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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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    • knitty kitty
      My only proof

      By knitty kitty · Posted

      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
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    • knitty kitty
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      By knitty kitty · Posted

      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
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      By trents · Posted

      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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