Am I Destined For Even More Problems?

[jasonD2]

I was diagnosed with mild leaky gut a year ago and have been gluten-free since and cut out other foods that I tested allergic to. Thing is i was only tested for 100 foods and am sure im probly allergic to stuff im eating on a routine basis & maybe even developed new allergies to stuff I tested negative for. anyway, i realize its impossible to eliminate everything & im not prepared to go on a diet of rice and carrots for the rest of my life. But the fact of the matter is Im very nervous about this condition and have been reading articles on how leaky gut will almost always lead to some kind of autoimmune disease. so if i keep eating foods that i have sensitivity to will i go on to develop lupus or some other dreadful disease later in life? are there people that live long lives with food allergies/leaky gut or will most of them develop a disease? id appreciate feedback

thanks

Jason

[jasonD2]

seriously how bout some of that feedback?

[spunky]

It's possible that if you stay 100% gluten free (maybe 100% dairy free too, or at least for the first year or two), you might find your leaky gut and allergy symptoms gradually resolving over time... lots of time... you might have to avoid lots of different foods at first, but for some people, if celiac / gluten was the big problem, they eventually get to the point that they CAN once again eat at least some of those foods again.

Besides rice and carrots, are there any foods you KNOW you can safely eat?

[lizard00]

I believe that if you were to give your diet due dilligence, meaning, being careful when eating out, etc. you may find that some of your allergies or intolerances clear up. That is in reference to the other posts you've made about eating out and not being as careful as you know you should be.

If you have celiac, which you probably do since you have the genes and you do better on a gluten-free diet, then you need to be dilligent about keeping gluten out of your diet. Let's say you eat out once a week with your clients, and only once a week you eat something you shouldn't. About the time your immune system is recovering from the last time, it begins agains. So no real healing can occur.

[jasonD2]

Well I only have one celiac gene and the only test i had was a stool antigliadin, which was slightly elevated. I had the blood test in 02 and it was negative...so i dont think its accurate to say I have celiac. Bottom line no matter how careful i am when i eat out (or anyone for that matter) there is always gonna be some gluten somewhere...it just cant be controlled. just like no matter how clean you work area is there is always gonna be some bacteria.

[spunky]

Is eating out something you have to do for work, etc.?

Sometimes when I have to go to a restaurant with others, I eat in advance and then just have a cup of coffee at the place with the others... this might seem extreme, but there aren't many restaurants that I know of around here that I would trust...plus, once I tried going gluten lite, back in 2001, and I did NOT get ANY better at all. I eventually gave up and figured gluten was not really my problem, since I "mostly" didn't eat it and still had big problems. Later, I'd done more reading and searching (because I was so messed up and couldn't find a way to get any better), and ran across this board, lurked for a couple of years, and discovered that it is well known among celiacs that small amounts of gluten will keep a person sick. I decided to bite the bullet again, this time giving it all I had, which meant hardly ever trusting a restaurant or anybody cooking my food for me, printing off lists from the net and being extremely selective in my shopping, etc. Seems like a lot of trouble and sacrifice, but it paid off bigtime... the folks on this board were absolutely right, in my experience, and now I love feeling good so much I just don't feel like taking any chances with getting back to how miserable I was before... so, 99% of the time, if I have to meet others in a restaurant, I'll just have coffee. Once in a while I'll go for salad bar ingredients, if they look safe to me...I can hand-pick the safe-looking ingredients at my own disgression.

It might seem like a hassle, but it was worth it to me. Feeling healthy has definitely been worth all the trouble, for me.

[jasonD2]

just out of curiosity what are your symptoms when you eat gluten - even small amounts?

[lizard00]

Well I only have one celiac gene and the only test i had was a stool antigliadin, which was slightly elevated. I had the blood test in 02 and it was negative...so i dont think its accurate to say I have celiac. Bottom line no matter how careful i am when i eat out (or anyone for that matter) there is always gonna be some gluten somewhere...it just cant be controlled. just like no matter how clean you work area is there is always gonna be some bacteria.

I have been in your shoes. My bloodwork was all negative too. And having just one copy of the gene doesn't mean that you can't possibly have Celiac, so it's not completely accurate to say you don't have it either. My doctor truly believes I have celiac, as do I.

A few weeks ago, I got a salad from a restaurant next door. I've eaten this salad many times, been fine. This time, I got sick for three days. It's a risk, and I try not to take it very often.

What I figure is that someone either had dirty gloves on, or someone transported some bread across my salad, I don't really know. What I do know is that my GI tract felt like it was in flames, my head was pounding and I was naseaus for 24 hours. After the headache and the nausea wore off, my gut was still on fire for two more days. Everything I ate made me feel like crap. That was a miniscule amount of gluten.

That was the point I was trying to make.

[jasonD2]

Thats rough sorry to hear. Fortunately or unfortunately I don't get sick like that if I eat gluten. I was eating gluten lite for a few months on and off and never had problems...so thats why its easier for me to stray from a strict diet. Thats why I almost wish i had a completely accurate diagnosis, but I dont want to do the challenge for 3 months & certainly dont want a tube shoved down my throat, which is why im trying real hard to stay 100% gluten-free. for me its a daily dilemna and not having the classic celiac symptoms makes it easier for me to stray since I often say to myself oh im probly just gluten intolerant and a little here and there is ok, then i can switch and be like oh s hit what if i do have celiacs..I shouldnt be eating this food. You probably have it easier than me cause at least you kinda know

[lizard00]

Since I've been "formally" diagnosed, I have not even thought about cheating. Part of it is psychological, I understand your dilemma. Something about eliminating that last shred of doubt makes it easier to deal with.

Have you ever gone 100% gluten-free? Maybe you could do it for like 3 months or something. The way it seems to me is that you are going to have to prove this to yourself one way or the other. So you can either: 1)commit totally to being gluten-free for a specified amount of time, and see if there's any improvement. or 2) you can do a gluten challenge that won't last as long as 3 months, but would still give you some evidence. Maybe for a week or two. But everyday, equivalent of 3-4 slices a day.

Don't give up trying to find the answer. Maybe gluten isn't the problem. But you've got to figure out a way to know for sure, or you're going to feel perpetually stuck.

[spunky]

I don't blame you for wanting to avoid having that tube down your throat.

I was never diagnosed, so I have no idea what doctors would have told me... I have feared doctors after a lifetime of horrid MISDIAGNOSES and wrong treatment my entire life... I just don't trust them. I had strange symptoms for 12 years, tried this and that, while the symptoms got worse and worse. Finally ended up vegan, hoping that would solve things, but I only got worse. I went through all sorts of denial, jumped through hoops to keep my family, especially husband, from becoming aware of how sick I was getting to be, every single day of my life... and ended up thinking I must be dying of something.

I tried gluten free in 2001, but really it was just gluten lite... I didn't have enough info to know how to really go about doing it. Nothing changed... I just stayed sick all the time. Mostly intestinal stuff, top to bottom of my intestinal tract, but also insomnia and I didn't know I was depressed, but 7 months after 100% gluten free I realized I used to be depressed too. Just feel better all around, but especially the intestinal stuff.

Eventually I got more info, tried gluten free 100% back in Feb. of 2006... saw my symptoms shift and jump around and act crazy for about six months, which indicated to me something was changing rapidly... by 7 months into it, I was starting to actually have GOOD days, for the first time in over a decade. Although there were more roller coaster days ahead... it's gradually gotten better and better. Now I actually feel good... really good... I have a good stomach. I can go places and do things, take trips, etc., I'm not terrified or secretive about what my stomach will do. But I am paranoid and careful about the gluten intake.

I've only had gluten about two times in the past 2 1/2 years... and it upset me again for 4 weeks both times.

I've also had other on and off food problems... which I did not have before dropping the gluten. Some of them seem to be resolving... like I can now eat eggs, if I don't eat too many in one week, etc.

I don't have a diagnosis either, and wouldn't be interested in the barbaric ways doctors diagnose stuff, plus the seemingly lack of their ability to be accurate. So... I sure understand where you're coming from.

If you're avoiding that tube down the throat, a gluten free trial might be the only alternative... for me, my symptoms went topsy turvy within a couple of weeks totally off the gluten... which was so different I knew things were being affected, although I did have to wait a long time after that to feel well.

[sbj]

Hey Jason:

It sounds as if you are getting yourself all worked up over what might happen. And you are imagining only the worst - "I might get some other auto-immune disorder. I might die young. I might [insert bad thing here]."

I think this is called negative self-talk and it does you no good whatsoever.

Why not imagine some other things that might happen. "I might stick with this diet and cure my leaky gut. I might live to be 100 with grandchildren and great grandchildren. I might set the land speed record."

You've found out that you have a condition that puts you at an elevated risk for some other nasty stuff. So the thing to do is take your doctor's advice, live gluten-free, exercise, eat right, watch for symptoms, educate yourself ... and live life to its fullest!

Put it this way - I personally have a genetic condition which means there is a 90% chance that I will get cancer. So what do I do? I go to the doctor regularly and get annual endoscopy/colonoscopy, I eat right, I exercise, I watch for symptoms, I get my bloodwork done. In other words, I prepare myself but otherwise I behave like any other person.

Life is full of risks. I think a leaky gut is an issue that you can manage. I know that you are up to the challenge. It puts you at risk, yes, but look at it this way: It's also very risky to get in your car and drive to work. It's risky to fall in love. It's risky to open yourself up emotionally.

Life is all about risks; without risk there is no reward. Without defeats our victories would be empty things. Play the hand that you've been dealt as best you can - there's pride to take in that and you might win yet! Stop playing the what if game and start living instead.

[sbj]

BTW, Jason. IMO, the tube down the throat is no big deal at all. They don't just look for celiac diease signs, either:

"The endoscopy not only allows examination and biopsy of the duodenum but also a look at the esophagus and stomach. Sad fact of the ageing process is that you start to collect diseases like trading cards, and just because you're celiac doesnt mean you can't have something else. It's important to have a good look for bleeding lesions in the upper gut even if the blood work for a seventy year old with anemia says celiac (and check out the colon too, but that's a topic for another day)."

https://www.celiac.com/articles/978/1/So-Wh...FACG/Page1.html

[photobabe42]

Upper endoscopy is about as easy as tests get. You fast for eight hours and then get some awesome "twilight sleep" drugs which means you are technically awake but you won't remember a thing. The test is very quick and there is maybe an hour or two of waking up depending on your body weight and blood pressure. I was freaked the first time I did one because I have a major choking phobia. Let me tell you, it was a breeze. Or if it's easier, just be serious about your diet. But the test ain't so bad.