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Refeeding Edema? Anyone Else?
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I have read in a few posts that some people experience refeeding edema while recovering from celiac where they gain a bunch of weight quickly and swell up.......

I am looking for people who can relate to my current situation...

I have been seeing a nutritionist since I was diagnosed with celiac to help me with my new gluten free diet. She tested my metabolism, and told me that before exercise I burn about 3000 calories a day (I am a marathon runner). I also exercise daily. I have been however, experiencing SEVERE edema for months now.

At first, I thought maybe it was just a result of the celiac, maybe it is and it will still take time? I am now wondering if it is a result of poor nutrition. I recently calculated to see on average how many calories I am taking in each day. I had no idea that I am averaging only between 1200 and 1500 calories a day......terrible! I naturally gravitate towards low calorie items like whole fruits and veggies.....

Do you think I am retaining because I am in a state of semi-starvation? I am wondering if I try to up my calories to closer to 3000 if the edema will subside, or if that will make it worse? Would that cause me to gain a bunch of weight in doing so? i am so frustrated and looking for relief.

Anyone who can relate or offer advice?

Thanks :)

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I had a lot of edema before going gluten free and it took a while for it to resolve after going gluten free. What I think helped me was increasing the amount of protein I ate. When I did that and stayed consistent with it, the swelling started to subside. Vitamins were very important too. I'm assuming you have had your heart checked? Swelling and edema can be indicative of either heart or kidney problems so for sure get those things checked out by a Dr. before you attribute the edmea to Celiac, or re-feeding. I just want you to be careful and sure. My face was the last area to stop swelling, but now 14 months into gluten free, I do not get any swelling or edmea anymore. It was very concerning to me in the beginning, as I'm sure it is to you, but I am relieved that it was able to resolve on it's own as my absorption improved. Even water would cause swelling because I don;t think I was absorbing anything. I hope this resolves for you. Just wanted to let you know I know what it feels like. Protein and good fats will help you increase the value of your intake and also increase the calories. Good fats like avocado, flax oil, fish oil and the like help a lot with inflammation. Good luck, hope you get back to running soon.

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I believe you need to go see a doctor. Edema can be a result of serious medical conditions, kidney/heart and given that you are a marathon runner, and you are really relying and utilizing your heart/kidneys more than the average person, you should be looked at medically.

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Oh believe me! I've been tested for it all...since December they have taken 29 viles of blood from me. Edema was actually my intial complaint (before celiac was diagnosed). They have checked heart, liver, kidney, protein, etc...all fine. The only thing that seems to make sense is maybe that issue of malabsorption?

Could you possibly elaborate further on your complications with malabsorption?? It sounds like this might be what I too am experiencing....drinking water makes me considerably more swollen..I have only been gluten free just over a month....do you think I need to further increase calories?? Or just give it time and maybe add more protein? Sorry for all the questions...just frustrated.

I believe you need to go see a doctor. Edema can be a result of serious medical conditions, kidney/heart and given that you are a marathon runner, and you are really relying and utilizing your heart/kidneys more than the average person, you should be looked at medically.

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I have read in a few posts that some people experience refeeding edema while recovering from celiac where they gain a bunch of weight quickly and swell up.......

I am looking for people who can relate to my current situation...

I have been seeing a nutritionist since I was diagnosed with celiac to help me with my new gluten free diet. She tested my metabolism, and told me that before exercise I burn about 3000 calories a day (I am a marathon runner). I also exercise daily. I have been however, experiencing SEVERE edema for months now.

At first, I thought maybe it was just a result of the celiac, maybe it is and it will still take time? I am now wondering if it is a result of poor nutrition. I recently calculated to see on average how many calories I am taking in each day. I had no idea that I am averaging only between 1200 and 1500 calories a day......terrible! I naturally gravitate towards low calorie items like whole fruits and veggies.....

Do you think I am retaining because I am in a state of semi-starvation? I am wondering if I try to up my calories to closer to 3000 if the edema will subside, or if that will make it worse? Would that cause me to gain a bunch of weight in doing so? i am so frustrated and looking for relief.

Anyone who can relate or offer advice?

Thanks :)

Oh my gosh I have the same thing! My feet and legs are so swollen that it's painful to walk! I had to go to the ER last week because I called the nurse and she said to go in. It really sucks and it's still really swollen. My GI specialist said that it's all related to the celiac and that I'm malnourished (I just got diagnosed) but said that it would go down after I start a gluten free diet. I feel your pain!!!!

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I want to throw in this idea before you all start thinking you've got something horrible and mysterious causing leg/foot swelling.

I had been absolutely plagued with this off and on, and of course, going to the doctor and complaining about it, got me zero squat. I am in my ninth year of going gluten free, btw.

Since it was coming and going, I said to myself, say, is there any sort of pattern to this, since I am really good at picking that sort of thing up, and noticed that it was more on weekends. What did I do on weekends ? Besides recreational exercise, I tended to pack lunches and/or eat out for dinner. But, eating out did not always = puffy feet the next day. Could it be something different in my lunch that I did not normally eat during the week, what was different.... I was tending to make the same sort of sandwich for myself as for my husband (gluten free, of course.)

After much trial and error, I gave up using (allegedly gluten free) turkey lunchmeat, and the swelling went down dramatically and stayed away. I do not know if it is cross contamination or a reaction to the preservatives or a combination of both, all I know is that switching over to cooking fresh meats that are not grown with antibiotics has made a huge difference.

There are also lots of other "gluten free" foods that cause me to do this, as I can not eat most processed foods that have complex ingredient lists, but I was not expecting that one. One of the most frustrating things for me is that sometimes I have had to switch over from an item that is actually labeled "gluten free," to another item that is not, but is not made on shared lines.

I also had to ditch artificial sweeteners again, except saccharin.

I had a very enlightening talk with another celiac about possible sources of cc for those of us trending more sensitive, since I like to bake but eating a lot of it is just not working for me, unless I am extremely careful with the ingredients, and while it's sort of a bummer to give up some foods, I really, really like not having my ankle joints being so puffed up they looked like grapefruits.

I eat a lot of fruits and vegetables and nuts (compared to the average American) and a lot of protein and fats, and relatively smaller amounts of carbohydrates.

I had to use a modified version of the SCD (Specific Carbohydrate Diet) during the first few years. I had a heck of a time finding yogurt that wouldn't set me off, (their recipes at the time all seemed to want yogurt this and yogurt that in their nut meal breads) and went dairy free at first, before reintroducing aged cheeses. Now we have available all sorts of other gluten free ingredients, that doing substitutions can be more creative.

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I am a self-diagnosed Celiac sufferer. I have almost every symptom even mildly related to Celiac. I did have the blood test which was negative but I had already started cutting way back on the gluten(for me which means wheat because I do not eat any of the other grains nor drink any alcohol.)) I went gluten free March 19 2012. Even after the first day I saw marked improvement, but the most apparent improvement was in my brain function. I had basically become a mumbling idiot. I could not carry on an intelligent conversation. I would say the wrong things, wrong words,, my mind was totally confused. It was like there was a short circuit between my brain and my mouth. On the computer things were much better. I might make some mistakes but I could correct them without just making things worse. edema was also a problem. It got better but is worse again. My feet and legs are very swollen. I have pressure, pain and bloating in my stomach and chest. I have diabetes as well as heart and kidney problems. I take iron, potassium, magnesium, a multi-vitamin, mega red krill oil, and B12 shots. Along with other meds I take for blood pressure, heart, cholesterol, diuretics,etc I take between 30-35 pills a day. I felt so good the first few weeks then things started to go downhill again. I may be getting hidden wheat. I do eat rice and oatmeal. I want to get back to the way I felt the first few weeks of being gluten free. I had blood work today and will get the results next week at my next appointment. I also have colitis(4 pills a day for that, diverticulitis, chronic fatigue, of course the diarrhea which goes with celiac, colitis, etc. I have recurring muscle pains, intense pains with no apparent cause and no relief from meds. I had "colds" that lasted for months. Couldn't be colds, right? weight fluctuation, and it goes on and on. I read the labels. i prepare most of the meals myself from scratch. Where do these symptoms return? What can I do to help myself?

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To the above poster. Oatmeal is often contaminated with wheat.

To the OP: I just had another thought for you.

Soy.

I gave up soy several months ago.

I am 14 months gluten free and I have not had any swelling or edema really since I went Paleo 6 months ago or so and stopped eating grains. But the soy was seeming to bother me so I stopped that too.

Today I was late to work. I didn't bring any food so I drank 2 Boost meal replacement drinks which I thought would help me get some protein. Tonight my legs are swollen bad. I'm shocked. I had just written to you about the protein and how I haven't had swelling in such a long time. But the only thing I can attribute this episode of swelling to is soy. Soy is in a lot of things. I had given them all up.

I had read of this swelling happening to others on soy too.

You might try it if nothing else helps you.

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HI,

I haven't had refeeding edema, but I have had edema. My feet and ankles would swell very badly for years. I recently learned that it was a reaction to grapes causing a lot of it. So cutting out grapes, raisins wine etc helped me a lot. Edema is a known reaction to food allergies, so it could be a food causing it.

Some info on refeeding edema.

http://www.eatingdisordersreview.com/nl/nl_edr_16_5_5.html

Refeeding edema in patients with anorexia nervosa is still a poorly understood condition. A recent case of edema in a Singapore patient demonstrated the need for further investigation of the condition (Singapore Med 2005;46:308).

................

Even though most cases of edema in patients with anorexia nervosa will resolve with refeeding, the authors note that it is important to rule out possibly serious underlying causes of edema, such as cardiac failure, and to prepare the patients psychologically by directly addressing the problem.

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    • Well, I am stressed to the max. I just spent 3 days in the hospital with D and stomach pain, dizziness, chest pain, generally unwell. Then another trip to the ER on top of that. My protein was low and my RBC and hemoglobin dropped below normal in 3 days. Not terribly low, but below normal. I also had metabolic acidosis which still confuses me. I usually eat every 2-3 hours despite it causing pain to keep my energy up and was unable to eat that frequently in the hospital. I usually carry protein with me and had been taking liquid iron which I stopped a few weeks ago because my new endo is not a fan of iron supplements. As soon as I got home from the hospital I started with my protein drinks and blackstrap molasses for iron.  I now have bilateral mild pleural effusions and a nodule on my left lung, which hopefully is nothing, but was not there on a CT back in March. In addition, my left adrenal gland, which also appeared normal in March, is calcified and the report indicates this is most likely due to a previous bleed or infection. My colon appears tortuous (whatever that means) and we are waiting on colon/endo biopsies. I have been gluten-free since March except for cc so expect the biopsies to again be negative.  My primary care is useless. I am in the process of getting a new one I will see on the 7th but need the current one to fill out FMLA paperwork because I both physically and mentally need time to recover. I will have to go off of payroll for 2 weeks but I think I need to. I called the primary's office today to discuss the hospital tests which she does NOT have yet and to ask if we should/could start a low dose of prednisone because my body is attacking itself. My thyroid on ultrasound is also abnormal though my bloodwork thus far is normal. But it hurts on that side. The only reason the ultrasound was ordered is because I asked for it in the first place. The only reason I have started seeing an endocrinologist is because I found one myself. Anyway...I broke down in tears on the phone eith her today and she told me I was having a "manic episode". I have no history of mania. I only recently started taking xanax to help me cope with the stress of being sick. I was not sick until I did this stupid gluten challenge over the winter. My mother was in town and spoke with the doctor on the phone as well who was trying to get my mom to take me to a psych hospital. She also threatened to send the police to check on me. My mother assured her I was in no danger and we hung up the phone in complete shock. Admittedly, I was in tears when I called her and probably sounded like a fucking mess. But I believe I referenced the dropping iron, protein, fluid near lungs, enlarged thyroid and attacked adrenal gland then literally said "my body is attacking itself and I need help" to which she said, "I think you are manic". Lovely. If I was a mess before that phone call it was 10x worse when we hung up.  Anyway, this is the first night it has been extremely difficult to sleep. I admit my thoughts about my odd symptoms keep me up often recently. I mean, who the hell bleeds from or gets an infected adrenal gland?! I am sure it was another time I begged my primary for help. On a side not, the NP at the ER told me the primary should be putting these pieces together and communicating with my other doctors better. He then stated that he used to go to the same practice but left because the practice got too big and like a business. So I got some validation from that chat.  A melatonin or a .25 xanax usually does the trick for me to sleep but I am so disturbed about my interaction today, stressed at my health, stressed that my ex has our son so much because I am always sick (bless him for coming through), stressed that I have to go back to this awful doctor because I will need the FMLA paperwork before I see the new doc on the 7th.  8 months ago, I took a multivitamin when I remembered it and that was it.  End rant. Maybe now that it is off my chest I can finally sleep. 
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