Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

I Have Two Questions...

fisharefriendsnotfood

Recommended Posts

fisharefriendsnotfood Apprentice
fisharefriendsnotfood
Posted

My first question...

I've had SOOOOOOOOO many people tell me they know someone who had celiac disease but they grew out of it. I tell them no, it's impossible to grow out of, and they're insistant and say they did. ??????????????

Second...

What do you say to someone when they ask, "Well, what will happen if you eat wheat/gluten?" I am completely stuck and people ask me all the time.

Thanks for your help!

Jackie

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

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted

NO....you can't "grow out" of Celiac. Those people are obviously misinformed.

I haven't really had to explain to many people yet since I'm newly diagnosed.

Knowing how I am though...I'm sure I will go into full detail about Celiac, gluten and what it does to the body. Thats just me though....I'm sure I won't shut up about it for awhile. I will want everyone to KNOW about gluten. :rolleyes:

ianm Apprentice
ianm
Posted

celiac disease does not go away but it can go into remission. For me it would come and go during my teens. In my mid 20's it started going away less and in my 30's it was raging out of control non-stop. When I eat gluten I get fatigue and crippling brain fog. I just tell people it makes me very sick and that I just cannot function normally when I eat it. Usually that works. If they can't or won't get it I just write them off and exclude them from my life. I have reached a point where losers are not allowed in my life. That's why I come here, to be around the winners in life. :)

aikiducky Apprentice
aikiducky
Posted

I usually explain that my body mistakes a gluten molecule for a bacteria or virus, and starts to defend itself, but because there isn't actually anything to defend against, the antibodies start to eat up my intestines instead. Some people understand the explanation and are fine, others don't but it sounds impressive enough that they are fine anyway. Or maybe I'm just so convincing. :P With the really tough cases I go really scientific. :lol:

The reason why sometimes people appear to outgrow celiac disease is that it can present with different symptoms over the years, someone could have diarrhea as a child and then just headaches as a teenager for example, and get sicker again as an adult.

Pauliina

Lisa Mentor
Lisa
Posted

Well....

Ask them if they really want to know? Then ask them if they are sure that they really want to know.............then give it up.

Seriously, I have had so many people come up to me and ask what diet I was on, because I have lost so much weight. I have said, "you don't want my diet, I have digestive issues that you don't want". That usually ends the conversation. Many people just don't know what to say after that. And then, you can go about your business.

Lisa B.

tarnalberry Community Regular
tarnalberry
Posted
My first question...

I've had SOOOOOOOOO many people tell me they know someone who had celiac disease but they grew out of it. I tell them no, it's impossible to grow out of, and they're insistant and say they did. ??????????????

Second...

What do you say to someone when they ask, "Well, what will happen if you eat wheat/gluten?" I am completely stuck and people ask me all the time.

Thanks for your help!

Jackie

<{POST_SNAPBACK}>

Nope, you don't grow out of it.

As for the second question, I say one of the following, usually in decending order:

"Well, first I feel dizzy and disoriented, then... then it's about a week of 'intestinal trouble', if you know what I mean."

then

"It damages the intestines. I feel pain in the abdomen, it makes a lot of noise, and I'll be hanging out in the bathroom a fair bit, thank you."

then

"You can hear the food rumble through my intestines, it hurts like a jerk, the bathroom gets a lot more visits (and you don't want to head in after I do), and I feel like crap for a week. Enough to keep me away from it."

KaitiUSA Enthusiast
KaitiUSA
Posted

Once celiac, always celiac....can not outgrow it. You can have it with symptoms or no symptoms.

I tell people that it will damage my intestines and then that will cause interfering with absorption of food.

I like to use analogies sometimes to explain it as well.

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

Celiac.com Sponsor (A8-M):


nettiebeads Apprentice
nettiebeads
Posted

Nope, once you have celiac disease, you got it. Period. As for "what happens..." I usually tell them "really bad diarrhea and painful gas for starters.." because it usually gets asked when people are eating it really shuts them up. They don't want their appetite to be affected :P

luvs2eat Collaborator
luvs2eat
Posted

I've had people ask me, "Can't you just eat a LITTLE??" I tell them that I can... if I want molten acid shooting out my butt. Ha ha... it's graphic, but it makes my point.

sb4480 Newbie
sb4480
Posted
I've had people ask me, "Can't you just eat a LITTLE??" I tell them that I can... if I want molten acid shooting out my butt. Ha ha... it's graphic, but it makes my point.

<{POST_SNAPBACK}>

Lol- that reminds me of the time I had indian food during a flare up. I ate it because I knew it was safe and gluten-free, but I didn't take into account the chili as it was leaving. Now I know to eat PLAIN rice when my stomach hurts.

fisharefriendsnotfood Apprentice
fisharefriendsnotfood
Posted
  • Author

Thanks so much everyone!

skoki-mom Explorer
skoki-mom
Posted

Well, my reply to "what happens if you eat it" is "nothing" (true, in my case), which is followed by "then why be on the diet", which is followed by me saying that I'm just not interested in being a crippled old lady from osteoporosis having the nurses in the nursing home change my colostomy bag because I would up with bowel cancer......................

In my case it's about preservation of my future health and not symptom control! If people don't get it, I just say it's the same reason I don't smoke and do other things that are bad for my health. If they don't get it, <shrug> oh well, what can you do??

ravenwoodglass Mentor
ravenwoodglass
Posted

No you don't outgrow a genetic difference, and I just tell people I will get sick,if they have health problems also I go into greater detail but the rest just need to know it makes me sick.

spetti Newbie
spetti
Posted

Well, Jackie, I'm new to this myself, but certainly one cannot 'grow out of' a genetic disease.

As for the answer to the second question. I say " I will get very sick, very quickly and for a long time if I eat even a trace of gluten." If they persist, I refer to "extreme digestive problems" and leave it at that. Hopefully, someone that dense is not responsible for my food. :D

Steve

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,925
    • Most Online (within 30 mins)
      7,748
    LJ11
    Newest Member
    LJ11
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      How many grams is there in one slice of wheat bread?

      By Scott Adams · Posted

      The first set of results show two positive results for celiac disease, so at the very least it looks like you could have it, or at the least NCGS.   Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.      
    • Scott Adams
      Confused with test results

      By Scott Adams · Posted

      Elevated tissue transglutaminase IgA (tTG-IgA) levels are highly specific for celiac disease, and they are a key biomarker used in its diagnosis. However, there are some rare instances where elevated tTG-IgA levels have been reported in conditions other than celiac disease. While these cases are not common, they have been documented in the literature. Below are some examples and references to studies or reviews that discuss these scenarios:  1. Non-Celiac Gluten Sensitivity (NCGS)    - NCGS typically does not cause elevated tTG-IgA levels, as it is not an autoimmune condition. However, some individuals with NCGS may have mild elevations in tTG-IgA due to intestinal inflammation or other factors, though this is not well-documented in large studies.    - Reference: Catassi, C., et al. (2013). *Non-Celiac Gluten Sensitivity: The New Frontier of Gluten-Related Disorders*. Nutrients, 5(10), 3839–3853. [DOI:10.3390/nu5103839](https://doi.org/10.3390/nu5103839)  2. Autoimmune Diseases    - Elevated tTG-IgA levels have been reported in other autoimmune conditions, such as type 1 diabetes, autoimmune hepatitis, and systemic lupus erythematosus (SLE). This is thought to be due to cross-reactivity or polyautoimmunity.    - Reference: Sblattero, D., et al. (2000). *The Role of Anti-Tissue Transglutaminase in the Diagnosis and Management of Celiac Disease*. Autoimmunity Reviews, 1(3), 129–135. [DOI:10.1016/S1568-9972(01)00022-3](https://doi.org/10.1016/S1568-9972(01)00022-3)  3. Chronic Liver Disease    - Conditions like chronic hepatitis or cirrhosis can sometimes lead to elevated tTG-IgA levels, possibly due to increased intestinal permeability or immune dysregulation.    - Reference: Vecchi, M., et al. (2003). *High Prevalence of Celiac Disease in Patients with Chronic Liver Disease: A Role for Gluten-Free Diet?* Gastroenterology, 125(5), 1522–1523. [DOI:10.1016/j.gastro.2003.08.031](https://doi.org/10.1016/j.gastro.2003.08.031)  4. Inflammatory Bowel Disease (IBD)    - Some patients with Crohn’s disease or ulcerative colitis may have elevated tTG-IgA levels due to intestinal inflammation and damage, though this is not common.    - Reference: Walker-Smith, J. A., et al. (1990). *Celiac Disease and Inflammatory Bowel Disease*. Journal of Pediatric Gastroenterology and Nutrition, 10(3), 389–391. [DOI:10.1097/00005176-199004000-00020](https://doi.org/10.1097/00005176-199004000-00020)  5. Infections and Parasites    - While infections (e.g., giardiasis) are more commonly associated with false-positive tTG-IgA results, chronic infections or parasitic infestations can sometimes lead to elevated levels due to mucosal damage.    - Reference: Rostami, K., et al. (1999). *The Role of Infections in Celiac Disease*. European Journal of Gastroenterology & Hepatology, 11(11), 1255–1258. [DOI:10.1097/00042737-199911000-00010](https://doi.org/10.1097/00042737-199911000-00010)  6. Cardiac Conditions    - Rarely, heart failure or severe cardiovascular disease has been associated with elevated tTG-IgA levels, possibly due to gut ischemia and increased intestinal permeability.    - Reference: Ludvigsson, J. F., et al. (2007). *Celiac Disease and Risk of Cardiovascular Disease: A Population-Based Cohort Study*. American Heart Journal, 153(6), 972–976. [DOI:10.1016/j.ahj.2007.03.019](https://doi.org/10.1016/j.ahj.2007.03.019)  Key Points: - Elevated tTG-IgA levels are highly specific for celiac disease, and in most cases, a positive result strongly suggests celiac disease. - Other conditions causing elevated tTG-IgA are rare and often accompanied by additional clinical findings. - If celiac disease is suspected, further testing (e.g., endoscopy with biopsy) is typically required for confirmation. If you’re looking for more specific studies, I recommend searching PubMed or other medical databases using terms like "elevated tTG-IgA non-celiac" or "tTG-IgA in non-celiac conditions." Let me know if you’d like help with that!
    • MaryMJ
      Water filters and gluten

      By MaryMJ · Posted

      I called zero water and they state their filters do not contain gluten or gluten containing ingredients. 
    • trents
      What should I do with these test results?

      By trents · Posted

      I agree. Doesn't look like you have celiac disease. Your elevated DGP-IGG must be due to something else. And it was within normal at that after your gluten challenge so it is erratic and doesn't seem to be tied to gluten consumption.
    • Jack Common
      How many grams is there in one slice of wheat bread?

      By Jack Common · Posted

      Hello! I want to share my situation. I had symptoms like some food intolerance, diarrhea, bloating, belching one year ago. I thought I could have celiac disease so I did the blood tests. The results were ambiguous for me so I saw the doctor and he said I needed to do tests to check whether I had any parasites as well. It turned out I had giardiasis. After treating it my symptoms didn't disappear immediately. And I decided to start a gluten free diet despite my doctor said I didn't have it. After some time symptoms disappeared but that time it wasn't unclear whether I'd had them because of eliminating gluten or that parasite. The symptoms for both are very similar. Giardiasis also damages the small intestine. The only way to check this was to start eating bread again as I thought. Now about my results.   These are my first test results (almost a year ago) when I had symptoms: The Tissue Transglutaminase IgA antibody - 0.5 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) The Tissue Transglutaminase IgG antibody - 6.6 U/ml (for the lab I did the tests 0.0 - 3.0 is normal) Immunoglobulin A - 1.91 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) IgA Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) IgG Endomysial antibody (EMA) - < 1:10 titer (for the lab I did the tests < 1:10 titer is normal) Deamidated gliadin peptide IgA - 0.3 U/ml (for the lab I did the tests 0.0 - 6.0 is normal) Deamidated gliadin peptide IgG - 46.1 U/ml (for the lab I did the tests 0.0 - 6.0 is normal)   Then I didn't eat gluten for six months. Symptoms disappeared. And I started a gluten challenge. Before the challenge I did some tests. My results: The Tissue Transglutaminase IgG antibody - 0.5 U/ml (for the lab I did the tests < 20 U/ml is normal)) Deamidated gliadin peptide IgG - 28 U/ml (for the lab I did the tests < 20 U/ml is normal)   During the challenge I ate 6 slices of wheat bread. After the challenge my results are: The Tissue Transglutaminase IgA antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) The Tissue Transglutaminase IgG antibody - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.31 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgA - 2.0 U/ml (for the lab I did the tests < 20 U/ml is normal) Deamidated gliadin peptide IgG - 2.13 U/ml (for the lab I did the tests < 20 U/ml is normal)   To be sure I continued consuming gluten. I ate a lot each day. Two months after I did the tests again. My results I got today are: The Tissue Transglutaminase IgA antibody - 0.7 U/ml (for the lab I did the tests < 20 U/ml is normal) Immunoglobulin A - 1.62 g/l (for the lab I did the tests 0.7 to 4 g/l is normal) Deamidated gliadin peptide IgG - 25.6 U/ml (for the lab I did the tests < 20 U/ml is normal)   Nowadays I didn't have any symptoms except tiredness but I think it's just work. I think it was this parasite because two years ago, for example, and before I didn't have these symptoms and I always ate gluten food. But I'm still not sure especially because the Deamidated gliadin peptide IgG results are sometimes high. What do you think? @Scott Adams
×
×
  • Create New...