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Confused

Amooliakin

By Amooliakin
in Coping with Celiac Disease

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Amooliakin Apprentice
Amooliakin
Posted

I read two things that seem to contradict each other. I'm wondering if they are both true but for different people.

One said that it is common to go gluten-free for a few years as a kid, then let gluten back in the diet with no symptoms. The book was explaining that no symptoms does NOT mean no Celiac disease. But I had not heard before of symptoms disappearing with age.

On the other hand, I hear a LOT from people who had less symptoms BEFORE going gluten-free and who find that after they have gotten all gluten out of their bodies they have a much STRONGER reaction to even tiny amounts.

So which is true?

Or can it be both?

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happygirl Collaborator
happygirl
Posted

I believe it is both.

It makes sense because they describe celiac as a medical chameleon. Some people are 100% asymptomatic, others are debilitated and have every symptom, and most fall somewhere in between.

So yes, it is possible to have reactions sometimes, and others not. But, like you said, the lack of symptoms does not mean celiac is not there (proof: Asymptomatic celiacs with completely blutned villi)

And yes, some people who get gluten out get increasingly sensitive (I am a lucky one of those people).

mommida Enthusiast
mommida
Posted

Both are true.

In the old days, they thought children outgrew Celiac because the symptoms lesson.

Since going gluten free my symptoms of accidental glutening have been worse in my opinion. (To explain all of that would be TMI.)

L.

happygirl Collaborator
happygirl
Posted

isn't it interesting what docs "used" to know...

Nantzie Collaborator
Nantzie
Posted
isn't it interesting what docs "used" to know...

Are you suggesting that leeches AREN'T gluten-free??? :lol:

I'm going to have to rethink my HMO...

B)

But seriously folks...

I think I read the same book. They said that during adolescence that the symptoms can lessen. I think at this point they're not sure if it's a true remission, where no celiac or intolerance is present and no damage is being done at all, or if it's still damaging you, but just not showing outward symptoms.

Nancy

Saz Explorer
Saz
Posted

I've never been somone to get sick on just a piece bread, however even I have always had my limits.

When I was younger my limit was a lot less than what was since I was prolly about 14, howver even I have been able to eat more gluten in my teens, I most def still have limits.

From what I have read tho, this doesn't mean its not hurting you - I think it is much like a smoker, Just because it doesnt effect you immediately doesn't mean that it is not doing any damage.

I have heard of people who are allergic to gluten but after following a gluten free diet for a year or so can eat it again and they don't have problems.

almostnrn Explorer
almostnrn
Posted
Both are true.

In the old days, they thought children outgrew Celiac because the symptoms lesson.

Since going gluten free my symptoms of accidental glutening have been worse in my opinion. (To explain all of that would be TMI.)

L.

I had a clinical intstructor in nursing school try to tell me that this was the case with her. How do you correct your professor and the keeper of your clinical grade?! I tried to test the waters and she wouldn't hear of it...there was no way she could be wrong and her student was right. I let it go quickly, lol. Although that does explain a lot of her mental instabilities! :P

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mommida Enthusiast
mommida
Posted

Danna Korn has mentioned "the honeymoon phase" in her book Kid's with celiac disease. There are other documented sources out there.

Wait until your grade is in, set in stone, and then drop off an information packet to this "teacher". ;)

L.

Amooliakin Apprentice
Amooliakin
Posted
  • Author

I know I am going off the topic now... but you bring up an interesting phenomenon. Now that I know about celiac, and we are taking care of our daughter in the right way, I find there are SO MANY adults who I meet who think they outrgrew celiac years ago, or their adult kids did, etc. They do not want to hear differntly - and I don't know them well enough to tell them the truth. I wish there was one simple booklet that I could hand out instead of trying to explain it or refer them to books they don't want to read or web sites they don't think they need....

Tim-n-VA Contributor
Tim-n-VA
Posted

Doesn't some of the confusion come from the fact that you can outgrow an allergy and a wheat allergy could have very similar outward symptoms to celiac?

Lisa Mentor
Lisa
Posted
Doesn't some of the confusion come from the fact that you can outgrow an allergy and a wheat allergy could have very similar outward symptoms to celiac?

Yes, most likely. Some many out grow an allergy, but an intolerance, never. <_<

lindalee Enthusiast
lindalee
Posted

I was a celiac baby and thought I outgrew it until this year. I don't understand why symptoms are hidden. I have heard that smoking hides the symptoms.

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      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

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      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
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      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

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