Nj Nutrionist?

[mela14]

Hi guys,

Just looking for someone in the NJ area that could help me with my diet. I have so many intolerances that I just don't know what to eat anymore and lots of foods are making me so sick.

My biopsy just came back neg and the DNA was neg for celiac as well.

My dr just called to give me the "GOOD" news....I am not celiac (but....I am still feeling so poorly and having such a hard time with different foods). oh well.........

I know how I feel when I eat gluten or any of the other allergens so I won't go back to eating them but.......this is so hard and I get so hungry and don't know what to eat. Instead of giving my money to a weekly therapist I would rather give it to a nutrionist to help me learn how to eat right for my body.

I live in the Freehold area..............any names?

thanks,

[celiac3270]

None in NJ, but I'd advise you to go to Anne Lee in New York. She's at Columbia University and it's worth the trip. She works with Dr. Green, and is the Dr. Green of Celiac nutritionists...it's worth it for the recipes, ideas, and knowledge you'll get.

[mela14]

thanks.........

it took a while...but I'm calling Ann Lee as we speak(write). I saw her about a month ago for a consult and she was great.

i was told that I don't have the gene dr Susie Lee after blood work and endoscpoy so thought it must be something else.......well. I am so sick right now and not sure how reliable those tests are!

she said that my intestines looked fine! she said that I probably have fibromyalgia ( duh... i know that I do)

but......I am still getting so sick with foods.

I am at the end of my rope and just so digusted.

[zarfstertugboat]

celiac3270 has given you good advice, and the only thing that i could add would be to question you as to the possibility, even a remote possibilty that poison is somehow getting in your food. this would cause you to complain to the drs. and they might operate, thinking it's something else, resulting in mis-diagnosing surgeries. this happened to my next door neighbor....................hope you get to the bottom of this and get back on the road to good health....................zarf...............................honolulu

[mela14]

I'm curious as to what happened to your next door neighbor?

Dr Lee even suggested that I could be getting intestinal infections because of my poor immune system. She said that most people do not react to the small amount of bacteria on food but that I could be getting sick from the tiniest amount on MY food. not sure what to think anymore. So many on this board have benn offering good advise. They even suggested the Enterolab gene testing as they do a more extensive test. the blood test I had done only tested for 2 celiac genes and Enterolab tests for more. The thing is....it's not just gluten that is making me sick but so many other things. I try to be so careful and then my gut gets so irritated. That should be the worst of it....it's the horrible toxic feeling I get for days after eating something that I shouldn't have unknowingly.

I'll be seeing Ann Lee this tuesday...and bringing food allergy bloodwork that I had done through York and some that my fibro dr did. I'll also bring an old food diary and see what she has to say. Mu gut is raw again this morning and I was so careful with my meals yestereay. I actually felt ok at one point but then things did not sit well after lunch. I can't figure this out!

Thanks for your response.....what was your neighbor finally diangosed with?

I guess you saw that I had lots of surgeries too! Most of them were to remove adhesions which were formed after my first surgery...(they accidentally severed an artery)....which was one big botch-up!

take care,

[celiac3270]

the only thing that i could add would be to question you as to the possibility, even a remote possibilty that poison is somehow getting in your food.

Are you referring to gluten as poison? Or actual poison? Just asking, cause you referred to your neighbor and I don't know if this neighbor is celiac or not.....

[shanson]

Hi!

I am new to this site - but I have found something that helps with all of our stomach problems due to gluten intollerance, etc. They are glyconutrients - I have taken them for 3 months and am so much better. I still plan on staying gluten-free, but these products are helping heal my intestine. They are completely natural.

[mela14]

How have they helped you? How do you take them? What do they do?

thanks,

Mel

[Bette]

Hi Mel,

I have been on these message boards for about a week now. I am going through the testing now, and awaiting an appt. with a G.I. Your post caught my eye, as we have very similiar symptoms and diagnoses. Have you had any luck with the nutritionist?

I had the blood work, done, and had a slightly positive or equivocal anti-glidian IGG antibody, but all other antibodies were negative. For me I decided to go with Kimball Labs, to check to see if I carry the genetic markers for celiac disease, and I am waiting for the kits to arrive now. You said you did not have the markers for celiac, but as a lot of people have pointed out, enterolabs looks at a lot more. I checked there website, and they will also check for lactose and other common food intolerances. Other than that, the only other way to see what affects you, is to keep a food diary, and do elimination diets, which I know for me ,I am exhausted and the thought of having to write everything down after you eat, then go on a complete restriction diet, eliminating offending foods sounds difficult at best.

Keep us posted how you are doing. And hang in there, I feel your frustration, as I can definately identify with what you are going through.

Bette

[mela14]

Hi Bette,

Good luck to you too with all that you are going through! I had the York food allergy testing and it was very accurate with the foods that I am reacting to. I haven't heard about the Kimball testing.

I kept a food diary for about a month when I was first referred to a nutritionist to help me with a gluten-free diet. I learned a lot from the diary but the dietician was not that hip to all the more intricate issues of a gluten-free diet. I guess we both learned as i was being challenged much more than if she was more familiar with gluten. So, I actually learned a lot by her mistakes.

With so may intolerances it has been difficult to get a good diet in place. I am now working with a nutritionist that is very familiat with gluten. I actually did not make it to the appointment yesterday because I was so sick form whatever I ate the night before. the good news is that she was able to do the appt as a phone appointment. she brought a lot of things to light adn we are now doing an allergy elimination diet. so....right now the rice is out too as it has been to upsetting to my GI tract. I guess the starch is too hard to digest and the pain just lingers! I actually looked like I swallowed a basketball! It is just now starting to settle down. We've also eliminated any type of oil....except a drizzle of olive oil.

As for further testing, if I decide to do any other test it would be Enterolab as they test for more of the celiac genes and markers. My nutritionist thinks it is not necessary as we already know how sick I have been getting with gluten, soy, eggs, etc. I guess this has gone undiagnosed for so long that i became sensitive to so many other foods. When I get sick form gluten or soy it's like I swallowed poison and I am sick and disoriented for days. most of the times I can't even leave the house.

I am hoping that with time a lot of my fibromylagia symptoms might subside. wouldn't that be great?!?

I hope that things turn around for you too. Hang in there and let us know what the test results show. I guess we need to give it time and really stick to the diet. I'm sure that it has to get better with time.