Symptoms Persist Even After A Gluten-free Diet

[Waldz1]

Hi. I'm 28 and was diagnosed with Celiacs about 10 months ago (blood-work, biopsy, the whole nine). It's been pretty fantastic as far as the stomach pain disappearing for the most part. I haven't (purposely) eaten any kind of gluten since getting diagnosed. But here's my problem:

I've been getting diarrhea more than I used to. I feel healthy otherwise. I've gained about 14 pounds and look very normal (I used to be freakishly skinny).

I am eating gluten-free foods. All the time. Why am I still having reactions? How do I know what meal it was that triggered it?

It's making me paranoid, to be honest. I am CONSTANTLY thinking about where a bathroom is, I get nervous when I have to ride the subway (I live in NYC) and I get anxious about long car rides. Or even when I go to the movies. This is ridiculous, I know, but I haven't had a "normal" bowel movement in weeks. It's not always diarrhea, but it isn't normal.... to spare you all the details.

Arrgh.

[laurelfla]

First, I want to say that I am sorry you are going through this, it must be very stressful!

Second, I would say definitely keep a food diary. Write down everything you ingest and all bathroom activity. Some kind of pattern might emerge.

My stomach acts up when I am nervous or stressed... maybe that might be a factor? I don't know, just wanted to offer some support.

[wschmucks]

Hi. I'm 28 and was diagnosed with Celiacs about 10 months ago (blood-work, biopsy, the whole nine). It's been pretty fantastic as far as the stomach pain disappearing for the most part. I haven't (purposely) eaten any kind of gluten since getting diagnosed. But here's my problem:

I've been getting diarrhea more than I used to. I feel healthy otherwise. I've gained about 14 pounds and look very normal (I used to be freakishly skinny).

I am eating gluten-free foods. All the time. Why am I still having reactions? How do I know what meal it was that triggered it?

It's making me paranoid, to be honest. I am CONSTANTLY thinking about where a bathroom is, I get nervous when I have to ride the subway (I live in NYC) and I get anxious about long car rides. Or even when I go to the movies. This is ridiculous, I know, but I haven't had a "normal" bowel movement in weeks. It's not always diarrhea, but it isn't normal.... to spare you all the details.

Arrgh.

[dilettantesteph]

At first when I gave up gluten I got immediate relief from everything. Then as time went on I became more sensitive and had to eliminate more and more gluten sources. Believe me, there are tons that you haven't thought of yet. That took about 6 months. After about a year things are so much better and when I do get a reaction it is much more mild than before. Check for gluten free things that are made in a facility that also processes wheat. Someone on this site said that he hasn't found a vinegar containing salad dressing that is gluten free (I think he uses test strips). I know I have given up on salad dressing completely so that might be for the same reason. I would eliminate everything questionable until you aren't having any reaction and then add things one at a time to check for reactions.

[ThatlldoGyp]

I would keep a food and symptom diary. Are you lactose free still or just added dairy back in your diet? Any new foods at all?

If no pattern emerges from your food diary, then please give your GI a call. It may be something totally unrelated to your celiac. Colitis came to mind instantly.

Hope you feel better soon, and remember, Imodium is your friend! (Gluten and lactose free too!)

[mftnchn]

Good advice here. I wonder if you have tried eliminating milk yet?

The only other thought I have is that for some reason healing might be delayed, or that you have an imbalance of bacteria in your intestine or both.

For me, after 15 months of gluten-free, 10 months of CF, and 12 months of SF, I finally found much more relief on the specific carbohydrate diet. I discovered I was unable to make the enzymes to digest carbs due to villa damage where they are made. I was eliminating high amounts of sugar in the stool which is not normal. The SCD eliminates lactose, grains and starchy vegetables, the complex carbs and disaccharides that cannot be broken down. It is challenging but has helped me and many others. The nice thing is that you gradually add things in, so it works quite well as an elimination diet to help you pinpoint the problems.

[Waldz1]

Thanks for the great comments.

I have not eliminated lactose from my diet, so I am going to start by trying that. How long should I stay off of it?

As far as Colitis, I don't think I have that. I had an upper endoscopy done and everything looked fine, so my GI went into my intestines suspecting Celiacs, did a biopsy and viola! Celiacs. I feel like he would have found ulcers and things if it were something else.

I also started taking "Bio K" has anyone used this? I already feel better, though it may be psychological.

Thanks again.

[Mother of Jibril]

Lactose-free could help, but you might want to give casein-free a try for a few months. That's the protein in cow's milk... it's hard for a lot of people to digest and it's in all dairy products. Then if you want to reintroduce products without much lactose (hard cheese, yogurt) first, you can tell if casein is a problem for you or lactose or hopefully neither one... dairy products are delicious

I felt a lot better when I stopped eating corn. I was eating a lot of it when I went gluten-free (corn chips, corn cakes, corn bread... ugh), but that's another food that some people have a hard time digesting. On the SCD diet is an "illegal" food.

[Colleen.C]

I have been gluten free for over 7 months..or so I thought!! i could not figure out what was getting me and was told to give up dairy at first and then soy and then rice... what next!

It was very hard to tell what it was as i was only getting tiny amounts that would build up over 2 or 3 days and when I ate something else the pains would start, making me think it was whatever i had just eaten.

I have always been a baker so it was hard for me to give up and this is the reason I was being poisoned.

I experimented with flour mixes and recipes which I've done most of my life and came up with some beautiful bread, so was making it all the time. It wasn't until I decided to do the elimination diet and cut out all these flours that I started feeling better.

I was getting my flours from an unsafe shop so switched to an organic supplier who was also gluten free (by choice) so I thought they would be safe for sure. Not!!!

The only flour I buy now are Orgrans, Bakels or whatever else is labelled "Gluten Free" and comes prepackaged and has an ingredient list.

Never buy it from bulk bins or little health food shops who package it themselves. It will be done in the same workspace as the wheaten fllour and therefore unsafe.

I have not had pains or D since giving it up and am finally starting to put weight on and feel so much better.

3 1/2 weeks Gluten free

[mushroom]

Without wishing to rain on your parade in any way, once we give up gluten we often find other food problems, many of them caused by the initial gluten problem. The tips of the villi in your small intestine carry the lactase to digest lactose, so until your villi heal (and sometimes afterwards) you may well have problems with lactose and casein.

I also discovered an increased intolerance of soy and now, after one year gluten free, have learned that my pancreas is not producing enough digestive enzymes. I tried supplementing and using probiotics without much success, but my ND has now prescribed some Dipan 9 (from pig pancreas) to try to get my pancreas working again. I will add this to my supplements tomorrow since I only add a new one every two to three days.

The food and symptom diary is certainly the way to go to help you discover what else is causing you problems, and certainly check for any hidden and unexpected sources of gluten in cosmetics, toiletries, cleaning products, etc. The wheat growers have done a very good job of marketing their product and it lurks everywhere.

Good luck in your search and I hope you are feeling better soon.