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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?

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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.

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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?

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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.

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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.

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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

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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.

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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!

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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 <_<

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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

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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

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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.

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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!

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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.

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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?

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