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

Why Does Removing Gluten Makes Symptoms More Obvious


sugarsue

Recommended Posts

sugarsue Enthusiast

Do you know why, before my daughter went gluten free, it was not obvious that it was the gluten making her sick but now that she's been gluten free for 4 1/2 months, she's like a gluten detector and cross contamination by eating something made on shared equipment will make her sick almost immediately?

Same thing with me, I'm allergic to wheat and it used to be that I didn't notice any specific symptoms except I had periodic horrible itching but it was not all the time and I ate wheat every day without seeming sick or overly uncomfortable. Now that I've been wheat free for some time, any wheat at all gives me the dreaded itchies.

I keep wondering why it took us so long to figure it all out when it seems so painfully obvious now. Thanks for your thoughts.


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



Celiac.com Sponsor (A8-M):



happygirl Collaborator

I don't have the answer, but have seen this topic referenced:

"Celiac disease is the result of an immune response to gluten. Gluten exclusion removes the antigen that stimulates CD4 T-cell-mediated tissue damage in the gut, but does not remove the immune response. In fact, gluten exclusion may heighten the immune response stimulated by gluten since regulatory T cells are typically not maintained unless antigen exposure continues. This may explain why gluten exposure triggers more dramatic symptoms following adoption of a gluten-free diet than during chronic gluten exposure associated with untreated celiac disease."

The above is from an abstract of a chapter in the book: Fasano A, Troncone R, Branski D (eds): Frontiers in Celiac Disease. Pediatr Adolesc Med. Basel, Karger, 2008, vol 12, pp 172

sugarsue Enthusiast
I don't have the answer, but have seen this topic referenced:

"Celiac disease is the result of an immune response to gluten. Gluten exclusion removes the antigen that stimulates CD4 T-cell-mediated tissue damage in the gut, but does not remove the immune response. In fact, gluten exclusion may heighten the immune response stimulated by gluten since regulatory T cells are typically not maintained unless antigen exposure continues. This may explain why gluten exposure triggers more dramatic symptoms following adoption of a gluten-free diet than during chronic gluten exposure associated with untreated celiac disease."

The above is from an abstract of a chapter in the book: Fasano A, Troncone R, Branski D (eds): Frontiers in Celiac Disease. Pediatr Adolesc Med. Basel, Karger, 2008, vol 12, pp 172

Stefani Newbie
I don't have the answer, but have seen this topic referenced:

"Celiac disease is the result of an immune response to gluten. Gluten exclusion removes the antigen that stimulates CD4 T-cell-mediated tissue damage in the gut, but does not remove the immune response. In fact, gluten exclusion may heighten the immune response stimulated by gluten since regulatory T cells are typically not maintained unless antigen exposure continues. This may explain why gluten exposure triggers more dramatic symptoms following adoption of a gluten-free diet than during chronic gluten exposure associated with untreated celiac disease."

The above is from an abstract of a chapter in the book: Fasano A, Troncone R, Branski D (eds): Frontiers in Celiac Disease. Pediatr Adolesc Med. Basel, Karger, 2008, vol 12, pp 172

loxleynew Apprentice
Thank you so much for that article - I thought I was losing my mind! I was wondering why my accidental ingestion of allergen food symptoms were getting WAY WORSE since I adopted an allergy free diet. I think this may explain what is going on with me.

So essentially would this mean if I went gluten free for 3-4 months, then ate gluten and felt normal that I did not have gluten intolerance or celiac? I was just wondering because I was never diagnosed, as 1/8 of the tests said I had sensitivity and the rest were normal.

Amyleigh0007 Enthusiast

I don't agree with that at all. My son's symptoms have gone away now that he has been gluten free for almost one year. He was diagnosed Celiac through bloodtest and biopsy. For a child of his age, both his pediatrician and GI said they were shocked at his high numbers and damaged small intestine. There is no doubt about it that he has Celiac. He ate some bun off of a hamburger a few weeks ago. He did not have any symptoms other than a bit of sleepiness. Nothing even close to his symptoms before he went gluten free. So, according to that article, my son doesn't have Celiac? That is insane. Read the thread about the rain barrel effect. That makes much more sense.

happygirl Collaborator

The quote posted is just a very brief abstract of an entire chapter. I don't believe the author is suggesting that someone in your son's condition does not have Celiac. But -for those that do have a heightened response, it may be the mechanism behind it.


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



Celiac.com Sponsor (A8-M):



mamaesq Rookie

I've been gluten-free since October 2, and I can think of 5 times that I've ingested gluten (only once was intentional...it was after my grandfather died and I was eating pizza in part because it was St. Louis style and I haven't had it in years, but also, it was part of grieving for me...I learned THAT lesson).

The first time was about 2 weeks after going gluten-free, I ate a salad at Applebees and had stomach cramps and major gas.

The second time was after eating out (hmmm...notiing a trend) and despite assurances that what I ate would be ok, I had explosive diarrhea and gas.

The third time was Thanksgiving when my mom used regular stuffing in the bird, and despite my best efforts to eat only breast meat, I had diarrhea for 4 days.

The fourth time was when I ate the pizza. I did not have diarrhea, but I did have horrible nausea and about six BMs the next day.

The fifth time was after eating out, I ate chili which again, I was assured did not have wheat in it, and that night, not only did I have diarrhea, but I had projectile vomiting. I checked the ingredient list on their website and saw that the chili did have wheat in it. I felt completely fine the next day, so I knew I didn't have a stomach bug.

My symptoms have gotten so much worse each time, it's unreal. My mom (who was diagnosed the same day I was) did not believe me that I was vomiting over it, but there is no other explanation. I am to the point where I am truly afraid of gluten, not just because of the long term consequences, but because of the immediate effects!!

ang1e0251 Contributor

We have to remember, we are all individuals with different reactions. Also there is a lot we don't know about celiac disease. Why one person reacts violently and another mildly may not be something we understand completely. Remember that dr's thought kids would "grow" out of it because many stopped reacting? Well, we learned that was false. There's just a lot of mystery still with this disease and sometimes we just have to accept that.

On the other hand, when we discuss these issues many times a point of view appears that may explain a group's certain reactions. It's all good but IMO, you shouldn't make yourself too crazy if you can pinpoint every answer.

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.