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      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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

Thick Legs / Water Retention / Lipedema

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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 by Thickleg

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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.

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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 by Thickleg

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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!

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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 by Thickleg

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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:




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 by Thickleg

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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?

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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?

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