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TinkerbellSwt

Nutritionist From Hospital

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My father in law is a pharmacist at a hospital here in NJ. He ended up talking with one of the nutritionists at the hospital for one reason or another and my celiac disease came up. So she went and got him the pamphlet they hand to all newly diagnosed celiacs. ummmmmm... Im confuzzled.

The guide says to avoid foods that contain: wheat, rye, oats, barley, buckwheat, and malt (except malt flavoring in cereals) ummm.. am I missing something?

It also says distilled white vinegar is a no no, another, am I missing something??

I have to add that a lot of the info is correct, it is not a complete guide at all to celiacs, but I guess for newly diagnosed its a start. But the above info?? from a nutritionist? shouldnt they know??

I also read an article in Oprahs magazine, I dont know which one it was.. but Dr. Katz, specifically stated that you cannot gain weight from a food allergy. Once you know its there, you will not gain weight from it. The woman asking the question had a specific allergy, I dont even remember if it was stated what it was.. I have read on here, quite a few people, including myself, have gained weight due to what I think is now I am absorbing the food that I eat, where I didnt get any of that before. Of course, lack of excercise and sugar adds to it immensely, but is this true?? Can you not gain weight if you find out you have a specific food allergy? gluten wasnt mentioned, it was a very general article..


Stephanie

Gluten free since October 05

son born severly premature due to

celiac

"True love stories never end" Richard Bach

"Did you ever stop thinking and forget to start again?" AA Milne

If you live to be a hundred, I want to live to be a hundred minus one day so I never have to live without you" AA Milne

Swimming Instructor #2 and Town Crier of Rachelville

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The whole thing sounds ludicrous to me.

The nutritional pamphlet is WRONG!

Not gaining weight because of a food allergy? Sounds wrong to me.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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The whole pamphlet/nutritionist thing sounds familiar. I was in the hospital suffering from the effects of prolonged malabsorption when I was diagnosed. They put me on the diet and gave me a pamphlet. I was there for four more days and the nutrionist and dining staff were totally clueless.

The pamphlet said many of the same things you stated, many things which I've since learned are flat out wrong. The nutritionist wouldn't let me have ketchup, mustard, or mayo, even though they were Heinz, French's, and Hellman's brand in the little packets. She also told me that ALL soda pop was off limits. When she declined my Lay's potato chips request and I asked why, she said "they have something in them". I asked what and her reply,(I swear I'm not making this up) was "something that you can't have".

I tossed the pamphlet in the garbage and asked the nutritionist to never bother me again.


John

positive blood tests 2/07

positive endoscopy 2/07

colonoscopy with benign polyps 2/07

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When I went to see my nutritionist I thought it was a waste of time. I felt like I knew more about this disease than she did. She gave me information packets that you could just print off the internet which I already did. I am so glad that I didn't pay the $100.00 dollars an hour out of my pocket. Not all doctors and the like know what they are talking about. That's why I do my OWN homework.


~KIMBERLY~

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I wonder how many people with celiac disease never get really better, it that's the info they get. What garbage. And telling people they can't use buckwheat! That is the only starch I can still tolerate.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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According to the pamplet, buckwheat is a no no too!!! lol, I would have been in trouble a long time ago! I met a wonderful girl who is in college at my gluten free pizza party, her and her mother were such nice people. She, the young girl, is in college, and is studying nutrition, and is going to specialize in celiac. She doesnt want people to go thru all she went thru. I commended her for that. She seemed really dedicated. Thats so great. I would see someone like that if I needed to in a heartbeat!


Stephanie

Gluten free since October 05

son born severly premature due to

celiac

"True love stories never end" Richard Bach

"Did you ever stop thinking and forget to start again?" AA Milne

If you live to be a hundred, I want to live to be a hundred minus one day so I never have to live without you" AA Milne

Swimming Instructor #2 and Town Crier of Rachelville

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First, I am so glad I cancled my appointment with the nutrionist, I really wondered how much help they would be, and we had spent so much money on medical this last year.... I had called to see if it was covered, and my insurence said it depended on how it was billed. No one could tell me how they were going to bill it. My logic was if they can't figure out thier billing how are they going to figure out a complex diet.

Second, I have gained weight before and after being diagnosed. this has been one of my biggest complaints. If I have to have this, why couldn't I have at least lost weight. I'm going to actually have to go on a diet with my diet.


Stomach problems began November of 2005

Gall bladder removed April 2006

Positive Blood test October 2006

Refused endoscope

Gluten-free since January 21, 2007

Positive reaction to diet

The Lord gave, and the Lord has taken away; Blessed be the name of the Lord. Job 1:21b

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Research the nutritionist you will go too. Get advice from other celiac's. There is a nutritionist in this area who is also celiac. My sister is a nutritionist and she is celiac too. They are out there, you just need to find them.

JoR, one of the things we all must remember is, we are not on a diet. We are simply eliminating the foods that are making us sick, but it is not a diet. Gluten free flours are much heavier than regular flour, the foods made with gluten-free flours are higher in calories too.

but Dr. Katz, specifically stated that you cannot gain weight from a food allergy.This makes perfect sense to me--the allergy does not make you gain weight.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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ALL I KNOW IS THIS.....

WHEN I'M THE SICKEST....THE BIG 'D' THAT KEEPS ME HOME BOUND, SO SICK I CAN'T EAT, NEAUOUS AND SICK TO MY STOMACH, FOR 5 WEEKS, I GAINED 16 POUNDS.

WHEN I WORK THE gluten-free / AND ELIMATE THE OTHER OFFENDING FOODS ON MY EATING PLAN...I LOSE WEIGHT...GO FIGURE. :blink:

GUESS WE'RE ALL DIFFERENT AND HAVE TO LISTEN TO OUR OWN BODIES.

JUDY


Judy in Southern CA

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As a result of my husband's illness and due to fact that I need to change careers, for the past few weeks I have been considering going back to school to study to be a nutritionist. This gluten-free misinformation just bothers me.

My only problem is I have never gone to college and I am middle aged and I'd have to "fast track" it. And I have to get grants and/or scholarship funding.

Does anyone know anything about being a nutritionist and what kind of income level they are at? (if you prefer to PM me that's good too).

My only fear is that I leave a 25+ year career to pursue career that albeit important, it cannot support me and my husband (he's too ill to work) - therein lies the problem as we are one-income household.

So if anyone has any advice for me on this, please feel free. I want to "look before I leap."


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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I'm sorry Deb, I can't help you there. My sister is the head dietician of the cafeteria in the hospital she works in, she has one other over her, yet she has worked there now for over 20 years, so her income would not be accurate for you to look into. She took her college courses for dietician while working at the hospital and the hospital paid for much of the courses--she just had to keep a certain percentile. Celiac informed dieticians are very much needed, so it may just be a great field to get into.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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Misinformation is one of our biggest challenges. My encouragement is for everyone to do whatever you can to get the misinformation taken care of: write the producers of the pamphlet, write the people who are giving out the pamphlet. Just say, "I'm concerned about the misinformation..." state what is wrong and maybe provide the resources to back yourself up, and ask them to tell you what they are going to do to fix the problem.

As for the weight gain thing. It's hard to know what to say, without knowing exactly what was said. But for most of us, this is not an allergy but an intolerance/autoimmune response, which is a different thing altogether. Obviously, many of us NEED to gain weight, and avoiding gluten will help us do that. Others of us will have gained weight because of secondary problems of gluten intolerance, and will actually lose weight on the gluten-free diet.


Gluten-Free since February 2006

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Yes, what I meant with the gain weight, no an allergy specifically does not cause us to gain weight. Of course not. I just mean, myself particularly, since going gluten free and my system healing, I am actually gaining weight b/c now my body is actually absorbing foods, before the diet, I was losing weight in abundance!! It was unreal. Once I started healing then I started gaining again. That is what I meant in reference to the article. A food allergy itself isnt going to make anyone gain weight, at least not to my knowledge.


Stephanie

Gluten free since October 05

son born severly premature due to

celiac

"True love stories never end" Richard Bach

"Did you ever stop thinking and forget to start again?" AA Milne

If you live to be a hundred, I want to live to be a hundred minus one day so I never have to live without you" AA Milne

Swimming Instructor #2 and Town Crier of Rachelville

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My father in law is a pharmacist at a hospital here in NJ. He ended up talking with one of the nutritionists at the hospital for one reason or another and my celiac disease came up. So she went and got him the pamphlet they hand to all newly diagnosed celiacs. ummmmmm... Im confuzzled.

The guide says to avoid foods that contain: wheat, rye, oats, barley, buckwheat, and malt (except malt flavoring in cereals) ummm.. am I missing something?

It also says distilled white vinegar is a no no, another, am I missing something??

I have to add that a lot of the info is correct, it is not a complete guide at all to celiacs, but I guess for newly diagnosed its a start. But the above info?? from a nutritionist? shouldnt they know??

I also read an article in Oprahs magazine, I dont know which one it was.. but Dr. Katz, specifically stated that you cannot gain weight from a food allergy. Once you know its there, you will not gain weight from it. The woman asking the question had a specific allergy, I dont even remember if it was stated what it was.. I have read on here, quite a few people, including myself, have gained weight due to what I think is now I am absorbing the food that I eat, where I didnt get any of that before. Of course, lack of excercise and sugar adds to it immensely, but is this true?? Can you not gain weight if you find out you have a specific food allergy? gluten wasnt mentioned, it was a very general article..

Again, I go by Dr. Green's book since he is the Director of the Celiac clinic at Columbia University and doing research on celiac disease...in the back I believe there is a "Myth section" and most of the stuff you seem to mention are there...

B)


IBS 1994

Endometriosis

Hashimoto's auto immune disease

Diverticulosis

Celiac disease April 2006 - neuro symptoms I am assuming from celiac disease

HLA DQ 2 (celiac disease) and HLA DQ 6 (GS) either way my parents made sure I had something!

Insomnia

Hyperflexibility

Daughter 6 y/o (5 at diagnosis) celiac disease via labs (all >100) and flattened biopsy. NO symptoms!!

Daughter 8 y/o with BM ="C" since birth and breast fed, osteopenia, SEVERE eczema up to 5 y/o, now on and off (-) via labs and biopsy. HLA DQ 2 and HLA DQ 8! and possibly ADHD.

Son 3 y/o also HLADQ2 AND DQ 8! Negative panel

Husband MEXICAN and he has DQ 8! His family refuses all and anything with celiac disease, same with his PCP!

"What doesn't kill us makes us stronger..." Right? I think that's the saying.

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I am going to write her (the nutrionist) at the hospital a very friendly letter. Thanking her for the information, there are a few places in the back that I never knew had gluten free stuff, and tell her in a very nice way the mistakes that are in the pamphlet. I hope they listen and hope they learn from it.


Stephanie

Gluten free since October 05

son born severly premature due to

celiac

"True love stories never end" Richard Bach

"Did you ever stop thinking and forget to start again?" AA Milne

If you live to be a hundred, I want to live to be a hundred minus one day so I never have to live without you" AA Milne

Swimming Instructor #2 and Town Crier of Rachelville

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I am going to write her (the nutrionist) at the hospital a very friendly letter. Thanking her for the information, there are a few places in the back that I never knew had gluten free stuff, and tell her in a very nice way the mistakes that are in the pamphlet. I hope they listen and hope they learn from it.

My nutritionist -- a sweet, sweet gal from The Far East put me on "glutinous" rice from the Asian shops here in the UK as a natural DH inhibitor. I could NOT believe my ears. Went along with it but after a week of plus 28 motions per day I dropped off the 7KL bag at her Office with a thank you note. I've since found that I can process Thai and Jasmine rice. I found the list of things to consume left an awful lot to be desired and had the distinct impression that no one was even listening to me. Curiously no one EVER checked with me to see how my diary or exclusion diet was going. :ph34r:

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hi

i've tried the Jasmine rice also and it seems to agree with me.

kind of different taste and texture I think

anyone else try it?

Judy


Judy in Southern CA

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Guest BornToRide

Most doctors are very poorly tarined when it comes to nutrition and musculo-skeletal issues. You'd think that nutritionist would have better training though, but just look at the FDA's food pyramid that's still pretty wrong, probably due to lobbying interest groups..... :angry:

I just read in a 2003 Alternative Medicine magazine that they still recommended high glycemic foods to diabetes patients in 1997 and then wondered why the patients could not get their blood sugar levels under control, even if they ate as instructed....well major DUH!!

Apparently there's still plenty of knowledge missing in this area. In my experience with animals, the healthiest are usually the ones who eat a diet as they were meant to eat by nature. I believe that this is also very true for humans. The more you eat as you were meant to eat by nature, the healthier you will be. I think it's really not more complicated than that.

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BORN TO RIDE--OMG I LOVE YOUR DOG

HOW CUTE IS HE/SHE!!

JUDY


Judy in Southern CA

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hi

i've tried the Jasmine rice also and it seems to agree with me.

kind of different taste and texture I think

anyone else try it?

Judy

Hi there!

I find that I can tweak these two rices nicely both from a textural and flavour angle. Both can be cooked until al dente and add texture or over cooked for a mushy consistency for puddings and cereal. Another trick is an Arabic and Indian trick whereby you scorch the bottom of the rice and cook it until golden. The traditional recipe is to do this in the oven and you have far more control with it (the rice and the scorch). However I have done it successfully on the stove top. (I seal the rice with a layer of tinfoil and the lid once the water is absorbed. Then I leave it on the stove for anywhere from five to fifteen minutes longer on a low electric plate setting. Don't stir or you'll disturb the "goldening" process. Once you gain the desired burn (Scrap down the side of the pot nearest you to check and keep an alert nose for actually burning -- decant the unscorched rice and set aside after fluffing. Take the golden rice break up into lumps and fluff a bit more vigorously to separate, season and flavour with cilantro chopped over it and melted butter.

The Jasmine takes sweetening better. Works well with dried fruits. And is particularly enhanced with cardamom or ground cloves and nutmeg if you can tolerate them. Ginger works superbly with it too.

Hope this helps!

Marcus.

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Hi All,

I finally signed on after reading this message board for over a week.

My husband was diagnosed with Cronh's Disease after spending 5 days in the hospital last month.

We went back for the follow-up and was told he also has Celiac Disease.

This message board has helped soooo much.

I decided to post today because we are going Thursday to see a Dietitian. I thought it would really help us but after reading the comments today, I am not sure. His G. I. office made the appointment and no, we have not researched the Dietitian.

We are a little overwhelmed with all of this. I had never heard of it until last month but he had researched his symptoms and was not surprised.

This may should be under another topic but my big question is...What do you do when you have an attack?

He has meds for D (also on Entocort and Nexium) but is there anything that stops the pain?

Thanks.

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I think the concern about buckwheat is to make sure it is "pure, uncontaminated" buckwheat, and not mixed with wheat flour. For example if you were to go to the local grocery and pick up a mix for buckwheat pancakes, odds are there's wheat flour in the mix. Similar to the oats situation.


Linda, Mom to Ty (11 years old)

Ty was diagnosed by blood test June 7/05

biopsy Aug 11/05, diagnosis confirmed Aug 18/05

Mom, Dad and big brother Celiac-free.

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Guest BornToRide

Judyin - he's my little Terrier mix I rescued in 1997 and I have a hunch he's gluten intolerant also. He gets very bad hot spots when i feed him any grain - kibbles or otherwise. All my dogs are on raw meat diet only since about 3 years and are doing great. The grain based commercial foods just cause too many health problems, from skin conditions to diabetes. Dogs were never meant to eat grains at all, not even veggies. Wolves shake out the intestinal contents of their prey before consumning the tissue and have only been seen eating a few berries and grass - that's it!

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All my dogs are on raw meat diet only since about 3 years and are doing great.

I'm a raw feeder too. That's my little 7-1/2 month old lab mix pup that my sons are holding in my avatar. Where do you find the best deals on your dogs' meat?


Liz

Started Specific Carbohydrate Diet on 8-16-09 because son was diagnosed with Ulcerative Colitis and want to give him moral support.

Diagnosed with Minimal Change Nephrotic Syndrome in 2003. Discovered that going completely gluten-free put me in remission.

I would have despaired unless I had believed that I would see the goodness of the Lord in the land of the living. Psalms 27:13

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Guest BornToRide

Oh, now I see the little black puppy :) I buy Foster Farm chicken at the lowest price possible, usually around 79 - 99 cents per pound at Fred Meyer. If I had more money I would only buy organic for them as well. Marlene's sells ready made raw meats for animals, but it is a bit pricier.

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