Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

kasia

Gluten Free......should I Be Feeling Better By Now?

Recommended Posts

Hi I'm Kate, I'm a 41 year old working mum from the UK,

I've not been diagnosed yet but should get results in my biopsy on Tuesday. I've read this board avidly for the last week (haven't got the energy to do anything else!) & decided to go gluten free. The board is great BTW - much better than my GP!

It's been 6 gluten free days now & for the first 3 days I thought it was a miracle - my symptoms (vomiting, nausea, no appetite, no energy, thirst) all went away & I felt like a new woman :D - Like when you drank way too much beer the night before & feel so bad, and then slowly you realise the hangover is going away!

However in the last 3 days I seem to be going downhill again, but with different symptoms - energy levels completely shot again, headaches, always hungry & very nauseous if I don't eat (I had to go & eat rice & bolognese at 3.00am the other night), really disturbed sleep at night, & now feeling really teary.

I have tried so hard to be gluten free, & also have cut out dairy as I had a reaction which was the same as my gluten one but not as severe after mash potato with oodles of butter & milk. I don't think I've had gluten as I have been able to eat which I cannot do after having had pasta/biscuits/pizza etc (normal gluten reaction vomiting, exhaustion, thirst & diarrhoea).

I'm so hoping I'll be diagnosed on Tuesday, & hoping it will get better. I feel like I have no life at the moment & I snap at my poor kids the whole time.

I am so sorry to be so down - thanks for letting me bend your ears.

Kate

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


hang in there, Kate! and welcome to the board! you are right, it is a valuable place to get information.

i'm sorry that you're feeling bad... i especially had trouble with the teariness (alternating with rage!) after going gluten-free. so i feel your pain! i would say that it's pretty early on in your gluten-freeness for symptoms to disappear (even the new ones) and your body is just in a process of adjustment. for now, here are a couple of suggestions to try if you haven't already: try to find a gluten free B12 vitamin (the ones that dissolve under your tongue are better), eat as often as you feel hungry (especially protein -- although everyone always says that and i don't feel any less hungry when i eat protein :P ), and come here to unload as often as you need to! you're not alone.

feel better soon, and good luck.

Laurel.


diagnosed 8/05 through positive bloodwork & biopsy

gluten-free since then!

"Those who are willing to be vulnerable move among mysteries." Theodore Roethke

Share this post


Link to post
Share on other sites
Hi I'm Kate, I'm a 41 year old working mum from the UK,

I've not been diagnosed yet but should get results in my biopsy on Tuesday. I've read this board avidly for the last week (haven't got the energy to do anything else!) & decided to go gluten free. The board is great BTW - much better than my GP!

It's been 6 gluten free days now & for the first 3 days I thought it was a miracle - my symptoms (vomiting, nausea, no appetite, no energy, thirst) all went away & I felt like a new woman :D - Like when you drank way too much beer the night before & feel so bad, and then slowly you realise the hangover is going away!

However in the last 3 days I seem to be going downhill again, but with different symptoms - energy levels completely shot again, headaches, always hungry & very nauseous if I don't eat (I had to go & eat rice & bolognese at 3.00am the other night), really disturbed sleep at night, & now feeling really teary.

I have tried so hard to be gluten free, & also have cut out dairy as I had a reaction which was the same as my gluten one but not as severe after mash potato with oodles of butter & milk. I don't think I've had gluten as I have been able to eat which I cannot do after having had pasta/biscuits/pizza etc (normal gluten reaction vomiting, exhaustion, thirst & diarrhoea).

I'm so hoping I'll be diagnosed on Tuesday, & hoping it will get better. I feel like I have no life at the moment & I snap at my poor kids the whole time.

I am so sorry to be so down - thanks for letting me bend your ears.

Kate

HANG IN THERE!! Trust me, if you view any of my posts from four months ago when i started the diet you will see these were my same concerns, just like everyone else. I used to sometimes cry because i felt like my poor kids were being held hostage in the house with a crabby mom!!

On another note, everyone has a different amount of time before they start to see the diet working, and yes, the first few days you feel like a miracle has occured...then it starts to take time all over again. The reason is, it takes your body not only days, but weeks to flush out all the many years of gluten in your system. After four months i became about 75% better...so hang in there :D (oh, and now i am back to being a happy mom towards my kids again :D )


Gluten Free...negative blood results...absolutely positive diet results.

Dairy Free...absolutely positive diet results.

Egg Free...there goes another one...absolutely positive diet results.

Allergic to Codeine.

"Life is like a box of chocolates...you never know which ones may have gluten in them:)"

Share this post


Link to post
Share on other sites

Hi Kate,

Well by gluten-free that means everything including hair, makeup, hand cream etc. Think about how many years of gluten you have in your system. Some people feel better in some ways within the first week and some in a few months or a year or so. Each person is different therefore it depends on how fast your system dumps the gluten and how much you are ingesting through hidden means.


Rusla

Asthma-1969

wheat/ dairy allergies, lactose/casein intolerance-1980

Multiple food, environmental allergies

allergic to all antibiotics except sulpha

Rheumitoid arthritis,Migraine headaches,TMJ- 1975

fibromyalgia-1995

egg allergy-1997

msg allergy,gall bladder surgery-1972

Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease

gluten-free totally since Nov. 28, 2005

Hashimoto's Hypothyroidism- 2005

Pernicious Anemia 1999 (still anemic on and off.)

Osteoporosis Aug. 2006

Creative people need maids.

Share this post


Link to post
Share on other sites

Welcome! A lot of people have an initial few days of feeling great because they've greatly reduced the amount of gluten in their diet, but it's nealy impossible to have found all the sources of gluten in your life in a few days. I'd be willing to bet there's some gluten sneaking in somewhere. Here are some ideas of places gluten could be sneaking in:

-Have you scrubed your kitchen down?

-Have you replaced wooden spoons and scratched pans and your toaster?

-Have you replaced old condiments like mayo and butter that may be contaminated. ?

-Have you checked if your pet's food has gluten?

-Have you replaced lipsticks/chapsticks because they may be contaminated?

-Have you checked your personal care products for gluten?

-Have you checked that all your medications are gluten-free?

-Don't lick stamps or envelopes - the glue may contain gluten.

Even if you have gotten rid of all the gluten in your life, it's likely that your intestines are still healing and you wil have days where you just don't feel well until they heal all the way. You may find that other food intolerances start showing up the longer you're gluten-free (if so, you had them before, it's just gluten was making you so sick that you didn't notice).

It will take time, but hang in there. You'll get better soon!


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

Share this post


Link to post
Share on other sites

Kate, I had similar beginnings. My first week gluten-free was like some sort of beautiful dream. I had no idea how terrible I felt all the time because I didn't know it was possible to NOT feel so awful. Are there really people out there that feel 'good?!'

And then things started slowly starting back up. Apparently I have a dairy thing :o and there is SO much hidden gluten it's not even funny. Just the other day I got an email about gluten used in binding certain paper towels together...as if it's not already hard enough!

It's now been three months, and if there's anything I've learned, it's that this is a VERY long process. It takes your body a lot of time to adjust and to heal and all that stuff. And new intolerances present themselves just to make it even more confusing.

Either way, stick with it. I definately don't feel great all the time. But when I do accidentally gluten myself, the results are WAY too huge to be ignored.

good luck and welcome!

Courtney


Courtney - 25

Columbia, SC

Gluten-free since July 8, 2006

Casein-free since October 16, 2006

Went six weeks, and fell back into a deliciously painful world of cheese.

Casein-free (again and for serious this time) December 11, 2006

Stupid cheese addiction....2/07

Dx Hypothyroid in 1993

Dx Gluten & Casein Sensitive through Enterolab 10/06

Dx Adrenal *Exhaustion* 2/07

Originally from WI, I am still in denial over my newfound casein intolerance. I fear I will not be allowed back into the state if I can no longer eat cheese and drink milk. This could pose some trouble over holidays when I wish to visit my family. It also poses a problem involving the severe rage I feel when I have to throw away somebody's unfinished cheese sticks. That is so wrong.

Share this post


Link to post
Share on other sites

Kate, welcome on the forum! I had to reply because you sound EXACTLY like me when I first went gluten free. First I felt just wonderful for a few days, and then for a long time I was tired tired tired and always hungry.

I think what it is, is there's a autoimmune reaction going on, and when you first cut out gluten, your body is just happy that the irritant is gone... but the reaction actually takes much longer to die down, and since you're not eating gluten anymore, your body is getting stronger and can react even stronger, ironically enough. It'll get calmer again after a while.

The hunger is a sigh that finally, you can absorb nutrients from your food again, and so your body starts SHOUTING for all the nutrients it's been missing. I'd say, eat when you're hungry, but try to make everything you eat count! In other words, not too much gluten free cakes, but veg and fruit and meat and fish. :)

You can expect to get bloated from different foods for a while, too. Your insides need time to heal, and until then it can be a bit hard to digest different foods.

Whatever you do, I'd say don't let a negative test result convince you to go back on gluten, if it would turn out that way. The way you've reacted to the diet, I'm positive it would be best to stay on it. Of course I'm just someone on the internet, so take it for what it's worth. :)

Pauliina

Share this post


Link to post
Share on other sites

If you have done all the other things suggested plus are definitely taking a B12 everyday, I suggest eating thing like applesauce, boiling some chicken and add some cabbage & carrots to make a easy to digest soup, eat organic if you can, eat things that you know you tolerate well, baked sweet potatoes are good - just add a little brown sugar instead of butter

Also, I would definitely not be drinking anything with artificial sugar... and I would go so far as to say to cut out sodas, because I just do not think they are good for you...

take your lunch, try eating meat, veggies and fruits and nuts, with no starches, ie no potatoes, sometimes when one goes gluten-free one tends to try to replace the wheat carb with potatoes... Do this for a few days and then see if you can add in rice or a white potato, noticing how you feel. Stay attuned to your body & you will figure out what works for you.

mini meals are good, be sure to eat a protein with a fruit snack. also, you might track all the things that you eat each day to make sure that you are getting enough of the essential components, there are programs that will do that for you & Spark People on the internet have a free program that is very good for that - you can track a lot of things with it

wishing all the best

Share this post


Link to post
Share on other sites

Hello everyone,

Just wanted to say a heartfelt thanks for all your great replies & good wishes - if there was a flowers smilie I'd send you all a big bouquet! :D

It's good to know that you don't feel better straight away - I do feel better but some days only marginally. However I'd not considered that the pain killers I take (backache - probably from all the lying down) contain lactose & there seems to be some kind of wheat derivative in my birth control pills.....? What?

Add to the fact that my husband loves stoneground bread & leaves his crumbs everywhere. I just cut my lemon for my beetroot soup with the knife he'd been cutting bread with. Could this cause a reaction? I hadn't even thought of the toaster!

I reckon you're right about the B12 too - I have nasty mouth ulcers & ridges on my fingernails. Of course the doctors have lost my blood count so that still hasn't come back, but will hotfoot it & get some vitamins tomorrow.

I don't want to eat gluten again..... it actually scares me that'd I'd get a worse reaction still. I was moaning to my friend (who works for the good old British NHS) that I fancied a chinese duck pancake (full of gluten I think?),& he said 'Well go ahead & have one'. Granted he's not a doctor, but is he mad.....?

Thanks again

Kate

Share this post


Link to post
Share on other sites

Kate, welcome to the board!

You will have ups and downs as you heal. When your remove gluten and get some rest, at first you feel better, but you will always cycle to feeling bad again. Your body has a lot of healing to do! It will build up the energy it needs to heal, then it will use it and you will feel bad. Don't get distressed! Every time you get to a bad part in the cycle, be happy that you are that much closer to being totally healed. You probably didn't get sick all at once. Most felt good, then bad, then good again, until we felt bad more than good. Now it will reverse, until we feel good more than bad. Eventually we will forget that we ever felt bad, unless we eat gluten, of course!

Do like the others have said. Chances are good that you are not 100% gluten-free. It takes time to find and remove all the gluten.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

Share this post


Link to post
Share on other sites
Add to the fact that my husband loves stoneground bread & leaves his crumbs everywhere. I just cut my lemon for my beetroot soup with the knife he'd been cutting bread with. Could this cause a reaction? I hadn't even thought of the toaster!
That could absolutely cause a reaction! :blink::ph34r: (The knife I mean, unless you cleaned it well between). And the toaster is a major source of cross contamination! Toasters aren't that expensive, you should get yourself your own personal gluten free one. :)

There's a learning curve with starting this diet, you'll get there! :)

Pauliina

Share this post


Link to post
Share on other sites