Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Been 6 Weeks Gluten Free And Still Feel Awful...

i-miss-cookie-dough

Recommended Posts

i-miss-cookie-dough Contributor
i-miss-cookie-dough
Posted

heya's!

so, i have been off the big G for 6 weeks now.

after 4 or 5 years of being fatigued and nauseas,

i was diagnosed with celiac.

always thought my symptoms were from

my antidepressant - and i have tried the gamut -

and couldn't find a ONE that didn't make me

tired and nauseas.

though NOW

it seems like the fatigue and nausea

could be from the celiac!

hooray!

was so excited when i found out

as i had been thinkin i would

feel like crap for the rest of my

life...

so its been 6 weeks.

and i have kicked gluten to the curb.

and really only eat things that i KNOW are gluten free.

and i still feel like crap.

tired

nauseas

and in the late afternoon,

my face gets really hot and flushed.

where is my relief?

where is the "i stopped eating gluten and 2 days later felt like a new person"??

still feel like the

old blegh person.

blah.

hmmm...ok...THANKS for listening!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


kbtoyssni Contributor
kbtoyssni
Posted

Have you tried eliminating dairy? Many celiacs are temporarily intolerant until they heal.

Have you checked all your personal care products, pet food, gotten rid of wooden spoons?

What is your living situation? Just trying to figure out if there are ways you could be getting contaminated.

i-miss-cookie-dough Contributor
i-miss-cookie-dough
Posted
  • Author
Have you tried eliminating dairy? Many celiacs are temporarily intolerant until they heal.

Have you checked all your personal care products, pet food, gotten rid of wooden spoons?

What is your living situation? Just trying to figure out if there are ways you could be getting contaminated.

thanks so much for your reply!

i have not eliminated dairy.

i actually eat yogurt for breakfast

every day and milk

with my gluten free cereal

as my bedtime snack : )

been working with a dietician

and she said not to go off dairy?

hmm...

but maybe i should try.

haven't gotten rid of wooden spoons -

which i use a lot for

regular baking

as well as gluten free baking

and cooking.

and side from makeup,

haven't checked my other products.

hmmm...i dont eat pet food.

: )

i mean - i dont have pets.

think its really possible that

old flour on a wooden spoon

or yogurt could keep

my symptoms goin?

thanks again...

Offthegrid Explorer
Offthegrid
Posted

When I eat dairy, my symptoms were very much like when I ate gluten. For a long time, I simply assumed I was getting glutened somewhere.

Try eliminating ALL dairy. Quite a few people on this board did that and then were able to reintroduce dairy after 6 months. I've only eliminated casein (the protein in dairy -- not talking about lactose here) a few months ago but then also had to eliminate soy.

Guest j_mommy
Guest j_mommy
Posted

YEs....you need to replace wooden cooking utensils, any pots and pans that are scratched, old sponges for cleaning, toasters, I'd give your microwave a good cleaning as well as your stove. These things can all have "old" gluten in/on them

I would definetly check you chapstick/lipstick ect. Toothpaste is another biggie.

kbtoyssni Contributor
kbtoyssni
Posted

The problem with dairy is that the lactose is digested by the tips of your villi. If you villi are damaged from celiac, it will be hard for you body to digest it until you heal. Maybe taking lactaid at the same time would help?

I think it's nearly impossible to properly clean wooden spoons. I don't care if there's a little rice residue stuck in them, but if they've been used for gluten products in the past, I'd be very nervous about continuing to use them. I'd also consider replacing badly scratched pots and pans, getting rid of scratched tupperware, replacing your collindar/strainer, definitely get a new toaster, scrub the cupboards. The other day I was going through my mum's cookie cutters and found wheat flour residue at the bottom of the container - we've been gluten-free for over two years!

i-miss-cookie-dough Contributor
i-miss-cookie-dough
Posted
  • Author

this is all so helpful.

i will get rid of the spoons tonight!

and SO INTERESTING

that your lactose

symptoms were just like

the gluten ones!

i have been having dairy a

few times a day,

so maybe NOT dairy is the key

to starting to feel better!

SO!

another quick question about the lactose --

do i look for things that say

lactose free?

or

caisin free

or

dairy free?

do they have to be free of all 3 things?

all very confusing...

and would that mean i just

get soy yogurt and soy milk?

b/c i saw one soy yogurt

today that says

"our active cultures contain milk"??

huh?

:huh:

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mftnchn Explorer
mftnchn
Posted

I'd just go totally dairy free. If it works and you feel much better, you could try to figure out if you are just lactose intolerant.

imhungry Rookie
imhungry
Posted

Wow! Did not know about the wooden spoons. I sure like them... but I could get new ones.

If you are going to elimiante the dairy you look for all three, and things might say dairy free like soy products that still have casein in it. For example soy cheese... which makes me awful mad. Anyhow, look for all three, get to feeling better and then experiment. That's my suggestion.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,356
    • Most Online (within 30 mins)
      7,748
    Deb powell
    Newest Member
    Deb powell
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.1k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      How to navigate living with dermatitis herpetiformis

      By knitty kitty · Posted

      Welcome, @Morgan Tiernan, The best thing to clear my dermatitis herpetiformis is to take Niacin, Vitamin B 3, the form called nicotine acid, the kind that causes flushing of the skin.  Flushing Niacin clears my skin quickly.   Yes, the flushing might seem really strange, but it opens the tiny capillaries in the surface of the skin which helps remove the antibodies that gather in those pustules.  The flushing lessens the longer Niacin is taken, but still works at keeping the blisters away.   Be sure to take a B Complex and Benfotiamine, a form of Thiamin , Vitamin B 1.  Covid, shingles and other infections like strep throat deplete our Thiamine quickly.  Having frequent infections can indicate low Thiamine.  We have a higher metabolic demand during infections, physical trauma or surgery, emotional and mental stress, and while physically active like dancing.    Thiamine has anti-virus and antibacterial properties.  The eight essential B vitamins work together.  Taking Benfotiamine in addition to the B Complex is safe and nontoxic.  Excess B vitamins are easily excreted because they are water soluble.  New Celiacs are often low in vitamins and minerals due to malabsorption.  Vitamin D can help calm the immune system.  Following a low histamine Paleo diet , like the Autoimmune Protocol Diet by Dr. Sara Ballantyne, a Celiac herself, is also very helpful.  Steroids lower histamine, but the low histamine AIP diet is safer.   This research may be old, but Flushing Niacin does work!!! Nicotinic acid therapy of dermatitis herpetiformis https://pubmed.ncbi.nlm.nih.gov/15412276/ P.S. Wearing natural fibers helps my dermatitis herpetiformis.  Synthetic fibers keep sweat next to the skin, causing further irritation.  Natural fibers wick moisture away, keeping skin dry and exfoliated.
    • Morgan Tiernan
      How to navigate living with dermatitis herpetiformis

      By Morgan Tiernan · Posted

      Hey @Rogol72! thanks for your very helpful response. Those videos are great and super educating! I’ve forwarded them to my family members too as often it can be very difficult to explain to those around you just what you’re going through. Though, I’m fortunate that they’re super supportive and keen to help me get to the bottom of the problem. Interesting how you mentioned soaps and shower gels irritating too! Is it better to rinse off the sweat straight after exercising just with some cool water? Additionally, is minimising soap in those areas during showering helpful too? Or is there a particular soap that may be helpful! I have some more questions about dapsone too, if you don’t mind me asking. As mentioned in my response to Trents, I take prednisolone for when I am glutened or when my symptoms become too unbearable. With oral steroids it’s usually a 4 week dose as I have to reduce my dose to slowly come off them. How long can you take dapsone for? Can it impact your immune system in the same way as oral steroids (I have to be super careful I don’t pick up any infections whilst on my steroids as my immune system is compromised.) Yes, I’m from South Wales in the UK. Though my grandfather is Irish, explaining my surname (very well spotted!)
    • Morgan Tiernan
      How to navigate living with dermatitis herpetiformis

      By Morgan Tiernan · Posted

      Hi Trents, thank you so much for your help and support. Yes it’s not ideal from my surgery practice. This is just one of the many problems I have experienced with them, we’ve had to pay to go to a private consultant now instead (I’m from South Wales in the UK, spot on about the spelling of “coeliac”! I completely forgot there was another way of spelling it around the world!) The dermatologist I have been seeing over the last few months has been amazing. And thank goodness for places like google and forums like these, I don’t think I would’ve ever thought it could be gluten! Interesting about the iodine. I’ll definitely start to limit this out of my diet. It makes sense as the places of irritation are places I sweat or pressure points (wrists, waist etc.) Dapsone was mentioned in my last appointment also. He’s reluctant to put me on it just yet, probably just until this biopsy is done so we can confirm for definite. At the moment I’m being put on prednisolone (oral steroids) every time I either become glutened or my symptoms reach an ultimate. I think he’s said if I need to be in them for any more than 3 times a year, dapsone will be more considered. I’m keen to go on it as every time I come off the prednisolone I can see the blisters creeping back. I’ve got loads that have burst on my hairline. I also start to get flaky/peeling skin as well which I’m not sure is related?    As well as limiting iodine, is there anything else that might help irritation with sweat? Is it better to wear more loose fitted clothing? Can I apply something to stop the irritation of sweat whilst i’m exercising?    Thanks for all your help so far! I will keep you all updated on my journey! 
    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      Thank you - that makes perfect sense and I understand. celiac disease is an autoimmune disease which will cause further damage while gluten sensitivity is different. Based on my symptoms and bloodwork, I am almost certain I have celiac disease.  I kind of hate to hope for a positive biopsy but a negative one would be frustrating for sure. Regardless, I have done a lot of research on gluten-free diet and am prepared to begin a new lifestyle journey - with a lot of questions along the way.  I appreciate your information and advice! 
    • trents
      Waiting on biopsy results but wanted opinion on bloodwork

      By trents · Posted

      Let's talk about terminology for the sake eliminating (as much as possible) confusion. Unfortunately, the terms "gluten sensitive" and "gluten intolerant" have, historically, been used indiscriminately. There are two primary categories of gluten disorders whose "official" terms are 1. celiac disease and 2. Non Celiac Gluten Sensitivity or NCGS for short.  I believe there is an evolution toward using the term "gluten intolerance" to refer to celiac disease and "gluten sensitive" to refer to NCGS. I say that because the words "gluten sensitivity" are actually found in the official medical term for the non celiac medical disorder involving gluten. Does that make sense? The difference between celiac disease and NCGS is that celiac disease causes inflammation in the small bowel lining and (over time) does damage to it so that it becomes inefficient in absorbing nutrients from what we eat. This is the area of the intestinal track where all of our nutrients are absorbed. Of course, this can lead to any number of other medical problems. NCGS, on the other hand, does not cause inflammation or damage to the lining of the small bowel and therefore does not produce the antibodies that celiac disease antibody tests look for. Neither will NCGS, therefore, produce a positive biopsy result. NCGS and celiac disease, however share many of the same symptoms in the area of GI distress and NCGS is 10x more common than celiac disease. There is, at the present time, no defining test for NCGS so an NCGS diagnosis is arrived at by first eliminating celiac disease for which we do have tests for. Having said that, some experts believe that NCGS can be a precursor to celiac disease.  Yes, you are correct in stating that both conditions require a gluten free diet.  So, in the absence of official testing for celiac disease (and official testing done under the proper conditions) a person who is experiencing distress when consuming gluten cannot be certain whether they are dealing with celiac disease or NCGS. Not to have an official diagnosis of celiac disease while actually having the condition makes it difficult for some folks to stay on the gluten free bandwagon. It's just the psychology of the situation and wanting to rationalize away a very inconvenient and socially isolating medical condition.
×
×
  • Create New...