Thick Legs / Water Retention / Lipedema

[Thickleg]

Hi

 

I am new as a writer to this forum, although I have been reading for several weeks every now and then.

 

I had thick legs all my life.

 

Intuitively for the last 10 years I have been eating very few wheat, I had corn crackers, corn noodels, corn spaghetti. Two or three years ago I started eating out for lunch - and gained three kilos within no time. I felt it was water. I haven't lost this water since then. In the restaurant they always serve you slices of bread with the meals. Now I know: This must have been the cause.

 

This Summer I decided to change from corn to wheat spaghetti. At the same time I discovered, that the bakery in the nearby town made excellent rye-bread, 100% pure, no wheat added, really dark an crusty. I loved it. Two months later my health was ruined.

 

My legs were swollen, I had problems walking and standing. I had an excema that turned out to be DH (Dermatitis Herpetiformis) as I found out thanks to a book and pictures in the internet. I spent hours surfing the internet and reading books and articles to find out, what was going on.

 

As soon as I realised, what it was, I stopped all gluten. That was six weeks ago.

 

The DH has nearly resoved.

 

The thick legs, I found out, must be Lipedema. I found a therapeut, who takes care of them. She does not the ordinary lympatic drainage but a much more intensive therapy.

 

I still have water retention in my tissues, not only the legs, but the arms, too and all over the body. It ist not just a lymphedema - it must be a changed, watery, "fatty tissue". I haven't lost any water until now. I have been walking around with compression stockings, I had my legs wrapped; but there ist no resolution to my problem until now.

 

Has anyone experienced something similar and did it resolve by eating no gluten? How long did it take? My tissue ist much softer now, but I guess I still carry around about 10 kilos of water, if not more.

 

Thanks in advance for your answers.

Edited November 3, 2013 by Thickleg

[iloathegluten]

Before I went gluten free, my feet and calves were always swollen!! My pant size was a regular size, but I had to buy boots that would fit a plus size calf, and even then, they were a tight fit! I thought I was just doomed to have cankles my entire life, but going gluten free solved the problem. My shoe size also shrunk. SO crazy how one little protein can affect so much. The bloating in my gut and face went down noticeably within a month after going gluten-free, but it took about a half a year before all the swelling in my feet and calves disappeared. It helped me to stay active and also to limit alcohol and salt consumption.

[Thickleg]

O, thank you so much! It's the first time in my life that I meet somebody who like me has thick calves! In all my life I never had high winter-boots, because the boot-legs were not wide enough. They would never fit. I had boots to work in the mud, with wide bootlegs, so you could put the lower end of your pants into the boots. Only those kind of boots had the right size for my calves. I have had that all my life. For me it is unbelievable, that an entire life I had a problem with gluten without ever realising where the cause of the ever changing ailings lay. I once showed a doctor a finger with - as today I know - DH. He had no idee and gave me a unguent. I have had DH (in a very light or light form) for years. In restrospect, the intensivity of my DH must have been correlated with my gluten-intake.

 

My fatty tissue at my legs hurts when I squeeze it and I often have bruises; these are tipical symptoms of lipedema - did you have this too?

 

I find it strange that while surfing the internet I could not find any correlation between gluten and lipedema. For me, the way I experienced the gluten-intake via the rye-bread and the deterioration of my health, the correlation ist clear. There are clinics all over the world for treating lipedema - but not one mentions gluten as a possible cause. Only in forums like this one I found the correlation between "gluten" and "water retention".

 

Well - at least with this thread future internet-searchers for the causes of lipedema will find a hint here to a possible cause!

Edited November 3, 2013 by Thickleg

[iloathegluten]

I had to look up lipedema because I'd never really heard of it or considered I might have it. I always just thought it was extreme bloating, lol. But like you, I also could never wear Ugg boots or similar styles. Even at normal weights, my calves were too thick! I did also experience frequent bruising as well.

 

I just did some quick google searches on lipedema, and one theory is it's caused by hormonal imbalances. One major cause of hormonal imbalances in women is PCOS (Polycystic Ovarian Syndrome). I was diagnosed with this in high school, and new research is finding PCOS is linked to Celiac disease and gluten intolerance. I definitely believe it is. After going gluten-free, my PCOS symptoms drastically improved - if not disappeared! Maybe there's a link through this. It seems lipedema affects only women, and PCOS also affects only women, so maybe that's the link with gluten? Even without PCOS or a similar condition, I would think gluten consumption could cause hormonal imblances that would be responsible for the lipedema...

 

It's all very interesting to think about!

[Thickleg]

Hi!

 

Thank you very much!

 

Now it was me who had to do a quick google-search for "PCOS". I was never diagnosed with hormonal disbalance in general or PCOS in particular and would say, I never had that - except of the shape of the body. I have looked at several "before-after"-pictures of PCOS and there I found myself - in the before-part, of course. I guess they found a signifant correlation between celiac-disease and PCOS. And as gluten might be the common cause of both conditions (besides a multitude of others) of course there was a correlatioin to be found.

 

I have look up lipedema once again and the symptoms come from inflammation of the body fatty tissue. I've read about some very severe cases, and once again I found that I have all they describe, too - but in a much minor degree. I estimate that I am 14 kilos overweight.

 

Thanks to your description of your former condition, I realised, that since I went gluten-free I didn't experience my shoe-laces hurting me, so that I had to loosen them. Before going gluten-fee; I had that regularly. My feet were bloating, not very much, but they were bloating. This is a fact that only in this moment I realise must have ben a symptom of gluten-intolerance. Trying to remember, when my feet were bloating I see myself in a reunion, sitting at tabels with about twenty other people. And I see the croissants and the pieces of cake on the table beside the coffee and the orange juice. I loved the croissants and the cakes. Especially, as at home, I NEARLY NEVER had such foods. I was persuaded, that a croissant or a little piece of cake every now and then wouldn't harm. The tipical out-of home-goodies. The same way I thoght a little piece of bread or a tasty bun out at the restaurant every now and then wouldn't harm. Or a peace of cake at the traditional meetings in advent season. Well, it harmed a lot! 

 

You wrote it took you half a year until the condition resoved. So I will be patient for another 4 1/2 months.

Edited November 3, 2013 by Thickleg

[Thickleg]

I was dooing some further research in the internet about a skin condition affecting mostly my arms I have had for 30 years now. I am absolutely overwhelmed by the result.

 

At the end of a cascade of searches I looked for "prurigo nodularis gluten". I found this thread:

 

https://www.celiac.com/forums/topic/95047-please-take-a-peek-for-me/

 

These pictures could be from my arms! Pictures 2, 4 and 5 have been more or less my all-day-condition for the last 30 years. My arms are full of white spots (scars) as described in an answer to the original post. Pictures 1 and 3 fit too, but not regularly; picture one even very seldom (once every few years - probably after a reunion with two croissants in the morning, noodels for lunch and cake during the afternoon-pause). It's all DH... it's all a symptom of gluten-intolerance!

 

(I have decided to talk about "gluten-intolerance" and not "celiac disease" to avoid the discussions with friends about what the symptoms of celiac disease are (instant diarrhea, condition so grave that you have to been hospitalized) and how a celiac has to look like (skinny; surely not overweight). And by no means will I have an official diagnosis. Doctors and therapeuts had their chance for 55 years to find the diagnosis.).

Edited November 3, 2013 by Thickleg

[Jadine]

Hi, I'm new. I googled gluten and lipedema and this site came up. I'm gluten/wheat sensitive. I've had several things which appear to be connected with gluten. Was diagnosed with Lupus, have had anemia really badly on a few occasions. Hospital investigations couldn't find a reason. I've had a rash on my leg which wouldn't go away with doctor's prescription. I left gluten out if my diet and the rash went away.  My doctor said it was a gluten rash and I must be sensitive.  Long before I ever heard of gluten I was having allergic reactions. A slice if toast would give me dreadful heartburn and make me sick. I cut it out for the first time and my heartburn disappeared almost immediately. I also started to lose weight and my blood pressure normalised. I sorted all this out myself.  Unfortunately, trying to fit in with other people I ate some bread and symptoms came back.  I am afraid I haven't stuck solely to keeping wheat out if my diet. I often wondered if I was just making a fuss and told myself I could eat anything. Wrong decision. I have dieted on and off for years, especially to get my very heavy legs slim.  Discovered I have lipedema. I wonder if gluten has something to do with this. Has anyone recovered from lipedema by leaving gluten out of their diet?

[LilyoftheValley]

I have had lipedema since I was 13 years old. And I gave up gluten a few months ago. The association to me now is clear. My swelling has gone down dramatically and I also drink a gallon of water a day and that has also minimizes swelling. My legs are almost normal and that's coming from someone who has had anorexia and still walked with elephant trunk legs. 

I remember when I was 9 or 10 eating so much bread in one day because I loved it so much that I went to sleep that night with the worst pain in my legs that I had ever experienced. That pain turned into lipedema. I suggest gluten free also as a first step to lipedema recovery but my legs are still swollen and that may take more time. 

Gluten free foods also like rice or buckwheat will also set off swelling for me. Is there anyone who has experienced the same?

[Jenni40]

On 11/2/2013 at 3:28 PM, Thickleg said:

O, thank you so much! It's the first time in my life that I meet somebody who like me has thick calves! In all my life I never had high winter-boots, because the boot-legs were not wide enough. They would never fit. I had boots to work in the mud, with wide bootlegs, so you could put the lower end of your pants into the boots. Only those kind of boots had the right size for my calves. I have had that all my life. For me it is unbelievable, that an entire life I had a problem with gluten without ever realising where the cause of the ever changing ailings lay. I once showed a doctor a finger with - as today I know - DH. He had no idee and gave me a unguent. I have had DH (in a very light or light form) for years. In restrospect, the intensivity of my DH must have been correlated with my gluten-intake.

 

My fatty tissue at my legs hurts when I squeeze it and I often have bruises; these are tipical symptoms of lipedema - did you have this too?

 

I find it strange that while surfing the internet I could not find any correlation between gluten and lipedema. For me, the way I experienced the gluten-intake via the rye-bread and the deterioration of my health, the correlation ist clear. There are clinics all over the world for treating lipedema - but not one mentions gluten as a possible cause. Only in forums like this one I found the correlation between "gluten" and "water retention".

 

Well - at least with this thread future internet-searchers for the causes of lipedema will find a hint here to a possible cause!

I am almost in tears reading this and realizing that I may have found my answer to the reason I have had such severe swelling in my calves primarily for the last 8 years. I was given a diagnosis of lipedema a few years back with no clue how to solve this problem. Tried lymphatic drainage techniques, stockings, etc... This began with my first pregnancy and I would describe my legs just as you have. They are tender in the areas of swelling, look and feel like elephant trunks. I have tried water pills and nothing has worked. This completely makes sense. I am praying that trying the elimination diet will help me!! How long did it take everyone for the swelling to go down?? I also have been trying to figure out why I have such severe daily headaches/migraines. I appreciate all advice you have on this....

jenn 

[GFinDC]

Hi Jenni40,

I had ankle swelling and lower leg swelling and feet swelling for a while before going gluten-free.  Actually my hands would swell and face also.  Swelling like that can be a symptom of allergies also.  Anyway, my swelling went away after going gluten-free.

You can get tested for celiac disease by a blood antibodies test.  It is much better to get tested for celiac before going gluten-free.  The testing is not accurate if you aren't eating gluten before hand.

[Posterboy]

18 hours ago, Jenni40 said:

I am almost in tears reading this and realizing that I may have found my answer to the reason I have had such severe swelling in my calves primarily for the last 8 years. I was given a diagnosis of lipedema a few years back with no clue how to solve this problem. Tried lymphatic drainage techniques, stockings, etc... This began with my first pregnancy and I would describe my legs just as you have. They are tender in the areas of swelling, look and feel like elephant trunks. I have tried water pills and nothing has worked. This completely makes sense. I am praying that trying the elimination diet will help me!! How long did it take everyone for the swelling to go down?? I also have been trying to figure out why I have such severe daily headaches/migraines. I appreciate all advice you have on this....

jenn 

Jenni40,

If you were in a third world country especially one where rice is your main diet they would of diagnosed you with (Wet) beri beri...because that is where doctor's see it and recognize it still....

If it happens in wheat eaters.....there is a mental bock about people eating wheat getting beri beri...

the swelling (common in the lower extremities) you are experiencing quoting not because chiropractic's per se, know anything about more beri beri than others...they just had a convenient description of your condition

https://www.chiropractic-help.com/Generalised-muscle-weakness.html

"Because the nerves to the limbs are so dependent on Thiamine, a deficiency causes wide-spread, bilateral weakness, numbness and tenderness, particularly in the lower legs and calf muscles."

Also see this Pearl Stats Article that explains it well...

https://www.ncbi.nlm.nih.gov/books/NBK537204/

There are many forms of Beri Beri....I had ankle swelling from diabetic complications that got better taking Benfotiamine....but doctor's dont know about Vitamins deficiencies these day's (often) because they concentrate so much on medicines' they don't have time to study vitamins...

You don't have to have diabetes ....it can just be more pronounced often in Diabetics...

see this article entitled "The multifaceted therapeutic potential of benfotiamine."

https://www.ncbi.nlm.nih.gov/pubmed/20188835

And about the third world countries where it is still being diagnosed  here is a nice article from India explaining how "Wet Beri Beri" can lead the bilateral edema's (Leg swelling) you are experiencing..

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3841631/

My nephew has the same problem and after starting Benfotiamine his "GERDING" of his legs and calf muscles has gotten better after taking Thiamine... The Benfotiamine form is a fat soluble form found in the diabetic section highly absorb-able by the body....most people notice a difference in 3 to 4 weeks and a sustained difference in 3 to 4 months....because it is fat soluble....taken with  meals is best for absorption....

I hope this is helpful but it is not medical advise.

Posterboy,

[Posterboy]

Jenni40,

I couldn't get everything in one post/reply.....I wanted to say if the Benfotiamine doesn't help in the first month to six weeks consider also taking Magnesium Citrate with meals or Magnesium Glycinate anytime with or without meals.....along with the Benfotiamine....or even both of them together...

Thiamine deficiency can be refractory to a Magnesium Deficiency...

Here is an article about it...entitled "Aggravation of thiamine deficiency by magnesium depletion. A case report."

https://www.ncbi.nlm.nih.gov/pubmed/4050546

As always I hope this is helpful but it is not medical advise....just things I have found has helped me....

I found Magnesium first....so being low in Magnesium when I took Thiamine was not a problem for me.....but it sounds like it might be for you...

This article explains/summarizes it well...together (Magnesium and Thiamine are team players)

https://www.wellnessresources.com/news/magnesium-and-vitamin-b1-team-players-needed-for-brain-muscles-metabolism 

2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

[Swollenlegs]

On 11/2/2013 at 2:57 PM, iloathegluten said:

Before I went gluten free, my feet and calves were always swollen!! My pant size was a regular size, but I had to buy boots that would fit a plus size calf, and even then, they were a tight fit! I thought I was just doomed to have cankles my entire life, but going gluten free solved the problem. My shoe size also shrunk. SO crazy how one little protein can affect so much. The bloating in my gut and face went down noticeably within a month after going gluten-free, but it took about a half a year before all the swelling in my feet and calves disappeared. It helped me to stay active and also to limit alcohol and salt consumption.

Hello,

This gives hope to me. I have been stuggling from inflammation from years getting everything tested but with no result. I have 2 questions, Please reply -

1. When you went gluten free, Did you go Keto way or you ate fruits and other gluten free grains with high carbs?
2.  I am on gluten free diet from 2.5 weeks and for the first time in my life, i had clot free periods. Did you also experience same?

Do you mind sharing your before/ after pics of legs so that i can relate to myself? If not, then its also fine but please reply to above questions.

Thanks!!

Thanks a ton :)

[knitty kitty]

13 hours ago, Swollenlegs said:

Hello,

This gives hope to me. I have been stuggling from inflammation from years getting everything tested but with no result. I have 2 questions, Please reply -

1. When you went gluten free, Did you go Keto way or you ate fruits and other gluten free grains with high carbs?
2.  I am on gluten free diet from 2.5 weeks and for the first time in my life, i had clot free periods. Did you also experience same?

Do you mind sharing your before/ after pics of legs so that i can relate to myself? If not, then its also fine but please reply to above questions.

Thanks!!

Thanks a ton

The person you quoted hasn't been on the forum since 2013.  

Read Posterboy's posts.  He's given great information about thiamine deficiency causing lower leg edema and reducing inflammation.

 

 

[Regenia]

On 11/2/2013 at 5:28 PM, Thickleg said:

O, thank you so much! It's the first time in my life that I meet somebody who like me has thick calves! In all my life I never had high winter-boots, because the boot-legs were not wide enough. They would never fit. I had boots to work in the mud, with wide bootlegs, so you could put the lower end of your pants into the boots. Only those kind of boots had the right size for my calves. I have had that all my life. For me it is unbelievable, that an entire life I had a problem with gluten without ever realising where the cause of the ever changing ailings lay. I once showed a doctor a finger with - as today I know - DH. He had no idee and gave me a unguent. I have had DH (in a very light or light form) for years. In restrospect, the intensivity of my DH must have been correlated with my gluten-intake.

 

My fatty tissue at my legs hurts when I squeeze it and I often have bruises; these are tipical symptoms of lipedema - did you have this too?

 

I find it strange that while surfing the internet I could not find any correlation between gluten and lipedema. For me, the way I experienced the gluten-intake via the rye-bread and the deterioration of my health, the correlation ist clear. There are clinics all over the world for treating lipedema - but not one mentions gluten as a possible cause. Only in forums like this one I found the correlation between "gluten" and "water retention".

 

Well - at least with this thread future internet-searchers for the causes of lipedema will find a hint here to a possible cause!

I am 46 yrs old and was just diagnosed with celiac disease 9 months ago ,the horrible swelling in my legs ,feet and ankles mixed with No Energy .I gave in and went to doctor and was admitted in the hospital after many test, and a blood transfusion , Gluten was the cause .. I am now gluten-free and feeling much better...

[LCAnacortes]

I found out in April 2022 that celiac runs on my mother's side of the family and several of my cousins have been diagnosed or has the DNA marker or has symptoms. My mother had serious water retention in her legs, feet and ankles all of her life and water pills didn't help.  I started retaining water around the time I turned 30.  The doctor wanted to put me on water pills but I refused since they didn't help my mom.  After talking to my cousins I started researching and discovered this site.  I have classic symptoms - water retention, severe, chronic diarrhea and the rash around my neck.  I stopped eating gluten and dropped over 10 pounds over night.  Sounds like it will take a while to get rid of all of the water but I am so grateful for this thread.  I finally have a reason for all of the water in my ankles that makes sense.  Not to mention the diarrhea finally cleared up too.  Thank you, thank you, thank you!

[trents]

Welcome aboard LCAnacortes!

Thanks for all you kind words.