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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 FREE Celiac.com email alerts   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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Did You Have Hypoalbuninemia? How Did You Recover?
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15 posts in this topic

For a couple of years, each time I ingested wheat and Co. I would get not only D, bloating, and rash, but also a weird swelling of the legs. I mean a "airline didn't let me get on my plane and shipped me to the hospital" kind of massive swelling.

One of my doctors, about a year and a half ago, hypothesized that there was some kind of protein deficiency, because all my doppler exams were just fine, so it wasn't a circulatory issue. But at the time protein deficiency was obvious, because I was severely underweight, in spite of my daily snacking on brownies and stuff in order to keep my weight up.

I gained weight on a hypercaloric diet which still did not have many grains in it (because I was freaked out by the swelling, and people thought it was all in my head) and was at almost healthy (weight and function) for a while.

Then I became overweight when the edema got much worse, and chronic, about 7-8 months ago, when I was consuming wheat every day. I seemed to the the only woman who would gain even 8-9 lbs after days of D, AND hyperthyroidism.

After my nurse told me it made no sense to do a biopsy because my labs were negative, I decided to try the gluten-free diet because I had noticed my condition got worse depending on my diet.

I found significant relief on the gluten-free diet, yet I would occasionally experience the same when I had more than 3-4 servings of grains. I went grain-free, and started treating my hyperthyroidism, and new blood tests showed I have hypoalbulinemia, which causes edema.

Could my edema (in someone who had never had water retention in any form before) be caused by my worn out gut which causes this protein loss? Was anyone here found with low albumines? How did you fix this? I am already eating a high protein diet (at least 0.8 gr protein per pound), all coming from real food, too, not shakes. I confess I am scared all this will never go away, and it is making it very difficult for me to move: my hips, especially, are killing me. :(

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For a couple of years, each time I ingested wheat and Co. I would get not only D, bloating, and rash, but also a weird swelling of the legs. I mean a "airline didn't let me get on my plane and shipped me to the hospital" kind of massive swelling.

One of my doctors, about a year and a half ago, hypothesized that there was some kind of protein deficiency, because all my doppler exams were just fine, so it wasn't a circulatory issue. But at the time protein deficiency was obvious, because I was severely underweight, in spite of my daily snacking on brownies and stuff in order to keep my weight up.

I gained weight on a hypercaloric diet which still did not have many grains in it (because I was freaked out by the swelling, and people thought it was all in my head) and was at almost healthy (weight and function) for a while.

Then I became overweight when the edema got much worse, and chronic, about 7-8 months ago, when I was consuming wheat every day. I seemed to the the only woman who would gain even 8-9 lbs after days of D, AND hyperthyroidism.

After my nurse told me it made no sense to do a biopsy because my labs were negative, I decided to try the gluten-free diet because I had noticed my condition got worse depending on my diet.

I found significant relief on the gluten-free diet, yet I would occasionally experience the same when I had more than 3-4 servings of grains. I went grain-free, and started treating my hyperthyroidism, and new blood tests showed I have hypoalbulinemia, which causes edema.

Could my edema (in someone who had never had water retention in any form before) be caused by my worn out gut which causes this protein loss? Was anyone here found with low albumines? How did you fix this? I am already eating a high protein diet (at least 0.8 gr protein per pound), all coming from real food, too, not shakes. I confess I am scared all this will never go away, and it is making it very difficult for me to move: my hips, especially, are killing me.

I would hazard a guess you need digestive enzymes, get one aimed at protein. you can eat protein till the cows come home, (pun intended) but if you can't digest it, you won't absorb it.....good luck.
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I have seen the weird leg swelling as well as water retention. Once I lost 30 lbs in a week when I began some supplements. Yeah, it was all in my head! Not. I am not sure about protein levels, but was generally well nourished inspite of having a more and more stringent diet. This is improving with many tactics being used.

Namely: Grain free diet, rotational diet, and supplements. I am taking digestive enzymes as well as nutrients in short supply.

Even though I have expereinced the edema, I do not have a good handle on the causes.

Diana

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Thanks! How do I know what enzymes I should try? What have you been taking (I assume it would not be the same for all people).

Diana - when you say "rotational diet," do you mean just waiting for four days between eating the same food again? Does this have to apply to all foods, non excluded (eg. my baby lettuce, or the milk in my coffee)? I know my mum had to bring me up with this method because apparently if I hate anything for a couple of weeks then I'd react to it, but I was too small to remember -_- .

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For what it's worth:

I had a low blood albumin level two years ago that became low-normal just before starting treatment with the gluten-free diet last year. I've also had terrible ankle and leg swelling too, but it seems more related to a tendon disorder (PTTD).

My current GI doc says low albumin is an indicator of SIBO, Small Intestine Bacterial Overgrowth. I see you have intestinal dysbiosis.

Interestingly, I also get a wheat rash (not DH) and allergy-type reactions to wheat.

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Interesting! That would make sense, actually - the SIBO, I mean. What kind of rash did you get?

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I get very small hives all over my stomach... also my lips, eyes and cheeks swell up.

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I get small, raised, red hives too! But on the upper parts of my arms and legs. Weird. They itch like crazy when they appear.

I always have one or two smallish servings of yogurt and/or kefir per day: I wonder if this is ok for the numerous creatures living in me? I have almost no refined sugar at all, except for the sugar in my dark chocolate (75% and up), and those naturally occurring in fruit, or milk.

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Thanks! How do I know what enzymes I should try? What have you been taking (I assume it would not be the same for all people).

Diana - when you say "rotational diet," do you mean just waiting for four days between eating the same food again? Does this have to apply to all foods, non excluded (eg. my baby lettuce, or the milk in my coffee)? I know my mum had to bring me up with this method because apparently if I hate anything for a couple of weeks then I'd react to it, but I was too small to remember -_- .

Yes, I generally meant to wait four days between eating the same thing. I had food sensitivity tests. Those things that I had no anti-bodies for, which I had been consuming regular, I don't bother to rotate. I also use small amounts of honey and agave that I don't wait for four days. I still try to spread it out and rotate them. So far, this has been working for me. I "eat by families" each day and eat a different family the next day.

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I "eat by families" each day and eat a different family the next day.

That seems doable, since it is already what I sort of do, even if I do it for grad-school budgeting reasons :lol: . What do you mean by "eating by families"?

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Thanks! How do I know what enzymes I should try? What have you been taking (I assume it would not be the same for all people).

Diana - when you say "rotational diet," do you mean just waiting for four days between eating the same food again? Does this have to apply to all foods, non excluded (eg. my baby lettuce, or the milk in my coffee)? I know my mum had to bring me up with this method because apparently if I hate anything for a couple of weeks then I'd react to it, but I was too small to remember -_- .

Read the label, they will specify what the enzymes in the product are for. For the SIBO, not sure the low sugar thing will do much, that is for candida, which is a yeast. The enzymes actually may help with that, if the "bad" bacteria are living on improperly/un digested food. good luck
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Thanks! How do I know what enzymes I should try? What have you been taking (I assume it would not be the same for all people).

Diana - when you say "rotational diet," do you mean just waiting for four days between eating the same food again? Does this have to apply to all foods, non excluded (eg. my baby lettuce, or the milk in my coffee)? I know my mum had to bring me up with this method because apparently if I hate anything for a couple of weeks then I'd react to it, but I was too small to remember -_- .

Families of:

Vegetables: 1. Broccoli, caulifjower, kale brussel sprouts and collard greens.

2. Squash, sweet potato zicchini, carrots celery

3. Beets, swiss chard, spinach

4. peas, lentils, legume, beans, garbanzo, carob

5. Other Fennel Bulb

Meats: 1. Poultry Chicken, turkey, eggs

2. Beef, buffalo

3. Fish (Often tolerated without rotation, but I vary mine)

4. pork

5. lamb (If this fits in to a family, I dunno it.

Grain like 1. Buckwheat

2. Almond flour

3. coconut flour

4. nut flour walnut, pecan

5. hazelnut

6. bean flour with legume day. Favorites: White bean, and garbanzo bean,

Oils: 1. Ghee

2. cocunut oil (On the same day as coconut flour)

3. olive oil

4. I am short just now on oil families.

You can read about food families on various websites. I got my information from my food sensitivity lab with my results. I have not included fruits and someone could do that. I know citrus is one family.

I will try to return with a specific website, unless someone beats me to it.

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BTW, here's a pretty thorough report on SIBO for GI doctors (apparently it's still being edited) that mentions hypoalbuninemia (sp?) and edema in the extremities... I learned a lot from it!

www.gidoctor.net/client_files/file/Review-of-SIBO.pdf

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Wow, thank you all, that's fantastic! I'll mention the protein enzymes to my  doc tomorrow morning. Thank you again! :)

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Hi BC,

 

Edema, (swelling) is also a symptom of allergic reactions.  So part of it may be an allergic reaction.  Just another possibility to think about.

 

 

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