.

I guess I'll look on the positive side. I'm finally feeling better again.

[dlp252]

Glad you are feeling better today, and that you came away from your appointment with something useful! I read the whole post, lol.

[danikali]

Glad you are feeling better today, and that you came away from your appointment with something useful! I read the whole post, lol.

Thanks!

[jerseyangel]

Dani--I read the whole thing (of course!) and all I can say is I completely understand everything--the "professional" who knows much less than you and is not so open to learning and most disturbing of all, the mom who tunes the whole thing out and cannot possibly believe that all of this is happening. But we know it is, and I so relate to the frustration you feel. Sometimes I want to just scream at these people--but then I'd look even more crazy to them . Anyway, I am glad that you were able to take something away from the appt. I really hope that the regular eating pattern and the rotation will help. If I get any new info from the allergist, I'll let you know. But I probably shouldn't hold out too much hope Keep me posted on how you are doing with the new plan!

[DonnaD]

I read the whole post too, and I own a Mother obviously from the same batch as yours! I think they must have had a common sense bypass during production

[danikali]

Thanks Patti. You said you don't want to scream at these people who don't understand, and I know exactly what you mean. I have flipped out at my Mom especially. She already thinks I'm crazy though through all of this stuff going on. She has told me a million times that maybe I'm just depressed, maybe I need to 'talk to someone.' I think, maybe she could just listen a little better and not make things more frustrating. Anyway, I hope this diet works too. So far, so good today. The only symptom I've had all day is cramps and bloating, but I'm supposed to get my monthly friend today or tomorrow, so that's a whole other thing.

So good luck with the allergist and make sure you post about it whether it's good or bad. Thanks for listening, 'reading.' And I'll keep you posted too. Hopefully you have someone who knows and recognizes intolerances as well as allergies.

I read the whole post too, and I own a Mother obviously from the same batch as yours! I think they must have had a common sense bypass during production

hahahah!!!! I know, right? Something like that!

[penguin]

I read the whole post too, and I own a Mother obviously from the same batch as yours! I think they must have had a common sense bypass during production

DITTO!

My mom keeps telling me to stop self diagnosing. But the Dr put me on this diet to begin with? And officially dx'ed me last week?

I guess my doctor was a mirage...

Are complex hallucinations a sign of Celiac?

[tiredofdoctors]

I'm sorry you had a marginal (nice term) visit with the dietician. My thought with the intolerance to nuts is that your gut is probably so inflamed -- nuts are REALLY hard on your intestines. People with Diverticulosis and Diverticulitis (inflammation) of the large intestine are FORBIDDEN to eat nuts because they're so hard on the intestines.

With regard to your mom -- I think that's age-old. I'm a physical therapist -- my dad has this horrible hip pain -- but he listens to his "best friend" who is 80+ years old -- a retired urologist -- and has cortisone injected into his hip WAY too much. Of course, he doesn't do the stretches I told him to do to prevent it from coming back. I'm just his daughter! In one of our most heated debates, I turned to him and said, do you realize that people PAY ME for this exact advice -- AND THEY TAKE IT!!! AND THEY DON'T HAVE TO HAVE CORTISONE SHOTS!!! DOES THAT TELL YOU SOMETHING????? Wasn't well-received! I don't think that any parent is going to consider their child an "expert" on anything, sometimes!

Good luck to you . . . . I'll be keeping you in my thoughts & prayers . . . . Lynne

[ebrbetty]

thanks for posting about your appointment, sorry to hear it was somewhat of a disappointment, I get the impression from your post that what little advice she gave you was more common sense than anything [ not eating a bag of rice cakes at a sitting] I give you credit for sitting through the whole appt. I would have walked out once she questioned celiac and other intolerances. do you plan on going back? have you ever tried "Eating for IBS?" [gluten-free of course] it does help me, nowing which foods are easier to digest and not eating insouluble fiber, ever alone or on an empty stomach..to hard on the stomach.

your mom sounds like my idiot gastro dr, he thinks its all in my head..

good luck to you!!

[mookie03]

Hey Dani,

Sorry ur appt wasnt as successful as u had hoped, though it does sound like you reaped some benefit from it, even if just a fresh perspective on ur diet (sometimes its hard to realize how much of a certain food ur eating without someone else pointing out the problems with your diet). I hope u start to feel better as u balance your food a little more. And yes, of course i too read the whole post

Actually, my mother called me last week and told me she booked a 3 night trip for us to go to Canyon Ranch- she said she really wants me to see a nutritionist there b/c they tend to be very knowledgable about food sensitivities and intolerances. She called ahead and booked me an appt with someone who knows a lot about celiac disease-- I cant tell you how excited i was- not b/c i think that she will help me that much (after your story, im even LESS confident!) but b/c it really showed how much my mom cared about it. I wish u guys could all have my mom, seriously!! She has been so ultra-supportive through all this. Anyway, i plan to ask some of the same questions about making sure my diet is varied enough and that im not lacking in any nutrients that i was getting from the foods i used to eat...well, just thought i'd share But back to you dani, i think it is really hard for some people to grasp food intolerances...most people would just say "i have a weak stomach" and be done with it, b/c that is somehow more mainstream and acceptable than saying "I cant have [insert every processed food]..." But dont listen to them, listen to you (and your intestine)

[Lollie]

Dani,

Sorry you are having such a hard time with your mom. I really understand, I was there a couple a weeks ago.... But that's another thread! I hope she will come around. I think my mom doubts because she is worried about me. I know she is always cooncerned that I won't get enough to eat or that my lack of eating will make me sicker. When I say lack of eating, I mean lack of eating mainstream convinence foods-or things she is used to. I have taken the advice I've gotten from this board. I don't talk much about it to my mom now. I tell her good things, I share successful dishes with her, and I come here to vent. It seems to be working so far.

Maybe she will get better, but maybe you will have to change that aspect of your relationship with your mom.

Hope this is of some help!

Lolllie

[Claire]

Who knows why family members tend to be so insensitive. With most of you it seems to be your mother.

With me it is my children - at least two of them (both girls). It isn't that they don't believe me - they simply don't want to hear anything about it. If I am going for tests one of the girls just changes the subject without asking why, when or where. The other girl stays even further away from the situation - sees to it that she doesn't hear a word about it. My son calls often and is very supportive. My other daughter is here at home with me and a gem. She has some serious problems too - very similiar so she has no trouble dealing with all this.

I am not sure what it is with the girls. I think that one girl just doesn't like to face reality of any kind - her own or anyone else's. The other daughter is just into her own world and doesn't see or care much about of anything outside of it.

So sometimes it's mothers and sometimes it's daughters.

Tough either way. Claire

[tiredofdoctors]

Claire -- I agree completely. My mother, she's a gem. The only problem that I have with her is that she continues to say "I know you're going to get better. I know you're going to walk again." I feel this implied pressure to hurry up and get well, because she can't stand watching it. My daughter, on the other hand, resents the living daylights out of me. She doesn't want to talk about the disease, doesn't ask if I've heard anything new, doesn't ask how I am (she lives away at college). She has been like this since I started getting sick, and since she has become engaged, it's even worse. It feels as though she's only concerned if my husband is going to be able to pay for the wedding. My health is of no concern whatsoever. I do think it's mothers and daughters, or daughters and mothers. You may have hit the nail on the head.

[Guest cassidy]

I have two thoughts about your mom.

The first, giving her the benefit of the doubt, that this is the only subject that she treats you like this on - not believing you, etc. You said she is getting tested herself, maybe she is in a bit of denial. My mother got diagnosed first (she has dh and totally different symptoms) and during her research called me and said she thought I had it. I had already looked into it a little for her because she was getting sick everyday and I was trying to help. When she told me I might have it, my first thought was I don't want that. That looks like it is so hard to deal with, I don't have that. I never thought my mom was crazy when she started going through this before me, I think people have a right to eat what they want and do what they want without being questioned. It was tough to know what a hard time she was having and to think that I may be facing that myself.

My second thought is that your mom is a bit self-centered and insensitive and treats you like this in all aspects of your life. I realize that she is your mom and she will always be in your life, but you can limit how you use those types of people as a support system. If she isn't understanding, then don't go to her when you are feeling bad. Go to your friend who went to that appointment with you. Save your mom for the happy stuff and then she won't let you down when she doesn't react in a supportive way.

[teankerbell]

Hey Dani

It's me...

At least you got a good start on the nutrition thing. In the meantime, you might want to find a nutritionist who really understands Celiac and all the food intolerances that go with it. It seemed like you knew more than she did and that isn't good. You are paying for a service, so you can fire her.

As far as Mom's go - I don't have a good relationship with my mom either. I have always hoped and tried for a better one as I got older, but it still hasn't happened (this past weekend was a great example of that), so I know exactly where you are coming from - we can talk offline about that more.

With everything else going on, I know you wish your Mom would be there to help you cope with all this. What I have learned is that our Mom's will never change and that is who God has given us.

But you know where to find me!

[wolfie]

Wow.....sorry you didn't get a lot of answers. I give you a lot of credit for hearing her out. It really is a shame that she didn't research more knowing that you had Celiac and when your appt. with her was. I hope that you see an improvement. I would see if you can find someone who is a little more familiar with Celiac and the other intolerances. I know how you feel....I have mulitiple other intolerances as well and it is really frustrating.

Kim

[danikali]

Wow! Thank you so much for all of the support everyone! I do agree that I can't stay with this nutritionist because she seems more like the kind of doctor who helps people who want to loose weight. (on the worksheet she gave me to fill out my food it has break. lunch. dinner. snacks and excersize...nothing about symptoms and feelings, or stool issues, etc. I really wish she told me before I went there!) Anyway, I'm going back to Dr. Green either the end of this month or early next month, and if things seem to flare up again, I'll ask for his dieticians name. (I don't think my insurance works with her, but it has come down to not mattering anymore). But actually, so far so good, although this is only the second day...

Anyway, regarding my Mom. I think you're all very right with everything you said. And I wish I could just stay off of the subject with her (celiac disease) but she always asks. Plus, I brought it to her attention, like I mentioned, that she may have it because someone gave me the gene, and she and my Dad both have some small health issues that might be cleared up if they found out they had celiac disease or Gluten problems. But at least I know I have this site, and you all know that I'm not making things up, so from now on, I'll just come here and only here when I'm having celiac disease problems.

And Stefi, you def. are lucky, and I'm glad you know that and don't take your Mom for granted like I know a lot of people do when they have a very understanding and helpful parent. And let me know how that weekend (or 3 days) goes for you. Lets us all know actually, as I'm sure it will be beneficial for everyone.

Oh and Lynn, thanks for the info. on the nuts. I never knew they could be such a problem, but they cause a HUGE PROBLEM for me these days. And I think you're right about parents not believing for some reason that their kids could actually know more than them on certain subjects.

[teankerbell]

I agree - staying off the Celiac subject might be the best thing. Even if she asks. Just be brief about it and make light of it. Like "Oh, up and down - the usual at least that is how it will be for a while", something like that and change the subject.

Like some one posted here: she may be in denial and she isn't ready to process this or understands it or is willing to understand the disease at this point.

You have given her enough information to go on and she needs to decide for herself what to do.

By the way, your Dad is listening... He has me to deal with.

[Lollie]

I'm glad that you are looking at this the way you are. Having had to go through this with my mom....I know that it has worked for me. As long as I only go positive with her everything is fine! In fact we get along pretty well, but if I go for support, forget it. Sorry you don't have her for support, but you do have us and your fiance'.....right? Is he supportive?

Good Luck!

Lollie

[CMCM]

Big Sigh! Well, we all know doctors, and most likely nutritionists too, just don't like to admit when they don't know about something. OK, so give them credit for not having encountered someone with celiac disease. But here's my question: When they encounter the possibility, when they have a PATIENT telling them stuff they don't know much about....WHY don't they go research it immediately????

Your nutritionist studied a curriculum in school, and she read a bunch of bunch in which celiac disease may have been given, oh, perhaps a paragraph or less, something like: "A person with celiac disease cannot eat gluten in any form." So the info she gave you was very very basic and common sense for anyone, but not specialized for your needs.

As for your mom, her attitude could be that because she doesn't know enough about celiac she just can't understand/believe it....and she may be a person who wants a DOCTOR god to tell her the info, not her daughter who couldn't possibly know anything at all about a medical condition because she's not a doctor!!!! My mother in law is like this and she definitely worships at the alter of the doctor gods who she is sure know absolutely everything about everything (and they walk on water, too) !

Or she could be like my mom....who is also celiac and who should know better....well, my mom didn't like the idea that she passed this on to me, like a huge defect or something, so she keeps thinking that since I don't get as ill as she does, it must not be so bad and I could probably eat gluten here and there. Like I have a "little touch" of celiac disease! This is because she doesn't have all the facts AND she's got this emotional denial going on. I don't understand her attitude, but that's just her. I know I have passed one of my genes to my 2 kids, and I'm really sorry about it, but that's life and my job is to make sure they know all about this and how it might affect them down the road. I can't waste my time feeling guilty that I gave them a less than desirable gene.

I guess I'd just say use your head and your brains in all your encounters with doctors and nutritionists too, and it looks like you're doing that are because you questioned the nutritionist quite nicely and let her show you what she knows (or in this case, doesn't know!). I always give people a generous chance to demonstrate their ignorance to my own satisfaction, and I proceed from there! This is also why I tend to find out as much as I can on my own and don't waste my $$$ on someone who doesn't have the information or knowledge to help me. We all tend to think a specialist always has superior knowledge to us mere mortal laymen, but that's just not true.

[CMCM]

Wow! Thank you so much for all of the support everyone! I do agree that I can't stay with this nutritionist because she seems more like the kind of doctor who helps people who want to loose weight. (on the worksheet she gave me to fill out my food it has break. lunch. dinner. snacks and excersize...nothing about symptoms and feelings, or stool issues, etc. I really wish she told me before I went there!) Anyway, I'm going back to Dr. Green either the end of this month or early next month, and if things seem to flare up again, I'll ask for his dieticians name. (I don't think my insurance works with her, but it has come down to not mattering anymore). But actually, so far so good, although this is only the second day...

Anyway, regarding my Mom. I think you're all very right with everything you said. And I wish I could just stay off of the subject with her (celiac disease) but she always asks. Plus, I brought it to her attention, like I mentioned, that she may have it because someone gave me the gene, and she and my Dad both have some small health issues that might be cleared up if they found out they had celiac disease or Gluten problems. But at least I know I have this site, and you all know that I'm not making things up, so from now on, I'll just come here and only here when I'm having celiac disease problems.

And Stefi, you def. are lucky, and I'm glad you know that and don't take your Mom for granted like I know a lot of people do when they have a very understanding and helpful parent. And let me know how that weekend (or 3 days) goes for you. Lets us all know actually, as I'm sure it will be beneficial for everyone.

Oh and Lynn, thanks for the info. on the nuts. I never knew they could be such a problem, but they cause a HUGE PROBLEM for me these days. And I think you're right about parents not believing for some reason that their kids could actually know more than them on certain subjects.

Dani....remind your parents that you got a GENE from one or both of them! I knew my mom was celiac, so I half expected to get a gene from her....but my big surprise was that I had TWO genes....one for celiac and one for gluten sensitivity....so my dad had something going on too!

Also...were you diagnosed by the Dr. Green who wrote that new book "Celiac Disease...a Hidden Epidemic."

[danikali]

Thanks for the replys again! I'll say it again, I LOVE THIS SITE! What would I do without you guys?

Anyway, yes, my fiance, Danny is veeeeeeeerrrrrrrry supportive. He takes care of me very well and he listens to me and he does anything that he can to put my mind at ease when he can. I got verrrrry lucky with him.

And yes, if I was a nutritionist, and I talked to someone over the phone who told me they had a condition I only delt with lightly, and they had symptoms I hadn't heard of yet, I WOULD DO THE RESEARCH! Actually, I should think about becoming a nutritionist because health research actually interests me, and I would have been happy to learn more if I was in her place. Plus, I would be afraid of having to say 'I don't know, that's a good question' to many things that I inquired about. She should have at least been honest with me over the phone if she didn't feel, or have time to do the research instead of possibly wasting hers and my time.

And Laura, I know Dad believes me, he's always believed me.

And Carole, yes, I was diagnosed by the famous Dr. Green that wrote the book. I was having so much trouble a few months ago that Danny decided that it didn't matter the cost, I had to get the best help I could. And I live in NYC, so it was obvious Dr. Green would be the best. My fiance works for a construction company (as an estimator) and they work with Columbia University. So Danny's boss called someone who called someone and got me in the next morning. His boss even said he would pay for it!! (Dr. Green only takes Oxford insurance, I have CIGNA) but my insurance ended up paying for the whole thing anyway.. Why? I don't know. But the whole thing was like a miracle to me, the best Christmas present ever.

[teankerbell]

Yep and we both love you LOTS!

We want you to get better, worry about you and wish we could do something to help you feel better. We will do what we can to help you cope with celiac disease and be supportive through this process.

Love you LOTS!

[jerseyangel]

With regard to your mom -- I think that's age-old. I'm a physical therapist -- my dad has this horrible hip pain -- but he listens to his "best friend" who is 80+ years old -- a retired urologist -- and has cortisone injected into his hip WAY too much. Of course, he doesn't do the stretches I told him to do to prevent it from coming back. I'm just his daughter! In one of our most heated debates, I turned to him and said, do you realize that people PAY ME for this exact advice -- AND THEY TAKE IT!!! AND THEY DON'T HAVE TO HAVE CORTISONE SHOTS!!! DOES THAT TELL YOU SOMETHING????? Wasn't well-received! I don't think that any parent is going to consider their child an "expert" on anything, sometimes!

This reminds me of a conversation I had with my mom recently. I have an aunt, her sister, that is a retired nurse. My mom will always say "Aunt Joan said this or that", or" I'll ask Aunt Joan". (in matters of health) I said, "she was trained 50 years ago and had been retired for many years". You know what she said? "I ask her and she looks it up". My mom has no respect for the fact that I have done hours and hours of research and know where to go for information. She thinks that doctors know everything and anyone without medical training knows nothing. If it wasn't for me seeking out alternatives and reading and putting two and two together, I never would have known to go to the GI and tell him what I thought was wrong with me.

[shellhoo]

I read the whole post too, and I own a Mother obviously from the same batch as yours! I think they must have had a common sense bypass during production

Ha Ha. I know what you mean! I've explained celiac to my family numerous times. My stepmother thinks that I can't have starch, as in potatoes. It's odd. I go to family functions where there is food and she thinks she's being nice to me by making brownies. She says here Shell, I made these for you. I'm like yeah, sure, thanks. I'll pass on those, I'd rather not be vomiting or have D for a week.

As for the dietician, I've had 2 of those. One when I was first DX and she said I could have Kelloggs Corn Flakes and Rice Krispies. I got sicker. You never know what you are going to get!!!