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DestinyLeah

The Ultimate Dietitian Search

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My GI has decided that I need to go see a dietitian. Normal, right?

My GI is from Dallas. They have heard of Celiac there.

We live in New Orleans, world capitol of DENIAL (No, really, it's going to hit Florida!)

I have called four area dietitians so far, and my trick is to call and ask to speak with the Doc. I then ask what they know about Celiac. The last one asked me for information.

Please, please tell me someone here has a number for a great Dietitian, in the New Orleans area, who knows what they are doing.

I'm really getting frustrated calling on my days off while dealing with random acts of glutenous joy or getting mango as a sweetener on my gluten free Thai dishes.

Thanks for any help

~Destiny the (unhappy) Baker


Diagnosed with Celiac on April 24, 2007

The bad:

Ovarian Cysts- unable to carry a child

Nerve damage

Severe intestinal damage

Near death experiences

The good:

A new outlook on life

A newfound respect for others who must face challenges that they did not necessarily want to face today

Healthy Cookies

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Destiny:

What do you need help with? I guarantee you that unless you have a dietician that works with the few Celiac centers (like Columbia, or Maryland's, etc), that you have a very slim chance of finding a dietician that knows anything remotely about Celiac. The dietician that works for Dr. Fasano (a leading Celiac researcher) spoke at a recent support group and said that she initially is uncomfortable telling Celiacs what she does, because she KNOWS they are all going to tell her their horror stories with dieticians who know NOTHING about Celiac. So even among the best dieticians, they know that their field is horribly lacking. So, its not just you.

What do you need help with? I can guarantee you that any question you have will be answered here. :)

Laura

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Finding a way to rearrange the food pyramid to not include wheat, rye, barley, oats (they do upset me), oranges, lemons, milk, casein, or fatyy and sugary foods.

Apparently, baked chicken breast with peach salsa and Rice and Shine, to the tune of 1 full plate of food a day, doesn't cut it. The issue is finding good food, safe food, that doesn't make me ill, yet still getting enough of it into my system (more is uncomfortable at best) and getting a variety.

I do not absorb iron, calcium, vitamin K, potassium, or B vitamins well. I am low in all of those areas, and on prescription potassium pills. I'd love to get off those soon, as they make my stomach upset, too.


Diagnosed with Celiac on April 24, 2007

The bad:

Ovarian Cysts- unable to carry a child

Nerve damage

Severe intestinal damage

Near death experiences

The good:

A new outlook on life

A newfound respect for others who must face challenges that they did not necessarily want to face today

Healthy Cookies

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instead of wheat pasta: substitute tinkyada rice pasta (you can get it at whole foods and many other stores) www.tinkyada.com (you can make spaghetti with lean ground beef, onion/mushrooms, and a store bought sauce---many/most are safe)

instead of flour tortillas: corn tortillas.

nuts/peanuts, if you can tolerate them (and check to make sure they are safe) are a good source of protein and nutrition.

If you can tolerate beans....make homemade chili (ground beef, onions, a variety of beans, tomatoes, tomato sauce, mild seasoning)

enjoylife foods makes many gluten-free and other allergen free products (including casein free)

substitute a gluten-free soy milk or almond based milk.

salad with a meat of choice, and oil/vinegar dressing.

potatoes, cut into slices/chunks, lightly seasoned, baked in oven.

tuna is a great staple also!

Once you have healed, your malabsorption issues should go away. That is a classic sign of Celiac, unfortunately. Chances are, you will be able to tolerate lactose again (if you have Celiac damage, you are probably reacting to lactose. When you have healed, many Celiacs are able to tolerate lactose again).

Not sure how well any/all of these will sit with you, but I hope it at least can give you some ideas!

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I am actually noticing a lot of bruises today. Just changed into my PJ's and there are bruises from things like resting my elbows on my knees. Should I be worried about this or just up my supplements?


Diagnosed with Celiac on April 24, 2007

The bad:

Ovarian Cysts- unable to carry a child

Nerve damage

Severe intestinal damage

Near death experiences

The good:

A new outlook on life

A newfound respect for others who must face challenges that they did not necessarily want to face today

Healthy Cookies

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I am actually noticing a lot of bruises today. Just changed into my PJ's and there are bruises from things like resting my elbows on my knees. Should I be worried about this or just up my supplements?

You should tell your doctor. It is probably due to your low vitamin levels but can also ber a sign of things more serious. Check with your doctor to be on the safe side. Also make sure that your supplements are gluten-free. Make sure they do not contain any barley or wheat grass, some vitamins I have looked at in my local health food store say they are gluten-free but do contain these grasses.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Is there a support group in New Orleans? You can try contacting them to see if they can recommend any one. Also, if any local health food stores have gluten-free groups or group meetings in general they may have a dietician who you can call and they might be a little more enlightened. Also, a lot of chiropratic offices are connected to alternative health providers and might have a dietician on staff. There are also certification sites that might help you locate one:

http://www.nutrition.org/

I know a lot of people here say you don't need to go to one and you can learn everything on this site but if you think you'll feel more comfortable on the diet then by all means find one. I went to one and have been put on three supplements and given a ten page list of what would work right now for food and I felt so much better emotionally. For me, it was all so overwhelming at one point I was confused as to what I needed in the beginning and literally lost 15 pounds in two months because I was terrfied to eat anything beyond chicken, rice cereal and smoothies. The nutrionist helped me sort it all out. The supplements alone were a huge hassle for me as I needed to be casein, soy, yeast and gluten-free. So bottom line is, yes you can learn a ton off of this website but if you're going to feel better by meeting with a professional then by all means go for it. Also, I can go back for follow up with her and ask questions that I trust are being answered by a professional and not have to google and try to sort it out on my own. Just my 2 cents. All of that being accurate of course if you find a bonafide nutritionist who has a clue.....


Diagnosed with Celiac Disease February 2007

Finally feeling better than ever!

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All of that being accurate of course if you find a bonafide nutritionist who has a clue.....

I fully agree with what you said! And there are wonderful dieticians out there, but it is often hard to find one who knows about the diet. If you find one, I definitely would recommend it....I wish I had one when I was dx'ed.

That being said, if you can't find one, and you "settle" for one, it may be worse than not going. I went my 3rd week of dx, and left in tears, because she knew so little, and gave me what I already knew was incorrect information. It only increased my feelings of isolation at the time.

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My multi had gluten, but I found a gluten free one on the Whole Foods list Happygirl gave me. I'm picking it up today. This gets so hard to cope with sometimes.

The nearest support group is not that great for me because it is in Baton Rouge on weekdays. I can't make it out there most of the time.


Diagnosed with Celiac on April 24, 2007

The bad:

Ovarian Cysts- unable to carry a child

Nerve damage

Severe intestinal damage

Near death experiences

The good:

A new outlook on life

A newfound respect for others who must face challenges that they did not necessarily want to face today

Healthy Cookies

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I am a dietitian, if you have any questions you can ask me. You can also get a lot of help all all of these forums from a lot of people. If you have specific questions you can ask here or I can send you me email.

Happy to help if you need it


Positive blood work

Negative biopsy

Positive dietary response

Gluten free since March 2007

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I have a FANTASTIC dietician. Unfortunately, she's in Louisville, KY. She specializes in Celiac, attends all support group meetings just as a "go to" person -- she's pretty amazing. What KNOWLEDGE.

I'd shy away from nutritionists -- not that I think they're all bad, but I had two really bad experiences with them -- and I ended up spending a LOT of money on things that made me REALLY sick. Now I only buy Freeda vitamins, and Eskimo3 fish oil because it consistently has the lowest mercury levels and states on the package that it's gluten-free. With the Freeda vitamins, I am on a "mitochondrial cocktail" that the geneticist prescribed. You wouldn't BELIEVE how many B vitamins and CoQ10 I have to take. A three month supply was only $130. I thought it was amazingly low-priced, considering how much I bought.

I hope that you can find a good dietician in your area -- it will DEFINITELY be money well-spent.

Good luck to you -- I'll keep you in my thoughts and prayers (I've definitely become more spiritual since all this sickness garbage)

((((((((((Hugs)))))))))),

Lynne


Lynne

Courage does not always roar. Sometimes it is the quiet voice at the end of the day that says, "I'll try tomorrow".

"There's not a word yet, for old friends we've just met. Part Heaven, part space, or have I found my place? You can just visit, but I plan to stay, I'm going to go back there some day." Gonzo, in the Muppet Movie

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I am on several prescription vitamins. Most notably, potassium. I just don't keep it in my system well. I am even taking supplements because it gets so low I can feel my muscles stop working and my heart starts to get really irregular, and I know that a seizure or fainting spell is hot on the heels. My boss commented today that I looked frazzled, to stop and see if I needed a break and a potassium pill. I did, but I couldn't see it at first. It's like that sometimes.

I have started eating more fruits and veggies, and doing some unsavory things to try and stimulate my appetite. My friend told me that her nutritionist said to eat more fiber to stimulate appetite and bowel regularity. i was not very hungry, and a prisoner to the bathroom. Ugh.

My GI is angry because I missed a follow up, but I got called in and needed to pay my rent :( Can' always do what I need to.

I have been working like crazy lately, and need super fast, easy meal ideas that pack a calorie punch and have a lot of natural minerals and vitamins in them, but keep well in a lunch box and do not need a microwave. I just can't put as much in as I am working out, and the tiny selection of semi safe food at work wasn't doing it, but soggy PB&J and frozen stuff won't, either.


Diagnosed with Celiac on April 24, 2007

The bad:

Ovarian Cysts- unable to carry a child

Nerve damage

Severe intestinal damage

Near death experiences

The good:

A new outlook on life

A newfound respect for others who must face challenges that they did not necessarily want to face today

Healthy Cookies

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Oh, and I have to get 3 spots removed and biopsied for DH next week, and another for cancer. Joy and rapture.


Diagnosed with Celiac on April 24, 2007

The bad:

Ovarian Cysts- unable to carry a child

Nerve damage

Severe intestinal damage

Near death experiences

The good:

A new outlook on life

A newfound respect for others who must face challenges that they did not necessarily want to face today

Healthy Cookies

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I guess instead of getting my associates in Nursing I need to go to school to be an Ultimate Dietitian. :rolleyes: They still can make money

Donna


Fecal Antigliadin IgA 21 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 13 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow's milk) IgA antibody 12 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 0501

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)

You can teach an old dog new tricks!!!

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Is there any chance at all that you're coming to the Cleveland area any time soon? I haven't found a doctor yet, but I did locate a dietician who has celiac and am planning to go to her. She's at a hospital called Metro Health Medical Center.

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