How Can You Say That You Have To Be Off Gluten For Months........

[Electra]

If Celiac affects everyone differently then how come so many of you can say that you have to be Gluten-Free for months before feeling the affects? Isn't it possible that some of us are so glutened that even eliminating gluten for a day will make a huge difference? Isn't it also possible that some of us can eat gluten and a few hours later feel the affects of it when others may not be able to do that? It just seems so confusing. Those of you who know this disease well, seem to lean towards being gluten free for a certain period of time before you will feel the results, so I'm wondering if that means I don't have Celiac at all.

I'm just wondering because I keep hearing people say over and over that you have to be truely gluten free for at least a month to really know if you have a problem with gluten, but there are several of us on this board who tend to notice immediately or within hours if we have had something with too much gluten in it, so is it possible that our bodies just react in that fashion where others bodies may not?

It just makes me wonder if you truely have to be gluten free for that long then do the rest of us not have Celiac? Those of us who can feel immediate results seem to also be the ones that test negative for Celiac, so do we truely have Celiac or is it something else? Hmmmmmmmmmm what do you guys think?

[StrongerToday]

Some people do notice a difference right away. Personally, I was about 2 - 3 weeks into it when I realized I was singing on my way to work. I literally thought "oh, this is what it feels like to WANT to go to work, not dragging my half dead self in every day".

but each day is still better and better for me. I would say it was a good 9 months or more before I really felt like my old self on a regular basis.

[Electra]

Oh ok so that's the kind of results you mean lol. I was thinking physical as in pains, aches, rashes etc, but I wasn't thinking about it as far as feeling energetic. It all makes way more sense to me now. I definitely can understand how it would take a while for your energy and upbeat feelings to come back. I have not felt the kind of "happy or peace" that you described in years. I attribute that to my sleep disorder, but I'm beginning to think my sleep disorder is caused by Celiac, and if I went Gluten Free I'm wondering if I could eventually go off from my sleep disorder meds!!

WOW when I think about it the way you described it, I really GET IT NOW!!

[Guhlia]

It takes everyone a different amount of time. For me it only took hours off of gluten for the GI problems to resolve themselves and only about a week until I felt great. However, it took over a year for me to feel "normal" again. Each person has a different story. There's no specified amount of time.

[celiacgirls]

I felt the difference within 2 days. I didn't even have celiac symptoms before other than anxiety and depression. I have never been tested for celiac but have done the Enterolab testing so I know I'm at least gluten intolerant and I have one celiac gene (DQ8) and the gluten intolerant gene (DQ1) associated with neurological problems from gluten.

It doesn't make any difference to me if I have celiac, or something else, or if I would eventually develop celiac because I feel so much better without gluten. Even if I knew I could eat it without causing damage, I don't want to. Gluten was causing me problems whether it was celiac or not.

I think some people probably need longer to see the effects depending on how much damage has been done from gluten. Another reason to try it for a longer period of time is that it is hard to be 100% gluten free in the beginning when you are just figuring out how to do it. Now, when I am glutened, it takes only a trace and it lasts for several weeks. If I had been that way in the beginning, I wouldn't have noticed such a change.

[ravenwoodglass]

I saw a resolution of GI symptoms very quickly, within a week not only did I not have the daily D that I had lived with for years but my tummy stopped it's constant growling also. I was content just with that and did not expect other things to improve also. But they did. It took a while to realize that my other seemingly unrelated problems were due to gluten, I didn't have this board as a resource then and did not know any other diagnosed celiacs. The time it takes to heal and really feel like a 'normal' person (and some of us who got sick young never even knew what that was) varies a great deal. Many of us also have different systems that were more severely effected than others. For me the most destruction was to my joints (arthritis and resulting joint damage but now totally in remission) and brain. I am over 4 years post diagnosis and even this summer realized that my energy and neuro problems were better than ever.

[sunshinen]

Oh ok so that's the kind of results you mean lol. I was thinking physical as in pains, aches, rashes etc, but I wasn't thinking about it as far as feeling energetic. It all makes way more sense to me now. I definitely can understand how it would take a while for your energy and upbeat feelings to come back. I have not felt the kind of "happy or peace" that you described in years. I attribute that to my sleep disorder, but I'm beginning to think my sleep disorder is caused by Celiac, and if I went Gluten Free I'm wondering if I could eventually go off from my sleep disorder meds!!

WOW when I think about it the way you described it, I really GET IT NOW!!

Yeah, it really is amazing. I was off gluten three days when the daily migraines I'd been having stopped. That was my main goal and desire. Everything else has been such a wonderful bonus. But I, too, remember that feeling, a few months into going gluten free, where I felt happy again. It is truly amazing just how life changing this diagnosis/diet can be!

But for others in my family, the initial feeling better didn't even come until they had been on the diet a few weeks. So yes, it is different for everyone.

[Guest cassidy]

I think the reason most people stress that you may need to be gluten-free for a while is not for the people who feel immediately better, but for those who don't. Those people who aren't sure but are trying the diet and they try it for a few days and don't feel any different and decide that they don't have a problem with gluten.

Also, some people gluten themselves alot in the beginning and may not feel better for a while because they aren't truely gluten-free in the beginning. They may give up and think that the diet isn't helping when really they are just still learning.

I think people just want to make sure newbies are giving the diet enough time to see if it does work for them and not getting discouraged if it takes more than a few days to feel better.

[Nancym]

My IBS cleared up the first week. Later on other things started to resolve, like the brain fog and neuropathy. In all, it took about a year to feel really good again. But I was pretty convinced just from the IBS going away that I had nailed it.

[ravenwoodglass]

Also, some people gluten themselves alot in the beginning and may not feel better for a while because they aren't truely gluten-free in the beginning. They may give up and think that the diet isn't helping when really they are just still learning.

I think people just want to make sure newbies are giving the diet enough time to see if it does work for them and not getting discouraged if it takes more than a few days to feel better.

I think this is a very, very important point. It took me a while to realize that I need gluten-free toiletries also, and even longer to realize that some of my hobbies were also causing problems. I also had a hard time accepting that many gluten-free mainstream foods were off limits because of CC. I suffered mystery glutenings off and on for a long time till I realized in a duh moment that I had just opened a can of pet food (not gluten-free) and then opened a can of tomatoes for my chili. There are a lot of things to get used to but for a lot of us eventually when we have been gluten-free for a while it gets easier to figure things out and the glutenings by mistake will be fewer and farther between.

[Guest nini]

everyone is different. you may or may not notice improvements right away, I tell people to give it time becaue of several factors, the biggest one being the steep learning curve of learning what all has gluten in it and truly getting it all out of your system. Some people do notice improvements right away, I did notice improvements, BUT, I also had terrible withdrawal symptoms AND it was a good six months before I could tolerate dairy, then it was another 2 years before I really felt a lot better, I mean it was a slow but steady process of getting better. All I'm trying to say is that while some people do notice dramatic improvements right away, just as many do not, and have just about given up until all of a sudden they realize when they've hit 6 months or 1 year or even 2 years that OMG "I'm feeling so much better". If you can stick with it and give it a good faith effort, you will be able to find out if it is your problem. In the meantime you can continue pursuing other avenues of testing (not for celiac since you'd have to be eating gluten) to rule out other health concerns. Many of us have multiple autoimmune disorders besides Celiac, and it takes a combination of the gluten-free diet and medication to help us feel better, others have multiple food intolerances and have to avoid numerous things besides gluten. It's all individual and you have to be your own detective to figure out if it's right for you.

Just don't give up on it too quickly if it's not showing immediate results. I would say minimum 6 months before saying this doesn't work. And make sure you are 100% gluten-free during that time.