Gluten Free, Felt Amazing First Two Weeks Now Not So Much?

[nik95670]

I have been completely gluten free for a little over two weeks now & it has been the best thing that's ever happene to me. All of my nightmarish symptoms have dissipated & ive said I feels as if ie been given a whole new body to live in. I'm starting to feel discouraged as I head into the third week however. I have had a stomach ache for the last two days that feels like the kind I used to get. I can't think of any way I could have gotten glutened. I have been eating simple whole foods. Is it normal to fall backward a little in recovery? Or do I maybe have the wrong diagnosis? I have been sick for twenty years and I was so relieved to finally have an answer. The discouragement I'm feeling tonight is indescribable.

[mamabear272]

I'm right with you. I got my official diagnosis June 7 of this year and immediately went gluten-free. I felt amazing until this weekend. I was out of town and thought I got glutened. I'm wondering now though. I've read a lot of veterans say that it can take weeks, even months to really get better.

I felt 10 ft tall and bullet proof at first. Now I'm laying in bed with a heating pad, tea, gluten-free toast, applesauce, vicodin and Ativan. I plan to spend the day here too! Luckily, I have teenage kids to take care of my 6 year old.

I would love also to hear from some of the vets out here. Any advice for us "babies?"

[RL2011]

I too am new to being gluten-free (as of May 2011). In addition to eating whole foods, I have found that I have to force myself to drink plenty of water (50+ oz in addition to other liquids) and take vitamins.

For the first 3 weeks after going gluten-free I felt like crap. For the past 2 weeks it has been more mental than physical. I am trying to get myself back into an exercise routine and find that when I am active I feel better.

I am not a veteran with this but I do know that the mental aspects resulting from changing nutirents in the body along with depression must be overcome. Wake up every day telling yourself I will feel better today, damn it. Keep doing that for 30 days regardless of minor setbacks and it will start to becomea self fulfilling prophecy.

I wish you the best of luck!

[nik95670]

I appreciate the advice on the mental aspect... It sure does feel like a roller coaster. Ome minute I feel like Superman and like ice veen given a new chance at life, the next I feel totally overwhelmed and hopeless. I've started to have anxiety attacks which is not fun. I think the exercise thing is important, I haven't been active enough at all the past few months.

[MsCurious]

Hey nik,

Welcome to the boards and the gluten free life! I was just popping in to catch up with things and happened to read your post. It took me from January to April to get all the testing done and finally go gluten free, and it has been AMAZING to feel so great again. However... having said that, I too have had the roller coaster of fabulous week or so ...with a set-back ...then great again for a couple of weeks, then a minor set-back, etc. I diligently read labels, and keep my cell phone handy while shopping so I can "pester" the people who don't label sufficiently, so I cant get the info I need to stay safe. Still, doing all those things hasn't been enough sometimes, so I decided to keep a food journal... prompted by so many people here having multiple food intolerances along with gluten. I knew starting out that I had gluten and lactose/casein intolerances... but have since found that fructose is a problem for me as well. Perhaps something like this might be a problem for you?

I've had allergy testing and am allergic to many fruits and shellfish... so along with dairy and gluten, I have quite a challenging diet, but its quite doable when I know how good it makes me feel. Tonight I made my husband Fettucini Alfredo... all of it essentially poison to me, and I was quite happy eating my gluten-free food, even though it wasn't the same thing he was enjoying. I knew I'd still feel great the next day. Perhaps, you could try a food journal and see if you find anything that continues to show up when you "have issues". I am doing an elimination diet, eating only foods I KNOW I can tolerate and then adding something "suspect" every 4th day if I'm still fine. That is working wonderfully, as now I know specifically what foods I can't eat with out adverse reactions, and I have a good solid list of "safe" foods to fall back on. Hope this helps give you some ideas, and continued hope! You will get better! Hang in there, and be persistent and positive! Good luck to you...and Mamabear too!

[chartrandacres]

I am brand spanking new to this! My doctor told me I was Celiac, my test results stated such. Have to get the bowel biopsy done yet. Not convinced that is all there is wrong with me. I am also lactose interlorant by self diagnosis. It is now 7:14pm and today I've had nothing to eat except a gluten free coconut bar at 1:00pm. However at 8:00am this moring (11 hrs ago) I had a pkg of those 6 mini white donuts. I know that was very very wrong but at the time I had no other choices and was hungry. Thought the pain, burning in my stomach, and indigestion would be gone by now but isn't. Later today I bought gluten free groceries for the first time at "Nutters". Don't want to put anything in my stomach right now because I hurt so much but I know I have to eat. Is the burning/indigestion and pain only because of Celiac or could there also be an ulcer or other problem existing? I am going to ask the specialist for more testing when I see him. I've had 2 ultrasounds, 2 scopes, 2 sets of blood tests(only for ovarian & stomach cancer, hormone levels, thyroid, celiac, but not for colitis). No ulcer tests. Your thoughts are welcomed!

[nik95670]

Welcome chartandacres I'm sorry you are feeling miserable, we all can sympathize unfortunately. First of all, an important thing to know about celiac is that it can mimic ulcer pain! It's one of the most debilitating problems ie had with mine, living on ulcer meds for years. Be careful of caffeine, cigarettes, chocolate and anything to acidic (oranges, tomatoes, etc.) if you take antacid make sure they are gluten free. I learned the difficult way that gluten free products are kind of the worst way to start your celiac diet. When you are first cleaning your system so to speak you should rely on "whole" foods meaning not packaged or processed. There are many incredible gluten free options out there but they aren't the easiest to digest right at first. You want to stick to plain meats, rice, bananas, potatoes, fruits and veggies at first. I waited three weeks to start adding gluten free goodies and even then don't make those the majority of your diet. Processes foods are difficult to digest but it IS nice to have some options out there so we don't feel totally left out. Having your stomach be completely empty is detrimental to it- it produce acid to move through food and if there's no food therebit will make that ulcer feeling worse. Try a banana or some rice or some rice crackers. Those are easy to digest & settling. It WILL get better and i can attest that followin the diet will make that ulcer feeling go away. It just takes time.

[Pink Angel]

I had a similar experience. I've only been gluten free for 12 days. My fatigue was the first thing to improve, and that happened after 2 days. I've suffered from severe constipation (to the point that I had to have a hemicolectomy following a blockage that caused necrosis). I've not been able to go without an enema for months. 5 days after starting gluten-free, I started to be able to go...and go...and go! Anyhow, I went to PF Chang's two nights ago and woke up yesterday with debilitating fatigue again. I couldn't figure out what would have caused that and started wondering if my problem wasn't gluten...until I realized I'd used soy sauce at PF Chang's (apparently you can request gluten-free soy sauce, but I didnot) I didn't realize soy sauce has gluten. I'm wondering if that did it. I'm already feeling better today, but not as good as I was.

[nik95670]

I think maybe that's the hardest part- getting your mind used to questioning anything and EVERYTHING that goes into your mouth. It not even that we assume, it's that we were never trained to have to question it in out lives before. I popped a piece of complimentary candy in my mouth at a store the other day and it never even crosses my mind that I did that until 3 hours later!!! I was so disappointed in myself & scared that I could do that again.