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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Guest Robb Wolf

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What a great thread. So glad you decided to check this place out. Thanks.

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Hi Robb,

I've experience an extreme loss of appetite. Before I figured out the celiac, I was ravenously hungry, and ate constantly. Once I went gluten-free back in January, it was like someone flipped a switch and my appetite disappeared. I had a bunch of mixups with my insurance and referrals and ended up throwing in the towel and going gluten-free three weeks before my biopsy because I just couldn't stand it anymore. I told my GI doctor about my lack of appetite before my biopsy, so with my dad having died of stomach cancer (mom died of breast cancer, btw), he was looking for any problems related to that during my celiac biopsy. He said I had a couple very small benign polyps (less than 1/2 cm) and that was it. He said that my loss of appetite was most likely part of the healing process and there wasn't anything he could point to that would be causing it.

Now it's six months later, and my appetite is still pretty much nothing. I completely forget to eat because I don't really get hungry anymore. It's only when I realize that I'm getting a headache or that I'm having trouble concentrating that I realize I haven't eaten.

When I do eat, it tends to make me kind of queasy, like a brick sitting in my stomach. Even when I eat something light. For example yesterday for dinner I made chicken with just some seasonings from Whole Foods, some red potatoes with just some salt and pepper, and a green salad with a little bit of gluten-free ranch (dairy doesn't bother me at all). Very small portions; half a chicken breast, three red potatoes and about a cup of greens. Ugh. In my stomach it felt like I had eaten wet cement. Blech.

I've never been one to starve myself to lose weight. Since I know that my appetite is so weird right now, I try to eat a couple food groups combination. Like tuna burgers with lots of celery, meatballs with some finely chopped spinach, chicken salad. Kind of a two for the price of one thing. Making every bite count since I'm not taking too many bites.

A lot of the time though I just eat something quick (gluten-free junk food) because I don't even like the smell of food cooking most of the time.

I'm actually starting to identify with how anorexics must feel becuase I don't even enjoy the process of eating. The feeling of chewing, swallowing, and the food in my stomach is just gross. We've had a few discussions about some people with anorexia actually having undiagnosed celiac, and there are a few people here who had personal experience with that. There are some people on here who also have the drop in appetite after going gluten-free, but none of us really have any answers for each other. Just a "me too."

I was overweight back in January, and I've lost 20 pounds since then, which puts me at curvy rather than overweight. I'd still need to lose another 15 pounds to be thin again. At my lowest adult weight (at 27) I was 40 pounds lighter than I am now, but I'm not interested in being that thin again. In fact I'm happy with curvy, to be honest. With my family history, I'm more concerned with healthy than looking like a supermodel.

I'm getting really concerned about my appetite, and would like to be able to do something about it. I want to enjoy eating again.

Any suggestions would be welcome.

Nancy

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She just did a blood test.

Nicole

It's my understanding, and i could be wrong, that you'd have to test your hair to get an accurate reading for mercury, since the metal molecules can stick to the inside of cells and not show up in urine or blood.

I'm not trying to be a pest - I just wondered if you'd gotten your hair tested. Greenpeace is running a mercury testing program whee for $25, you can get a kit to send in some hair and they'll send your results.

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It's my understanding, and i could be wrong, that you'd have to test your hair to get an accurate reading for mercury, since the metal molecules can stick to the inside of cells and not show up in urine or blood.

I'm not trying to be a pest - I just wondered if you'd gotten your hair tested. Greenpeace is running a mercury testing program whee for $25, you can get a kit to send in some hair and they'll send your results.

Interseting,

I will be needing to go back to my doctor for my hipd and I will mention this to her. I did check out the side effects of Mercury poisioning and thatnkfully I do not have anything close to it.

Nicole

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Guest Robb Wolf
Hope you can help me and this is long.

I should give a bit of history here. about 4 years ago I went back to college due to a shift change. At that time I was 28 and around 255-260 pounds and boy did I feel like a whale out of water being around all of those 20 year old, not having any children sticks. I decided I needed to do something about it, went on atkins and lost 75 pounds in two years. I was walking on the treadmill, biking and lifting weights. About 2 years ago my wieght lost was stalling so I switched to Body for life. I loved the increased variety of foods but that is when the problems started. I was getting very gassy, constipated and bloated and it just got worse. After about a year and a half we finally figured out it was celiac disease and I have been gluten free for months (except for the rare slip up).

About the same time as figuring this out, I was also diagnosed with arthritis in my hips (I just turned 33 and was born with my hips out of socket which is what the therapist thinks caused it) but at the same time I got severe brusitis in them as well from running on the treadmill to try and break though the year long plateau. I had to take some time off of cardio to let them heal but they still bother me. I try to make sure I stretch really good but I am not always the best at it but I am trying. I should go back to my doctor and see if there is anything stronger to combat the pain. I have been biking and walking (no treadmill running ever) for about 2 months now.

As a result of taking the time off I have gained 13 pounds and it bothering me to no end. When I stopped doing so much cardio i also did reduce my calorie intake. I do not eat wheat replacement products. I do have about 8 nut thin crackers a day and use gluten free flour occasionally to make breaded chicken. Now that I do 45-60 minutes of cardio a day I should be losing weight but I am not and I cannot figure out why and I need some help. I do eat protein with every meal, eat lots of vegis and have fruit everyday.

I have been keeping a fitday journal for the past 2 years. Some months I skipped because I tried to just eat in portions and not worry about calories but now I am tracking them again since I think I should be eating more. I am 33, a female 5'8" and 196 pounds and am getting so frustrated and need help. I do lift weights and was doing really good for a while but since the injury that has wained a bit.

Any suggestions you could give would be greatly appreciate it.

Nicole

fitday journal http://www.fitday.com/WebFit/PublicJournal...?Owner=gunner73

Hi Nicole!

I checked out your fitday journal. My only concerns nutritionally are the myoplex shakes and cheese. Both contain dairy and the regular myoplex packs quite an insulin spike. Body For Life is pretty good stuff but it recommends too many carbs for many people. For exercise we need to figure out some movement that does not irritate your hips. Does your gym have a concept 2 rower? This is what they look like:

http://www.concept2.com/05/default.asp?bhcp=1

I think circuit training could be just the ticket for you. You can do push-ups from your knees or against a wall, squats lunges etc. You can check out www.crossfit.com for exercise ideas. The workouts as written may be too much but you can but the numbers and modify movements. They have an exercise video section on the side. It looks like burly stuff but we modify these workouts for anyone.

So my 2 suggestions are:1- try replacing the myoplex with an omelet or some other “real” food and 2-add some variety tot your training I like some circuits. If you have questions on how to do this just let me know.

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Guest Robb Wolf
Hi Robb,

I've experience an extreme loss of appetite. Before I figured out the celiac, I was ravenously hungry, and ate constantly. Once I went gluten-free back in January, it was like someone flipped a switch and my appetite disappeared. I had a bunch of mixups with my insurance and referrals and ended up throwing in the towel and going gluten-free three weeks before my biopsy because I just couldn't stand it anymore. I told my GI doctor about my lack of appetite before my biopsy, so with my dad having died of stomach cancer (mom died of breast cancer, btw), he was looking for any problems related to that during my celiac biopsy. He said I had a couple very small benign polyps (less than 1/2 cm) and that was it. He said that my loss of appetite was most likely part of the healing process and there wasn't anything he could point to that would be causing it.

Now it's six months later, and my appetite is still pretty much nothing. I completely forget to eat because I don't really get hungry anymore. It's only when I realize that I'm getting a headache or that I'm having trouble concentrating that I realize I haven't eaten.

When I do eat, it tends to make me kind of queasy, like a brick sitting in my stomach. Even when I eat something light. For example yesterday for dinner I made chicken with just some seasonings from Whole Foods, some red potatoes with just some salt and pepper, and a green salad with a little bit of gluten-free ranch (dairy doesn't bother me at all). Very small portions; half a chicken breast, three red potatoes and about a cup of greens. Ugh. In my stomach it felt like I had eaten wet cement. Blech.

I've never been one to starve myself to lose weight. Since I know that my appetite is so weird right now, I try to eat a couple food groups combination. Like tuna burgers with lots of celery, meatballs with some finely chopped spinach, chicken salad. Kind of a two for the price of one thing. Making every bite count since I'm not taking too many bites.

A lot of the time though I just eat something quick (gluten-free junk food) because I don't even like the smell of food cooking most of the time.

I'm actually starting to identify with how anorexics must feel becuase I don't even enjoy the process of eating. The feeling of chewing, swallowing, and the food in my stomach is just gross. We've had a few discussions about some people with anorexia actually having undiagnosed celiac, and there are a few people here who had personal experience with that. There are some people on here who also have the drop in appetite after going gluten-free, but none of us really have any answers for each other. Just a "me too."

I was overweight back in January, and I've lost 20 pounds since then, which puts me at curvy rather than overweight. I'd still need to lose another 15 pounds to be thin again. At my lowest adult weight (at 27) I was 40 pounds lighter than I am now, but I'm not interested in being that thin again. In fact I'm happy with curvy, to be honest. With my family history, I'm more concerned with healthy than looking like a supermodel.

I'm getting really concerned about my appetite, and would like to be able to do something about it. I want to enjoy eating again.

Any suggestions would be welcome.

Nancy

Nancy-

Interesting stuff. I notice my mom (also celiac) has a terrible time eating. No desire for real foods, I have to really pester her to get some of the junk out. Your description really puts that into perspective for me.

A few ideas come to mind:

1-acupuncture/chinese herbs- sounds crazy but after my diagnosis this really helped to get my digestion fired up again. The herbal concoction I had to drink was pretty awful but it helped.

2-Americanos. A coffee drink that is espresso and hot water. They are quite bitter but with a bit of a chocolate under taste. Don't add sweetener! Bitter flavors really stimulate the vagus nerve and that can fire up the appetite.

3-Soups. I know the whole chewing/mouth feel thing can be overwhelming, particularly with protein sources. Perhaps a chicken/veggie soup that is pureed (sp?)? You could even serve this cold since it is hot weather. Garnish with avocados or olive oil to puff up the caloric content.

The only other thing I can think of is to start bumping up your activity level. That can also help normalize appetite.

Let me know if any of this helps and don't hesitate to ask further questions.

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Nancy-

Interesting stuff. I notice my mom (also celiac) has a terrible time eating. No desire for real foods, I have to really pester her to get some of the junk out. Your description really puts that into perspective for me.

A few ideas come to mind:

1-acupuncture/chinese herbs- sounds crazy but after my diagnosis this really helped to get my digestion fired up again. The herbal concoction I had to drink was pretty awful but it helped.

2-Americanos. A coffee drink that is espresso and hot water. They are quite bitter but with a bit of a chocolate under taste. Don't add sweetener! Bitter flavors really stimulate the vagus nerve and that can fire up the appetite.

3-Soups. I know the whole chewing/mouth feel thing can be overwhelming, particularly with protein sources. Perhaps a chicken/veggie soup that is pureed (sp?)? You could even serve this cold since it is hot weather. Garnish with avocados or olive oil to puff up the caloric content.

The only other thing I can think of is to start bumping up your activity level. That can also help normalize appetite.

Let me know if any of this helps and don't hesitate to ask further questions.

black pepper also stimulates appetite.

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Thanks for responding Robb. I know that the myoplex is not the best and I only have a couple of them left and will not be reordering them. Would the myoplex light be better then add my own carbs in the form of fruit? I was having them in the morning after my cardio workout and before work. I would go straight from riding bike to work and it worked well for a quick breakfast. Is it alright to have a low carb protein shake after I work out? I do have to have something small before I work out. Usually it has been 1/2 cup lowfat cottage cheese and some small friut. I do love my colby cheese though. I make a cheese and tuna taco for my first break. It makes it easier to eat the tuna. If you think it would help I will change to rice cakes with my tuna. I am still trying to figure out if I want higher carbs or higher fat.

I will look into getting more circuit training in. I was going to work my legs today but I work up this morning with the hips so so sore and my lower back so tight that so far a muslce relaxant and alieve are not touching it. I will be calling my doctor about this. They were feeling good all weekend and I had some great cardio sessions but we went out last night and I am paying for it today.

My gym does not have anything like a rowing machine.

I will let you know how it goes.

Thanks again for the advice.

Nicole

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    • Hi Johno,  fellow brit here. Crappy uk medical experience is par for the course unfortunately where this is concerned, so don't expect too much help from that sphere. Although with a positive diagnosis you should be eligible for dietician advice and monitoring of nutrient levels.  First, 4 month in is still early days. If you have cracked the diet and are not suffering cross contamination (v easily done) then you still have at least 2 and maybe 8 months of healing to come. So it's little early yet to be thinking that your celiac isn't responding to he diet.  1. Sleep issues. You don't mention what these are, but yes, celiac is definitely linked to sleep disorders. In fact it's linked with just about everything due to the way it impacts the body. Almost all systems can be affected. You may also find if the sleep issues are neurological in origin that they will be the last to go on the diet. I find neuro symptoms are the first symptom and last to go. Note also that although Gastrointestinal is commonly percieved as the major celiac presenting symptom, this isn't the case. So your not alone in not having major tummy issues.  It's not caused by mentality but it sure as hell affects it.  2. How long have you got? I tested negative so I'm in the ncgs category and some won't even accept that my condition exists. Even understanding of celiac is still developing. Research is ongoing as is levels of incidence. It's up 4 times since the 1950s so something is going on, better testing is perhaps revealing more. you have positive diagnosis, so you have good evidence to keep you strict on the diet. Eat as well as you can. Try to keep gluten free processed foods to  minimum  and eat fresh whole foods where possible. Treat this first 6 months as a one off healing period and help your body as much as possible. Take some good quality supplements, regardless of what the tests are saying. B complex, magnesium and a multivitamin are a good safety net if nothing else.  Read the newbie thread on this site and double check your kitchen etc for possible cross contamination sources. Could be seasoning, shared butter etc. You need to develop a sense of vigilance about this whilst staying on the right side of paranoia! finally, a warm welcome to a good site  
    • This disease is like a chameleon and seems to change symptoms on people and everyone is a bit different, heck some have no symptoms til it almost kills them with secondary issues like cancer, lymphoma, rupturing the intestines etc.
      I did not have ht classic D but constipation, I also had a bunch of other signs that I had grown into and considered normal. My big thing was neurological side of it. I had gluten ataxia where it attacked my brain and nervous system compounded by b vitamin deficiency, I had learned about the magnesium deficiency months earlier and was supplementing for that part of it. Anyway my health was getting bad, tired, random gut pains, brain looping on the same thought over and over driving me mad, bouts of anger and rage. I was running a bucket list before they got it diagnosed.
      Wish it was done earlier my immune system developed other issues like corn allergies, bunch of intolerance then years later learned I had also developed Ulcerative Colitis.

      There are some mental aspects to it, one part is the effects of vitamin deficiency like the b-vitamins, can be very detrimental to you mental health. Various others have cumulative effects or require others nutrients to work right. SO you have to find your balance and supplement til you heal, or sometimes for life. 

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    • I just quoted a little part but really much of your experiences could be mine. I won't bore you with it all, but chest pains came from 19, herniated disk came at 21, followed by 20 years of sciatic back pain. Depression at or about the same time. Brain fog little later. There was lots more, primarily neurological. Internally I expected to die in my 30s or maybe reach 40.  Nothing shifted any of it until I changed my diet and inadvertently reduced my gluten consumption. I went back on gluten for testing, confident I'd found my cause only to test negative. I did keep a diary however and that helped me and my consultant decide that gluten was off the menu for life.  Couple of things which may be helpful. There is more than one blood test. You may find that one of the others works for you. I never got them all and wonder sometimes if I would have tested positive on another one. You can post your results here if you would like some help in interpreting them. you mentions feeling relief when you ate less gluten. Are you sure you were eating it up to the test? Removing it may have altered the results. Finally, once testing is complete, go properly gluten free even if you tested negative on scope and blood. For some people, they test negative but still react. That could be you and give how closely some of my symptoms match to yours it may be the case. best of luck, you will find this site full of support and useful info. You are not alone in this. matt  
    • Morning guys.  So long story short. Lost 10 kg back late last year. Stress related I believe. ( I Understand this is a big factor with celiacs) Tested. Found anti bodies in my blood. Doctor states potential Celiacs. Have endoscopy. Doctor who takes procedure doubts I have it. Move to London. Move Doctor appointment. Here nothing from Doctors. Fast Forward from December (endoscopy) to July. Ring up doctos asking what my result were as I hadnt heard anything (While eating gluten) Get told "oh, you have celiacs"...........Ridicolous that I wasnt contacted. But anyway thats not the issue.   Fast forward to Now. Gluten Free diet. I have had 1 day I would say in 4 months that I have had super energised, felt great. Sticks in my mind. Had more bloods for all anemia/deficiencies. Everything is fine. Im still exhausted. Every day. My stomach wakes me up 90 percent of the time. I dont have loose stools. Never really have. My mood was severly low. Im really starting to feel like this Celiac is dealt with so primitively.  There is zero sense to any of this. I have tried everything. I watch these shows of people talking like they are dying. Its just painful, everything about it.   1)Wondering if anyone here has had the sleep issues. Im really starting to think this disease is entirely caused by mentality. 2) Thoughts on the contradictive studies/opinions of this disease?    
    • Getting a celiac disease diagnosis is shocking.  Expect to go through all the stages of grief.  Your best defense is to learn how to read labels, avoid cross contamination and consider eating as few processed foods for a few weeks.  It may speed healing (wish someone would have advised me to do so).  You might keep a food journal because celiacs tend to have leaky guts (this is a real thing) causing food intolerances that often resolve with healing.  Lactose intolerance is probably the most common.  You just have to experiment.   The bottom line is that soon you will feel so much better!  Just be patient.  It took a while for you to get sick and it will take time to recover.  😄 If you need to vent, ask a product question, or whatever, we are here to help!  
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