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

Help! gluten-free For 2 Years But Symptoms Are Back!

Lizzy23

Recommended Posts

Lizzy23 Newbie
Lizzy23
Posted

Hello,

I am 23 years old and have been gluten-free for the past 2 years. At first the diet seemed to be working, my symptoms were improving! According to the Enterolab tests I did 2 years ago I am indeed gluten sensitive. However, I have been having digestive problems yet again and now am not so sure that the gluten-free diet is working. My symptoms include constipation, gas, bloating, distention, and abdominal and lower back pain. I'm really confused and not sure what I should be doing but I know that even with my current gluten-free diet I am still in pain and having digestive issues that an active 23 year old probably shouldn't be having. Any thoughts or suggestions?

THANKS!

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

Celiac.com Sponsor (A8-M):


RiceGuy Collaborator
RiceGuy
Posted

My first thoughts are:

1) Are you taking any supplements? If so, what kinds, and are they gluten-free?

2) Have you recently changed anything in your diet? Switched brands for something?

3) Have you checked your skin/hair care products, makeup, laundry and dish detergents, etc?

4) Do you eat dairy, soy, nuts, eggs, or other common allergenic foods?

The first thing I thought of with regard to the symptoms you mentioned, is magnesium. I'd highly recommend trying it. Obviously, make sure it's gluten-free!

Welcome to the board!

gfpaperdoll Rookie
gfpaperdoll
Posted

Are you getting CC from somewhere? What is your working & living situation?

what are you eating? are you eating any Quaker Rice Cakes?

There are some other things that might look gluten-free on the label but really are not.

Are you eating anything that has "natural flavor" on the label? A lot of food companies have cleaned up their labels & lump all the MSG & stuff under natural flavor.

are you eating dairy? soy? oops I guess that was mentioned.

anyway, we will help you sleuth it out!!!! Give us info!!! & yes welcome to our group.

do you belong to your local support group? if not, might be the time to look them up...

jerseyangel Proficient
jerseyangel
Posted

Hi Lizzy and welcome! :)

This happens to me from time to time--I've been gluten-free for a little over 3 years.

Every time, it turns out to be either a new food (or brand) that turns out to be made on shared lines or a change in how something I am using is processed.

Definately check your personal care products--and go through everything you are consuming with a fine tooth comb. Are you eating out more often--or at a new restaurant?

I hope you get it figured out soon.

home-based-mom Contributor
home-based-mom
Posted

In addition to all of the above, read Open Original Shared Link thread. It may give you some ideas of where else to look.

white ridges Newbie
white ridges
Posted
Hello,

I am 23 years old and have been gluten-free for the past 2 years. At first the diet seemed to be working, my symptoms were improving! According to the Enterolab tests I did 2 years ago I am indeed gluten sensitive. However, I have been having digestive problems yet again and now am not so sure that the gluten-free diet is working. My symptoms include constipation, gas, bloating, distention, and abdominal and lower back pain. I'm really confused and not sure what I should be doing but I know that even with my current gluten-free diet I am still in pain and having digestive issues that an active 23 year old probably shouldn't be having. Any thoughts or suggestions?

THANKS!

white ridges Newbie
white ridges
Posted

Has a product you have been using changed? Just recently, the "Nautral" roast chicken at my local Stop & Shop deli which previously was labeled with Ingredients: chicken, now has a new look and label. Under the handy little cardboard holder that is wrapped around the container is a new label which says that the chicken is injected with a 18% solution of chicken broth, sea salt, corn starch, carageenan, brown sugar, natural flavor, canola oil, onion,carrot. No allergens. !!!!!! I am still waiting for a reply telling me what is in that chicken broth and what are those natural flavors? And that new label is not available to read until the product is taken home and unwrapped! I am not pleased. Anyway, you cannot take anything for granted. Have you licked stamps or envelopes or had communion wafers? That previous post about checking medications and supplements is very important too. Those 'other ingredients' can be a major problem. Good luck to YOU

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

Celiac.com Sponsor (A8-M):


Lizzy23 Newbie
Lizzy23
Posted
  • Author

Hey Everyone,

THanks for all of your imput, I really appreciate it! The frustrating thing is that I haven't really changed much in my diet or in my supplements so I can't really think of any sort of cross contamination that may have occured. Since I have been gluten-free for 2 years I pretty much know how to avoid things now. Grr. I'm looking for a new doctor that will hopefully have more answers. I"ll keep you all posted.

THanks!

RiceGuy Collaborator
RiceGuy
Posted

It sounds like perhaps something you've been using is now being made differently. I think you'll need to go through everything, call the companies, etc.

TrillumHunter Enthusiast
TrillumHunter
Posted

Sometimes it doesn't have anything to do with celiac. I had the same thing and wound up having my gallbladder out. I just recently posted about it. In one week of recovery I have seen all those "glutening" symptoms disappear. I never had any of the classic gallbladder symptoms.

Just a thought....

tinkonthebrink Newbie
tinkonthebrink
Posted

I'm brand new to this forum but wanted to mention that people with celiac disease can also have other problems just like everyone else. It's tempting to assume that symptoms that seem like they are related to gluten mean that celiac is the answer every time problems come up, but it could be another food sensitivity (dairy? nightshades?), it could, like someone else suggested, be gallbladder related (although you're awfully young for that), it could be a low level enterovirus, or it could in fact be a subtle exposure to gluten that you're missing. Good luck, and don't discount other possibilites. Maybe try a little elimination diet for suspect foods besides glutens first?

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.