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jenglynn

How Many Of Us Chronically Have No Appetite?

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HI Everyone!

I think I have suffered from my Immune Deficiency Disorder and my Autonomic Dysfunction/POTS/Whatever you want to call it, my whole life, it was not diagnosed technically until this last August (diagnosed with POTS via TTT at local hospital) and at Mayo with Immune System Disorder (still undefined), EDS and Severe Autonomic Dysfunction just in December.

I've always had symptoms of these disorders as long as I can remember. Symptoms have waxed and waned but never with the severity I am having now. Back in April this "flare" I guess we could call it began. Since then, I have NO appetite. It has just gotten progressively worse and I just have to force anything down just to get the bare minimum calories I need. I basically survive on Ensure and Gatorade and pudding once in a while. I have a very difficult time eating any "real" food because of swallowing issues and really dry mouth. I tried to eat a breadstick the other day and gagged and couldn't even swallow it it. Not to mention, I am just NEVER hungry. I could honestly go a week without eating, and be perfectly fine. This is a constant battle because I KNOW I need to eat but if I take a bite or two of any real food, I am full and can't eat another bite. I have had this happen a few times in my life but never for this long. I have lost 30 pounds in the last couple of months and I know I don't have much more to lose. Technically I am still okay in the weight dept. I think (I am 5'3 and 109 pounds which sounds pretty normal and not "underweight- but I usually weigh in the 125-135 range which may seem a little high for my height but I am very large chested and seem to look better in that range in my opinion). At the weight I am now, my eyes are sunken in, ribs show, hip bones stick out.. I am still "okay" but doctors are constantly complaining about my weight loss.

How many of you just have NO appetite and does anyone have this issue like me where it seems to me a new chronic symptom that isn't going to change? This has been 9 months now and it has only gotten worse, not better. I am thirsty, and get plenty of fluids by the way... but food- especially anything solid is a whole other story. I am interested to hear your stories and how you get the calories you need.

Thanks! JEN

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Have you tried the elimination diet ? Ideally, we'd all be eating all natural foods that our bodies recognize as foods but in my opinion

you should transition to this slowly to avoid withdrawals. Fwiw. The chemicals in gatorade and ensure would make me sick.

In my opinion, losing 30 lbs in a couple of months isn't a good sign even if you're within normal weight limits. I believe this

means your body has been in starvation mode for all this time which causes stress on your

adrenals, heart, kidneys, etc.

Fwiw. I've always had to work at keeping my weight up. I feel horrible if I drop too much weight and am in ketosis

for a few days. Fats, nuts and seeds mainly, work for me ..

Kefir, yogurt, fermented foods, or a good probiotic have helped me. I noticed during my h pylori infection stage

that I couldn't swallow and kefir and fermented cabbage seemed to help.

As for lack of appetite, I think your body could be in starvation mode and the only way to break this cycle is

to eat. You may want to try a nutrituonal replacement

along with your food. The only one I ever didn't feel sicker from was metagenics ultra clear made with

rice.

Tc .. D

Edited by MomtoGiuliana
medical advice

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I actually have the opposite problem in that I have days when I am ravenous no matter what I eat but I agree that the answer is the same. We need natural food with as few chemicals as possible. All of these additives and chemicals are not good for people whose bodies function normally. Just imagine what happens to our bodies that don't function normally!

If you can tolerate the texture of pudding then maybe you could start with some all natural smoothies or creamed veggies. As the good food gets in your system maybe your appetite will increase and you will take in more nutrients.

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I have the same problem, to a degree. I have to try hard to keep my calories up so that I don't lose more weight. Right now I'm 5' 8" and weigh around 115-118. I know I need to put on some weight, and my doctors complain about me being too thin, but I eat more calories than my nutritionist tells me I need and I still don't gain any weight. I know I'd feel better if I could add another 10 pounds, but I just don't seem to be able to gain it. Do you know how many calories your body needs and do you keep a journal or keep track of the calories you eat? That's helped me. I eat about 1700 calories a day, and sometimes it takes eating some not so healthy stuff to get up there, although I try my best to have the healthiest diet I can have. I just tend to crave carbs when I'm actually hungry.

Perhaps it would help to see a nutritionist?

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My mom struggles to maintain weight because of her carcinoid syndrome. She has taken to drinking tube feeding orally in between eating as much protein as possible (mostly chicken, eggs, and some fish or red meat). She can't tolerate ensure unfortunately. I'm sure with all of your hospitalizations, you've already seen a dietician. Can they give any suggestions for increasing your nutrition intake, especially through your liquids?

Can you try anything like domperidone, which can help if you have problems with gastric emptying?

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I have the opposite problem. I'm so hungry all the time and have gained 10 pounds with this flare. It is so hard for me to lose any weight even if I diet.

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I have had gastroparesis for over 8 years and have struggled with eating issues since then. Most of the time, I had an appetite but couldn't eat because I was nauseous. However, last August I became ill with a gastroparesis flare that lasted over two months. Since then, I have had absolutely NO appetite, which is rare for me. All I want to do is drink, eat pudding, or suck on hard candy. Because of my gastroparesis, I can't drink Ensure because of the fat content, so I try to drink a Carnation Instant Breakfast, but sometimes that is pushing it. I suffer from constipation frequently, so Miralax is my friend. I do take a Centrum daily to ensure I'm getting all the vitamins I need. I see my GI tomorrow and I'm going to discuss this problem with him, but I know there's no solution.

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This is frustrating.. and I don't think I am underweight by medical standards (although my hubby drastically disagrees). Being 109 lbs at 5'3 is not all that alarming... but my normal weight has always been between 125-145, in that range. I am pretty large chested (I wear a 36 F cup) and unfortunately after losing all of those 30 pounds... NOT a pound came off the boobs! Hardly seems fair! I tend to be a bit bigger and curvier so 109 is a very low weight for me. 120's I think is even a bit low. I think I look best in the 130's... At 135 I wore a size 6 and that seemed to be a pretty healthy weight. Getting into the 140's I start to look a little chunky.

I did speak to a nutritrionist who saw me in the hospital a couple weeks ago- I was pre- menstrual and I always gain 5-10 pounds of water pre period and lose it during my period. So when she weighed me I was 117 lbs and she actually said I was overweight so the whole point of her visiting took a turn. Trying to "limit" calories, my ideal weight is 110 lbs according to her BMI chart so I really did not get the info I was needing. I told her, regardless of what she thought of my current weight, I have lost 30 pounds pretty quickly and I need ideas to get enough calories to maintain. I TOLD her I was premenstrual and would lose 5-10 lbs with my period (she didn't believe it was possible)- well I was dischargede at 119 and at the end of my period I was down to 109... Just dislike so much when these people follow their beloved charts but won't look at us as individuals. Obviously, with the size of my chest I am not healthy weighing 110 pounds. I look ridiculous.

All she told me is that I can receive everything I need from Ensure every day and not ever have to worry about my health as long as I am getting enough/or not too many calories to maintain a healthy weight. I kept going back to the 30 pound weight loss and how I have to bring that to a stop and she just said the Ensure would be fine. But the appetite thing... HUGE issue. Not only do I never have a desire to eat. NOTHING sounds remotely appealing. Not to mention I suffer from a swallowing dysfunction and VERY dry mouth... so eating pretty much any real food is a challenge. My hubby usually makes me one very healthy smoothie a day that I drink. I drink at least 2 more Ensures.. and then I eat either yogurt or pudding. I am not able to swallow anything else.

Another question I asked her... which of course she had NO clue about what I was talking about.. maybe some of you do! If we have tachycardia ad our heart rates are high for a significant part of the day... should we increase our caloric intake as if wee were exercising because our heart is working harder or no? She said she had never heard of such a thing so I should be at about 1100 calories a day. I think I should be closer to 1500-1700. I requested another consult who told me exactly the same thing. My husband about had heart failure when they advised I lose about 10 lbs.. lol. AND lower my calorie intake to 1100 a day. But I was just curious if anyone has had it suggested that because of our hearts working so hard if we need extra calories to compensate???

Thanks

Jen

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I also am having this problem now with losing weight. In the six years that I have had pots I have lost 33 pounds, which doesn't seem that much, but I have never been overweight. Now I am reed thin. The doctor's are very worried, because now I have no weight to lose if I should have something go wrong. I also have no desire to eat. I eat because I have to. I eat often and small meals that way it doesn't get overwhelming. I am on a high fiber diet of veggies and fruit, with a small amount of protein. This keeps my digestive working just great, but not great for gaining weight. It seems you resolve one problem and it creates another. I'm 5'6 and 119 pounds, you can see almost every bone in me now.

Maggie

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Hi jenny,

Your experience with a nutritionist mirrors what many people have said.

Sorry to hear you're having such a tough time right now. At the risk of beating a dead horse,

have you considered seeing an integrative doctor, both md and holistic ? They look for causes for illnesses and

think outside the box .. Dr oz one of the best known but he has other well known ex traditional

medical only professionals on his show. Dr mark hyman is another good example.

I'd recommend getting tested for celiac disease too. When I first started going to my celiac

support group meetings, I could barely make it because my body was so weak. This is all

too common for newly diagnosed. Many of us have been very ill for years before we're diagnosed.

Needless to say, most of us were very upset when we were finally tested ...

It may not be that of course but it's one angle I know of that's being overlooked by the medical profession.

Tc .. D

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JenG,

1100 calories? Are you kidding? I've always read that anything below 1200 calories can be dangerous to your health. There are some great tools on the Internet where you can plug in your height, weight, and age, gender, that will give you a decent picture of how many calories you need to maintain your desired weight. I don't know your age, but I went to the Mayo calorie calculator (there are many on the Internet) and put in your height, gender, and weight as 110. To maintain that weight, being 'somewhat active' shows about 1500 calories. You can insert the weight you'd like to be, pick your activity level, and it will calculate your calories for you. You can also find BMI charts on the web, although as far as I understand, those are mainly loose guidelines since they vary so much with muscle mass.

I don't think that the tachycardia burns calories like exercise does, otherwise there wouldn't be so many doctors out there who advocate exercise as a way for us to possibly improve our health. My doctors are very adament about trying to be as active as possible. You can PM me if you'd like...

Cheers,

Jana

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It seems that perhaps this nutritionist had no clue about your underlying disorder, and didn't know to acknowledge your body proportions. Just like doctors, it can take some looking around to find a nutritionist who can help with your specific situation. My mom has struggled with keeping weight on with her carcinoid syndrome, and had seen several nutritionists until she finally got some good advice from the nutritionist who works for her carcinoid specialist. Not all nutritionists are the same.

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I have chronically no appetite, as well a chronic severe nausea, for many years.......i can lose a good 10-15 lbs in a week...... if it weren't for marinol, id be skin and bones...... it's the only thing that works for me. If i could just get it covered, since it's a whopping 700 a mth..... ugh.

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I am constantly nauseated, and never seem to have an appetite either, but, I know, to survive, I have to eat:o). I weigh a 105# and I am 5' 5''. I've lost about 10 # in the last year. Protein is probably a big factor, since I am not a big meat eater. :) I also have GI troubles, so malabsorption could also be a problem. I eat many small meals, because if I eat too much at any given time, I end up suffering the consequences, cramping, diarrhea. I do exercise, because I know I have to in order to stay healthy, and I think it is helping me develop some hunger on occasion, (even though I push myself to do it). Because I don't eat much, I find that eggs are a good source of protein, along with fish, chicken, beans and nuts. Keep in mind that when you drink alot of fluids that that will satiate your appetite, if you have one, so that is probably the reason that you aren't hungry, and if you are dizzy at all, like me, that in itself will put you over the edge of nausea! Even though Ensure is full of nutrients, the iron in that drink could cause stomach issues. I've been told that Boost tastes better, and the colder the better, but of course if you have GI issues, cold can also cause gastric emptying, too:o). I have decided that medicine is an art and a science, and if you are right and left brained like me, :wacko:, you'll somewhat understand what I am talking about. You know your own body better than anyone else. Experiment with different foods, but change something one at a time, like the doctors tell mothers of babies that have food allergies. Take it as one of life's challenges. I love a challenge ;) Hope you are able get the proper nutrients in the long run.

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Have you ever been tested for gastroparesis? This could explain the lack of appetite, and it would explain why you feel so full after eating just a little bit of food.

I hope you can find some answers and a better nutritionist. There are some good ones out there.

Rachel

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Thanks for all the wonderful advice. I think I will try to meet with another doctor- an integrative MD I think was mentioned. I like the idea of someone who is looking at the whole issue. I don't feel like I am skin and bones but the doctor looks only at that 30 pound number of "unintentional weight loss" and becomes concerned and I do appear thin I guess. Every medical record I read says "Jennifer Glynn appears to be thin, chronically ill and blah blah blah." But at 5'3 and 109 not dangerously so... except for like I said I have a different body type that the nutritiounists refused to account for. Purely BMI based. Many of you who replied are MUCH thinner than am. Asking me to lose weight was pretty silly I thought though.

I have never heard of an integrative doctor around here but will start searching. I have never had ANY "tummy testing" done because other the than lack of appetite and feeling full so quickly, I have never really experienced any gastric type of distress that so many of you suffer from daily. My dry mouth and swallowing issues also contribute a LOT to my eating problems because unless it is liquid or very soft, I can't eat or swallow it. This has gone on so long, since April, I am just not sure it will ever go away. I wish I could explain it, but just the thought of eating anything is so unappealing. I only eat because I know I have to in order to survive. It is really shocking to me that I would continue to lose weight while I am so bed ridden and can do very little in the way of exercise. You'd think I would be gaining a TON but not expending much in calories at all.

Thanks!

Jen

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My daughter is the same way. She has been this way since birth. She will soon be 14. The only thing that has helped is Periactin. She started on it this last summer. She now has an appetite and eats, but it has it problems, because it makes her sick to eat so much.

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