Jump to content

  • 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

Do Symptoms Get Worse Before They Get Better On A Gluten Free Diet?

Eva H

By Eva H
in Coping with Celiac Disease

Recommended Posts

Eva H Newbie
Eva H
Posted

Hi there,

I'm not sure if I'm in the right place to ask this but I've been on a gluten-free diet for just a little over a week and in the beginning I seemed to get a little better and now my symptoms are getting worse again. I'm just wondering if I'm detoxifying from being gluten free ( I know I've been completely gluten free!) So basically, do you get worse before you get better? I will also be doing a test for a dairy allergy and am not sure if this is a contributing factor or not. Any answers or insights would be greatly appreciated!

Eva :)

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

Celiac.com Sponsor (A8-M):


Ursa Major Collaborator
Ursa Major
Posted

Hi Eva, and welcome to this board.

Yes, often people suffer from withdrawal symptoms at the beginning. Plus, people with celiac disease cannot usually digest dairy for at least the first six months, because the tips of the villi are supposed to produce the enzyme lactase, which is essential for digesting dairy. If those tips are damaged or eroded, than you will at the very least have a lactose intolerance.

Many people with celiac disease are also intolerant to casein, and cannot ever have dairy again. The best way for you to find out which is the case for you is, to try dairy again in six months to see if you react to it or not.

For now, eliminate dairy to see if you feel better without it. Many people who are intolerant to gluten won't really start getting better until they cut out dairy as well.

You may have a dairy intolerance, which will not show up on allergy testing. True allergies will cause a systemic reaction soon after ingestion, like wheezing, instant rash, tingling on the tongue and your throat etc. So, unless you find you get that kind of symptoms from dairy, the allergy test will likely be negative.

mftnchn Explorer
mftnchn
Posted

Hi, Eva. Welcome!

I'm rather new to this whole thing too, just over 2 weeks gluten-free and milk-free. But I have had the same thing, feeling worse at times than usual. Especially more fatigue, bloating, "flu-like." I expected the withdrawal symptoms, having gone through this with food allergies before. But, the way the symptoms come and go surprised me.

People on this board have been encouraging me to just hang in there, that it takes a long time.

The support we get here on this board is tremendous, it's really been a lifeline for me.

sfm Apprentice
sfm
Posted
Hi there,

I'm not sure if I'm in the right place to ask this but I've been on a gluten-free diet for just a little over a week and in the beginning I seemed to get a little better and now my symptoms are getting worse again. I'm just wondering if I'm detoxifying from being gluten free ( I know I've been completely gluten free!) So basically, do you get worse before you get better? I will also be doing a test for a dairy allergy and am not sure if this is a contributing factor or not. Any answers or insights would be greatly appreciated!

Eva :)

I had similar difficulties - but it was because I hadn't realized how careful I needed to be about food being contaminated with gluten. Also, your system can be sensitive, in general, and to other foods as well.

hathor Contributor
hathor
Posted

My experience is that it definitely takes more than a week. I've seen any number of posts now where people report the same thing.

My symptoms went back and forth for the first few weeks. Then things calmed down ... until I gave up soy and went through the same thing.

I still have symptoms after four months. I don't know if I've reacting to other foods, cross contamination, or my system just needs more time to heal. But I think I am making progress, slowly but surely.

I take it you have been extra careful about possible CC -- no gluten-contaminated wooden spoons or cutting boards, no envelope licking, no bits of gluten in old colanders, toasters, etc., no crumbs in spreadable items, etc. I've found I have to be extra careful now with items where it says "may contain traces" or made with shared equipment.

mftnchn Explorer
mftnchn
Posted

I'm trying to be very consciousness about cross contamination; however, I can see that there are a number of possible sources of small amounts of gluten. In China (where I am located) labeling may not be complete and even then I don't know if it is made in a gluten free environment. I maybe will try just pure whole foods for awhile, see if that helps.

loco-ladi Contributor
loco-ladi
Posted

I cant say for sure I feel or felt worse (its only been a couple months since totall gluten freeness) I did however start cutting it out of my diet well before as I suspected it was the problem, I just didnt have the knowledge I have gained in the past couple months to see it hidden in other things...

I can pretty much say for the last 2 months I have been 99.9% gluten free (had 1 accidental glutening took me a week to recover from) I can't say I feel totally better however as problems disappear or reduce the remaining ones are screaming louder, or I hope they are as if I felt this bad before I was in very sad shape! Overall I would say I feel better but worse in some areas, does the muscle/back/joint pain go with this or is that just from those oh-not-so-comfortable-seats-in-the-locos?

Did I mention I just spent the last 3 hours on my feet in my kitchen cooking up meals for me to eat "at work" for the next um.... 2 weeks :blink: I love my freezer and its once again full of yummy gluten free meals for work :rolleyes:

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      0

      Gluten-Free Lemon Poppy Seed Shortbread

    2. cristiana
      - cristiana replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

      Hi @KathyR37 and a very warm welcome here. I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana
    3. trents
      - trents replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    4. Theresa2407
      - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

      thank you for your advice. I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated. I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    5. KathyR37
      - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and gloves when cooking for them. One huge problem...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,817
    • Most Online (within 30 mins)
      7,748
    sleuth
    Newest Member
    sleuth
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • cristiana
      New here

      By cristiana · Posted

      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
    • trents
      New here

      By trents · Posted

      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    • Theresa2407
      Probiotics

      By Theresa2407 · Posted

      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      New here

      By KathyR37 · Posted

      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      New here

      By Scott Adams · Posted

      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.