MaryO: Our guest tonight is Barbara Craven, Ph.D., RD, LD.
Barbara is a licensed dietitian in Washington, DC. She currently has a practice treating patients with HIV/AIDS and teaching general nutrition. For many years she has had an interest in holistic nutrition and often uses natural therapies in her practice.
Dr. Craven received her Ph.D. in Food Science from Texas A&M University in 1980 and her RD in 1981. The first years of her practice, she taught at the University level, then went into private practice counseling weight loss and athletic nutrition. Several years ago she became interested in HIV nutrition and now dedicates her skills to helping the under served manage this devastating disease through diet and natural therapies.
She is currently helping write an Evidenced Based Guide for Medical Nutrition Therapy in HIV/AIDS, is writing a cookbook for HIV/AIDS nutrition, is on the Ryon White Working Committee in Senator Ted Kennedy's Office, is Chair of the DC Area Nutrition Alliance and has been invited to speak on the latest developments in HIV nutrition at the National Ryon White Review Meeting this year in Washington, DC.
Barbara's link to us is that she has had Cushing's. Like many, hers was intermittent and symptoms accumulated over many years before she was diagnosed. In November of 2003 she underwent transphenoidal surgery and her entire pituitary was removed. Many of the symptoms you have experienced or are experiencing, she has also. Many of us met Barbara at the UVA Pituitary Days Conference in April, 2004.
Barbara will answer our questions about natural therapies and diet that helps alleviate symptoms and manage weight in Cushing's disease.
Welcome to Cushing's Help and Support, Barbara.
Barbara Craven, Ph.D., RD, LD.: Thank you MaryO, it is good to be here.
MaryO: We're so glad to have you here tonight.
Barbara Craven, Ph.D., RD, LD.: Thank you
MaryO: I'm wondering if your dietary knowledge helped keep you from gaining the large amounts of weight that many of us gain with Cushing's?
Barbara Craven, Ph.D., RD, LD.: I believe it has helped, though I struggled too.
MaryO: Were you able to lose it faster after surgery than most of us seem to?
Barbara Craven, Ph.D., RD, LD.: I have lost 30 pounds since surgery. One of the most important things is to get your hormones balanced.
MaryO: Fantastic! How long ago was your surgery?
Barbara Craven, Ph.D., RD, LD.: I had surgery Nov. 24, 2003
MaryO: Oh - somehow I thought it was longer ago than that.
ChristySmith: Did you develop diabetes during Cushing's and if so did it disappear after surgery?
Barbara Craven, Ph.D., RD, LD.: I had elevated blood sugar levels but it was not yet classified as diabetes. It was more insulin resistance. It did disappear after surgery.
Dietary considerations are very critical to recovery and I will go into detail as we go along.
LynneC: How does one fight the carb cravings that accompany high Cortisol?
Barbara Craven, Ph.D., RD, LD.: The first thing you must do is work to normalize your appetite as much as you can. The thing that helps this most is to eliminate refined carbs, like white flour and white sugar.
Eat small meals, 5 to 6 times a day. Eliminate animal fats, include only olive and canola oil into your diet.
MaryO: How small is a small meal? Could you give us an example?
Barbara Craven, Ph.D., RD, LD.: That is a good point. Do you know the difference between a portion and a serving?
MaryO: I don't!
Barbara Craven, Ph.D., RD, LD.: A serving is a measured amount, like 1/2 cup cooked vegetables or 1 tablespoon butter or oil. A portion is whatever you can fit on your plate of one type of food. If you get a diet book that is for diabetes, it will describe serving sizes. Portions and servings are critical to losing weight.
MaryO: Thanks - what kinds of servings would make up the 4-5 small meals?
Barbara Craven, Ph.D., RD, LD.: Eat as many natural unprocessed foods as possible. Like fresh broiled chicken and cooked broccoli.
Processing takes a lot of the nutrients out of foods and it also takes a lot of the fiber out.
Fiber is another important ingredient in both weight loss and blood sugar control. Soluble fiber is the most important in these. Soluble fiber is found in oats, beans and all legumes, apples and pears, psyllium and flax seed. Soluble fiber helps control hunger and stabilize blood sugar.
The other consideration is to keep tempting foods out of your kitchen and house. Then if you get a craving for cookies, you will more likely substitute something like cooked vegetables.
Tappy: Are there any supplements to take to alleviate some of the symptoms?
Barbara Craven, Ph.D., RD, LD.: That is a good question. I did take supplements and how effective they were I am not completely sure.
I took a good multivitamin, Ca citrate (Citrical Plus), SAM-e, CLA, glucasol, Flax oil, and Vitamin C (500 - 1000 mg).
There is little documented evidence that any of these work, but I do think they helped me some. I can go into more detail about each if you like.
MaryO: If you could tell us what each is used for, that would be helpful. Or how it helped you!
Barbara Craven, Ph.D., RD, LD.: The multivitamin is obvious, Calcium is very important to weight loss and control, also to keeping bones strong. The best form is milk, low fat, but Ca citrate is the next if you cant drink milk.
SAM-e is S-adenosyl-methionine. It is used to treat osteoporosis, depression, liver disease and increases the nuerotransmitters, dopamine and seratonin.
Flax seed oil is great for joints, as is SAM-e, and inflammation, which Cushing's produces a lot of.
Vitamin C is thought to help lower Cortisol though there is no real documentation of this. It does help boost immune function. Glucosol is a product that helps regulate blood sugar. CLA is conjugated linoleic acid and is helpful in weight loss.
Nona: I'm not crazy about artificial cheeses. Can I eat REAL cheese without feeling guilty? How do I work flax seeds into my diet?
Barbara Craven, Ph.D., RD, LD.: You can eat real cheese, it is not what you eat, but how much. Use cheese as a treat, like a piece of chocolate or something like that.
Flaxseeds must be ground to be really affective. If you buy the whole seed, grind it just before you eat it. Put it on cereals or something cold. Do not heat it, this destroys its value. Also, keep it refrigerated, it goes rancid very quickly.
MaryO: At last week's CUSH Conference in Nashville, Dr Scott Isaacs had a list of raw vegetables, like broccoli and cabbage, to avoid to help prevent thyroid issues. Are there any similar foods that Cushies should avoid?
Barbara Craven, Ph.D., RD, LD.: Broccoli and cabbage should only be avoided if they are raw. Cooked is all right. I do not know of any foods Cushies should avoid, especially vegetables. I used to come home from work and steam a whole pot of veggies and use a little butter and seasoning. That would be my dinner.
Xuzuthor: How long did it take them to stabilize your hormones?
Barbara Craven, Ph.D., RD, LD.: You mean after surgery?
Barbara Craven, Ph.D., RD, LD.: I am still working on it. My doctor is great and right away he put me on growth hormone and has titrated it up. My thyroid was stable after a few months. The Cortisol gradually decreased so that after 5 months I only take 20 mg per day. This has also helped my appetite. The higher your Cortisol dosage, the more appetite.
MaryO: Just curious - is Dr Salvatori your doctor, too?
Barbara Craven, Ph.D., RD, LD.: Yes, he is
MaryO: Great :)
AnneNorth: Flax seed oil gave me terrible indigestion, is there anything else?
Barbara Craven, Ph.D., RD, LD.: How are you taking it?
AnneNorth: Straight up 2 tablespoons
Barbara Craven, Ph.D., RD, LD.: With food?
AnneNorth: With my breakfast usually.
Barbara Craven, Ph.D., RD, LD.: Then I would try Omegabrite capsules. These are EPA/DHA in a ratio of 7:1. They will be as helpful as flax. You can only get them on line but they are not expensive. Their web site is just like the name.
AnneNorth: Thanks, I'll give it a try.
LeroyB: I have a situation where Cushing's - the excessive Cortisol - manifests itself in the form of severe anxiety. which then creates its own separate set of physical symptoms ("in fact my classical Cushing's symptoms" are fairly minimal). What natural therapies and diet advice is there for situations such as that, where one needs to primarily address the anxiety? SAMe (really more for depression than anxiety)? GABA? 5-HTP? Theanine? Valerian? Melatonin?
Barbara Craven, Ph.D., RD, LD.: I had the same problems. By the last two years, I was having panic attacks. I would try a multi discipline approach. Diet and exercise and meditation and prayer. Also, see what stressors you have in your life you can do without.
As far as supplements, 5-HTP or SAM-e would be best. Valerian can be taken at bedtime but I would not take it long term. Take honey and bananas when you get really anxious.
Be sure also to get lots of Magnesium. Either in tablet, 4 - 500 mg or foods, lots of green leafy veggies, nuts and beans.
LeroyB: Any thoughts on these suggested immune boosters: Tincture of Myrrh? High-strength colloidal silver? And Echinacea?
Barbara Craven, Ph.D., RD, LD.: I would not do any of these long term as they have more of an immune depressing effect. Green tea, mitake mushroom, rieshi mushroom and lots and lots of antioxidant fruits and veggies are the best immune boosters.
Edithh: I regularly see a naturopath these days whose put me onto some pretty amazing paths (one of them being a liver cleanser - I take with cider vinegar) I had a BLA in 2002 and now, though I worry about potassium. I try to keep levels low but I was wondering if you have any advise?
Barbara Craven, Ph.D., RD, LD.: Clarify BLA for me please.
Edithh: BLA is a bilateral adrenalectomy. I now have Addison's Disease as well as Cushing's. (this may be out of your scope. my apologies if so)
Barbara Craven, Ph.D., RD, LD.: Of course. One of the biggest problems with Cushing's and any disease like this is the production of inflammatory cytokines. The goal is to keep your body as cleansed as possible on a daily basis. High antioxidant foods, blueberries, pomegranate juice, deep green, yellow and red foods help to reduce inflammation and free radicals. There is a list of low potassium veggies and fruits that you should seek. It is found at the USDA web site.
MaryO: I know you're very busy, and there's probably not much profit in it, but would you ever consider writing a "diet guide" of some sort for Cushing's patients pre- and post-surgery? Or perhaps adapt your one AIDS books? I think it would be very helpful for all of us as we struggle with these issues. (or maybe adapt this chat!)
Barbara Craven, Ph.D., RD, LD.: I am flattered that you ask. I cannot promise that I can do this soon. I have so much on my plate. I will keep it in mind though. Thank you for having me. Best to all.
NancyU: I have a problem with sweating --can Cushing cause this? Also I thought that being of Effexor could do it - getting off the Effexor - on 1/2 dose 75 mg -- also does coffee or other drinks with caffeine cause the body to produce excess Cortisol?
Barbara Craven, Ph.D., RD, LD.: Yes, coffee can cause you to produce more stress hormones as does too much exercise.
ChristySmith: I'm on Metformin and Amaryl but they need to be adjusted because they aren't lowering my levels enough even with no sugar. Is it safe to take Glucosol with them to see if they lower before taking more meds?
Barbara Craven, Ph.D., RD, LD.: I would not take Glucosol in place of or in conjunction with your Metformin and Amaryl. Consult with your physician. There may be other reasons why your blood sugar is not being controlled. Meanwhile, try a high soluble fiber diet and no refined carbs. Oh, The Zone diet is OK too.
Nona: I'm interested in any great diet and/or cooking tips you can pass on to us!
Barbara Craven, Ph.D., RD, LD.: If I were to pick one diet to follow, it would be the South Beach Diet. This is too short to go into cooking. Just stay away form fried foods.
WindyWillow: Did you ever suppress on the Dex tests while going through the testing and still be diagnosed with Cushing's?
Barbara Craven, Ph.D., RD, LD.: I did not suppress.
WindyWillow: How long did it take you to get the diagnosis?
Barbara Craven, Ph.D., RD, LD.: Too long. Isn't it always this way? I was first diagnosed in Feb 2003 after many years, 10 or more of symptoms. Then it took until Sept. of 2003 to get a final confirmation.
NancyU: Hi, I am having problems with sweating have you heard anything about this with Cushing's? I thought maybe it was my Effexor -- getting off the stuff on 1/2 dose. Not sure what it is.
Barbara Craven, Ph.D., RD, LD.: I have not heard of sweating as a symptom of Cushing's, however it may be from an ancillary problem. Medications, menopause, hormonal imbalance?
NancyU: What is ancillary?
Barbara Craven, Ph.D., RD, LD.: Something secondary or just along with.
NancyU: I'm not going through menopause and I think my hormonal balance is fine. Do you think it could be an infection.
MaryO: I think if you have Cushing's, your hormones aren't balanced.
Barbara Craven, Ph.D., RD, LD.: I cannot diagnose this but I recommend you look into it further with your doctor.
NancyU: That is true. I finally got my period after 8 months or more.
DianaBourgeois: Any suggestions for healthy snacks to try when taking meds that suggest you eat them with food?
Barbara Craven, Ph.D., RD, LD.: A lowfat yogurt, no sugar, a cup of vegetable soup, a bowl of steamed broccoli or other veggies, a glass of soy milk or regular milk, a small baked sweet potato.
Xuzuthor: I currently likely have growth hormone deficiency (IGF1 of 87 and I'm 23 years old) and I get severe carb cravings. I follow basically the diet you described, but even after stuffing myself I still sometimes need to eat more after being full to be stable (stop hypoglycemic-type symptoms). I eat a high fiber, high protein, low fat, diet (lots of veggies, wheat bran, ground flax seed, nuts, soy protein isolate, 99% fat free chicken), vitamins etc. I am waiting to get tested and treated for GH. Anything else I can do until then?
Barbara Craven, Ph.D., RD, LD.: Do not starve yourself of carb energy. When you get a low on energy, eat a square of dark chocolate or have a glass of chocolate lowfat (1%) milk. It will give you a boost. Get lots of rest too. You need extra.
Canasa: I recently underwent a left adrenalectomy. (Oct 13, 2004) I have been having foggy, dizzy, feelings as well BP problems, both highs and lows. Doesn't make a difference if I am standing or sitting. Checked my glucose levels they are within range, any other ideas why this is happening? My labs show I am not premenopausal and hormones for that have be fine as well my thyroid labs are good. Any ideas? Female 43 years old, with fibroids in my uterus.
Barbara Craven, Ph.D., RD, LD.: I am not looking at your labs but you may have a mineral deficiency such as potassium and or calcium and magnesium. Try to include V8 juice or carrot juice into your diet and see if that makes a difference.
Canasa: Thank You, I have been doing the V8, as well as Gatorade and lots of water. And lots of small meals.
MaryO: Thank you very much, Barbara for suggesting this very helpful chat.
Barbara Craven, Ph.D., RD, LD.: Thank you for having me. Best to all. Good night.
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