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

Three months in: Does it get better?


glutenkid

Recommended Posts

glutenkid Rookie

I've been gluten-free for three months now following years of brain fog and some GI issues, but I can't tell if I'm getting better or not. Over the course of these past few months I've cut out everything but whole foods, along with dairy, fructose, corn and soy. I'm more or less on a low-FODMAP diet. I've definitely had some good days, but I used to have good days before going gluten-free, too. The UChicago celiac site says villi regeneration can take 6-18 months, but that symptoms should start getting better within weeks. Should I give up on celiac as a possibility? I want to try eating it again and seeing what happens (last time I had a full-on gluten meal I got unbelievable stomach pain and urgent D, followed by a week and a half of general misery) but I can't risk being out of commission as finals start gearing up. What's striking to me is that when I do start to feel better I inevitably go back to feeling worse, even though I'm incredibly fastidious about avoiding gluten. Is this normal? Do symptoms come and go independent of how much gluten has been consumed? I honestly wouldn't mind waiting a few more months if I knew for sure I was going to get better, but making all these sacrifices (such as not being able to eat out with family on my birthday) and not knowing that anything will come of it is wearing me down. 


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



Celiac.com Sponsor (A8-M):



tessa25 Rising Star

If you choose to go back on gluten then schedule an appointment with your gastroenterologist and get properly tested for celiac. That way you have a chance of finding out for sure what's going on. Make sure you get the full celiac panel TTG IGA and IGG, DGP IGA and IGG, EMA, IGA. If any one of those tests is positive then you need to do the endoscopy. if it turns out that you do have celiac then you could periodically get your blood tested to see if your diet is working out.

 

 

cyclinglady Grand Master
 

What is a gluten challenge?

A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.
  • Prior to blood testing we recommend 12 weeks of eating gluten.
  • Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten.
In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013

 Source:

Open Original Shared Link

To answer your questions, celiac disease symptoms can wax and wane.  They can change.  Recovery can be weeks, months or years depending on the issues as celiac disease is systemic.   I would remain gluten free until after school is out before considering a challenge.   

ravenwoodglass Mentor

You may want to start your gluten challenge after your finals are over so you can get tested over the summer. If you need to be gluten free the challenge may not be a pleasent experience but diagnosis is rather important not just for you but for family members and any future children you may have.  Do be sure to read the Newbie 101 thread during the meantime. Gluten can be sneaky as far as CC goes. I never would have thought a gluten eating/drinking significant other could make me sick from just a kiss as one example.

 

Jmg Mentor
On 4/17/2017 at 0:21 AM, glutenkid said:

I can't tell if I'm getting better or not

Keep a food journal, it's the best way of tracking down what is affecting you. ESPECIALLY if you suffer from brain fog as its really easy to lose track or to forget how you were feeling a few days ago. Just short entries, what you eat, what time and how you feel. 

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,549
    • Most Online (within 30 mins)
      7,748

    Blough
    Newest Member
    Blough
    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
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.