Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Did You Have Hypoalbuninemia? How Did You Recover?


ButterflyChaser

Recommended Posts

ButterflyChaser Enthusiast

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. :(


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



frieze Community Regular

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.
1desperateladysaved Proficient

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

ButterflyChaser Enthusiast

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 -_- .

gatita Enthusiast

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.

ButterflyChaser Enthusiast

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

gatita Enthusiast

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ButterflyChaser Enthusiast

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.

1desperateladysaved Proficient

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.

ButterflyChaser Enthusiast

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"?

frieze Community Regular

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
1desperateladysaved Proficient

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.

gatita Enthusiast

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

ButterflyChaser Enthusiast

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

GFinDC Veteran

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.

 

 

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    2. - Wheatwacked replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      34

      Blood results

    3. - Known1 replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      7

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    4. - Wheatwacked replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      31

      results from 13 day gluten challenge - does this mean I can't have celiac?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,411
    • Most Online (within 30 mins)
      7,748

    EBeloved
    Newest Member
    EBeloved
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      @Known1, I submitted the following comment along with my contact information: "I have noticed that many food companies voluntarily include information in their ingredient/allergen label section when the product is made in an environment where cross contamination with any of the nine major allergens recognized by the FDA may also be likely. Even though celiac disease and gluten sensitivity are, technically speaking, not allergic responses, it would seem, nonetheless, appropriate to include "gluten" in that list for the present purpose. That would insure that food companies would be consistent with including this information in labeling. Best estimates are that 1% of the general population, many undiagnosed of course, have celiac disease and more than that are gluten sensitive."
    • Wheatwacked
    • Wheatwacked
      Celiac Disease causes more vitamin D deficiency than the general population because of limited UV sunlight in the winter and the little available from food is not absorbed well in the damaged small intestine.  Taking 10,000 IU a day (250 mcg) a day broke my depression. Taking it for eleven years.  Doctor recently said to not stop.  My 25(OH)D is around 200 nmol/L (80 ng/ml) but it took about six years to get there.  Increasing vitamin D also increases absorption of Calcium. A good start is 100-gram (3.5-ounce) serving of salmon,  vitamin D from 7.5 to 25 mcg (300 to 1,000 IU) but it is going to take additional vitamin D supplement to be effective.  More importantly salmon has an omega-6 to omega-3 ratio 1:10 anti-inflammatory compared to the 15:1 infammatory ratio of the typical Western diet. Vitamin D and Depression: Where is all the Sunshine?
    • Known1
      Thank you for sharing your thoughts.  I respectfully disagree.  You cherry picked a small section from the page.  I will do the same below: The agency is seeking information on adverse reactions due to “ingredients of interest” (i.e., non-wheat gluten containing grains (GCGs) which are rye and barley, and oats due to cross-contact with GCGs) and on labeling issues or concerns with identifying these “ingredients of interest” on packaged food products in the U.S. “People with celiac disease or gluten sensitives have had to tiptoe around food, and are often forced to guess about their food options,” said FDA Commissioner Marty Makary, M.D., M.P.H. “We encourage all stakeholders to share their experiences and data to help us develop policies that will better protect Americans and support healthy food choices.” --- end quote Anyone with celiac disease is clearly a stakeholder.  The FDA is encouraging us to share our experiences along with any data to help develop future "policies that will better protect Americans and support healthy food choices".  I see this as our chance to speak up or forever hold our peace.  Like those that do not participate in elections, they are not allowed to complain.  The way I see it, if we do not participate in this request for public comment/feedback, then we should also not complain when we get ill from something labeled gluten-free. Have a blessed day ahead, Known1
    • Wheatwacked
      Here is a link to the spreadsheet I kept to track my nutrition intakes.  Maybe it will give you ideas. It is not https so browsers may flag a security warning. There is nothing to send or receive. http://doodlesnotes.net/index3.html I tracked everything I ate, used the National Nutrition Database https://www.foodrisk.org/resources/display/41 to add up my daily intake and supplemented appropriately.  It tracks about 30 nutrients at once.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.