Newbie And Scared

[rutland]

Hi all. Im new to this site and I am so relieved to be amongst people who understand. Ive been dealing with unexplained symptoms for years. Ive been to one doc after another with complaints about debilitating fatique and a general sense of malaise. I was always treated as though I were a hypochondriac. I swear that after a while I started to feel like one. I started to feel like, Maybe Im just a sleepy, tired, depressed, gassy, bloated, achy kind of girl. Athough I have been experimenting with my diet over the years and it was about two years ago that I went gluten free. Over time I got better and then I reached a place where I was feeling good. However I never really understood that it was the gluten free diet that reversed my symptoms, I guess I just thought that it was because I was eating healthier in general. So in celebration of my new found lust for life I started indulging. At first it would be a few bites of a peice of cake, maybe a little peice of bread with some butter (you know restaurants cant do without the warm rolls and butter). How could I refuse. Gradually, my health declined once again. Now I feel so frusterated and lonely. My boyfriend broke up with me, said he cant deal with my problems. By problems he means me being so tired and talking about my symptoms. My friends think Im a hypochondiac and Im getting nowhere with doctors. I went gluten free one month ago and I see improvements but I still feel like hell. I went to see a doctor at a integrative health center at a reputable hospital (I live in Philadelphia) and I was so excited at the thought of possibly being diagnosed so that my friends and family would understand that this is a real condition. Well that day came and much to my disappointment the doc was a jerk. I told him about how I have healed myself in the past on a gluten free diet and I just wanted to be tested. He told me that from what Im reporting, it wasnt clear to him that gluten was my problem. Now Im nursing myself on this diet and need some support. Does anyone know how long it takes to start feeling better?

[ravenwoodglass]

Everyone is different in the amount of time it takes to heal and a lot depends on which body systems were effected the worst. Some see some resolution of symptoms right away and it is dramatic whereas others will have a more gradual recovery with a lot of ups and downs. Welcome to the boards and ask any questions you need to. There are a lot of folks here in your situation and most of us know how frustrating it is to get doctors to listen. The good thing is you know your body, you have realized that for you gluten is a poison. Eliminate it from everything including your toiletries and hair products, get yourself a good gluten free vitamin and some extra gluten-free sublingual B12 and hopefully you will feel like a new person soon.

[rutland]

Everyone is different in the amount of time it takes to heal and a lot depends on which body systems were effected the worst. Some see some resolution of symptoms right away and it is dramatic whereas others will have a more gradual recovery with a lot of ups and downs. Welcome to the boards and ask any questions you need to. There are a lot of folks here in your situation and most of us know how frustrating it is to get doctors to listen. The good thing is you know your body, you have realized that for you gluten is a poison. Eliminate it from everything including your toiletries and hair products, get yourself a good gluten free vitamin and some extra gluten-free sublingual B12 and hopefully you will feel like a new person soon.

Thanks for the info. Ive read conflicting things about using gluten containing body, bath, and cosmetics and whether they actually affect the celiac. But believe me I will try anything. Can you list some of the products that you use? What about makeup? What is the quickest way to know if a product is gluten free? What brands of vitamins are good? Ive been using Rainbow light it says on the label that its free of gluten and many other potential allergens.

My symptoms are strange because Ill feel good one day and Ill get all excited and the next day I feel like hell again. Is this common? to fluctuate so drastically? Even in the course of one day my symptoms will fluctuate back and forth.

[FaithInScienceToo]

I have a few suggestions:

ONE)

Forget about those who are not supportive - they are out there, and they WILL try to drag you down as people cannot be supportive when they are avoiding their own health issues, or when they think they know it all (like many docs)...SO, you need to actively find supportive people/docs.

TWO) You MUST get yourself properly diagnosed:

Find out if you have antibodies to gluten and casein other food intolerances/allergies:

You can EITHER try a TRUE 'elimination diet' - OR get yourself tested via Enterolabs, or another on-line site - it's pricey, but the info you gain is priceless...see links below -

IF you do an elimination diet....You may want to try an allergen free supplement to make it easier, while you eat only the typical allergen free fare of rice/chicken/veggies (no nightshades/etc) - Here's a link to a supplement I like:

Open Original Shared Link

If you eat allergen free for 'a while' - until you feel better, it will clear out your system.

Then, you can re-introduce foods one at a time - you'll need to wait at least 3 days with each food, to check for delayed reactions - you can Google how to do this -

LINKS:

Open Original Shared Link

Open Original Shared Link

Hope this helped -

Good luck on your journey back to health - Gina

[queenofhearts]

Welcome, & welcome back to the gluten-free life! So many of us have been through the feelings you're having, wondering if your ill health is just your lot in life, enduring the skepticism & even ridicule of those who don't understand what we're going through, & DEFINITELY enduring the frustration of doctors who are operating on outdated & ineffective diagnosis & treatment modalities...

IF YOU FEEL BETTER gluten-free IT IS NOT YOUR IMAGINATION!!! Stick with the diet & watch your health bloom & let the skeptics be skeptical to their hearts' content-- your health is your own. You don't need anyone's permission to be well.

For lots of helpful info, Nini's Newbie Kit:

Open Original Shared Link

For some truly inspirational stories of healing:

Open Original Shared Link

If you need info or moral support, this is a great place to come. I don't know how I would have managed without this board.

Leah

[gfp]

Welcome, & welcome back to the gluten-free life! So many of us have been through the feelings you're having, wondering if your ill health is just your lot in life, enduring the skepticism & even ridicule of those who don't understand what we're going through, & DEFINITELY enduring the frustration of doctors who are operating on outdated & ineffective diagnosis & treatment modalities...

IF YOU FEEL BETTER gluten-free IT IS NOT YOUR IMAGINATION!!! Stick with the diet & watch your health bloom & let the skeptics be skeptical to their hearts' content-- your health is your own. You don't need anyone's permission to be well.

And the better you get the less you will be bothered by sceptical Dr.s or family.

You can go gluten-free or you can do as FaithInScienceToo suggests as well.

Personally I prefer doing an elimination diet because the results are so much faster and you give yourself time to heal .... but many people do the reverse (I did) and slowly cut things out....

course then the real healing doesn't start until you cut out the irritants and of course most of us find that things like soy and dairy can be tolerated AFTER we heal. (some don't) but either way... the elimination diet goes for a straight kill.... and many of us end up doing this after 6 months of trying the other way anyway....

My advice, gain 6 months of your life and do the elimination diet and 100% gluten-free (no risk of CC or hidden gluten) .. right from the begining (everyone will think you are nuts who thought the gluten-free diet was nuts.... but they are not the one who is paralysingly ill and depressed - forget them for now and they will either come around or not as they see your health improve)

I wish I had started off like this! I really do... I might not be divorced (though that's not a bad thing as it turned out) ... I might not have alienated so many people... and I might not have done lots of things....

Too late for me.... I wasted 6 months of my life feeling miserable....

[Aerin328]

Stef, as others have said, we've all been there. Just want to reiterate though:

1. You are not a crazy hypochondriac! There are MILLIONS out there like you. Millions... and just a small fraction of us are here on this site, always here to help. Feeling like you're not alone is a big step to feeling better about your situation (I know, as I am still a newbie myself). So know that you're not alone!

2. Things WILL get better going gluten-free! It may take months or even years (as I very sternly keep reminding myself as I am just 7 weeks into this and still have terrible days) but at least you know what you can do to help yourself. So make up your mind, and focus on the brighter future ahead.

Also, if you need testing to confirm it to you, I highly recommend www.enterolab.com. It's $369 to finally nail this down for you. They even do a DNA test.

Lastly, I have also suffered tragically from fatigue, brain fog, and malaise as my primary dehabilitating symptoms. Even after being gluten-free for only 7 weeks I have noticed very real improvement on many days. I really look forward to what 6 months or 1 year of being gluten-free will do. Stick to it, and the recovery time will soon be past and all this will be a terrible memory and a great story, overshadowed by new health.

[rutland]

Stef, as others have said, we've all been there. Just want to reiterate though:

1. You are not a crazy hypochondriac! There are MILLIONS out there like you. Millions... and just a small fraction of us are here on this site, always here to help. Feeling like you're not alone is a big step to feeling better about your situation (I know, as I am still a newbie myself). So know that you're not alone!

2. Things WILL get better going gluten-free! It may take months or even years (as I very sternly keep reminding myself as I am just 7 weeks into this and still have terrible days) but at least you know what you can do to help yourself. So make up your mind, and focus on the brighter future ahead.

Also, if you need testing to confirm it to you, I highly recommend www.enterolab.com. It's $369 to finally nail this down for you. They even do a DNA test.

Lastly, I have also suffered tragically from fatigue, brain fog, and malaise as my primary dehabilitating symptoms. Even after being gluten-free for only 7 weeks I have noticed very real improvement on many days. I really look forward to what 6 months or 1 year of being gluten-free will do. Stick to it, and the recovery time will soon be past and all this will be a terrible memory and a great story, overshadowed by new health.

[/quote

I am so grateful to have this support. I see that enterolab is used by a lot of people on this site. Problem is because I quit my job I have to rely on my family to pay for it and because enterolab is an alternative to the medical tests, they just dont believe in its accuracy. I do, but I think Im going to have to go with my gut

and do an elimination diet and strict gluten-free. Its been a month and I see the results! This really should be proof enough. I would like a formal diagnoses from a doctor but I know now that because Ive been gluten-free for a month and dont plan on going back, a positive diagnoses is unlikely. Ive read people on this site talking about how doctors have them ingest gluten in order for the tests to show accuracy. But that is crazy and downright abusive. Its a tough road to recovery and who wants to retard the healing process! Not me.