I ate Gluten, so what now ?

[johnojohno]

Morning all. 

So I’ve been Celiac for 5 months. Complex diagnosis where I was told I had it, then I didn’t then I had it. 

We all know it’s a disaster to get diagnosed and pretty shocking in relation to knowledge on it 

So I felt ill, got annoyed. And had a burger from McDonald’s. Felt fine the next day. No sign of being  glutened if that’s the word. 

It’s this part which is very hard to understand in post gluten eating and feeling nothing..... You hear people say things like. You basically take months of recovery off....... with zero evidence. My blood tests technically say I’m now not celiac. (Which obviously as we know just is the result of a gluten free diet). I just feel like it’s the same with anything. It may not be good for you. But 2 step back and 2 forwards? Understandably everyone’s different. It’s just infuriating to me when I see people say things like you basically have to start again! This just makes no sense. Listening to your body is key (understandably that’s how most of us got here) the variance in the opinions is so vast. 

 

From eating gluten I haven’t just turned an on switch on to destroy my stomach. 

 

Apologies, this is turned into a little bit of a rant. I understand I am not going to eat it. But I don’t see how having a bit every few months after healing can cause that much damage? 

[Jmg]

Hi Johno,

Sadly one of the features of our hard pressed medical service is that few specialists have any time to spend once diagnosis is complete. You get a brief 'don't eat gluten' and maybe a trip to a dietician if you are lucky. so it's not uncommon for celiacs to have no idea what is happening in their body when they ingest gluten. You are not alone!

i posted some links in my previous replies to you, did you read them?  I can list you some 'hard science' if you prefer, peer reviews studies of mortality rates amongst celiacs who don't follow a strict gluten-free diet etc. It may take a little time to dredge up so give me an idea of what kind of and what level of info is going to help.

for now, try to understand that it's not the quantity that you ingest that's the issue, it's how your body then reacts. It's not gluten that's going to damage you, it's your own body, and it's not just going to happen in your stomach, it could be on your skin, in your nervous system, in your brain, pretty much anywhere due to the way this works. The way it affects you can also change as you progress on the diet. This time your stomach. Next time problems with your vision or your thyroid. Etc.

i know there are sites out there which play up the dangers of food and exaggerate dangers with unsupported claims. You won't get that here, no one is trying to sell you anything. You have a serious condition and you need to understand it properly before you can take an informed choice, which could be eating that McDonald's if you wish to. 

One final point, consider that one of the stages of grief is denial and try to be as honest with yourself as you can on that score. The emotional side of this is far more wide reaching than many imagine.

Cheers,

matt

[Jmg]

3 hours ago, johnojohno said:

You basically take months of recovery off....... with zero evidence. My blood tests technically say I’m now not celiac. (Which obviously as we know

No, your blood may say there are currently no antibodies, but that isn't celiac, that's just an indicator of celiac induced response.  Celiac is the orientation of your immune system to see gluten as a threat. That hasn't changed and it won't do. This is, at least at present, a lifelong condition. 

There's a couple of good book recommendations in the newbie thread I linked to the other day, consider getting one, better you get a fuller picture from an expert than random people on the web giving their opinion.

A better understanding of the condition will really help you.

[Ennis-TX]

Brief summary in simpler terms, your immune system thinks the gluten protein is like germ, something to destroy. Your immune system goes a bit berserk essentially when it sees the tiniest amount of that protein in your body....like ape s$#& tantrum style lets destroy the whole bloody house. In the confusion it will normally attack your intestines trying ot destroy the gluten, different people it attacks different areas, some people feel it some do not. Point is you body does this for WEEKS after seeing the tiniest amount, no way to stop this is just rampages til it is damn sure all the gluten is gone and does this long after the offending protein is gone, some this can be months of doing damage. For me it also attacks my nervous system and brain.....yeah that has done some brain damage that can not heal in my lifetime completely.

Point is one tiny cheat means your body will take cumulative damage for weeks, where it damages and attacks determines your healing time and how many "steps back" you take nerve damage...takes decades to heal, Most peoples guts can take months to years to heal depending on how fast their body can repair the damage and if they stay gluten free.

 

[Jmg]

3 hours ago, johnojohno said:

You basically take months of recovery off....... with zero evidence. My blood tests technically say I’m now not celiac. (Which obviously as we know just is the result of a gluten free diet). I just feel like it’s the same with anything. It may not be good for you. But 2 step back and 2 forwards? Understandably everyone’s different. It’s just infuriating to me when I see people say things like you basically have to start again! This just makes no sense. Listening to your body is key (understandably that’s how most of us got here) the variance in the opinions is so vast. 

Sorry for a third go at this but I had a think about it. There's a point I should've made earlier. 

This is a site where most people come when they're not doing well, either pre or post diagnosis. So the readership here self selects for people that are having a problem. 

Now a lot of people get their celiac diagnosis, go through a period of readjustment and then crack on with their lives. They may get an upset stomach or similar once in a while if they slip up on the diet but they move on and all is well. They don't continue to post here, why should they?

Some however find their bodies non responsive to the diet (refractory celiac) or diagnosis difficult or contradictory (NCGS). They find their responses to gluten change over time and come more extreme. That's when they come here. So if you're reading the case studies here, you are possibly getting an overly pessimistic view of life as a celiac. 

There's a lot of variation in how gluten impacts on individual celiacs. The level of damage, the bodily systems affected etc. It may be your lucky, your symptoms are mild. That's good, but its not a sign that you can pick and choose when to follow the diet. There can be Open Original Shared Linkthat go beyond an iffy stomach and some of this can happen silently.

Also, the book i was thinking of was 

Real Life with Celiac Disease

 

Melinda Dennis,

 

[at1992]

Hi johno,

Concerning your "not feeling anything" the next day after eating gluten - it can take days to weeks to months for your body to react to gluten, depending on how quickly your immune system works. For me personally, I don't experience the flare of symptoms until about 5-10 days after eating gluten. Then it'll hit me like a train. And the symptoms can last anywhere from weeks to months. I do think eating gluten just once sets me back months in terms of recovery. A little bit of gluten will go a LONG way in terms of immune system activation. But, every body is different