Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

Water Retention


fattycat

Recommended Posts

fattycat Rookie

I don't know how long it's been going on for but I noticed about 2 weeks ago that I'm retaining water. When you press down on my legs I get indentations that take a long time to go away. I went to the doctor and he tested some protine level, electrolite levels and something else. Everything came back as normal. He has me on diuretics for the next 2 months and says that there's nothing wrong, to be on the safe side I should stop taking my birth control pills but it's probably just how I am...an answer I am not satisfied with! I know that some other people with celiacs have had water retention problems. What did your doctor test for? How was it treated?

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Roda Rising Star

Here is a link for you to review.

Open Original Shared Link

Link to comment
Share on other sites
eatmeat4good Enthusiast

I had edema in my lower legs. I was quite alarmed when it happened as I had never had it before. Little did I know that it was going to continue for years. I was given a diuretic by the Dr. but told not to take it for more than 7 days during my cycle. So I knew they thought it was menstrual. And I knew they were wrong. I didn't get relief of this symptom until I was several months gluten free. It seems the fluid retention was all gluten related. Other causes can be heart or kidney problems, so they really need to keep investigating if being gluten free hasn't resolved it. Also thyroid problems can be a cause. Hope they keep testing for things and not just giving diuretics.

Link to comment
Share on other sites
fattycat Rookie

Well, I've been gluten free for 3 or 4 months now. Not sure if this problem was present before or not though. I had a billion other things I was trying to sort out. I've had thyriod problem like symptoms for years but every test has been negative (I dont know what tests they have run).

I hear that water retention can be due to protine absorbtion problems but the doctor said that this didn't appear to be the problem. B6 can also be a problem. My B6 levels were low but I've been on suppliments for months now. I've been on the pill for about 10 years, 6 on my current one so it's not likely that that is the problem but the doctor still wants me to go off of the pill. He seems pretty anti pill in general though. My hormone levels were checked in October and were normal then. I'm also only 31 years old and have accompanying borderline high blood pressure sometimes.

He seemed pretty set on not wanting to run any more tests and said that it's "just how your body is" which is a load of crap (also what other doctors told me when I was sick cause of the celiac)! I am not going to be on diuretics more than the 2 months I agreed to. Trying to track down an English speaking Endocrinologist in my city but not sure if it is a hormone problem. Grrr I'm not 100% sure that it's not protine absorbtion problems...are there anything that you can do/take to help that?

Link to comment
Share on other sites
eatmeat4good Enthusiast

You might be right about the protein absorption problem. Since your Dr. is done with testing you, you need to find and Endocrinologist who will test you for Hashimotos and Graves..there are more specific tests than for just TSH. TSH can look normal even if you have Hashimoto or Graves. What do you think about seeing a Nephrologist (kidney Dr.). Since your problem is edema, it might be able to be sorted out quite nicely by a qualifies kidney Dr. If you have edema, your kidneys are struggling and a kidney Dr. should be able to rule out the protein malabsorption too. They have tests for many things that can cause swelling/edema. Don't stop now. If you can get either a nephrologist or an endocrinologist to look at your case and do some testing it would be worth it. And if you have insurance do both. Another option is a cardiologist who can check your heart to be sure it isn't congestive heart problems. You're doing good to keep asking questions. Dr.'s can dismiss you but that doesn't meant there isn't a medical problem...as you well know. Hope you find out soon.

Link to comment
Share on other sites
cassP Contributor

Well, I've been gluten free for 3 or 4 months now. Not sure if this problem was present before or not though. I had a billion other things I was trying to sort out. I've had thyriod problem like symptoms for years but every test has been negative (I dont know what tests they have run).

I hear that water retention can be due to protine absorbtion problems but the doctor said that this didn't appear to be the problem. B6 can also be a problem. My B6 levels were low but I've been on suppliments for months now. I've been on the pill for about 10 years, 6 on my current one so it's not likely that that is the problem but the doctor still wants me to go off of the pill. He seems pretty anti pill in general though. My hormone levels were checked in October and were normal then. I'm also only 31 years old and have accompanying borderline high blood pressure sometimes.

He seemed pretty set on not wanting to run any more tests and said that it's "just how your body is" which is a load of crap (also what other doctors told me when I was sick cause of the celiac)! I am not going to be on diuretics more than the 2 months I agreed to. Trying to track down an English speaking Endocrinologist in my city but not sure if it is a hormone problem. Grrr I'm not 100% sure that it's not protine absorbtion problems...are there anything that you can do/take to help that?

i agree with above poster- especially if you have Celiac or Gluten Intolerance-> thyroid problems are common. get your antibodies tested, and also a full thyroid panel- and get copies of the results yourself. a lot of doctors are relying on the OLD range- which is not accurate. ie: you could have Hashimoto's with a TSH of 4.5, be within range- but really when your tsh is above a 2 or a 3- you are already hypo.

ALSO-> (i have both hyper & hypo)-> and i was first put on Synthroid (a t4 med)- but it wasnt untill they added Cytomel (t3)-> that i actually started to de-swell.

good luck- hope u get answers!

oh also, the pill can bind up t4- so if you already have hypo- or even if you're on meds- the pill can make u more hypo possibly. you can still take it of course- but thyroid meds would have to be altered IF you had thyroid prob.

Link to comment
Share on other sites
fattycat Rookie

Test results came back today and apparently everything is normal (It's always normal <_< ). Everything that was a bit below or above apparently wasn't enough to be significant. Doctors are now thinking that maybe it's my birth control pill (been on the same one for years) and going to see a gynocologist this week.

Test results (taking Laxis a diuretic for one week and on Alesse a birth contol pill + a multi vitamin and B vitamin suppliments):

AST (5-31) 19

ALT (5-31) 20

ALP (35-105) 78

TP (5.8-8.0) 7.2

ALB (3.8-5.3) 4.3

A/G (1.5-2) 1.5

GLO (1.5-3.6) 2.9

SB-T (0.3-1.4) 0.4

SB-D (0.0-0.4) 0.1

LDH (160-520) 356

BUN (8.0-22.0) 8.4

CREA (0.6-0.9) 0.9

Na (136-146) 140

K (3.5-5) 4

Cl (98-106) 106

Ca (8.1-10.5) 9.4

P (2.5-5.5) 2.1

UA (2.5-7.3) 4

Hgb A1C (4.3-6.2) 5.9

Creatinine 129.9

Microalbum 0.56

Glucose (60-100) 109

WBC (3.4-9.3) 9.4

RBC (3.6-4.68) 4.71

Hgb (11.2-14) 13.7

Hct (33.3-40.8) 41.3

MCV (81.8-97) 87.7

MCH (27.4-33.4) 29.1

MCHC (33-35) 33.2

PLT (127-307) 301

RDW-CV (11.2-14) 12.7

PDW (14.5-16.1) 10.8

MPV (6-11.2) 9.6

Seg.Neutro (50-75) 61.9

Lymphocyte (20-44) 25.8

Monocyte (2-9) 8.7

Eosinophil (1-5) 3.3

Basophil (0-2) 0.3

TSH (0.35-4.94) 0.665

Free T4 (0.70-1.48) 1.27

Sg (1.008-1.030) 1.020

PH (4.5-8.0) 6.0

Urobilinog 0.2

WBC (0-3) 0~1

RBC (0-2) 0~1

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

What others have said sounds like good advice.

I started having edema long after going gluten-free. Seems my digestive system wasn't finished deteriorating. I figured it was leaky gut allowing proteins into the bloodstream. So I cut back on protein, and the swelling went down in a matter of about two weeks or so. I don't eat meat, so it was the legumes and other high-protein items I normally eat. Took nearly a year before I could eat normal amounts of protein without issues.

I think a good digestive enzyme supplement and probiotic may help too. Just be sure they're gluten-free. NOW Foods makes a product called "Digest Platinum", which I find to be effective for aiding digestion. Not sure about good probiotic products, but there have been numerous threads on it.

Link to comment
Share on other sites
cassP Contributor

the pill can totally cause water retention.

the pill can also bind up t4, but your thyroid numbers look good.

when i was in my 20s- and ate whatever i want (including gluten)- i would always swell up on the pill- putting on 8-10 lbs every period. but in my 30's when i was MOSTLY gluten free & feeling great on the atkins & bloodtype (pretty paleo)-> i never put on weight with the pill.

good luck!

Link to comment
Share on other sites
fattycat Rookie

Hi! Apparently the protine levels in my blood are fine and my protine levels in general are fine...which actually suprised me because I should eat more protine and I know it! I already eat a lot of foods with probiotics and a suppliment. It's been about 4 months since I've been 100% gluten free. Part of the problem is I'm not sure how long this has been going on for really. I've also been sick (colds) a lot but the dr said that there seems to be no reason for this other than I work with a lot of students who don't cover their mouthes or wash their hands.

3 days off of the pill. Hopefully it works out! I dont want to have any more tests <_<

Link to comment
Share on other sites
  • 3 weeks later...
fattycat Rookie

So, still retaining water :angry: I've now seen a private practice family doctor, endocrinologist, gynocologist, and acupuncturist as well has had those specialists consult with 2 different internal medicine doctors. All test so far have turned out normal and I've gotten the responses:

- It's just the way you are

- It's your celiac disease (no suggestion beyond that like why or what to do)

- It's your birth control pill

- It's not your birth control pill

- It's not celiac disease

- It's cause you're fat

The last one is true but not new. I'm 5 foot 4 and 170 pounds. I gained 40 to 50 pounds when I started to get really sick in 2008 despite having constant diareha and no change in diet or exercise. My doctor expected it to start coming right off when I went gluten free but it hasnt happened yet. I exercise regularily and eat quite well.

Anyways, not willing to take any of those conclusions as the answer. My next stop is an allergist. I read that A hidden food allergy could be causing the water retention and the weight issues. After that I'll see a heart doctor. Even though water retention could be a sign of heart failure no one bothered to check that out yert :huh: . So after those, what else could it be? I'm basically trying to figure this out on my own

Link to comment
Share on other sites
maile Newbie

have you cross run your test results against a site like drkaslow.com? that site will show you what the optimal levels for the various tests run are.

just from a quick glance but you could be anemic and there are a few other things that are off kilter. maybe cross check those results against optimal levels before you see another doctor so you have some more information on your side or if you are going to try and figure it out yourself.

in the meantime grapeseed extract helps with fluid retention :D

Link to comment
Share on other sites
fattycat Rookie

have you cross run your test results against a site like drkaslow.com? that site will show you what the optimal levels for the various tests run are.

just from a quick glance but you could be anemic and there are a few other things that are off kilter. maybe cross check those results against optimal levels before you see another doctor so you have some more information on your side or if you are going to try and figure it out yourself.

in the meantime grapeseed extract helps with fluid retention :D

Maile, what is if in the test results that makes you think that I could be anemic? The doctors who looked at the results said I wasnt. :blink: And all the things that are a bit high or low they said were not of any significant value. :( I'm checking out that site you sent. Looks like the slightly off levels may be due to malabsorbtion and/or blood sugar issues. I have reactive hypoglycemia which the doctors linked to celiac disease and not being able to absorb properly. When I'm absorbing properly no reactive hypoglycemia. I've started taking my probiotics again in the last week. Maybe that will help. I know something is wrong! I'm sick of being turned away.

Link to comment
Share on other sites
HopefulMama23 Explorer

I have been gluten-free for three and half months- all around I feel a zillion times better but I have noticed recently I'm retaining a lot of water. I do eat a lot of protein now, and I'm on the pill also. Let me know what, if anything, helps you? Good luck!

Link to comment
Share on other sites
maile Newbie

Maile, what is if in the test results that makes you think that I could be anemic? The doctors who looked at the results said I wasnt. :blink: And all the things that are a bit high or low they said were not of any significant value. :( I'm checking out that site you sent. Looks like the slightly off levels may be due to malabsorbtion and/or blood sugar issues. I have reactive hypoglycemia which the doctors linked to celiac disease and not being able to absorb properly. When I'm absorbing properly no reactive hypoglycemia. I've started taking my probiotics again in the last week. Maybe that will help. I know something is wrong! I'm sick of being turned away.

I was comparing your results to dr kaslow's site and if you compare against the female optimal values you are either out of range or just on the edge of the range for things associated with anemias. At any rate it might be worthwhile to try and rule it out, would your doctor do a ferritin or iron panel?

Your blood glucose and hgb-A1c are also high which is consistent with insulin resistance (which would also cause fluid retention) you might want to check out "bloodsugar 101"

from her site:

Normal Fasting Blood Sugar

A normal fasting blood sugar (which is also the blood sugar a normal person will see right before a meal) is:

83 mg/dl (4.6 mmol/L) or less.

Many normal people have fasting blood sugars in the mid and high 70 mg/dl (3.9 mmol/L) range.

A1c

A truly normal A1c is between 4.6% and 5.4%

A1cs are not as good a measure of actual blood sugar control in individuals as they are for groups. An A1c of 5.1% maps to an average blood sugar of 100 mg/dl (5.6 mmol/L) or less when group statistics are analyzed, but normal variations in how our red blood cells work make the A1cs of truly normal individuals fall into a wider range.

this site has lots of good information on how to control your blood sugars with diet alone and the author is a low carb person so her advice won't contradict much with a celiac diet.

Link to comment
Share on other sites
  • 3 weeks later...
fattycat Rookie

I think you're right about the insulin resistance :( My symptoms (weight gain around stomach area, boarderline high blood pressure, water retention etc) plus the pre-existing blood sugar problems(reactive hypoglycemia) seem to point to it.

Actually, when I got really sick with the celiac disease I stopped digesting food nearly completely (came out the same way it went in :ph34r: ). When this started to happen, rather than loose weight, I gained weight...any my reactive hypoglycemia symptoms stopped. When I had the reactive hypoglycemia I was very thin. I haven't had an episode of blood sugar levels crashing since I gained weight. I exercise and eat well but the weight just wont come off. I thought it would when I went gluten free. Then I discovered and cut out some allergins. I thought I would loose weight then. So, maybe this is connected to insulin resistance. Is the insulin resistance connected to the celiac disease?

So, I can cut back on carbs even more than before, stop having my glass of wine with a meal, don't have sugar in my coffee etc..Is there any point in seeing a doctor?

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,088
    • Most Online (within 30 mins)
      7,748

    Aventine
    Newest Member
    Aventine
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Anmol
      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
×
×
  • Create New...