Question For Veteran (5+ Years) Celiacs....

[burkev]

Greetings from "cheesehead land":

First...thanks to all for sharing your most intimate details...it has been very comforting to find this wealth of trustworthy knowledge.

My life has changed for the good in most every aspect since going gluten free and with growth always comes questions. I was wondering about the veteran celiacs ....what they have observed / experienced in changes to sensitivity and / or changes in reaction since their initial diagnoses.

When I went gluten-free back in August my symptoms largely disappeared ...to wit; fatigue, flatulence , DH or floaters, stomach indigestion (always cured with antacids), and the one I rarely had..bloating with resultant chest pressure.

I've noted all the symptoms in the posts on all the topics are similar .......yet varies widely in severity.... thinking that it is in direct relation to us differing in our makeup . IE: someone recently made toast with breakfast.....stacking their toast on top of my Tapioca loaf toast...for me , no reaction, for others a crumb sends their body into a tailspin. I'm sure since I went gluten-free I've accidentally gotten cross contaminated foods....I even ate a patty melt made on grilled dark rye bread( intentionally)....no noticeable reaction .

Sometimes I'm tired on my way home from work....but not like before...now I'm tired because it was WORK...it takes a bit of common sense, prayer, healthy self talk, to avoid what i believe is a pitfall I think exsists....thinking there is a gluten crumb behind everything (forgive my liberty of using the old Joe McCarthy communist behind every bush...remember he was from wisconsin too !! ;-))))) )

so another question for the vets is : do the symptoms increase in severity as one ages being gluten-free or do they lessen ?? Can one expect new symptoms to appear after being gluten-free for years if you were accidentally glutened ?? Is there any RELIABLE documented medical research on celiac monitoring thru an extended period of years ??

To date I firmly believe you all do more justice than the medical community!!!!!!!!!

Thanks in advance for your answers!

kevin

[JNBunnie1]

Two things.

One: you're not actually gluten free yet. Things will change once you are actually gluten free, and you MAY notice once you do that an accidental glutening will be very unpleasant.

Two: In the time since I've gone gluten free, my reactions got progressivley worse, then progressively better. Meaning they are much less evere now than they were, although still remarkably unpleasant and long-lived.

[happygirl]

People's reactions vary after going gluten free, similar to how their symptoms vary before going gluten free. Lack of symptoms does not mean that damage is not being done.

Celiacs can have absolutely no symptoms, and have Celiac, or be debilitated by their symptoms, and have Celiac. Most fall somewhere along the spectrum.

Research on long term Celiac implications is not as robust as is needed. One of the reasons is the lack of diagnosis - hard to study groups of people when doctors don't recognize it - 97% of Americans who have Celiac don't know they have it.

[kbtoyssni]

  burkev said:

I've noted all the symptoms in the posts on all the topics are similar .......yet varies widely in severity.... thinking that it is in direct relation to us differing in our makeup . IE: someone recently made toast with breakfast.....stacking their toast on top of my Tapioca loaf toast...for me , no reaction, for others a crumb sends their body into a tailspin. I'm sure since I went gluten-free I've accidentally gotten cross contaminated foods....I even ate a patty melt made on grilled dark rye bread( intentionally)....no noticeable reaction .

so another question for the vets is : do the symptoms increase in severity as one ages being gluten-free or do they lessen ?? Can one expect new symptoms to appear after being gluten-free for years if you were accidentally glutened ?? Is there any RELIABLE documented medical research on celiac monitoring thru an extended period of years ??

Just because you don't feel sick when you eat some gluten, doesn't mean you're not damaging your body. If someone stacked their gluten toast on top of my gluten-free toast before I ate it, I probably wouldn't feel sick, either. But if someone did that to me everyday, by day four or five I would start to feel the same old fatigue, brain fog, joints hurting, getting colds because my immune system can't handle the overload, and I'd feel crappy for the next 3-6 weeks. I may not feel my symptoms on day one, but I know my immune system is being attacked. Maybe I'm lucky because my immune system's initial response isn't one that I can outwardly feel. Or maybe I'm unlucky because sometimes I don't always realize I'm glutening myself until it's too late. And I know that every bit of gluten I accidentally ingest is going to increase my probability of major health issues down the road - other autoimmune diseases or cancer.

I haven't read any research on whether symptoms increase, decrease or change over time after one goes gluten free. Everything I know is anecdotal evidence from this message board. Seems like it totally depends on the person. Symptoms could increase, decrease, stay the same or change after you go gluten-free. You never know.

[Green Eyes]

Let me ask this question a different way, and make sure I understand.

I have been diagnoses via biospy. I was a silent celiac before gluten free diet and now have reaction when accidentially glutened after implementing a gluten free. The question: If I don't have a reaction to a bread crumb, does that mean I am not doing any damage? Like if I accidentially get a little gluten from cross contamination and it doesn't effect me with some type of sickness, is it still doing damage?

Jennifer

[happygirl]

It means you can be doing damage. Symptoms do not equal damage.

There is research going on as to what level (threshold) of minimal gluten intake Celiacs can tolerate without damage. The answer now is that we don't know enough, and that it may vary across people, just as their symptoms vary.

[JNBunnie1]

  happygirl said:

It means you can be doing damage. Symptoms do not equal damage.

There is research going on as to what level (threshold) of minimal gluten intake Celiacs can tolerate without damage. The answer now is that we don't know enough, and that it may vary across people, just as their symptoms vary.

And also that symptoms are not an accurate barometer of damage being done.

[burkev]

Thank you all !!

The responses helped me greatly and as always it has given me more power. That is the real unspoken blessing here...this site proves that addage that knowledge is power....nobody gets thru this life without harm in some form....fortunately for us we have each other to help in the healing process

Thanks again., I deeply appreciate your help

kevin

[darlindeb25]

Ok, I found this link and it is very interesting: Open Original Shared Link

  Quote

So, scientists asked, if gluten is drifting around all the time in tiny amounts, how much is sneaking under the food-radar, and is it affecting gluten-sensitive people? Good question, huh? This review article looked at all the studies ever attempted, everywhere, to look at this question and found (brace yourself) a whole 13, and of them, three trials (where studies exposed people to things and then tested them). Given the patheticly small number, could anything useful be found from these

[noucha]

I am only 20 years old but i was diagnosed 5 years ago. Surprisingly at first sticking to the strict diet was easy and i lost about 20 kg that my body was holding onto form being a coeliac. Along the way i found out i had a thyroid problm as well and every few years have gone back for a biopsy but my vili have no healed in any way. I am finding it the worst ever now as i do stick to a gluten free diet, it is not a choice as i notice the effects severely . I read the previous entries above and none of these seem to match the way my body has developed over time. Since sticking to a gluten free diet for 5 ish years when i am hit now i am hit worse then i have ever been in my life. Everytime i seem to accidently eat gluten the effects last for longer and get worse everytime. It feels as if the longer i stay away from gluten then accidently eat it, the sicker i get.

I was wondering if there was anyone else out there who has the same reaction over time that i do as im finding it very very difficult to deal with as time goes on.