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

When To Expect What


Em314

Recommended Posts

Em314 Explorer

Only about a week and a half in with going gluten-free. Still having some stomach upset; I feel like it's already a little bit better but I may be imagining it. GI symptoms (including/especially pain) have been one of my primary issues.

Anyway, my question is at what point should I switch from being patient to starting to suspect there's still gluten in my diet somewhere? I understand healing takes a long time but also don't want to ignore a problem if there is one.

Seems like some people have dramatic results almost instantly, but I'm not sure if that's the norm. Seems a little unrealistic for that to happen for me because there is definitely damage to my intestines (biopsy confirms this), which my doc thinks will take at least half a year to fully heal.


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



Celiac.com Sponsor (A8-M):



love2travel Mentor

My doctor told me it would take up to two YEARS for full healing. That was 1.5 years ago (time has flown!). After eating gluten I never did feel sick at all. I am not about to cheat now to see what happens, that is for certain. Many people, upon accidental glutening, feel worse than they did before. It seems with many that the longer one is gluten free the worse the reactions become. Each person heals at a different rate. Some do feel far better very quickly; some take ages so it varies widely. Hopefully you are not imagining feeling better! It is possible that you really are. Sure, healing can be slow, but many symptoms can improve quickly. Hope that is the case with you! :)

Em314 Explorer

Thanks love2travel. That's about what I thought, and I do think I am already noticing a little difference, anyway. I have not (knock wood) yet had really extreme pain since going gluten-free, and prior it was happening at least once a week. So even if that's the only major difference for awhile, that would still be a pretty big deal for me. :)

1desperateladysaved Proficient

I am 6 months gluten free. I felt immedietly better upon going gluten free. Then I began suffering incidents of cross contamination, mistakes and possibly withdrawl symptoms. I discovered other food intolerances and nutrient absorption problems. I haven't had just a picnic, but my highs seem higher. One doesn't always have a smooth course of a hill, but if you stay headed in the right direction, you should go up.

Get well, stay well, as soon as you can.*** If you it any snags, just ask.

Diana

nvsmom Community Regular

I found my reaction to lactose became more obvious after going gluten-free. It caused me the same sort of pain... could it be another food sensitivity like milk causing the problem?

Good luck! I hope you feel better soon.

DavinaRN Explorer

I'm eight weeks gluten free, except for accidents, the change I noticed immediately was I was no longer sicker after eating than before I ate. Looking back over the eight weeks, I see less body aches and headaches, more regular bowel patterns, a little more energy. Hoping that energy level continues to improve :)

GFreeMO Proficient

Em314 - I have been gluten free for about the same time as you and am feeling the same way. I think that it's just going to take us several months to feel better. I could have written any of the above responses myself.


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



Celiac.com Sponsor (A8-M):



shadowicewolf Proficient

1.5ish years later and i'm healthy as a horse when i don't catch a cold :)

Em314 Explorer

Thanks guys.

I think I'm noticing some little improvements here and there- energy, pain, bloating- but there's a ton of room for improvement. I strongly suspect stress and acidic food are keeping these "symptoms" more present than they'd be otherwise. (I can fix the acid issue/WIP; stress I do the best I can to minimize but have a bit less control over; I suspect it will be reduced when the holidays are over with.)

One thing I can't seem to easily find (and I have looked) is info on which of the celiac symptoms are caused by gluten (in which case, I'd expect an immediate improvement), vs. which are caused by having a damaged digestive system (in which case, I'd expect a more gradual improvement over time). I know everyone's body is different and even having that knowledge won't tell me how I'm going to feel on what timeline, but I would like to know what info is out there. I may start a thread about it if nobody replies in this one. EDIT: I went ahead and made a separate thread for this question.

  • 3 weeks later...
Em314 Explorer

One month later- energy overall better, head clearer, but stomach issues are... improving, but still there. I'm as sure as it's possible to be that it's not gluten... I think I'm in that fun phase where I find out what my stomach is sensitive to other than gluten. And I'm pretty sure some of it is that I did come back as having intenstinal damage, but I'm not sure how much. It's frustrating.

  • 2 months later...
Em314 Explorer

Frustrated again.  I had whole week straight pain-free in early feb.  A little pain popped up, then over a month almost entirely pain-free.  Thought I was in the clear.

 

This entire week:  Increasing pain, especially later in the day, worse as the week as progressed.  And bloating.  Also, headaches, which I've never been prone to.  Pain is in my stomach and creeping up my damn throat right now.

 

Not only are there no sources of potential gluten I can think of, there's also nothing NEW in my diet, to boot (I've tried thinking of anything and everything- nothing's changed this week, or immediately before it- I keep a food diary, I would know- only things that flux are timing and quantity).  I am eating the same stuff I was eating when I had that good long chunk of not-pain.

 

Other possible culprits:  Stress (which has indeed increased), increasing sensitivity to sweeteners as my insides heal up, earting too close to sleep.  Dehydration?  God, I don't know.  I am back in that frantic place of not knowing and desperately needing to.

 

I had ongoing issues with energy up and down; my guess continues to be low blood sugar, for that.  Has some slight issues with nausea, before this week- very mild, just someties would feel sort of queasy.

 

WHAT THE FRICK??????  I thought I was DONE with this.  =(

Archived

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

  • 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. - knitty kitty commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      3

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

    2. - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    3. - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    5. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748

    Jane02
    Newest Member
    Jane02
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
×
×
  • 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.