NatZag

I have a pain in my lower right leg that has been occurring randomly over the last few months. It almost feels like my bone is about to split or theres a ton of pressure on the bones. I'm concerned that it has something to do with osteoporosis but I think I am just psyching myself out. I know there is a heightened risk with celiac disease so that is why I am concerned. I guess I should mention that I am only 20 years old and have been gluten free for about a year and a half now. Should I get anything specific checked out by a doctor or should I just mention that my leg feels this way? Has anyone else had this pain?

ahh. that could explain a bit. thank you so much! :]

I was trying to research if herbal essence shampoo is gluten free or not and i can't seem to find it anywhere. does anyone know if it is gluten free or not?

i will admit that I've never felt better except for these last few days. I've stopped eating french fries at school and surprisingly my dh is going away! unfortunately I've lost more weight and gotten down to 95 lbs. i know theres nothing i can do about it but i just get so frustrated because i look in the mirror and see my bones poking out when they never used to.

i know I'm being stronger than most people would be at this age and who are dealing with this but i just don't feel strong enough. i want to be completely over this and not be so upset anymore about something i can't control. i have it and i need to deal with it. i think the thing that makes me the most upset is knowing that when I'm older and plan on having kids i could pass this on to them. i shouldn't be so upset about that because for one its forever away and two i know if they do have it they'll lead a healthier life.

just so many little things that i shouldn't be worried about.

i do have a GP.

A year is a long time ! And half and hour away isn't too far away.

Relationships can be so good and so tough at the same time. I could tell you some stories! But I don't like to talk about the bad ones anymore. Be sure he takes good care of you. Can I ask why the no contact/talking rule? I wish I could have one of those with my ex (my sons dad) Must be very very tough on you.

I would LOVE to visit your bit of Nth America. Must be so beautiful. I've always imagined myself on a yacht sailing around those lakes. Then up to Nova Scotia. Would need a big trailer to get from one to the other I guess ?? Final stop somewhere quiet in Central, or Brazil maybe..

I always used to think I was dehydrated - really dry skin which cracked etc, dry hair, dry mouth. The gastro symptoms were never severe like yours Nausea and some D at the worst. Years of bloating and C. As strange as it might sound I actually consider myself lucky that I went to work at a bakery and had a massive breakout of (undiagnosed) DH.

My mum use to give us flat lemonade when we were sick as kids. I do the same when Liam get sick. Pour out some the lemonade then shake it lightly with the lid on then release the gas. Keep doing this until the bubbles/gas gone. Little tiny sips, no gulps. Goes down easier than water.

A really good piece I got from a forum member: If you can go and see the same doctor so your medical history is in one place. If you can't, visit hosipital etc do whatever you can to get the records. With all the test results etc included.

Tell me about your diet? How are your cooking skills?

the no contact/talking rule was so that we would actually take this seriously. we're each others best friend and we both love hanging out with each other so if we were in contact we would probably end up seeing each other and not taking the time to find ourselves and work on what we need to. its extremely tough. i know i need to be stronger and that i rely on him for my strength to the point where it stresses him out. a part of me is just hoping he'll show up at my door to make sure I'm okay. but the break is pretty serious.

michigan is amazingly beautiful. the great lakes are some of the best vacation spots in my opinion. :]

i still haven't been able to keep any liquids down today. i tried gatorade and i did pretty well with it and then i tried some pretzels that were gluten free and those put me over the edge and i got sick. I'm so weak that i don't even have enough energy to get sick anymore. my stomach is killing me and i have no energy. i can't even sleep. every time i try I'm just tossing and turning.

my diet consists of a lot of snacks. a lot of chicken meals and french fries here and there at school. my cooking skills...i actually wanted to be a chef for a long time but every since I've been diagnosed i just find that it would be depressing to put myself through culinary school when I'm not as strong as i should be for that.

It sounds like you are a determined young woman! Keep it up! Eat well, drink lots of water and work out at the gym three times a week just as you said! It is good to take control of whatever you can especially when it feels like the gluten has been boss!

BTW I know what you mean about family. Can be very hard to handle. I heard a funny story yesterday from a friend who had done a training course. At the end of the course the instructor instructed them that they must not spend time with family at Christmas if it just causes them grief kinda strange but there sure is some truth in it too. The worst day was hearing this one: 'oh its just a bit of a wheat allergy'. Not long after that one I thought I better 'get real' about it so I told what needed to be said and showed what needed to be shown. I stopped wearing long sleeves and whenever I come across a doubter I show them my upper arms. Handy when at restaurants too. People are finally taking me seriously - and they are so lucky I haven't shown them my thighs ugghh. My boss has been amazingly supportive.

I'm a single mum so I have a lot of time alone especially after bedtime. It can get very quiet and lonely. Fortunately I now have much more concentration to read - I haven't read so much in years. I don't like TV much (not nearly enough British comedy!). I tend to spend far more time on this forum than what is probably considered healthy (??) but its been my saviour on soooooo many occasions!

I watched Julie&Julia movie the other day about French cooking. What a dufus. Should have had some snacks on hand I really miss swimming. It'll be a long while yet till I get that brave..

What do you do socially? What makes you laugh? Tell us more about that lovely boyfriend? How far away will he be? What will he be studying?

Socially i don't really do much anymore. I lost all my girlfriends a few months ago to backstabbing so I pretty much just have my boyfriend for now. What makes me laugh is pretty much everything. I'm very easily amused but lately it seems to be dwindling down to less and less things. My lovely boyfriend is not my boyfriend anymore for awhile. We're on a break as of friday until the day before my 19th birthday (december 7). BUT he's the most wonderful person I've met. He's not like other guys. He doesn't tell me I'm pretty 24/7 and i actually like that. when he does say it my heart skips a beat because i know he really means it. he's not as emotionally mature as i am which bums me out sometimes but i love him so much that I'm willing to put up with everything. being a girl i naturally fell in love first and he isn't quite sure what love means yet. as much as i want him to fall in love right away i respect that he's waiting until he knows its right. everything he does makes me smile. just being around him makes me feel safe and like i can be myself. I've never been able to be myself around anyone but him. he doesn't make me feel different. he eats gluten free food with me and buys me food at school when i don't have a lunch. he comforts me when i feel sick. he's only going to be about a half hour away he got accepted to the university of michigan! (I'm so proud of him!) he will be studying computer science and math. we'll be dating for a year on december 13 and this is my longest relationship as well as his.

being without him right now is really making what i think is depression worse. we have a no contact and no talking rule in place until december 6th and yesterday i really needed him. I'm dehydrated and can't keep anything down. not even water. i went to the emergency room but ended up leaving because they weren't going to have a bed open for another few hours and i was too exhausted to want to wait. i just wanted sleep. I'm miserable right now and a hug from him seems to be the cure. i don't really understand why i got dehydrated. I've been drinking water more often than i usually do...

There's alot of emotions that come out whn you learn you have celiac. It changes the way you look at the past, the way you look at your future. It's one of those things where you ask yourself too many questions that you may never have an answer for. You wonder who you should say anything to and wonder how to condcut yourself outside of the home. However, I think you will find the longer you are off gluten and your body starts repairing itself that your mental state will also improve. You'll learn what questions to ask the waiter and I personally have found more of my fiends have been interested and asked questions once they knew, I don't hide it.....I am who I am and if they think I am weird or on some kick, that is their issue, I have to do what is best for me, bottom line.

I didn't realize from your other post about numbness in your legs that you are 19.....more than likely malabsortion that has lead to neuropathy issues rather than the sciatic nerve. Personally I would not wait for your doc to tell you what to do. I know you might feel lost and want the advise of your doc but I can tell you I would be in absolute misery right now had I waited for my docs to tell me what I needed to do.

Look up each one of your symptoms and then type in "vitamin defiency." I think you will make the connection. I had a list of symptoms, ended up in ER, bloodwork ran, all kinds of tests done, everything came up negative. I asked for a copy of my labwork. I have had a lifelong problem with anemia and have been on iron most of my adult years and I know with it, if it borders I will still feel the effects as if it were below normal so I wanted to see where everything was at. I could not believe what I saw.....low marks all over the paperwork. Doc had not said one word. All in medical coding so I looked everything up one by one and found my body was suffering from a lack of nutrients. I'm a music teacher, not a rocket scientist but even I could see this was a problem. Why did the docs not? My body was so depleted that I had bone loss and they still did not make the connection, really? Like you, I READ AND READ.

I'll put this out to you. You make your own choices. Perhaps I can save you some time in your recovery process. Realize I am 48 and so my ability to heal is not as good as yours, more than likely. I also was pretty bad off and I had gone too long without proper medical attention so it may have taken me more than others to get me where I am today. Besides the gluten-free diet I also went low acidic to help regain my bone loss and heal my stomach (I was on reflux meds for 5 months) and I ate no dairy for the first 2 months. The rest was supplementing and this is the part wanted to share. However, if you decided to supplement, look up each vitamin to see what the side effects can be. There are certain vits we have to be careful not to get too much in our bodies to prevent toxity (B6, D, K, and A). Don't let that scare you. Here is what I did and why:

Vit D- (5790 IU total daily included multi & cod liver supplement) to help absorb calcium, irritability, crawling sensation on skin, joint pain, poor concentration, memory, fatigue

B Complex, WSN Nerve Support Formula (4 daily) each contain thiamine- 103mg, Methyl B12- 1000 mg, B2- 2 mg, B6- 2 mg, folic acid- 100 mcg, B3- 250 IU for tingling in hands or feet, hot feet, anemia, nerve damage, buzzing in ears, neuropathy issues

Magnesium- (250 mg, 1-2 daily) for confusion and poor memory, fatigue, disturbed sleep/insomnia, irritability, muscle twitching, muscle contraction.

Potassium- (99 mg, 2 daily) regulate nerve transmissions and muscle contractions, restless legs, charlie horses

Iron- (vitamin c- 60 mg, folic acid- 400 mcg, B12-8mcg, iron- 28 mg)

Silicon drops- (silicon 5 mg, choline 100 mg) helps maintain bone density and strength by facilitating the deposit of calcium and other minerals into bone tissue

Multi vit w/670 mg vit C, 60 IU vit E, 9 mg B6, 25 mcg B12, 800 mg calcium, 100 mg magnesium, 15 mg zinc, 2 mg copper, 80 mg potassium, etc

Folate

Cod Liver Oil (3x daily, each 1250 IU vit A, 130IU vit D) vision issues

Probiotic- boost immune system

The only issue that has not resolved itself with the supplementing is the buzzing in my ears. I hope that helps you! Keep us informed.

thank you so much for all of this information. its a huge help for me and it puts my mind slightly at ease knowing I'm not the only one needing all these supplements. I'm definitely not waiting around for my doctors appointments anymore because they take way too long and all they do is send me to another doctor or tell me to make another appointment. stresses me out a lot. thank you so much again. I'm going to have all my vitamin levels checked and I'm going to make sure i get a copy of my lab work so i can figure out whats best for me and make sure my doctors are doing the best that they can.

Hi Natzag! Welcome to the forum. What on earth does "Natzag" mean or represent?? Hope you don't mind me asking.

I'm 38y/o mum to Liam 9y/o and Gluten Free for about 3 months (I had LOTS of mistakes and temptations for a few months before that). I live in Australia. Where is home for you?

I'm going to give you a list of things that have happened to my head and body the past couple of months so that you know what is coming your way:

* Most days I only itch and scratch a little (I was head to ankle 6 months ago. Was doing my head in)

* In the past two months I have stopped getting blackhead on my nose

* Turns out the "pimples" on my face were DH.. mostly gone now

* The redness on my face (especially over nose/cheeks) is fading

* This spring is the first time I haven't had debilitating hayfever

* My sinus is finally starting to stop dripping

* I haven't had a sinus infection for about 2-3 months ((I had them pretty much constantly all year round))

* I haven't had that incredibly short but very painful nerve burst in my middle toe left foot

* I think my nails are getting some strength

* I want to get out of bed in the morning

* I get out and play with my son

* I've been getting back in contact with friends and family after years of hiding in the misery

* The brain fog is pretty much in check most days

* People are telling me I look great ((wow))

* My week long heavy periods are no longer (past 3 months - bliss) - no pain, no bloating, no moods

Please, please please just know it in your head and soul that you will write your own list.

There were many times when I nearly really really lost it mentally. I had to get really really determined and it was hard but you will start to feel good things happening and when you do let us know. We like to mix the good with the bad on here

Natzag is my nickname. first three letters of my first name and first three of my last name. :]

Australia? Ive always wanted to go there. Home for me in the united states. michigan to be exact.

for awhile my face was as clear as can be but just recently its started to freak out slightly and i don't know if its because i found out that i can have french fries and started eating them more often than i should and i hadn't had all that grease and salt in awhile. or maybe it was because the salt on the fries wasn't iodide free?

I'm going to start going to the gym three times a week to try and gain muscle back in my legs and hopefully that will make the numbness go away. i don't really feel my concentration getting any better. although i do believe i have undiagnosed ADD and that could be causing the problem with that. I felt more awake for awhile but i seem to have lost all my energy ever since i let myself come to terms with the fact that i am depressed.

i just feel very alone a lot of the time even when i know that I'm not. my emotions are going crazy. I'm naturally an extremely sensitive person and lately i just want to cry until i can't anymore. i get angry faster and upset often. i hate when people ask me about being celiac or how I'm doing. i almost want to keep everything to myself. when i find out things about me (i.e. the possibility of malabsorption) i feel like I'm more of a burden than anything when i tell people about it. at the same time I'm the type of person who needs to talk about it to feel better. i don't like keeping it all in my head and trying to figure it out silently. i need to verbally communicate it with someone even if they don't say anything back. i feel like I'm going crazy sometimes and that I'm causing people way too much stress which then stresses me out and makes me feel even more alone.

I am sorry that you are feeling so bad, sweetie, and depressed, and it sure doesn't help that your boyfriend is going away to university. We all need a support system and someone to talk to, so talk to us and we will try to help you and be your support system..

One possible reason, also, that you are feeling so down is that many of us go through a withdrawal from gluten, much like quitting smoking, which can last for 2-5 weeks or so. It is something that we just have to grit our teeth to and get through to the other side, and the sunshine

Nervous system problems and weight loss are also major problems with many celiacs and should start reversing once healing starts to take place. But it is not an overnight process - depending on how badly damaged your gut is and one how long you have been sick, and, well, just anything at all, it could take longer or lesser amounts of time. We just can't predict.

Malabsorption is one of the side effects of celiac and leads us to become deficient in many nutrients we need to make us feel at our best. You should ask your doctor to check for, at the minimum, Vit. D, B12 and folate, ferritin, potassium, calcium and magnesium, and you should have your thyroid function checked too as celiac often screws this up too. In the meantime, you can start taking a sublingual (under the tongue) B12 so it doesn't have to go through the malabsorbing stomach, and at least take a high strength multivitamin and multimineral until you find out what things you are deficient in. If you are like most of us, there will be several.

One thing you might want to do is contact your local celiac society and see if they have a support group near you. It often helps to meet and talk with people who are going through the same things you are. They can give you shopping tips, recipes, and just "general support"

thank you so much for all this information. it really helps. and i love this site. my family isn't exactly the most supportive of all the emotions I've been having and having my boyfriend leave is making things worse.

i find it odd that I'm having so many problems because my endoscopy showed that there was no damage to my gut because we think we caught it so soon. but i do believe I'm having malabsorption problems because i just don't feel very strong. i went to the gym today and realized how weak I've gotten over time. I've looked for a local support group around my area but they don't exist. only online ones which i don't really want to join because i need to see it in person that people are getting through this.

Hello,

I am almost 19 years old and I just found out a month ago that I have celiacs. I also have dh, possible malabsorption problems, possible nerve damage in my legs, and major weight loss. I have recently gotten to my lowest weight I can ever remember being at. 98 lbs.

I know that i am being really strong with all of this and i haven't eaten anything that i can't. although i feel very alone. i feel like I'm treated differently by people now and everyone is afraid to eat around me. i don't want them to feel bad. but I'm realizing now that i am depressed and i don't know how to deal with all of this at once. my biggest supporter is my boyfriend who is now transferring away to a university.

i don't know how to cope. does anyone have any tips they can give me as to how i should find happiness again?

i havent talked to my doctor about any of this yet. he is unavailable until december 22 which is my appointment. i have just been researching (or trying to at least) everything and anything that I can. it seems that every day i learn something new about my health.

Don't let this go. Assuming you have not had a recent back injury that could be causing your issues, it does sound to me like you may have nerve neuropathy issues, more than likely due to a lack of absortion. Makes sure you ask for your lab results if doc says your vit levels are good. I would be concerned about the B12 especially. I had terrible burning pain in my feet, stabbing pains in between fingers and toes. I found a wonderful B complex used my patients with MS and diabetes and it helped me ALOT. If interested, it is called WSN Nerve Support Formula which is sold thru Amazon. Take note of your iron and D levels as well, very important that your body receives the proper nutrients in order for it to function.

i haven't had a back "injury" but i have been having sharp pains in my lower right back and it travels all the way to right above my right hip. they come and go but they feel like someone is stabbing me repeatedly. i have no pains other than that. my legs just don't have feeling. i have tried to do some research on it but it all leads me back to diabetes. my upper endoscopy revealed that none of my villi have been damaged. could it still be possible that i have a problem absorbing nutrients?

Did you have more testing on this? I am currently experiencing a burning pain in my calf area which looks like its linked to Peripheral Neuropathy. I found the article on this site.

i have not had any testing on this yet. my next appointment is dec 22. my pains don't burn however. they aren't even really pains at all. i just have no feeling in certain parts of my legs and they "fall asleep" very easily lately.

Ive already been diagnosed with celiacs. I had an upper endoscopy but it showed that i didn't have celiacs. however. my doctor believes that we caught it so soon that it didn't have time to destroy my villi. i have been taking b12 supplements. i didn't know about the iodine though. I will have to look into that. I'm pretty positive that I'm going to need to get my iron and vitamin d levels checked because like i said i don't even feel how cold i get anymore. is there any way to reverse the nerve damage or prevent it from becoming more of a problem? I've heard that building muscle can help reduce it but like i said i still need to talk to my doctor.

I am curious about nerve damage and its commonality with celiacs. Lately i have been losing feeling in my right leg. Not enough to cause me major discomfort but scary to have happen. Do any of you have nerve damage? I'm going back to the doctors this month so I'm going to have him take a look at it for me. Could it be from low iron levels? My hands and feet also get extremely cold all the time to the point where I don't even notice it until someone asks me if i need socks or a blanket. Should I have my doctor check my iron and vitamin d levels before I go right into taking supplements myself?

I also believe i have dermatitis herpetiformis. i have read a lot about it and it says it should go away with a gluten free diet. however, mine are spreading to my other leg and getting worse instead of better. I don't know what to do. being so young (almost 19) and so new to all of this I'm confident in saying that it is causing me to become slightly depressed. there seems to be nothing i can do about my dh other than deal with it. they itch all the time and i end up scratching them in my sleep.

any advice is welcome.

I am curious about nerve damage and its commonality with celiacs. Lately i have been losing feeling in my right leg. Not enough to cause me major discomfort but scary to have happen. Do any of you have nerve damage? I'm going back to the doctors this month so I'm going to have him take a look at it for me. Could it be from low iron levels? My hands and feet also get extremely cold all the time to the point where I don't even notice it until someone asks me if i need socks or a blanket. Should I have my doctor check my iron and vitamin d levels before I go right into taking supplements myself?

I just recently talked to my mom about the cross contamination with our oven and how it could be effecting me. I know she loves me and is trying but sometimes her reactions seem very selfish. I told her I would clean out the bottom oven myself so that we can cook my foods in there so I can start feeling better and her only response was "we'll see. i use that oven for storage." I also told her i want to see a therapist so i can learn to cope with my emotions on my own and not feel like a child relying on everyone else but myself. she didn't really understand why i would need to do that. its a work in progress but i truly believe that if i can find a therapist that i can see maybe even once a month to just talk to about how I'm feeling and to help me cope with this transition i will get stronger every day.

I was also wondering what supplements you take to stay as healthy as possible. I've started taking Vitamin C, Vitamin B-12 and Fish Oil. For the last few years every time i get sick i stay sick for about three months. I'm realizing now that it's because of celiacs and what it's doing to my immune system. Will these supplements do more harm to me or will they help boost me back to normal? Also, if there are any supplements that i'm missing and you all think i should be taking could you please inform me of them and what they do for my body.

Thank you everyone for all your help. It makes me feel a lot better knowing that i'm not alone. I don't crave foods that made me sick anymore but sometimes i just feel like people are being rude by eating things i loved around me. I know I'm doing really well and all and that most people wouldn't be at the strong point that I'm at right now but i still feel depressed. my depressing (like i said in the original post) is ruining my relationship with my boyfriend. have any of you gone to a therapist or anything to learn how to deal with being so upset all on your on. i don't like feeling like i need to rely on my family or boyfriend to feel better when I'm upset. I want to become stronger faster and be able to cope on my own and strengthen my relationship again.

thank you all again. it means so much to me.

I am 18 years old and I was just diagnosed with celiacs three weeks ago. I have been doing really well but my family isn't exactly 100% on board with my food. My brother won't eat the food just because its gluten-free and my mom still makes all the food that i love but can't eat anymore. my boyfriend is my main supporter but it's effecting our relationship because i've been so unhappy and end up going to him to cry about everything when he already has enough stress with school. i was wondering how everyone learned to cope with not being able to have the foods they love. I'm having a hard time coping i think because i don't know anyone else with celiacs so its hard for my friends and family to understand the pain and emotions I'm going through when i have to explain it to them.

and advice is welcome. i need to stop letting celiacs define who i am. I'm too young to have a definition.