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Post by patngin on Jan 26, 2015 15:35:17 GMT -5
Well I thought I would check in. I have been trying to keep up on my nutrition but I am still losing weight. I got to meet my new doctor and she is sending me to a civilian Hemotologist. I am at 139 now. I don't know what to do. I'm not sure how much weight I can lose and still be alive. No one can find anything so far. Maybe this new doc will. My BMI is about 19. I east so much I feel like I am going to pop sometimes. I don't have the runs. Something in my body must be eating up all the calories I am taking in. I've been poked and prodded till I can't hardly stand it. I am taking in over 200g of Protein a day and lots of carbs. I just can't figure this out why it started about a year ago after being at 175 for years. I am kind of feeling hopeless. I need to find a surgeon that takes Medicare that can possibly do a procedure to make me stop. I don't know if my heart will take a major surgery though. I start think about it and seems to be I am going downhill and can't stop it. I am pretty depressed about it. I feel pretty good but I get tired easy. My blood tests are pretty normal except WBC high RBC low Iron Low. The VA Hemo put me on iron supplements but they really bind me up so my doctor is sending me to someone who she thinks is a really good Hemotologis Oncologist. See about getting Iron infusions or injections but that won't solve the weight problem. I can't believe this is happening to me it's been 14 years since I had the BPD-DS and the only time I lost this much weight was my own fault but I came back from that, lost my legs but I came back and gained 55lbs. Gotta be something they are missing.
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Post by newyorkbitch on Jan 26, 2015 15:47:40 GMT -5
Have you tried taking digestive enzymes yet? How many g carbs do you eat every day and what type?
We have been telling you for months to see a hematologist for iron infusions. Glad you're finally listening.
Are you taking the vitalady vitamin regimen?
Why not ask your doctor to have a discussion with someone like Dr. Keshishian, just to run this all by him?
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Post by patngin on Jan 26, 2015 18:38:34 GMT -5
No I am not on the regimen but I am taking the alive vitamins 3 times a day and the vit d from her. I am going in for a cat scan of my head tomorrow because I have been having weird headaches. I have been eating a lot of 4 bean salad and the brown rice and quenoa. Pretty much the only good carbs. Some veggies. At least this doctor is studying up on this particular surgery. Just can't understand why I am not absorbing things. I seem to be absorbing the protein because that level is up and so is the albumin. But like she said I have so many things wrong with me that could be causing this weight loss that it is hard to filter them all out. I think this Hemo will be a lot better then the Chinaman wearing a mask I went to see at the VA.
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Post by newyorkbitch on Jan 26, 2015 18:56:19 GMT -5
No I am not on the regimen but I am taking the alive vitamins 3 times a day and the vit d from her. I am going in for a cat scan of my head tomorrow because I have been having weird headaches. I have been eating a lot of 4 bean salad and the brown rice and quenoa. Pretty much the only good carbs. Some veggies. At least this doctor is studying up on this particular surgery. Just can't understand why I am not absorbing things. I seem to be absorbing the protein because that level is up and so is the albumin. But like she said I have so many things wrong with me that could be causing this weight loss that it is hard to filter them all out. I think this Hemo will be a lot better then the Chinaman wearing a mask I went to see at the VA. Your vitamins are woefully inadequate. Get on the goddamn vitalady regimen. What is the point of telling you the same thing over and over. And I do not appreciate, at all, your racist comment above. Outrageous and unacceptable. Get your shit together if you want any help. I asked you how many grams of carbs you are eating every day. Figure it out. Are you keeping a food log, detailed, of everything you eat? In FitDay or some such program which tracks grams? And if not, why the hell not? What do your labs say for vitamin levels? On the one hand you are wringing your hands worrying about yourself, but on the other hand you are not taking the advice of people trying to help you. What reason on earth do you have not to be logging your food and tracking your grams of carbs? Not to be taking adequate vitamins? If you are absorbing protein what makes you think you are eating enough carbs? Do you think you would be absorbing protein and not carbs? That would be nonsensical.
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Post by patngin on Jan 26, 2015 20:52:35 GMT -5
Well it wasn't really racist just the way I felt about him. I am not racist I was married to a gal half Japanese Half Hawaiian. It's just when you go to the VA you don't expect to talk to a guy that speaks such broken english you can hardly understand him.. No I haven't been keeping track for about a month because it seemed as though it was going no where. The last check I had I was only low on Vit D and I have been taking 50000 mg everyday from VL and adding 50000 of the others that are prescription 3 days a week. Chinaman is not racist haven't you ever gone to the Chinamans for dinner. Thats like saying Mexican is racist. You are what you are. I started keeping track again about a week ago. And he really didn't seem that interested anyway took a personal phone call while he was talking to me.
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Post by newyorkbitch on Jan 26, 2015 21:08:52 GMT -5
If you started keeping track a week ago then tell me how many g of carbs have you eaten every day the past week.
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Post by caprice on Jan 26, 2015 21:20:50 GMT -5
Pat, this question may have already been asked, but is there any chance that the VA, or some kind of social service could get you set up with someone who would be able to advocate for you? You are struggling to eat, probably on the malnourished side, and your thinking isn't as clear as it could be. NYB is an amazing treasure on this board and has been giving you the info that could help get you out of this hole you're in, but she can't make you follow through on it, and maybe the reason you're not following through is that you're too sick and too tired to do so. I knew that I was starving, malnourished, and not getting any better, but I didn't have the mental clarity to DO something about it. It took a trip to the ER and some threats from the people who loved me to start working on a plan to get my health back. IF I'm on the right track about this, I sincerely hope that you are able to get someone to help you.
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Post by bboop on Jan 27, 2015 2:07:17 GMT -5
Pat: I haven't responded to you in a long time, because quite frankly, I thought it was a waste of time. On second thought, caprice made a good point, maybe you are so depleted you can't think straight. NOBODY on this forum CAN DO IT FOR YOU...YOU HAVE TO DO IT FOR YOURSELF.
1) DO WHAT NYB SAYS. Get on the Vitalady regimen. Don't tell me you can't. I'm on Medicare too and I'm on it - plus I take other vitamins besides that regimen.
2) Get to the civilian Hemo immediately...have the iron infusions. I did and it's been six years since I've needed them. I was lucky, most people need more than the initial series. They don't hurt and are easy.
3) Start taking the digestive enzymes immediately. What are you waiting for? Tell the doc you want them and need them. Good grief, why haven't you done that?
Do those things plus what NYB said and then come back and we can talk.
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Post by goodkel on Jan 27, 2015 11:06:26 GMT -5
Chinaman is not racist haven't you ever gone to the Chinamans for dinner. Thats like saying Mexican is racist. It IS racist now. It is nothing like saying "Mexican". The equivalent of Mexican would be "Chinese." For many years, black people were called "colored" by everyone. Unless the name of the restaurant is "Chinamans", using that term to describe a Chinese person is a slur similar to calling someone "colored". No matter how acceptable that term might have been at one time, thankfully times have changed. Obey NYB and get an advocate like Caprice says.
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Post by newyorkbitch on Jan 27, 2015 11:26:57 GMT -5
Chinaman is not racist haven't you ever gone to the Chinamans for dinner. Thats like saying Mexican is racist. It IS racist now. It is nothing like saying "Mexican". The equivalent of Mexican would be "Chinese." For many years, black people were called "colored" by everyone. Unless the name of the restaurant is "Chinamans", using that term to describe a Chinese person is a slur similar to calling someone "colored". No matter how acceptable that term might have been at one time, thankfully times have changed. Obey NYB and get an advocate like Caprice says. Exactly. And no, I have never gone to "the Chinamans" for dinner. I go to a Chinese restaurant.
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Post by patngin on Jan 27, 2015 12:25:35 GMT -5
1298 carbs in the last 7 days for an avg of 185 a day. Well I guess I'm a racist then. I kind of resent the remark but if you think so. It's kind of hard these days to know what is politically correct being the whitey that I am and have been called worse in the military in the 60's but thats another day.
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Post by patngin on Jan 27, 2015 12:48:20 GMT -5
And if I am a racist for saying that, in my opinion it takes a lot more then that, we raised our Grandaughter from 6 months old put her through college and she is 1/2 Mexican, but if that is what you think of me then fine. I'm going in for a CT of my brain and an MRI of my lumbar today. I have been poked and prodded in every place there is and I quit keeping track because stuffing myself everyday to no avail becomes a little disheartening. Maybe it is because I am so underweight that I just can't think straight, you suppose. I judge a person by his actions not his race but your calling me a racist is just as predjudicial as me calling my doctor a chinaman. Hell my cardiac surgeon that I trusted with my life in open heart surgery got his diploma in India. I don't fly a swastika or have SS tattooed on my neck. But from the way you people seem to look at me maybe I should.
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Post by newyorkbitch on Jan 27, 2015 19:13:05 GMT -5
And if I am a racist for saying that, in my opinion it takes a lot more then that, we raised our Grandaughter from 6 months old put her through college and she is 1/2 Mexican, but if that is what you think of me then fine. I'm going in for a CT of my brain and an MRI of my lumbar today. I have been poked and prodded in every place there is and I quit keeping track because stuffing myself everyday to no avail becomes a little disheartening. Maybe it is because I am so underweight that I just can't think straight, you suppose. I judge a person by his actions not his race but your calling me a racist is just as predjudicial as me calling my doctor a chinaman. Hell my cardiac surgeon that I trusted with my life in open heart surgery got his diploma in India. I don't fly a swastika or have SS tattooed on my neck. But from the way you people seem to look at me maybe I should. Why is your doctor's race relevant to the discussion?
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Post by PrettyGirlBounce on Jan 27, 2015 19:50:34 GMT -5
How are you NOT on round-the-clock TPN considering your history and current diminishing weight and BMI? Even if you heed warnings and abide by ALL advice and instruction graciously given by NYB and others over the last few months (which historically you don't/won't), I seriously don't think you can get yourself out of this bind on your own sans round-the-clock TPN AND pancreatic enzymes. Period, point blank. I am speaking from experience, not pulling this out of my ass. GET IN THERE AND DEMAND TPN immediately, and PANCREATIC ENZYMES in addition to the other planned interventions you mentioned in your post. Do not wait. You will die. Any questions?
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Post by PrettyGirlBounce on Jan 27, 2015 19:55:32 GMT -5
^^^^ BTW, this is the nice me talking. Now, this:
If I heard you or anyone use the term "Chinaman" around me, I would flick your lip in public or otherwise. You plead ignorance of the disrespect that term exudes. Fine, whatever. Just don't say shit like that on this site again. EVER. Some "chinaman" might be behind that keyboard helping YOUR troubled ass out.
^^^This is the infuriated me talking. Grrrrr I was trying to get through responding on this thread without the need to address it. Sorry not sorry. I couldn't.
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Post by patngin on Jan 27, 2015 21:15:31 GMT -5
what is TPN
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Post by newyorkbitch on Jan 27, 2015 21:18:16 GMT -5
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Post by PrettyGirlBounce on Jan 27, 2015 21:20:48 GMT -5
TPN is nutrition which is administered intravenously through a PICC line. Copied and pasted from www.nlm.nih.gov/medlineplus/druginfo/meds/a601166.htmlAbout your treatment Your doctor has ordered total parenteral nutrition (TPN) for you. TPN will drip through a needle or catheter placed in your vein for 10 to 12 hours, once a day or five times a week. TPN is used for patients who cannot or should not get their nutrition through eating. Your TPN may include a combination of sugar and carbohydrates (for energy), proteins (for muscle strength), lipids (fat), electrolytes, and trace elements. Your solution may contain all or some of these substances, depending on your condition. Even though TPN often includes lipids, it will not make you fat. Everyone needs calories, protein, and fat, in addition to other substances, to stay healthy. Electrolytes include sodium, potassium, chloride, phosphate, calcium, and magnesium. Trace elements include zinc, copper, manganese, and chromium. Electrolytes are important for maintaining almost every organ in your body. They help your heart, muscles, and nerves to work properly and keep you from becoming dehydrated. Your health care provider (doctor, nurse, or pharmacist) may measure the effectiveness and side effects of your treatment using laboratory tests and physical examinations. It is important to keep all appointments with your doctor and the laboratory. The length of treatment depends on how you respond to the medication. Precautions Before administering total parenteral nutrition, tell your doctor and pharmacist if you are allergic to any drugs. tell your doctor and pharmacist what prescription and nonprescription medications you are taking, especially dexamathasone (Decadron); medications for diabetes, high blood pressure, or heart disease; prednisone; tetracycline; and vitamins. tell your doctor if you have or have ever had diabetes or heart, kidney, liver, lung, or Addison's disease. tell your doctor if you are pregnant, plan to become pregnant, or are breast-feeding, so that the risks and benefits of receiving TPN can be discussed. If you continue to receive TPN while you are pregnant or breast-feeding, your doctor may change the combination of sugar, protein, fat, and other elements. Administering your medication Return to top Before you administer TPN, look at the solution closely. It should be clear and free of floating material. Gently squeeze the bag or observe the solution container to make sure there are no leaks. Do not use the solution if it is discolored, if it contains particles, or if the bag or container leaks. Use a new solution, but show the damaged one to your health care provider. It is important that you use your medication exactly as directed. Do not change your dosing schedule without talking to your health care provider. Your health care provider may tell you to stop your infusion if you have a mechanical problem (such as a blockage in the tubing, needle, or catheter); if you have to stop an infusion, call your health care provider immediately so your therapy can continue. Side effects Return to top Total parenteral nutrition may cause side effects. Tell your health care provider if any of these symptoms are severe or do not go away: mouth sores poor night vision skin changes If you experience any of the following symptoms, call your health care provider immediately: fever or chills stomach pain difficulty breathing rapid weight gain or loss increased urination upset stomach vomiting confusion or memory loss muscle weakness, twitching, or cramps swelling of the hands, feet, or legs thirst fatigue changes in heartbeat tingling in the hands or feet jumpy reflexes convulsions or seizures If you experience a serious side effect, you or your doctor may send a report to the Food and Drug Administration's (FDA) MedWatch Adverse Event Reporting program online [at www.fda.gov/Safety/MedWatch] or by phone [1-800-332-1088]. Storing your medication Return to top Your health care provider probably will give you a several-day supply of total parenteral nutrition at a time.You will be told to store it in the refrigerator or freezer. Take your next dose from the refrigerator 4-6 hours before using it; place it in a clean, dry area to allow it to warm to room temperature. If you are told to store additional total parenteral nutrition in the freezer, always move a 24-hour supply to the refrigerator for the next day's use. Do not refreeze medications. Store your medication only as directed. Make sure you understand what you need to store your medication properly. Keep your supplies in a clean, dry place when you are not using them, and keep all medications and supplies out of reach of children. Your health care provider will tell you how to throw away used needles, syringes, tubing, and containers to avoid accidental injury. In case of emergency/overdose Return to top In case of overdose, call your local poison control center at 1-800-222-1222. If the victim has collapsed or is not breathing, call local emergency services at 911. Signs of infection Return to top If you are receiving TPN in your vein or under your skin, you need to know the symptoms of a catheter-related infection (an infection where the needle enters your vein or skin). If you experience any of these effects near your intravenous catheter, tell your health care provider as soon as possible: tenderness warmth irritation drainage redness swelling pain Brand names Return to top TPN Last Reviewed - 09/01/2010
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PeteA
Full Member
Posts: 221
Surgery Date: 4/15/13
Surgeon: Dr. Phillip Schauer
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Post by PeteA on Jan 28, 2015 14:12:56 GMT -5
I second the ideas of an iron infusion and digestive enzymes. I'm guessing if iron caused you constipation you stopped taking them - hard to tell - but the iron infusion would bypass that problem for a while anyway. Also ask about the enzymes to aid absorption, something like Creon.
Your right you have a lot going on and it might not be a DS related malabsorption issue at all but these suggestions along with a ramp up of your vitamin intake certainly won't make you worse. At this point it sounds like you need to try everything and anything.
Pete
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Post by patngin on Jan 28, 2015 16:09:47 GMT -5
Thanks Pete first I want to apologize if any one took my comment as racist it was not meant to be. I am going to ask the doctor on Friday about creon. I have not heard from the new Hemotologists office yet they are reviewing my records but the reason my new PCP sent me there is because of the problems with the iron supplements which is noted on the chart she sent them. I am still taking them until I find out if I can get the infusions. But I am only taking 1 a day instead of 2. My CT came back and they didn't find anything up there. Just kidding. I have artheriosclorosis in the arteries in my brain, why not I have it everywhere else also. I have an appt with my PCP on Friday for what I don't know I just read it on my chart. You know for some reason I thought beans had lots of carbs but when I enter it on MFP I get 0g carbs 16g protein. I also contacted the UofW concerning revision surgery and they have a couple of surgeons there that would possibly do it. Depending on how high risk a patient I am. I have a lot of health problems. I see according to my BMI I am not considered underweight since my height has change. Don't think I will be trying TPN except as a last resort. So all I can do is wait on the Hemo.
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Post by newyorkbitch on Jan 28, 2015 16:12:09 GMT -5
Thanks Pete first I want to apologize if any one took my comment as racist it was not meant to be. I am going to ask the doctor on Friday about creon. I have not heard from the new Hemotologists office yet they are reviewing my records but the reason my new PCP sent me there is because of the problems with the iron supplements which is noted on the chart she sent them. I am still taking them until I find out if I can get the infusions. But I am only taking 1 a day instead of 2. My CT came back and they didn't find anything up there. Just kidding. I have artheriosclorosis in the arteries in my brain, why not I have it everywhere else also. I have an appt with my PCP on Friday for what I don't know I just read it on my chart. You know for some reason I thought beans had lots of carbs but when I enter it on MFP I get 0g carbs 16g protein. I also contacted the UofW concerning revision surgery and they have a couple of surgeons there that would possibly do it. Depending on how high risk a patient I am. I have a lot of health problems. I see according to my BMI I am not considered underweight since my height has change. Don't think I will be trying TPN except as a last resort. So all I can do is wait on the Hemo. Pat are you entering EVERYTHING you are eating, accurately, on FitDay? I suspect you are not eating enough carbs - complex carbs.
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Post by patngin on Jan 28, 2015 16:44:33 GMT -5
No I've been using My Fitness Pal. I'm googling Fit Day as we speak.
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Post by patngin on Jan 28, 2015 17:00:54 GMT -5
I think MFP is easier for me and it seems to know everything I eat.
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Post by newyorkbitch on Jan 28, 2015 18:03:15 GMT -5
I think MFP is easier for me and it seems to know everything I eat. MFP is fine. How could you not have known that beans are lower in carbs if you have been using it?
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Post by goodkel on Jan 28, 2015 20:21:01 GMT -5
And if I am a racist for saying that, in my opinion it takes a lot more then that, we raised our Grandaughter from 6 months old put her through college and she is 1/2 Mexican, but if that is what you think of me then fine. I'm going in for a CT of my brain and an MRI of my lumbar today. I have been poked and prodded in every place there is and I quit keeping track because stuffing myself everyday to no avail becomes a little disheartening. Maybe it is because I am so underweight that I just can't think straight, you suppose. I judge a person by his actions not his race but your calling me a racist is just as predjudicial as me calling my doctor a chinaman. Hell my cardiac surgeon that I trusted with my life in open heart surgery got his diploma in India. I don't fly a swastika or have SS tattooed on my neck. But from the way you people seem to look at me maybe I should. I did not call you a racist. I didn't get that impression from you. "Chinaman" IS, however, a racist name to call someone. There is a difference between calling a certain term racist and calling a person racist. When I was very young, I overheard my grandmother talking with my mother and she used the word "colored" to describe a person. She wasn't speaking derogatorily about the person, just using it descriptively. I informed her that they wanted to be called "black" now. She threw up her hands and said,"Negroes, colored, and now I have to remember black? I am too old to keep up with it all." She was far from racist, but to her dying day she referred to black people as "colored." It is a "politically correct" issue. But as times and what is considered appropriate lexicon changes, we must change our vocabulary with it. No one can read your mind or hear what is in your heart. All we have are words. And using words that hurt people is never appropriate. I don't believe that that was your intention. But, with a term like "Chinaman" that is the result.
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Post by patngin on Jan 30, 2015 11:30:18 GMT -5
My wife has an appt today with the doctor today and I am sending a note to her and going to ask to try some digestive enzymes. Is creon the one to ask for? Still haven't heard from the Hemotologist they are still reviewing my files.. Going to make an order to Vitalady today. I am pretty sure I am maintaining my weight but I know I am not getting enough carbs. Will try harder today. Which Group do I fit into to get the right thing. 1,2,3,4. The carb problem I am having is can't really find things that I like well enough that will take care of my carb requirements that will not fill me up so much that I can't eat enough protein. I'm trying.
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Post by newyorkbitch on Jan 30, 2015 12:02:31 GMT -5
My wife has an appt today with the doctor today and I am sending a note to her and going to ask to try some digestive enzymes. Is creon the one to ask for? Still haven't heard from the Hemotologist they are still reviewing my files.. Going to make an order to Vitalady today. I am pretty sure I am maintaining my weight but I know I am not getting enough carbs. Will try harder today. Which Group do I fit into to get the right thing. 1,2,3,4. The carb problem I am having is can't really find things that I like well enough that will take care of my carb requirements that will not fill me up so much that I can't eat enough protein. I'm trying. Call the hematologist every day and demand an appointment and tell them you want to discuss infusions. It's bullshit that they are still reviewing your files. I would not try any enzymes until you get your diet correct - that may be the issue. Post your food log here for the last 2 weeks. And frankly, it doesn't matter if you "like" them or not - you have to eat what you need for your health.
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Post by newyorkbitch on Jan 30, 2015 12:12:21 GMT -5
My wife has an appt today with the doctor today and I am sending a note to her and going to ask to try some digestive enzymes. Is creon the one to ask for? Still haven't heard from the Hemotologist they are still reviewing my files.. Going to make an order to Vitalady today. I am pretty sure I am maintaining my weight but I know I am not getting enough carbs. Will try harder today. Which Group do I fit into to get the right thing. 1,2,3,4. The carb problem I am having is can't really find things that I like well enough that will take care of my carb requirements that will not fill me up so much that I can't eat enough protein. I'm trying. And also Pat, something doesn't make sense. You said that you hadn't realize that some beans etc don't have as many carbs as you thought, yet you also said you had been logging all your food and gave a carb count. Did you not see the carbs calculated for the beans you ate? What made up the carbs you were eating?
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Post by patngin on Jan 30, 2015 12:24:44 GMT -5
Yes I saw it right away but I still love 4bean salad. So will keep eating it for the protein. I need to find some good carbs that I can at least partially enjoy and eat more during the day. So is Creon the one to ask for and at what strength.
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Post by newyorkbitch on Jan 30, 2015 12:27:53 GMT -5
Yes I saw it right away but I still love 4bean salad. So will keep eating it for the protein. I need to find some good carbs that I can at least partially enjoy and eat more during the day. So is Creon the one to ask for and at what strength. No. Beans fill you up too much and are not as efficient a source of protein as meat, fish, chicken, eggs, etc. You need to find a way to get in sufficient protein and carbs. Beans are not helping you do that. Read my posts below again.
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