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

Gluten Free Diet Stops Working After A While?

Leeis2k

Recommended Posts

Leeis2k Newbie
Leeis2k
Posted

Hi, new to the forum and Celiac disease. I was never officially diagnosed with Celiac disease but i have all the symptoms, so i went on a gluten free diet and it was amazing how much better i felt but then slowly i started to revert back.

After 2 months or so after the diet stopped working started to eat normal foods again and i had a HUGE burst of energy and still felt a little off but much better then i had been feeling. Now im right back were i was before the diet. (horrible Brain fog,tired all the time,etc)

Is it normal to keep changing diets back and forth? Or was i missing something important while i was on the gluten free diet?

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

There could have been something you were missing on the diet. It is more than just food, it is how it is prepared, what the foods are that you are eating, are they produced in the same plant as gluten foods, are they actually gluten free or 'gluten free by ingredients', eliminating gluten in the stuff you cook with, for example we can't share toasters, colanders and wooden utensils need to be replaced, drugs and supplements need to be checked etc. The diet isn't easy and it is easy for gluten to slip in from places you would not expect.

Since you are back on gluten stay on it for a couple of months then get to the doctor and get a celiac screening done. Then when all testing is over get back on the diet, strictly, and also eliminate dairy at first.

T.H. Community Regular
T.H.
Posted

Yeah, I'd say you were missing something, because I don't believe I've ever heard of the diet not working suddenly. Two things that might apply?

1. Many people who go off of gluten get more sensitized to it, so foods with no gluten but with gluten contamination might not bother you at first, but could start to bother you the longer you stay away from gluten.

2. You might have other food issues. I have had food allergies for quite a while that I never had a clue about. I only started having trouble with them AFTER I went gluten free (brain fog, exhaustion, dizziness, and aches and pains were my reactions to these foods I was allergic to). I had to cut lots of food from my diet and start a food journal recording my foods and my reactions for me to hunt down some of them, and an allergy test got some more.

Maybe one of those? Or...hmmm...parasites? Some parasites affect your digestion and are affected by what you eat in better and worse ways. I wonder if a parasite might adjust to changes in diet after a certain time period, which could explain why you started feeling bad again? I honestly have no idea, it just popped to mind as a 'way out in left field' possibility, ya know? :)

Hi, new to the forum and Celiac disease. I was never officially diagnosed with Celiac disease but i have all the symptoms, so i went on a gluten free diet and it was amazing how much better i felt but then slowly i started to revert back.

After 2 months or so after the diet stopped working started to eat normal foods again and i had a HUGE burst of energy and still felt a little off but much better then i had been feeling. Now im right back were i was before the diet. (horrible Brain fog,tired all the time,etc)

Is it normal to keep changing diets back and forth? Or was i missing something important while i was on the gluten free diet?

Skylark Collaborator
Skylark
Posted

You really need to work with a doctor and get celiac tests and a full medical workup for the chronic fatigue and GI trouble. Celiac is not the only thing that can cause bowel issues and there are some things like Crohn's that need to be ruled out.

Leeis2k Newbie
Leeis2k
Posted
  • Author

Well i was strictly on the gluten-free diet. I even got off all the allergy causing foods. I also made sure not use ANYTHING that could have been contaminated by gluten. It really seems like for some reason when i start the diet i feel great for a week or so then by body misses something that the gluten free diet isn't giving me. It feels like a vitamin deficiency that i somewhat get back eating normal foods but slowly lose on a gluten-free diet.

As far as getting checked out i have no insurance and all the moron doctors keep saying "you look healthy so it can only be depression" without running any tests i ask for. Without them getting paid they really could care less.

Leeis2k Newbie
Leeis2k
Posted
  • Author

You really need to work with a doctor and get celiac tests and a full medical workup for the chronic fatigue and GI trouble. Celiac is not the only thing that can cause bowel issues and there are some things like Crohn's that need to be ruled out.

I was thinking Chohn's too because my mother has it. The only problem is i have NO pain at all. That seems to be the main symptom of Chohn's.

Wolicki Enthusiast
Wolicki
Posted

You need to stick with the diet strictly. You are very likely experiencing gluten withdrawal. It can be pretty severe. You have to just ride through it- the fatigue, brain fog, etc. It does go away! Good luck.

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

If you are a celiac and have been having malabsorption problems, it is highly likely that you are deficient in many vitamins and minerals, and that your pancreas is not putting out enough digestive enzymes to digest your food properly. As others have said, you may also have other intolerances that only appear after the gluten is gone because the gluten tends to mask the other problems.

Do go to your doctor and have your vitamins and minerals checked and get on a gluten-eating program (2-3 months) to allow for the antibodies to build up in your body and render a positive test result (blood and biopsy). While you are going through this gluten-eating fest you might try taking some digestive enzymes to supplement what your pancreas is failing to do so that you do not suffer unduly.

Good luck with whatever route you decide to take. Doctors are notoriously ill-informed about celiac and many still believe it is a very rare disease :blink:

Archived

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

Go to topic listing
  • 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
      Taken Seriously

      By Scott Adams · Posted

      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
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      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
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      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
      Protein or fat?

      By Scott Adams · Posted

      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
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      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.