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
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
      131,543
    • Most Online (within 30 mins)
      7,748
    yfuvhg
    Newest Member
    yfuvhg
    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

    • 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.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.