Desperate For Advice

[blondie5star]

Hello everyone,

I'm so terribly desperate--Ii'm a 21 year old college girl and these symptoms are ruining my life. I don't mean to be melodramatic, but please tell me if you've ever had any of these symptoms.

My legs swell all the time, every day, this is the WORST of my symptoms, and I mean so swollen that often my pants won't fit. It is SO embarrassing. It's like my body inflates and I've been to so many doctors trying to figure out why. No one ever gives me the same answer twice and nothing has improved this.

I also can't go to the bathroom like a normal person AT ALL. I eat a healthy diet that includes lots of whole grains, fiber-rich foods (whole wheat breads, whole wheat tortillas, whole wheat cereals) along with fruits, veggies etc. but I never have a bowel movement (sorry for being gross) on a regular basis. I'm either constipated, terribly, for days, and then sometimes, out of nowhere, I'll have just an attack of diarrhea.

I get lots of exercise, and drink lots of water, so I SHOULD be able to go to the bathroom like normal.

After lots of research on my own, I found celiac disease online, so I thought I'd check it out further.

I practiced a gluten-free diet for two weeks and believe me, I checked ALL the labels, called companies, (and I was STRICT, no sharing toasters, nothing with oats, barley, rye, and of course, wheat, at all) and I didn't have the same kind of swelling. I really did my research on what I couldn't eat. But I was still constipated, so I really don't know what to think.

Today, I decided to eat wheat again to see what would happen. I ate three pieces of plain, whole wheat bread, and my legs are swollen stiff and my face feels puffy, my head feels cloudy and I'm dizzy and have a headache.

It is so embarrassing, and my parents, and doctors think I'm insane. I can't keep having my legs swell on me like this.

Has anyone else had this leg swelling as a primary reaction? I have other symptoms that are listed on various celiac sites, but the swelling (or water retention?) and not going to the bathroom are the worst!

Thanks for anything you can tell me. Thanks, thanks, thanks.

-Bridget

[Dixie Gal]

Hi, Bridget! I know exactly what you're going through. It sounds like me in my 20's and finally at 55 I hope I understand some of it.

A lot of the symptoms are related to celiac disease. Maybe you have other food sensitivities if the diet is only partially effective. A 30-day rotation diet eating the same foods only once every three days staying with meat, veggies, quinoa and rice (1/2 cup per day of these) can help you identify them. Then add foods back one at a time for three days in a row. If you get the bloating (mine is abdominal), diahrrea, gas then you're sensitive. Other possible triggers are peanuts, corn, tomatoes & others. There's lots of info on the internet. It's a pain, but it's good to find the baddies. If you get a baddie, rotate another three days and try another one. It just takes time & patience (and a good journal).

I also like the theory "What makes bread rise?" related to swelling & gas. Yeast (candida) overgrowth goes hand in hand with gluten, as antibiotics and birth control pills let it get out of hand and bore holes in the gut, leading to gut permeability and eventual autoimmunity. Try web searches for candida, gut permeability, leaky gut syndrome. I used Nystatin (prescription from MD) easy on the liver, then large doses of probiotics to repair the intestinal flora. I was dairy intolerant, but the receptors in the villi have repaired and I'm ok w/ dairynow. Sugar feeds yeast, I use mostly Sweet Leaf stevia and a little saccharin.

There's a good satellite TV show "Know the Cause" and they have a website that has lots of info. They helped me close the last link. I was getting antibiotics and grain reaction from grocery store meat. The grain fed animals and all the antibiotics were undermining all my good work. Animals are fed the worse moldy grain and pass the toxins along in their meat. I've gone to grass fed beef and no antibiotics/growth hormone chicken and that made a big difference.

Don't get discouraged. I went through years of "fanny cams" and rounds of MD's. Wish I had known this stuff 20 years ago! It just takes lots of research, talking to other people, and work. And when I fall down (sweets) I just get up and dust myself off so I can start again!

[nettiebeads]

  blondie5star said:

Hello everyone,

I'm so terribly desperate--Ii'm a 21 year old college girl and these symptoms are ruining my life. I don't mean to be melodramatic, but please tell me if you've ever had any of these symptoms.

My legs swell all the time, every day, this is the WORST of my symptoms, and I mean so swollen that often my pants won't fit. It is SO embarrassing. It's like my body inflates and I've been to so many doctors trying to figure out why. No one ever gives me the same answer twice and nothing has improved this.

I also can't go to the bathroom like a normal person AT ALL. I eat a healthy diet that includes lots of whole grains, fiber-rich foods (whole wheat breads, whole wheat tortillas, whole wheat cereals) along with fruits, veggies etc. but I never have a bowel movement (sorry for being gross) on a regular basis. I'm either constipated, terribly, for days, and then sometimes, out of nowhere, I'll have just an attack of diarrhea.

I get lots of exercise, and drink lots of water, so I SHOULD be able to go to the bathroom like normal.

After lots of research on my own, I found celiac disease online, so I thought I'd check it out further.

I practiced a gluten-free diet for two weeks and believe me, I checked ALL the labels, called companies, (and I was STRICT, no sharing toasters, nothing with oats, barley, rye, and of course, wheat, at all) and I didn't have the same kind of swelling. I really did my research on what I couldn't eat. But I was still constipated, so I really don't know what to think.

Today, I decided to eat wheat again to see what would happen. I ate three pieces of plain, whole wheat bread, and my legs are swollen stiff and my face feels puffy, my head feels cloudy and I'm dizzy and have a headache.

It is so embarrassing, and my parents, and doctors think I'm insane. I can't keep having my legs swell on me like this.

Has anyone else had this leg swelling as a primary reaction? I have other symptoms that are listed on various celiac sites, but the swelling (or water retention?) and not going to the bathroom are the worst!

Thanks for anything you can tell me. Thanks, thanks, thanks.

-Bridget

Well, if it makes you feel better, I don't think you're insane. I can't tell you exactly what your problem is, but your body is telling you something isn't working right. You may have a simple wheat allergy, a gluten intolerance, or celiac. For starters, I'd get another dr if possible, he's obviously not giving serious attention to your problems. And another thing that you have done that proves you are a rational person is that you have researched and done your own testing. The not eating gluten is the diet challenge and you have now had a positive diet challenge for gluten. Just what type of reaction is what needs to be dx'd. You could go to an allergest and have tests done, focusing on food allergies. If you are still ingesting gluten, you could try to find a competent dr, or at least one who would run the full celiac panel, which is just a blood draw. That could point someone in the right direction. And don't back down, the dr isn't paying for this. By the way, how long have you had the swelling and bowel problems? Keep us posted; don't ever hesitate to ask questions because we've been there and have heard it all.

Annette

[blondie5star]

  nettiebeads said:

By the way, how long have you had the swelling and bowel problems? Keep us posted; don't ever hesitate to ask questions because we've been there and have heard it all.

Annette

First, thanks for helping! I've had bowel problems for about three years, but the swelling for only about a year.

I should have mentioned that I also have osteoperosis (since I was 19) and anemia (five+ years), and my hands tingle.

How do you ask for those tests? Do I need to contact a GI doctor specifically, or can the blood tests be done at my school's medical center?

Thanks again for your help, I really appreciate it.

-Bridget

[nettiebeads]

  blondie5star said:

First, thanks for helping! I've had bowel problems for about three years, but the swelling for only about a year.

I should have mentioned that I also have osteoperosis (since I was 19) and anemia (five+ years), and my hands tingle.

How do you ask for those tests? Do I need to contact a GI doctor specifically, or can the blood tests be done at my school's medical center?

Thanks again for your help, I really appreciate it.

-Bridget

Okay, there's some more clues that something isn't working right. I don't know what kind of school you are at, if it's a major medical teaching school, then they may be able to do it. Otherwise, you'll need a more sophisticated lab to do the panel. If you can get to a GI w/o a referral and jumping through hoops, I would highly recommend it. And one who is up on the latest findings regarding celiac and gluten intolerance. Another question, rather personal, is what's your heritage? Do other people in your family have stomach problems? I'm a little bit of an anomaly when it comes to celiac - half Swedish (common) but the only one on both sides with celiac. The tingling is probably from neuropathy. Has any dr. tried to find the source of your anemia? Or did they just tell you to eat iron rich foods and take b vitamins? And osteoperosis at 19 is not normal. Neither is anemia w/o an organic cause. This makes me think more along the lines of malabsorption, common with celiac. It's the malabsorption that causes celiac to be the great chameleon of autoimmune disorders. You haven't mentioned fatigue and brain fog and mood swings. Does that sound familiar to you?

Annette

P.S I have a 21 year old daughter in college too

[Dixie Gal]

Hi, Bridget, just saw mention of blood tests. My MD says they have lowered the levels to consider the gluten testing positive, but she says diet challenge is the best test. Some people are clearly gluten intolerant, but the test may not show that. They are getting ready to come out with saliva testing that is more reliable, but don't let them talk you out of dietary changes on the basis of the testing. Diet can't hurt and it certainly can help.

LOL

Kathy

[mightymorg]

Bridget, you aren't insane! I don't have the swelling problem you have (except for my tummy bloating up), but my-uh...bathroom habits ...are just like yours. Water, exercise, fiber, different kinds of fiber...nothing worked. The only thing that seems to work is coffee right in the morning (sometimes) or taking Mirilax three times a day.

[MySuicidalTurtle]

You should get tested before going on the diet again and it takes a lot longer than two weeks for your body to get sorted out.

[Carriefaith]

  Quote

How do you ask for those tests? Do I need to contact a GI doctor specifically, or can the blood tests be done at my school's medical center?

You can ask your doctor for the celiac blood test panel. You must be consuming gluten in order for the tests to be accurate. The results may come back false negative if you are on the gluten free diet.

  Quote

I practiced a gluten-free diet for two weeks and believe me, I checked ALL the labels, called companies, (and I was STRICT, no sharing toasters, nothing with oats, barley, rye, and of course, wheat, at all) and I didn't have the same kind of swelling. I really did my research on what I couldn't eat. But I was still constipated, so I really don't know what to think.

Some people feel better within a few weeks; however, I would say that the majority feel better within 3-6 months. I started to feel better on the gluten-free after about 6 months and I started to feel a lot better after about 1 year on the diet.

[lonewolf]

The leg swelling could be a sign of some type of kidney problem. When you push on the side of your ankle, does it leave a little "pit" for a few seconds? If so, this could be related to your kidneys. I had a similar experience a few years ago and was diagnosed with a kidney disease.

Ask your doctor to do a simple urine test to check for protein. Swelling can be a sign that your body is losing protein through your kidneys. If the doctor won't do that simple test, go to a pharmacy and ask for "Uristix" "Reagent Strips for Urinalysis" from Bayer. It should say "Glucose" and "Protein" on the label. If the pharmacy doesn't carry them they can special order them for about $30. If you are spilling protein you need to see a Nephrologist (Kidney specialist).

My doctor told me that my kidney disease was not related to diet in any way, but when I eat gluten-free I stay in remission. The last time I relapsed was when my husband and I travelled to Russia and I couldn't find anything to eat and gave up (this was before I suspected I had Celiac and just thought I was allergic to wheat). I ate more wheat than I had in 7-1/2 years and relapsed right after returning home. Leg swelling with "pitting" and having lots of foam in your urine are clues that something is wrong. (Sorry to be so graphic.)

Don't give up on the doctors to get an accurate diagnosis, but you might have to help them a little bit. Look up "Nephrotic Syndrome" and see if some of the information fits. But go with your feeling that it could be Celiac and avoid gluten.

Good luck and let us know how you are.

Liz

[blondie5star]

Thanks very much to all of you who've replied.

I was wondering, I had bloodwork done about a month ago to check up on my anemia (I was put on heavy duty iron supplements this summer), and my iron levels have improved, but are still low. Would anything celiac-related have shown up on this kind of blood test, or is the celiac panel completely different?

I do know that I was shown to have a particular folate (?) deficiency, isn't that B12? Sorry to be vague-I can't keep all of the iron terms straight.

Thanks again, I really can't thank you enough for giving me some answers and advice.

-Bridget

[jerseyangel]

Hi Bridget--Sorry to hear that you're having problems. There are a lot of knowledgeable people here, always willing to help. The blood panel the the Dr. uses to check for iron, etc. will not show Celiac Disease. You have to ask for a specific Celiac Panel. Folate, I believe, is not the same thing as vitamin B12. I also had edema (swelling) pre DX. Mine was located mostly in my ankles and hands. The gluten free diet has helped a lot with that. Good luck with everything --Patti

[key]

Bridget,

Definitely sounds like you may have celiac. I have the same bowel problems. Two weeks wouldn't probably clear all of it up. Sorry no one is very supportive. I feel that way too right now. My legs ache all the time right now and I am struggling with C too right now. NOt fun!

Anyway, go see a GI doctor and have the celiac panel done. Try and keep eating the wheat while being tested.

GOod luck,

Monica

[darkangel]

Try eliminating dairy, too. Many people that are sensitive to gluten are also sensitive to casein - the milk protein. Also, dairy's a common cause of constipation.

[RiceGuy]

I actually have the fluid retention in my legs and feet now, and part of my right hand still feels a bit numb. I've been gluten-free for almost a year now! The puffyness didn't show up until recently, unless I ate like a whole bunch of chips or something. It would go away in a day or two, so I figured it was the salt. However, I recently tried some soy cheese, which also has casein, and have had the fluid retention ever since. It's been I think two weeks at least. It's the only new thing I ate, as I wanted to test it and watch for any reactions. Well, I think I got the answer, but I expected the swelling to go down by now

I still don't know if it's the soy or the casein, or just coincidence.

I don't feel like discussing the bathroom stuff, but this board has a lot of posts describing your symptoms.

Anyway, you definitely should go gluten-free for more than two weeks. It took about six months before I started seeing any results. Once you know you can't have it, the diet is for life - no cheating either. And yes, other symptoms can emerge later, so you may find other foods you need to avoid either temporarily, or perminently.

[meremortal]

I have had your symptoms!! I know what you have been going through, everyone thought I was crazty too, even my husband....

I am 39 and have been having weird symptoms, for about a year now--bloating, and either constipated or on the toilet all day, fatigue, mental fog, dizziness. Usually my stomach is what bloats, but on occasion it was everything, legs, arms, and stomach, even my a$$ swelled. This would sometimes be accompinied by painfull sides...the side of my neck, arms, torso, legs...very tender to the touch.

My doctor was unable to find anything wrong with me, or should I say, he did not try too hard...he heard some of my symptoms and thought it was my thyroid levels. Even though the tests came back normal he increased the dosage of my Levothroid. which did not help at all. I went back a few times, he did a few other tests, checked me for Chronic fatigue, and a few other things, did an abdominal ultra sound, them just gave up. Even when I told him I thought it was a gluten intolerence, he wasn't interested in testing me for it. On my own I tried eliminating gluten, and it seems to have really helped. I still have some some symptoms, and I am in the processs of finding out what else I am having problems with....I plan on trying to eliminate yeast next, and thanks to the posts I have been reading, I will also try eliminating sugar.

Hope it helps to hear you are not alone,

~Sue

  blondie5star said:

Hello everyone,

I'm so terribly desperate--Ii'm a 21 year old college girl and these symptoms are ruining my life. I don't mean to be melodramatic, but please tell me if you've ever had any of these symptoms.

My legs swell all the time, every day, this is the WORST of my symptoms, and I mean so swollen that often my pants won't fit. It is SO embarrassing. It's like my body inflates and I've been to so many doctors trying to figure out why. No one ever gives me the same answer twice and nothing has improved this.

I also can't go to the bathroom like a normal person AT ALL. I eat a healthy diet that includes lots of whole grains, fiber-rich foods (whole wheat breads, whole wheat tortillas, whole wheat cereals) along with fruits, veggies etc. but I never have a bowel movement (sorry for being gross) on a regular basis. I'm either constipated, terribly, for days, and then sometimes, out of nowhere, I'll have just an attack of diarrhea.

I get lots of exercise, and drink lots of water, so I SHOULD be able to go to the bathroom like normal.

After lots of research on my own, I found celiac disease online, so I thought I'd check it out further.

I practiced a gluten-free diet for two weeks and believe me, I checked ALL the labels, called companies, (and I was STRICT, no sharing toasters, nothing with oats, barley, rye, and of course, wheat, at all) and I didn't have the same kind of swelling. I really did my research on what I couldn't eat. But I was still constipated, so I really don't know what to think.

Today, I decided to eat wheat again to see what would happen. I ate three pieces of plain, whole wheat bread, and my legs are swollen stiff and my face feels puffy, my head feels cloudy and I'm dizzy and have a headache.

It is so embarrassing, and my parents, and doctors think I'm insane. I can't keep having my legs swell on me like this.

Has anyone else had this leg swelling as a primary reaction? I have other symptoms that are listed on various celiac sites, but the swelling (or water retention?) and not going to the bathroom are the worst!

Thanks for anything you can tell me. Thanks, thanks, thanks.

-Bridget

[Nantzie]

I was just looking up something else celiac related, and came across a website that was really out of date as far as the current information about celiac, but DID mention leg swelling as a sign of celiac.

[shelly10983]

Hello,

My mother has had celiac for about 40 years and one of the symptoms she had was always leg swelling. We've went to a lot of different doctors including orthopedic, vascular, obgyn. Here were some of the things to check for:

Blood clot, vericose veins?, Mass on the abdomen or uterus?

Chances are - and as I'm reading more and more --- it's from the celiac.

I did notice a difference in my mom - when she stuck to her diet.

Don't know where you're located but best in the field is Dr. Green, Columbia Presbyterian Hospital, Celiac Center. Or Dr. Lee - second best. You will definitely get some answers from them. They're in the Bronx - a little outside of New York City. Take a trip - it would be worth it!!!

Michele

  blondie5star said:

Hello everyone,

I'm so terribly desperate--Ii'm a 21 year old college girl and these symptoms are ruining my life. I don't mean to be melodramatic, but please tell me if you've ever had any of these symptoms.

My legs swell all the time, every day, this is the WORST of my symptoms, and I mean so swollen that often my pants won't fit. It is SO embarrassing. It's like my body inflates and I've been to so many doctors trying to figure out why. No one ever gives me the same answer twice and nothing has improved this.

I also can't go to the bathroom like a normal person AT ALL. I eat a healthy diet that includes lots of whole grains, fiber-rich foods (whole wheat breads, whole wheat tortillas, whole wheat cereals) along with fruits, veggies etc. but I never have a bowel movement (sorry for being gross) on a regular basis. I'm either constipated, terribly, for days, and then sometimes, out of nowhere, I'll have just an attack of diarrhea.

I get lots of exercise, and drink lots of water, so I SHOULD be able to go to the bathroom like normal.

After lots of research on my own, I found celiac disease online, so I thought I'd check it out further.

I practiced a gluten-free diet for two weeks and believe me, I checked ALL the labels, called companies, (and I was STRICT, no sharing toasters, nothing with oats, barley, rye, and of course, wheat, at all) and I didn't have the same kind of swelling. I really did my research on what I couldn't eat. But I was still constipated, so I really don't know what to think.

Today, I decided to eat wheat again to see what would happen. I ate three pieces of plain, whole wheat bread, and my legs are swollen stiff and my face feels puffy, my head feels cloudy and I'm dizzy and have a headache.

It is so embarrassing, and my parents, and doctors think I'm insane. I can't keep having my legs swell on me like this.

Has anyone else had this leg swelling as a primary reaction? I have other symptoms that are listed on various celiac sites, but the swelling (or water retention?) and not going to the bathroom are the worst!

Thanks for anything you can tell me. Thanks, thanks, thanks.

-Bridget