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.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      High TTG-IgG and Normal TTG-IgA

    2. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      High TTG-IgG and Normal TTG-IgA

    3. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    4. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    5. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748

    LMGarrison
    Newest Member
    LMGarrison
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
×
×
  • 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.