GlutenDude

You're probably going to get 12 different answers from 12 different people. If there is one thing I've learned over the years from this hideous disease, its that there are no "standard" answers to these types of questions. Not that they shouldn't be asked. It can be frustrating. For me...it depends on how much I've ingested. If a bit...I'm out of commission for a few days. If a lot...a few months. Let's hope for you it was just a dusting and you're back on your applefeet in a day or two.

Most Boars Head meats are gluten free (and delicious). And I just discovered The Grainless Baker which makes bread that actually tastes link bread. Or throw it on an Udi's bagel. Enjoy.

I think everybody here will have different answers. It just seems to be the nature of the disease. For me, it took my years to figure it out. If I am feeling foggy and ungodly tired, I go back two days and see where I got glutened. And yes, the amount definitely matters, as least for me. Last January, I ordered sushi with spicy mayo. Manager assured me sauce was safe (I've had it elsewhere.) AFTER my meal, she came up to me and told me she was wrong (and not only charged me for my meal, but tried charging a dollar extra for the sauce.) I was sick for six months after that. Thought it would never end.

Wow...this is really interesting. I thought it was just me. I haven't gotten sick from drinking, but man do I get buzzed so easily now.

I'm with you Lexi. If I see one more pseudo-celebrity preach a gluten free diet as a healthy lifestyle, I'm gonna lose it. Yes...it may mean more products for us on the shelves, but in the end, I think it hurts our cause.

It's a process. Give yourself time. Four months is nothing. I'm five years in and honestly I think I am finally coming to grips with everything. It's a strange disease that only people who have it can truly understand it.

Sounds like your getting some bad info. There is no cure for celiac. Period. Only treatment is no gluten. Period. Sorry but that's just the way it is.

Be careful on your servings. If I eat too much, I get blindsided by exhaustion. Otherwise, it could be that your body is working double overtime as it begins to heal so it saps the energy a bit. Hang in there.

Instead of guessing, the best approach is to find a great GI doc and get tested for celiac. This way, your not shooting in the dark. Just be sure to go back on gluten for a few weeks before getting tested.

Interesting. Yes, it really is difficult to explain to others who don't experience it. How long does your brain fog usually last? For me it's currently been over a week but at certain times it's worse than others...not sure why. A lot of people have been suggesting that it could be that I'm not getting enough fatty acids like omega 3. I'm going to try to incorporate more salmon, etc and see if it makes a difference.

It really varies, and I'm pretty sure it all depends on how much gluten I ingested. It's been five years and I still can't figure this crazy disease out.

This is a great idea for a post.

Age diagnosed- 41

Gluten free- 5 years

Recovery after two years: 50%

Recovery after five years: 80%

Does anybody ever feel perfect??

Hi Traveller. Brain fog is a big symptom for me and really hard to explain to other people, but I totally understand it. While it certainly could be something non-celiac related, my assumption is that it is not. Whenever it happens to me now, and especially if I am also really tired, it means I've been glutened somehow. I'm as careful as they get, but I can only assume some gluten sneaks in at times, whether thru cross contamination or some other innocuous way.

Welcome and I'm sorry you have to be here. If I can give one word of advice it would be "patience". It took me two years after my diagnosis to fully feel normal. And three years later, it's still a hit or miss journey. Give your insides time to heal. Be extra,extra careful with every single thing you put into your body. I know it sounds overwhelming right now, but eventually it just becomes part of your "normal" routine. Find a good support system...people who know how serious this disease is.

I know the Pharma companies are working on a drug that will hopefully allow somebody with gluten issues to eat gluten safely. I'm curious...if/when this drug comes out, would you get it? Personally, I can't see myself ever eating gluten again (been five years), even with a pill. Too much history...too much pain associated with it. Your thoughts?

I got diagnosed five years ago, where the doctor said my numbers were the highest he's ever seen. I want strict gluten free from day one and haven't cheated once. Wish I could say I feel great, but the truth is I rarely do. It took my a good two years to start feeling better and even still I have more bad days than good. It's very discouraging.

One of the things I am very sensitive to is eating too much at one sitting. It absolutely kills my stomach for hours.

Now giving up soy and milk. We'll see...

I got diagnosed five years ago and think I finally have it figured out. If I'm feeling exhausted, fuzzy, bloated, etc., I go back two days to see what I could have possibly eaten that got me. If it's just a little bit of CC, then I'm sick for a few days or so. But if it turns out to be a lot, then I'm in bad shape for months. Isn't celiac fun??

People will do anything for a buck and leading the way is taking advantage of someone's susceptibility. We want to be cured, so therefore there must be a cure out there if we just look hard enough. Sorry...ain't gonna happen.

We must have different diseases. I have celiac disease. If I eat 5 munchkins, I am out of commission for months and am doing severe damage to my body. Heck, if I eat one munchkin, I'm in serious trouble. What is possibly worth that?

Tell your friends to stick it. I've seen that look too when I don't feel well for the tenth straight day and when I order so specifically when we eat out. Honestly, all you can do is control yourself...not others. I would take a few weeks and eat nothing but natural food...nothing processed. Give your insides some time to heal. Keep us posted.

- When my doctor told me my numbers were the highest he's ever seen.

- When he said my intestines were totally flatlined.

- When it took me two years of going gluten free to start feeling decent again.

- When, five years later, I still have many more bad days than good days.

- When almost ALL foods give me a stomach ache.

Fatigue is my number one symptom. And when I say fatique, I mean can't focus, can't stay awake, absolutely drained of every ounce of energy in my body. But I do believe it only happens when I've been glutened. If I am fatiqued for a day or so, I figure somehow a crumb got into my food. But if I am glutened badly, my exhaustion lasts for months.

And keep enjoying the coffee. There is so much we celiacs need to go without, let's not give up things that aren't bad for us and that we truly enjoy.

I made the mistake after my diagnosis of buying a lot of gluten free processed foods, because it was easy and I was so overwhelmed. I ended up gaining about 10 pounds the first year. It was only when I thought "healthy" instead of "gluten free" (and of course consistent exercise) that the weight started coming off. I've been gluten free five years now, I'm 46 and feel in the best shape of my life. Celiac does have its assets

A few thoughts...

- It took my almost two full years to begin to feel better so going off gluten short term might not give you the answers you are looking for. I would hit another doctor who specializes in Celiac if you can find one.

- I would not go off dairy and gluten at the same time. Eventually I would because most celiacs I've met also have dairy issues. I'm dairy and soy free as well (and still don't feel great...argh!!). But if you go off both at the same time and you feel better, you won't know which one is causing the issues.

- Based on your symptoms (explosive diarrhea, etc), I do wonder if you have something else going on inside.

I wish you the best and hope you find health and happiness.

The Gluten Dude

So frustrating I know. Hang in there...it does get easier and it eventually becomes a part of who you are.

I think ahseya nailed it. Don't try to replace all of the foods you loved with the gluten free equivalent, because it will just lead you down the road to disappointment. A lot of foods taste/feel the way they do because of the gluten. Without that, the results sometimes are not pretty.

Find new things to eat that you haven't tried before. Eat naked. Not literally of course (up to you) but just fresh meats, fish and veggies, with a bit of olive oil. The things I used to eat I can't even imagine eating now.

Life gets better...I promise.

Looking for Orange County California Celiacs to exchange with. I live in Anaheim (North County) but would love to hear from South County folks too.

Wendy

I'm on the east coast, but I do know of one Celiac resource for Orange County. Here is their facebook page: Open Original Shared Link

I promise you it's not my business so I cannot vouch for it...only know that it exists.