Im Young, Why's It Taking Sooooooo Long

[MauriceGreene]

I have been 100% gluten free for one month and zero improvement (just the same ups and downs), I would not be complaining if I were 60 and had symptoms for years but I'm only 17 and only had symptoms for 9 months! I dont even know if its celiacs YET at this stage it is just gluten intolerance ( got tested with blood sample, slight raised iga If I remember correctly).

My symptoms are SOO annoying and are not what you'd call classic celiac ones, I get a crippling sore throat for 7-10days and have ridiculous fatigue. To be honest I'd rather just get the s$#&s and bloating The worst thing is I am an track and field athlete and have some huge competitions I want to win in about 12-20weeks and the symptoms are killing my training. That is what is really depressing me, not the fact that I am missing food.

Also how can I pinpoint when I triggered gluten intol/celiac? I am very well grown (6ft, 165lb sounds light but I have no fat) and have all my life had my nutrient,vitamin, and mineral levels in check so can I assume that I did not have the disease in my early years like 0-15?

Sorry if this sounds like a punk just whining, I know there are plently of people on here worse off, but I am frustrated and it is only human nature to not be content! Thanks.

[CarlaB]

Sorry it's so frustrating ... I know how you feel. I have kids your age, but I've been gluten-free for 9 months now and am still struggling.

First, be sure everything you're eating is gluten-free! This is the most important thing for healing!

Eat several meals a day with some form of protein, better to have 5 small meals than 2 or 3 larger meals. Get to bed by 10. Nap when you can (not in class ). Eat food that's good for you, not junk. No caffeine or sugar. Take time every day to have fun! Simple things like this may help speed up healing. Your body needs time. Be sure to eat right after training, preferably some protein. You might also want to have a snack before, not right before, but maybe an hour or so before so you have some energy.

Just a few ideas to help bring back some energy ... they're helping me tremendously! Hope you're feeling better soon!

[Guest nini]

first of all you need to make sure you are absolutely 100% gluten free with no cheating, no cross contamination, no hidden glutens. If you aren't sure about something don't eat it. Don't just take the bun off a burger and assume it's safe. Don't just pick croutons off a salad. DON'T eat the meat at Taco Bell... (these are just a few of the tricky places gluten can hide where it takes time to figure it out). My guess is that you probably haven't found all the hidden glutens in your diet yet.

Second guess would be that you also have a secondary intolerance like dairy or soy or corn that is continuing to aggravate your symptoms.

If you have only been gluten-free for a month you are still on the upward learning curve. It probably took me a full year to figure out most hidden glutens, and even now I still run into a problem every now and then.

If you haven't already seen my newbie survival kit, click on the link below in my signature for my webpage. The newbie survival kit is linked at the bottom of my webpage for download. Let me know if you have any problems downloading it. The newbie kit is full of a lot of info I wish I had the first year after my dx.

[Kassie]

hi, i know what you are talking about. i am 15 and have been gluten-free for about 9 months. it took me a couple of months to get better and stay feeling better. it was so frusterating because i was sick for along time before being diagnosed that when i was diagnosed i just wanted to be better right then! i too am a track and field athlete. that was the first sport i did last year since being gluten-free. i think it did good for me to be running again (as in feeling better) although i was a little tired at the beginning of the season but by the end i wasn't. but i think part of the time i felt drained was at practice and not at the meets but practices were after along day of school, meets usually gave us a break from long school days. if u have any questions please ask

-kassie

[MauriceGreene]

Sorry it's so frustrating ... I know how you feel. I have kids your age, but I've been gluten-free for 9 months now and am still struggling.

First, be sure everything you're eating is gluten-free! This is the most important thing for healing!

Eat several meals a day with some form of protein, better to have 5 small meals than 2 or 3 larger meals. Get to bed by 10. Nap when you can (not in class ). Eat food that's good for you, not junk. No caffeine or sugar. Take time every day to have fun! Simple things like this may help speed up healing. Your body needs time. Be sure to eat right after training, preferably some protein. You might also want to have a snack before, not right before, but maybe an hour or so before so you have some energy.

Just a few ideas to help bring back some energy ... they're helping me tremendously! Hope you're feeling better soon!

Thanks for the advice, I eat like a horse. I always ate clean food before gluten intolerance. 9 months would be very frustrating for me you seem to be coping well!

first of all you need to make sure you are absolutely 100% gluten free with no cheating, no cross contamination, no hidden glutens. If you aren't sure about something don't eat it. Don't just take the bun off a burger and assume it's safe. Don't just pick croutons off a salad. DON'T eat the meat at Taco Bell... (these are just a few of the tricky places gluten can hide where it takes time to figure it out). My guess is that you probably haven't found all the hidden glutens in your diet yet.

Second guess would be that you also have a secondary intolerance like dairy or soy or corn that is continuing to aggravate your symptoms.

If you have only been gluten-free for a month you are still on the upward learning curve. It probably took me a full year to figure out most hidden glutens, and even now I still run into a problem every now and then.

If you haven't already seen my newbie survival kit, click on the link below in my signature for my webpage. The newbie survival kit is linked at the bottom of my webpage for download. Let me know if you have any problems downloading it. The newbie kit is full of a lot of info I wish I had the first year after my dx.

Thanks nini I am 100% positive because I have not eaten out since being diagnosed, I don't have taco bell where I live , and I have only been eating foods from the list deemed gluten free by our countries health board (www.mfd.co.nz).

I dont know about dair or soy or corn. I got a skin prick test for dairy and corn, both negative. I got tested for lactose intolerance negative. For the first 3 weeks I eliminated dairy then brought it back the past week and don't feel like anything changed. With only two symptoms, fatigue and sore throat, its hard to know what causes them.

Thanks

hi, i know what you are talking about. i am 15 and have been gluten-free for about 9 months. it took me a couple of months to get better and stay feeling better. it was so frusterating because i was sick for along time before being diagnosed that when i was diagnosed i just wanted to be better right then! i too am a track and field athlete. that was the first sport i did last year since being gluten-free. i think it did good for me to be running again (as in feeling better) although i was a little tired at the beginning of the season but by the end i wasn't. but i think part of the time i felt drained was at practice and not at the meets but practices were after along day of school, meets usually gave us a break from long school days. if u have any questions please ask

-kassie

That is encouraging to me that you did get better. Did you only have problems with gluten or was it other stuff? What type of track and field athlete were you, most people here seem to do lots of long distance running? I'm a 100m/200m person I feel as if I would die/vomit if I tried doing those now.

Thanks

[Guest nini]

try keeping a detailed food journal. You may see a pattern start to emerge. Good luck. Oh and it took me 6 months before I started to feel somewhat human and then another 2 years before I was feeling much better.

[MauriceGreene]

try keeping a detailed food journal. You may see a pattern start to emerge. Good luck. Oh and it took me 6 months before I started to feel somewhat human and then another 2 years before I was feeling much better.

6 months to feel human .... I only have 1 more month I can waste being sick or else I can kiss getting an athletic schorlarship goodbye

I will start doing the food journal thing today and also recording how I feel when and what symptoms i get thanks.

[Guest nini]

6 months to feel human .... I only have 1 more month I can waste being sick or else I can kiss getting an athletic schorlarship goodbye

I will start doing the food journal thing today and also recording how I feel when and what symptoms i get thanks.

keep in mind I was undiagnosed for 34 years... you have the advantage that you are young and should be able to recover more quickly. Good luck with it all. The body has an amazing ability to heal itself if we do the right things for it. It's just figuring out what's right that is the challenge.

[Kassie]

yah i sorta am a long distance, i do the mile, 800m, and some times the 400m. no i dont have any other food intolerances or problems that i know of.

[tiredofdoctors]

I'm so sorry you're feeling frustrated . . . it happens to all of us, though -- so please know you're not alone. I agree completely with everything everyone has said. If you are drinking protein drinks or taking a protein supplement, you may want to check it out COMPLETELY -- sometimes lists are incorrect, despite VERY thorough investigation. Also, if you take vitamin supplements, you may want to check those as well. I take Freeda vitamins, as they were suggested by a Celiac dietician which I consulted. They are "everything-" free! Gluten, yeast, blah blah blah . . . . !

I also agree about the issues of other sensitivities or intolerances. I am getting ready to go back to my allergist/immunologist from YEARS ago to discuss all of this with him. Just to be on the safe side . . .

I think the idea of a food journal (while being young I can figure would be a pain in the butt) is a FANTASTIC idea . . . I had to do this for my kids when they were little, and it was the singlemost important thing to pinpoint WHERE their problems were.

You wouldn't BELIEVE the things that can trigger difficulties in people . . . .

Keep the faith, STAY GLUTEN-FREE, but continue to investigate other solutions in addition. Also, I hate to say it, but give it a little additional time . . . . your body needs to adjust to this new lifestle.

I wish you the best of luck . . . . you have come to the right place, though. The people here are the most kind, knowledgeable and empathetic people I know . . . . . Hugs, Lynne

[eleep]

I'm not sure whether anyone's mentioned this, but have you checked all of your shampoos, conditioners, toiletries, etc....? That was something I needed to do at the 1 month mark.

I also found that feeling better was a progressive thing -- there were a lot of ups and downs at first. The stress of worrying about your scholarship may be putting you under a lot of pressure as well. I was under quite a bit of stress in the months after my diagnosis, which really magnified my frustration and feelings of exhaustion and ill-health. Try to find ways to take that pressure off of your body and mind if you can -- gentle yoga and walking for a few weeks might help (I had to stop running for a short while, myself). Healing does take energy and time and might make you feel extra-tired for a while. As difficult and frustrating as it might be to lay off activities you love, it may help speed up the healing process and get you further faster!

I'm also finding right now that acupuncture is setting my mind and body right in all sorts of ways!

eleep

[mouse]

Everyone has given great advice. Each person is different in how fast they heal. Your age is definately a big plus on your side. If you live with others, have you also checked for cross contamination issues. Like toaster, condiments, etc. Also watch any over the counter items, lipstick, shampoo, etc. Anything that can get into your mouth. Don't get depressed over not healing within one month as that could also slow your performance on the field.

Eleep types faster then I do - he he.

[MauriceGreene]

Wow I had no idea how many women dominated this forum , not a bad thing either

keep in mind I was undiagnosed for 34 years... you have the advantage that you are young and should be able to recover more quickly. Good luck with it all. The body has an amazing ability to heal itself if we do the right things for it. It's just figuring out what's right that is the challenge.

Thanks for the encouragement!

I'm so sorry you're feeling frustrated . . . it happens to all of us, though -- so please know you're not alone. I agree completely with everything everyone has said. If you are drinking protein drinks or taking a protein supplement, you may want to check it out COMPLETELY -- sometimes lists are incorrect, despite VERY thorough investigation. Also, if you take vitamin supplements, you may want to check those as well. I take Freeda vitamins, as they were suggested by a Celiac dietician which I consulted. They are "everything-" free! Gluten, yeast, blah blah blah . . . . !

I also agree about the issues of other sensitivities or intolerances. I am getting ready to go back to my allergist/immunologist from YEARS ago to discuss all of this with him. Just to be on the safe side . . .

I think the idea of a food journal (while being young I can figure would be a pain in the butt) is a FANTASTIC idea . . . I had to do this for my kids when they were little, and it was the singlemost important thing to pinpoint WHERE their problems were.

You wouldn't BELIEVE the things that can trigger difficulties in people . . . .

Keep the faith, STAY GLUTEN-FREE, but continue to investigate other solutions in addition. Also, I hate to say it, but give it a little additional time . . . . your body needs to adjust to this new lifestle.

I wish you the best of luck . . . . you have come to the right place, though. The people here are the most kind, knowledgeable and empathetic people I know . . . . . Hugs, Lynne

Thanks I will always stay gluten free, no way I'd cheat knowing the consequences!!!

I'm not sure whether anyone's mentioned this, but have you checked all of your shampoos, conditioners, toiletries, etc....? That was something I needed to do at the 1 month mark.

I also found that feeling better was a progressive thing -- there were a lot of ups and downs at first. The stress of worrying about your scholarship may be putting you under a lot of pressure as well. I was under quite a bit of stress in the months after my diagnosis, which really magnified my frustration and feelings of exhaustion and ill-health. Try to find ways to take that pressure off of your body and mind if you can -- gentle yoga and walking for a few weeks might help (I had to stop running for a short while, myself). Healing does take energy and time and might make you feel extra-tired for a while. As difficult and frustrating as it might be to lay off activities you love, it may help speed up the healing process and get you further faster!

I'm also finding right now that acupuncture is setting my mind and body right in all sorts of ways!

eleep

Yup my shampoo is safe, ive checked all other stuff too. Its good to hear that you too got ups and downs, I get a few days where I feel great then slump back down for about 3-4 days, its annoying.

[CarlaB]

Wow I had no idea how many women dominated this forum , not a bad thing either

There are men around here, too, just not as talkative as we are.

[MauriceGreene]

Everyone has given great advice. Each person is different in how fast they heal. Your age is definately a big plus on your side. If you live with others, have you also checked for cross contamination issues. Like toaster, condiments, etc. Also watch any over the counter items, lipstick, shampoo, etc. Anything that can get into your mouth. Don't get depressed over not healing within one month as that could also slow your performance on the field.

Eleep types faster then I do - he he.

Thanks for advice, I live with family which have been fantastic to me. My mother and sister both bake a lot so they always cook me gluten-free stuff and are both as paranoid as me about cc. I dont use their toaster anymore as well.

yah i sorta am a long distance, i do the mile, 800m, and some times the 400m. no i dont have any other food intolerances or problems that i know of.

Thats good to hear I am hoping I'm in the same boat.

I've also been wondering does anyone get pins and needles and mild numbness with this? I have sorta noticed my right foot getting pins and needles, sometimes my hands as well. It is usually more pronounced when I'm cold but it seems to have gotten worse and more noticable on the new gluten-free diet. This is kind of worrying me I am hoping it will go away being gluten-free for a bit longer. Anyone else in the same boat?

[mouse]

Your pins and needles and numbness, could be periphial neuropathy. I said could be. I got diagnosed at age 63 and so mine seems to be here for good. I have noticed that the younger people that have those symptoms find that going gluten-free, helps those problems leave.

You mentioned that your Mother and sister bake. Do they use regular flour before or after they make your gluten-free items. Several knowledgable people on this forum have said that regular flour stays in the air for 24 hours. You could (again I said could) be getting cross contamination from that.

[KaitiUSA]

I'm young(19) and it took me like 8 months to really get back to normal but it really depends on how much damage you have. Everyone has different healing rates.Make sure all of your products are gluten free to (like makeup, shampoo, etc) and just make sure you are not getting gluten.

[MauriceGreene]

Your pins and needles and numbness, could be periphial neuropathy. I said could be. I got diagnosed at age 63 and so mine seems to be here for good. I have noticed that the younger people that have those symptoms find that going gluten-free, helps those problems leave.

You mentioned that your Mother and sister bake. Do they use regular flour before or after they make your gluten-free items. Several knowledgable people on this forum have said that regular flour stays in the air for 24 hours. You could (again I said could) be getting cross contamination from that.

Hmm thanks again for your opinions. RE pins and needles, I have had bad circulation in my right hand since I was about 14-15 which I only noticed in the winter when it was cold, apart from the occasional pins and needles nothing I was concerned about. But I dont know what to think because only in the past two days I have been getting pins and needles a lot more, my right foot is almost getting them constantly and my hands are a bit too, not bad but still. I have been gluten free for the past month to the best of my knowledge but I still may have screwed up somewhere. Only thing I can think where I may of messed up is when I took some naturopathic remedies last week, but I was told they only had alcohol and water

Interesting theory about the cooking and flour in the air. All I know is they average about one bakery item every two days. Sometimes they use gluten free flour and sometimes they dont. They are both very aware about cross contamination. I am actually getting quite paranoid I might just tell them to stop using normal flour

[evie]

Hmm thanks again for your opinions. RE pins and needles, I have had bad circulation in my right hand since I was about 14-15 which I only noticed in the winter when it was cold, apart from the occasional pins and needles nothing I was concerned about. But I dont know what to think because only in the past two days I have been getting pins and needles a lot more, my right foot is almost getting them constantly and my hands are a bit too, not bad but still. I have been gluten free for the past month to the best of my knowledge but I still may have screwed up somewhere. Only thing I can think where I may of messed up is when I took some naturopathic remedies last week, but I was told they only had alcohol and water

quote

Have you been checked for mono? not that you would want to have more than one problem but could be!! You might be lucky enough to not have the pins and needles but a short time, I was lucky that way and I am much older than you. I am so thankful for that!! Stay with the forum and you will learn fast, sounds like you are doing a good job staying away from junk food.. that is good!! evie

[mouse]

I understand about becoming paranoid. We as Celiacs do (I am sorry to say) have to become that way, if we want to get healthy and stay healthy. Many people on here have a saying "when in doubt, leave it out". This goes for anything that we put in our mouths. I do know how daunting it is in the beginning, but it does become a relative easy way of life, after awhile. I do have some friends that are afraid to feed me and so we meet them for dinner. Of course I get to always choose the restauant LOL. I am the Celiac in my family and also the one who cooks. So, at my husband suggestion I might add, I cook only gluten-free meals. There are no longer any flours in this home that have gluten. He still has his bread, his toaster and his condiments. But other then that, everything is gluten-free. It just makes it easier and safer for me. But, there is only 3 of us and so that is probably easier for me then for your family to do this. There are others on this board that still have gluten eating family members and they have worked out systems that have worked for them.

Do please remember that this is just a learning curve. That life is to be enjoyed each day and don't stress out over what cannot be changed.

[spunky]

Hello!

I've read everyone's thoughts and experience on this and would like to add that it seems to take a long time to see hints of improvement, then you might feel worse again, or worse in different ways and get very discouraged before you start seeing REAL improvement. For me it was a wild roller coaster ride. It sounds like you're pretty careful about cross-contamination. I found a facial scrub was aggravating me for a while, but it took me a lot of running through the house reading labels on everything, recounting everything I did, before I could put that one together and throw that nasty junk out.

Also, I would like to add that I have been casein free for 10 years now. I think that the lactose and casein in dairy products can be as damaging to some people as gluten. I have seen here that some people go back to dairy after having been gluten free for a few years with no problems. I'm not sure I'll ever feel like trying, myself. Fake ice creams and such (make sure you read labels...not all are gluten free) are just as good as the real thing. I believe that it's possible the reason my healing has been happening so "fast" (It has seemed very slow to me--just now feeling really, really good, pretty consistently, in my 8th month, but apparently, that's really fast!) might be because I'm not ingesting any dairy products at all either, although I'm sure this is different for everybody.

Anyway, it seems to take a very long time while you're waiting for improvement. I'd give it at least 3 months and then see if there are at least just hints that you're moving along in the right direction.