Still Issues After Going Gluten Free For 4.5 Months

[RH1089]

Hello Everyone! I am a 21 year-old college graduate who has been reading the threads on this forum since being diagnosed with celiac via blood test in January. On that same day I started a gluten free diet. Although my symptoms have improved, I am still not 100% better and I can't figure out why. I am sorry that this post is so long!

Prior to my diagnosis, I was eating crazy amounts of gluten, i.e. ramen noodles, Pizza Hut, processed foods that many college students eat without an issue. My symptoms did not arise until October 2010, which I believed was triggered by stress (I was working 3 jobs and had started my senior year!). Whenever I ate anything containing gluten I would become bloated and gassy (with a very noisy stomach!). Many times it would feel like the gas would get stuck and no matter how hard you tried to push, it would not come out. I would also either have diarrhea or would become constipated with only mucous coming out, but whether it was constipation or diarrhea I would have to go with a sense of urgency. It was somewhat disruptive for me especially when I was at work. When enough was enough, I decided to go to the gastroenterologist (sp?)and find out what was going on. That was when the doctor requested I have a blood test done (which ended up coming out positive for celiac disease).

It has now been over 4.5 months since that day (mid June will make it 5 months) and I no longer have the excessive gas, bloating, and constipation that I once had. However, I still occasionally have that feeling of trapped gas and I can't figure out what is causing it. I also am still having loose stools with mucus and many times there is undigested food (usually vegetables) in it (I am sorry if I am grossing you guys out!). Usually my stomach is quiet and not much activity goes on if I eat non-vegetable foods (including Rice Chex with regular cow's milk). However if I eat something with vegetables, like salad (or if I drink coffee!), my stomach gets a little noisy with some gas and I have loose stools. However, it seems that the bulk of the loose stools almost always occur when I wake up in the morning (Prior to diagnosis it was pretty much any time in the day including mornings). Then I pass very small amounts throughout the day, usually only once or twice which is much better than before. I have not had truly solid stool since October

Also, I have lost quite a bit of weight since going on a gluten free diet. I am a small person already (5'2") and before my diagnosis I was 105 lbs. I am now 99.5 lbs and it is noticeable! I have been drinking those Ensure Plus drinks to see if I can put any weight on. Am I doing something wrong if I am losing weight and still have some symptoms after all of this time? Should I stop drinking coffee at work (I don't drink it everyday)? I did not get a biopsy yet since I was busy with work and school, but now that I have graduated should I get it done or is it not necessary? I appreciate any responses that can help me!

[kareng]

You did check if the Ensue is gluten-free? I don't know.

[kareng]

Just saw this:

Sorry . I thought it said April 2011 but it's a year old. Will want more up to date info but it's a start.

[rosetapper23]

I'm sure that you'll receive many replies to help you with any possible cross-contamination, but please consider that it might just be too soon for you to feel 100%. It took me 18 months before I consistently had solid stools. However, what helped me get better was taking L-glutamine, which healed my gut.

[RH1089]

Thank you everyone for the responses. I was afraid I wouldn't get any because of the lengthy post, haha. In regards to the Ensure Plus, it says on the bottle that it is gluten free but contains milk and soy. When I drink it I feel okay for the most part. 18 months is a long time to heal! I had no idea it could take that long. There are so many people on here that say they get better within weeks... Is there anything I should cut out of my diet or am I doing okay with everything so far? I eat pretty much everything except gluten of course, and I try my best not to eat out at restaurants now (unless they have a gluten free menu). We also threw away everything in the house that contained gluten. Is there anything I can do to put on more weight? Should I look into getting a biopsy?

[RH1089]

I'm sure that you'll receive many replies to help you with any possible cross-contamination, but please consider that it might just be too soon for you to feel 100%. It took me 18 months before I consistently had solid stools. However, what helped me get better was taking L-glutamine, which healed my gut.

Oh, and is L-glutamine something you can buy over the counter at a health food store or somewhere like that? What is it exactly and what does it do?

[rosetapper23]

L-Glutamine is an amino acid, and it is oftentimes recommended for people who are trying to recover from celiac symptoms. Many people on this Forum have used it (according to postings that I've read). And, yes, it can be found simply over the counter at health food stores or any place that sells supplements.

As for what you've been ingesting, I'd definitely give up soy. Many of us simply can't tolerate it. I get nearly as sick from eating soy as I do gluten. Other celiacs aren't able to tolerate dairy or oats either.

[mushroom]

I would agree that the top two other food intolerances for celiacs are dairy and soy, and I would never consider eating oats

[Myou]

If you're anything like me, you might be very lactose intolerant too! Like you, I found myself still dealing with excessive bloating, grumbling, and other issues after months of being gluten-free, and it wasn't until I came across a specific post on these forums that I realized Celiac Disease has a nasty habit of inhibiting the intestine's ability to properly digest lactose...at least, until it has had a chance to recover from the gluten damage.

After restricting dairy from my diet, most of my bloating issues have gone away! And happily, the lactose intolerance isn't usually permanent, but I understand that it can take up to a year before you may be able to return to eating diary normally again.

I hope you are able to find the cause!

[RH1089]

Hmm..I never really thought about soy, interesting. I will take soy and dairy out of my diet and see if there are any improvements. I will also buy some L-glutamine and see if that helps as well. Thank you all for your help!