People Keep Saying It'll Go Away

[Guest zipy]

This has happened a number of times now. People keep suggesting that my gluten intolerance will go away as soon as I stop nursing, because weird things happen when you nurse. It's to the point where they just don't believe me when I tell them that being a Celiac is for life. Even my husband said that if in a year I feel better then we'll know that it was just the baby nursing. I'm so new with this, that even I'm begining to say, well, maybe they're right. They just don't understand and then they don't get it when I say, nope, you're wrong...they still think that they're right. Is it just because it's so unheard of? Reassurance please, it's never going away, right? I guess this goes back to the post a few weeks ago that classified people in your life, the ones that understand and make an effort to help, those that acknowledge it but don't really understand, and those that just don't get it at all.

~Erin

[KaitiUSA]

No, it will not go away. When you are diagnosed, thats it you have it...no going back to not having it ever again.

Now pregnancy can trigger celiac to activate so your symptoms may have started with that. You do not have to have any symptoms at all to have it though.

They need to research it a little more. Tell them to come to this site and get info before they start giving out inaccurate info.

Don't let it get you down...we are all here to help if you need us too

[MySuicidalTurtle]

I have been told that, too! That I will grow out of it. I tell these people that it is a genetic auto-immune disorder and not some passing food intolerance but they don't agree. At least we know about our Disease.

[ianm]

People just can't accept that food can make you sick like that. If I have to tell a moron the same thing twice then that moron is out of my life.

[Merika]

Hi Erin,

blech....I hate this sort of thing! Your baby is nursing. You have celiac. Period. They are UNRELATED. In addition, the longer you nurse your baby for, the less likely he/she is to develop celiac. This is NEW research. Maybe they will shut up if you tell them.

There are cases of celiac symptoms being triggered by pregnancy or birth, but it does not go away. Any stressor on the body can trigger celiac, I'm not trying to single out birth, just saying that if your symptoms just started, this *could* be related (or may not be).

Sadly, new mothers and pregnant women are pretty much subject to everyone's two cents and their grandma's and it can make you crazy if you listen to all of it. Nursing is part of nature's plan for us - we are designed to do it and do it well - "weird things" don't just happen when you nurse. That must be an old wives tale....

Merika

If you are looking for nursing support, check out your local La Leche League www.lalecheleague.org

[Guest zipy]

Hi Merika,

Thanks for your response. I'm perfectly okay with nursing, this is number 2 and I plan on doing it for as long as possible (especailly since I read about it prolonging the onset of celiac disease). Birth did trigger the Celiac disease with me, no question about it, I was sick almost immediately after and as soon as I started a gluten-free diet I felt 100% better. ...it's just that people say it'll go away and I'm just getting frusterated of explaining it... I guess this is just the beginning of the rest of my life with being a Celiac, huh?

~Erin

[tarnalberry]

Just tell them that stopping breast feeding will in no way change your gentics, hence it will not go away. It's possible, I suppose, that your symptoms may manifest differently, but it won't go away.

[nettiebeads]

Years ago I had an internist dr that told me I could eat wheat again. So if dr's don't get it, regular people won't either. If you were diabetic, they wouldn't force sugar down your throat. It's an autoimmune disorder that, if you have the marker, can be triggered by stress at any point in your life. The most important thing is to keep yourself healthy for your baby's sake. Don't worry if family and friends don't "get it". If possible, download and print off any information you can to educate your family. Did you know that researches now think that as many as one in 133 people have celiac disease? (when I first started reading up on celiac disease the number was 1 in 500) Did you know that it is a trait shared by people with Northern European heritage? The hardest part of celiac disease is the constant reading of labels and being on your toes at all times to prevent cross contamination. But this is a wonderful forum and I'm sure you will find lots of support here and answers to your questions.

[swittenauer]

A lot of people don't understand & just think it is a simple allergy & don't realize all the damage that can be done by not strictly being gluten free. I think maybe some people just don't want to understand. I've even run into people who seem to think it is some new diet or something. Anyway, all you can do is try & educate people or move on. I have found that the people who really are my friends seem to really care & also do a lot of research to help also.

[Jnkmnky]

Politics, Religion and Celiac Disease should not be discussed in mixed groups.

My approach has been lovingly dubbed "talk torture" by a loved one who thought she knew more than I about Celiac Disease.

Just start telling the facts. Shoot down the inaccuracies they dish out. Have one finger extended towards the *on button of the computer and offer to download vital information they are lacking. Show them your pantry and go over every single item you've purchased to replace the gluten items. Don't relent until they cry "UNCLE". Then you know they'll never question you or your disease again. It seems cruel at first, but trust me...you're doing them and yourself a big favor in the long run.

[pixiegirl]

My Celiac symptoms started immediatly after child birth for me too. I suffered for 11 years with supposedly Chronic Fatigue, lactose intolerance, and IBS, when what I really had is Celiac.

Susan

[Guest gfinnebraska]

I had celiac disease "start" with me after the birth of my second son. It is VERY common for childbirth to "bring on" celiac. I always tease my son that if it weren't for him I would be eating doughnuts right now!! Tell your husband and friends that it will NOT go away after you stop breast feeding, and please help you deal with it ~ not try and "wish" it away!!!

[skbird]

Kimberly - I love the doughnut story! My mom always says the reason she had me is because one day, in the market, she had to decide between buying birth control pills and artichokes, which were on special. She chose the artichokes. Must be genetic - I can't stand birth control pills and I love, LOVE artichokes!

Stephanie

[KaitiUSA]

My mom always says the reason she had me is because one day, in the market, she had to decide between buying birth control pills and artichokes, which were on special. She chose the artichokes.

haha thats just too funny

[WyoShiela]

Hi Erin,

It sounds like you are getting lots of wonderful advice here. I've been gluten free for almost 4 years, and I felt the same at first. I think people relate this to a regular allergy that can get better after a while of abstaining from that food. I spent the time and effort explaining to those that are close to me, and everyone else does not matter. My grandmother just can't understand and I always feel like I'm insulting her when I don't eat the food she's prepared. But I choose to be healthy anyway!!

I 'm going to visit my step-brother and his new wife soon. I have not seen him in 12 years due to the distance. I'm dreading having to explain it to them so that I can eat while I'm there. I feel like such a burden.

[VegasCeliacBuckeye]

I can relate....

I have two relatives in California (one is a Psychologist, one is a psychiatrist) and they both told me that Eastern Medicine and the use of "pendulum therapy" can ease my medical condition and eventually cure it.

I just smile and nod when they get on their rants.....some people (even medical people) have no clue.....

[watkinson]

Maybe try expaining the genetic aspects of it again, like....My eyes are blue. They will not turn brown when I stop nursing. I am 5''5" tall. I will not get taller when I stop nursing. I have a British ancestory, I will not be chinese when I stop nursing. Ect.

Maybe if they understand it as an autoimmune disease like MS, Lupus, rhumatoid arthritis, or diabetis they will get it.

Good luck, Be relentless,

Wendy

[WRowland]

My celiac was activated by a life threatening and high drama pregnancy. My daughter is now 22 and we are waiting for her results.

I nursed her until she self-weaned and have no regrets. But my husband asked me hundreds of times if I was sure she was getting enough to eat. My family pattern is to have premature babies that are extremely long and off the growth charts for height, and off the growth charts for weight gain on the other end. This freaks out pediatricians, but all of us do just fine. But we get a lot of pressure from medical types that something might be wrong.

Until I was ten, I was the only child in an extended family, with four adults. My own parents and a couple that were their best friends. So I had two mommies and two daddies. Each of them reacted differently to this pressure and worried about my eating habits differently.

My mother's response to this pressure was to obssess about every bite of food that went into my mouth, generally doctoring every mouthful with loads of supplemental vitamins, dosed me with so much Geritol that I haven't ever needed iron supplements despite life long blood donations. GENERALLY, everything she made me eat tasted nasty, and I wouldn't eat much of it, and food became a power issue between us.

My father was resigned. Basically, he said, "If she's hungry, she'll eat". So he was an enabler. When I refused to eat anything but Corned Beef Hash for three years, he just brought home hash by the case. (Notice that meat and potatoes are gluten free foods-maybe I figured it out myself.)

My other mother decided that cooking delicious food would work. She was a hell of a cook, and many came long distances to eat her fried chicken, mashed potatoes and gravy, and most of all, her homemade cloverleaf dinner rolls that she made from scratch every day. She probably spent an hour every day trying to get me to eat her specialties. I knew that others were in ecstacy over her rolls especially, but I didn't enjoy eating them. Gratefully, she loved me anyway.

My other father was Cherokee/Blackfoot and my pal. Like my Dad he seemed to think that "she'll eat if she's hungry". But he wasn't as passive as my father. He decided that I might eat more if I was distracted. So he would bring home large quantities of fruits and vegetable, and feed them to me in bite sized pieces while I watched my favorite cowboys on television. As long as I was eating I was allowed to keep watching.

Geez, it's a wonder I didn't end up bulemic or anorexic.

When a growth spurt hit around age 8, I started eating anything that wouldn't fight back and wigged out the adults. They had been obsessing so long they didn't know what to do with the time they got back.

When my premature daughter was too long and didn't weigh enough to fit on those damned charts, I was pressured just like my four parents. Except that I knew that I turned out fine. I resisted, and I didn't obsess about my daughter's eating patterns. I provided a large range of healthy food, made sure that she had access to it that she controlled and stepped back.

But my husband was still experiencing this for the first time. He asked me a thousand times if I was sure that she was getting enough to eat, both nursing and later. Everytime he asked it hurt me. He was asking and sometimes demanding that I reassure him. While I was working out one nursing problem (all iatrogenic, I might add) I needed him to reassure me, but it wasn't going to happen. In the end, I had my four parents to thank for acting out a lot of weird poop for me and clarifying the whole subject. Food is a lifetime relationship and we all have to deal with it. It can get pretty weird, but we all have to take responsibility for how we manage it. Nobody can do it for us.

Most of all I wanted my daughter to have a healthy relationship with food, based on her instinctive response to what worked for her, and as free of all that neurotic crap as possible. Mind you, this was decades before my diagnosis. Now, I cling to the knowledge that I taught her to trust herself and listen to her body. If she is also celiac, she will need that awareness.

[stef-the-kicking-cuty]

Maybe try expaining the genetic aspects of it again, like....My eyes are blue.  They will not turn brown when I stop nursing.  I am 5''5" tall. I will not get taller when I stop nursing.  I have a British ancestory, I will not be chinese when I stop nursing.  Ect.

I like this explanation. I will use that from now on, too. Maybe I also make little cards (size of business cards) with this homepage URL for people who don't get it to refer them here

My father was resigned.  Basically, he said, "If she's hungry, she'll eat".  So he was an enabler.  When I refused to eat anything but Corned Beef Hash for three years, he just brought home hash by the case.  (Notice that meat and potatoes are gluten free foods-maybe I figured it out myself.)

When my premature daughter was too long and didn't weigh enough to fit on those damned charts, I was pressured just like my four parents.

You probably DID figure out yourself. That means your body. Our body and brain are much more connected than we know. And our subconsious tries to tell us things constantly, but most of us don't understand. We need to listen more.

Those damn charts, they are waaaay of anyway. They throw everybody in the same pot. And there are so many different body types out there. My personal philosophy is, if you don't run around with a white face from anemia (that actually shows your lack of nutrition) and your bloodtests come back fine and you feel fine, then you actually don't have to gain weight. The "normal" charts for how tall I am are at 60 kg. I have 50 kg again (I had 60 for a little while before and I hated myself for it) and I feel fine. Yes, my cheeks are thin and at the moment I have dark rings (but only sometimes) under my eyes or are (very very rare) white in the face (but I had a couple of gluten accidents lately, too). But I wonder how you would look, if you haven't slept one morning in since 4 month (today is my first day again I can do this since I started the world championship preparation). I feel fine (indeed I feel better than I ever have in my entire life); I love my body again; I'm skinny again; in the morning I can see my tummy muscles again (Yippie, show off, be cocky....just kidding) !

My mother-in-law and my hubby always say: "You need protein...you need protein...blablabla... you get weak...blablabla... and loose your muscles...yadiyah...can't fight." What a bunch of cr...! I can't hear it anymore! Really! Yes, protein are ok, but there are healthy plant and fish protein, too. And they are healthier then their d@#*n venicen and pork protein and have less fat. I mean... How do vegetarians do this??? I know a lot of vegetarians that are healthier and more sportive than they are.

My hubby said: "Uugh, I'm glad, when this whole world championship nutrition cr... is over." I told him "Buddy, I have to disappoint you, if you think it's over after the worlds!" Yes, of course I will go out to dine again and have more ice cream here and there. But I will never ever stop eating enough veggies, fruit and yoghurts again. I will keep continue living Just like I did the last four month. And I will continue to do regular exercise. The next worlds (maybe even the Olympics one day!) come for sure and I don't want to start right from the beginning again like this time. And why gain much weight, when I have to get it back down anyway again? I never was much of a veggie and fruit eater. But I discovered a lot of benefits during my 4-month-change-in-eating-habits-period:

- The gaggy feeling that I still had despite a glutenfree diet disappeared completely, when I stopped all that Snickers and Ice cream and snacks snagging

- I can eat as much as I want, I will always get my nutrition and have no weight problems, even without exercise!

- It's tasty with the right sauces!!!

- I don't ever want to feel gaggy for a longer period of time again

- I suppose the sugar in all the candy I consumed made me feel gaggy in the first place...

So now my point was actually...

To h.... with all those charts. Your weight is always as good as you feel and your "non-lack-of-nutrition" in your blood shows. Period! If I have 60 kg like I'm "supposed" to have I look so fat, it's not even funny anymore...

Sorry, I needed to explode and rant real quick. I wish people would get of my back sometimes and to h@#* with those charts. Really!!!

Thanks for listening to my rant attack !

Hugs, Stef

[stef-the-kicking-cuty]

Oh, and I forgot the even most important point in my benefits thingy:

No food is as fast (even "fast food") as grabbing a fruit or some veggies. You don't have to clean up dishes afterwards and you can eat it EVERYWHERE (even if you can't go to a restaurants as a celiac), because EVERYWHERE are supermarkets...

[nogluten-]

Hi Merika,

Thanks for your response.  I'm perfectly okay with nursing, this is number 2 and I plan on doing it for as long as possible (especailly since I read about it prolonging the onset of celiac disease).  Birth did trigger the Celiac disease with me, no question about it, I was sick almost immediately after and as soon as I started a gluten-free diet I felt 100% better.  ...it's just that people say it'll go away and I'm just getting frusterated of explaining it...  I guess this is just the beginning of the rest of my life with being a Celiac, huh?

~Erin

<{POST_SNAPBACK}>

I dont let it annoy me...i just think how uneducated they are and it makes me laugh.

[cornbread]

I've had the same thing. Well-meaning friends have asked me "oh, are you still on that gluten free diet?" Like it's a choice! Even though I explained in detail WHY I can't have gluten, they just hear the word "diet" and figure it's something I just decided to 'try' for fun.

[SillyYakMom]

Sometimes people just don't understand. My Dh knew that I had it before we were married, but I asked him flat out. "So when you eat a wheat sandwich or whatever you don't have pain? You don't feel sick immediately." When he said no I realized he will never really know about it. But you know what your body is feeling, go with that feeling.

[bluelotus]

People just can't accept that food can make you sick like that. If I have to tell a moron the same thing twice then that moron is out of my life.

<{POST_SNAPBACK}>

Ha! You're cynical and sarcastic just like me - I appreciated reading this.

[ianm]

I not sure if I would say cynical, just realistic but definitley sarcastic and maybe warped. I wasted the first 36 years of my life because of celiac disease and I don't want to waste one minute more. Life is too precious to waste. The people in my life now of the highest quality and a joy to be around.