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

Gluten Free And Getting Worse?


utahlaura

Recommended Posts

utahlaura Apprentice

I was just diagnosed a month ago and have been gluten free of course, but there were still tons of other things I reacted to cause I still needed to heal, I guess. Trouble is, even though I've been gluten free for a month now, a lot of the things I could tolerate a month ago I react to now.....dairy, olive oil, rice, fruit...stuff I could eat before. Now I'm just on a steamed veggie diet and only small amounts at a time. I'm wasting away and just don't understand why this is happening. Aren't I supposed to be getting better??? What's up?


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



Celiac.com Sponsor (A8-M):



mymagicalchild Apprentice
I was just diagnosed a month ago and have been gluten free of course, but there were still tons of other things I reacted to cause I still needed to heal, I guess. Trouble is, even though I've been gluten free for a month now, a lot of the things I could tolerate a month ago I react to now.....dairy, olive oil, rice, fruit...stuff I could eat before. Now I'm just on a steamed veggie diet and only small amounts at a time. I'm wasting away and just don't understand why this is happening. Aren't I supposed to be getting better??? What's up?

Hi, Laura...What a pretty name! You are probably hearing as we speak from one of the experts who monitor this blog. And you should breathe a deep sigh of relief that you found your way here. It shows just how powerful you are.

I had a major event in May of 2007. What I mean by that is: terrible illness, awful symptoms, emergency room at the hospital, no help at all from doctors. I was, however, overweight. It sounds as if you are not.

I immediately went on a 10 day cleansing fast. I went on the lemonade fast and would do it again. But that's only the beginning.

The real problem with Celiac and gluten-intolerance is the months and years that go by where we ignore our symptoms or deny them or treat the "loud" symptoms without recognizing the pattern. In those months and years, the intestinal damage is accelerating. So, Laura, we all have a lot of backtracking to do.

The very first thing I would do, if you are not overweight and cannot fast, is get on coconut oil. 3 tablespoons a day. You'll feel pretty yucky if you really need it because you'll be having candida die-off. Drink lots and lots of liquids and take tinture of milk thistle or its equivalent in water several times a day to detoxify your liver. Maybe you should start the coconut oil with 1 tablespoon a day to see how yucky you feel. Increase the amount to 3 as you can tolerate it.

You need to be on a fiber supplement to move all the toxins out of your system. The one I prefer is Brenda Watson organic fiber bar (available at Whole Foods, otherwise call your nutrition market) because it has half your daily fiber need (14 grams) in one gluten-free bar. You can get the sonne's bentonite clay and drink 3 tablespoons in water every morning. It captures toxins and removes them through your digestive tract, being pushed through by the fiber.

Be patient, Laura. Be persistent. It will take both to heal yourself.

PS: Have you ever seen the movie "Laura"? It's old, but it's really good. The song is haunting. Watching it is like being transported back to another, really lovely era.

mftnchn Explorer

Laura,

Sometimes this does happen, I noticed something similar. The body makes huge shifts to adjust once we get off gluten. People report increased sensitivities and allergies for months after going gluten-free, and sometimes it gets better and sometimes it doesn't.

Even your veggies may be too much roughage for you right now. What symptoms are you having?

My allergies went a bit crazy too.

It may just be a "hang in there and wait it out" kind of thing. Some people have to puree their food initially.

I'd like to suggest that you look over the information on specific carbohydrate diet. This might help you initially even if you only follow it for a couple of months. You could at least try the intro diet and see if it works better for you. The basic science is that the intestinal damage from the celiac means that we not only don't produce lactase to breakdown lactose in dairy but also don't produce several other enzymes that help us break down carbohydrates. So you eat only carbs that don't have to be broken down. Also only eat things easiest to digest and gradually add other things in slowly.

There are other approaches people here have tried and have worked--mostly their own trial and error. SCD is a structured approach so might be a little easier. Hopefully you'll get many other replies here.

The last thought I have is that there can be something coexisting along with celiac that is upsetting your immune system. I'd go longer with the gluten-free though because it really does take time. It takes adults 1-2 years for the intestine to heal. The allergies are a reflection of the leaky gut caused by the intestinal damage.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

    2. - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

    3. - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

    4. - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

    5. - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,369
    • Most Online (within 30 mins)
      7,748

    Nick H.
    Newest Member
    Nick H.
    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

    • Scott Adams
      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...