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

I Have Two Questions...


fisharefriendsnotfood

Recommended Posts

fisharefriendsnotfood Apprentice

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

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

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

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

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
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

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

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

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
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

Thanks so much everyone!

skoki-mom Explorer

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

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

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.

  • 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. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    2. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    4. - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

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

    • Total Members
      133,015
    • Most Online (within 30 mins)
      7,748

    CravingADonut
    Newest Member
    CravingADonut
    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

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • 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.