How Fast Does The Diet Work?

[katyd1d]

For about 6 months, I've been having "tummy trouble," which is to say, regular daily diarrhea and painful cramping. It started slow, but when I caught a stomach bug that many of my friends had, I didn't really recover. The first suggestion by the doc was IBS, and I was given hyoscyamine, then hyomax, to get it under control. Hyomax helps, but had bad side effects (dizziness, nausea, abject misery). The hyoscyamine is the same stuff, but not control release, and it helps take the edge off the cramping, with minor but still present side effects. It also gives me some alternating days of constipation, so at least there's variety. Since they didn't provide a fix, I was sent for the butt-camera review.

I got a colonoscopy done which ruled out most of the scarier stuff, and some biopsies were taken of my small intestine. I'm waiting on those. The colonoscopy doc also had me go in for blood tests for celiac. Ah ha! I think. Other symptoms I've had: recent weight loss (25 pounds), lifelong anemia, lifelong canker sores. I did really well on Atkins several years ago, for about two years, until I went through some major life changes and wanted to stop having the Atkins bad breath.

I am actually hoping that celiac turns out to be the cause of my trouble, because it has a fix-- the gluten free diet. I've been on it for two days.

I know I should be patient, but when will I start to feel a difference if it's helping? I am being super careful-- reading labels, making my own food from scratch. I've also cut out dairy just to be sure. I'm also having a particularly bad episode of cramping and diarrhea at the moment, so my mood is not the best. I'm eating small meals, often rice cakes with sunflower butter, rice and chicken, baked potatoes, apple juice and watermelon.

I should mention that since I've been having trouble, I've been living on pb&j on white bread, thinking that bland food would help. Perhaps, it hasn't.

I don't see the doc again until mid-July, because of her schedule, so I won't have the test results until then. I know that false negatives are common, though, so I really want to see if the diet helps me.

[psawyer]

You mention pb&j on "white bread." You do know that regular white bread is made from wheat flour, don't you?

Time to feel a difference varies widely from person to person, but if you are still ingesting gluten, even in small amounts, it will literally take forever.

[danaf617]

I could have written this same post. I've been having trouble for 6 months also, although mine all started with a virus/tummy bug. I haven't been the same since. Also had the IBS dx and the colonoscopy. As well as negative celiac results from the blood tests. My gastro has me on Librax and some days it helps, most days it doesn't.

I am still not convinced it's not celiac or a gluten intolerance so after learning about it on this site, I did the testing from Enterolab. Waiting on results as we speak.

I have also said I hope it's celiac so I have an answer and have a way to fix it. Most people in my life couldn't understand why I'd be wishing for a disease diagnosis but not knowing and just being medicated with no relief sucks!

I hope you find some answers soon!

[ravenwoodglass]

If you want a diagnosis you HAVE to keep eating gluten until your testing is done. Your risk of a false negative is still there on a full gluten diet but you will definately have a negative if you are already gluten free. You could try calling your doctors office and asking if you can have the blood work done before you see her and then give the diet a strict try ONLY if you are not going to have a biopsy done. If you plan on getting the biopsy you need to keep eating gluten until that test is done.

[Looking for answers]

Mid-July?! They need to run tests on your sooner than that. I would push for a little more urgency or a different specialist. If she is so busy to address your needs sooner, she could at least have a nurse pass along your results. Ugh, that just makes me mad!

[macocha]

yeah - I would push the blood testing up sooner because you have to be on the wheat/gluten in order for you to test right.

Also - bread is a no no if it is regular white bread. You have to go with specially made bread.

Also - check your rice cakes. There are limited brands that specialize this diet. You would naturally assume that rice cakes would be okay given their name, but they are not.

[Skylark]

To answer your question, two days is not enough. You might start to notice differences after two weeks, but some people take as long as two months.

[sb2178]

it took me 10 days to feel better and then i was "cranky" for another week. and i was eating no prepared foods at all.

[Mari]

I knew after just a few days on a gluten-free diet that it was helping, I felt a sense of relief tho it has taken a long time to get my digestive tract working again.

I wouldn't wait to go on a strict gluten-free diet as you have had most of the tests and are just waiting for the results. I used Enterolab to do the DNA marker test and they offer fecal tests for the autoimmune antibodies and allergies which are more sensitive than the blood tests. Their website is very informative.

Celiac Disease is often set of by the type of intestinal 'flu' which may be caused by a toxin producing bacteria. Not only can these toxin producing bacteria hang around in your gut but they can give the normal similar bacteria the toxin gene. There are several ways to get rid of these bacteria - some of them are easy to kill of just by using the spice turmeric (recepies and instructions online) and also helpful are cayenne, cinnamon and ginger.

Hope this helps.

[katyd1d]

You do know that regular white bread is made from wheat flour, don't you?

Ha! Sorry I wasn't clear. I mean that in the last several months, I was living on pb&j (with bread) in an effort to get some relief from eating a light, bland diet. It only helped some. The celiac theory is new, and I only just cut out the gluten this week (and realized that the pb&j route may have been hurting more than helping).

[katyd1d]

Thanks, ya'll!

I got the actual blood test done at the start of this past week (eating bread up to the day of testing, and cutting gluten out the next meal after the test). My doc may mail the results, but won't be able to sit down and talk to me until mid-July.

My rice cakes have "gluten free" on the label, so I'm hoping they mean what they say!

Mari, thanks for the toxin/spice info. It certainly won't hurt to try it! I'm open to ANYTHING to give me some relief.

Skylark, thanks for the info on the time it can take. I'll definitely give the gluten-free diet plenty of time to see how it does.

I did just get the biopsy result in the mail-- the biopsy from the end of the small intestine is normal. Does anyone know if that can be any different from the endoscopy biopsy that most people get when checking out the celiac possibility (from the start of the small intestine rather than the end)?

[ravenwoodglass]

Thanks, ya'll!

My rice cakes have "gluten free" on the label, so I'm hoping they mean what they say!

What brand are they? Quaker brand says they have always been gluten-free and haven't changed ingredients but are now using the label. They MAY have a strong risk of CC since many have reported being made ill by them. Lundberg is for sure gluten free.

As to the biopsy how many samples did they take? They should have taken at least 6. Also damage can be patchy and easily missed. Don't take either a negative blood test or biopsy as a for sure that you don't have an issue with gluten.

[katyd1d]

Thanks for the head's up on Quaker-- that is what I was eating. I got the Lundberg brand now, which is fine, but so crumbly (about a whole rice cake worth of crumbles left in the bag)! But I'm glad to know that seaweed flavor rice cakes exist. I may not get them again, but the universe is a fuller place for having them (yuck)!

They haven't mailed me the results, but I see the doctor in two weeks for the blood tests. I realize that the thing that matters most, whatever the blood test shows, is how I feel (since it's possible to be gluten intolerant without being celiac). If I find something to make me feel better, I will be extremely thankful-- I can't even begin to say! So far, my symptoms are reduced, but I don't know if that's because I'm really feeling better or because I just WANT to feel better. They're not gone.

I am glad to say I am only taking half of the stomach pills (hyoscyamine) that I was taking a few weeks ago! I take them when I feel cramps/pain, which is noticeably reduced. I also am having WAY less diarrhea!!!

As for the biopsy, I will ask when I see the doctor, but I believe they just took one (two samples from my large intestine, to make sure there was nothing wrong with it, and one from the entrance to the small intestine). At least I got the color photos of my colon! They were checking it for evidence of Crohn's disease, cancer, colitis, etc., and the goal of the colonoscopy wasn't to get the small intestine biopsy. However, I talked briefly to the doctor before the procedure started, and based on my symptoms, she said that Celiac was the next thing to start checking for (since the colon was fine). I guess she'll tell me if she thinks it would be worthwhile to go in from the other direction (top down instead of bottom up) and really check the small intestine out!

[ravenwoodglass]

Thanks for the head's up on Quaker-- that is what I was eating. I got the Lundberg brand now, which is fine, but so crumbly (about a whole rice cake worth of crumbles left in the bag)! But I'm glad to know that seaweed flavor rice cakes exist. I may not get them again, but the universe is a fuller place for having them (yuck)!

They haven't mailed me the results, but I see the doctor in two weeks for the blood tests. I realize that the thing that matters most, whatever the blood test shows, is how I feel (since it's possible to be gluten intolerant without being celiac). If I find something to make me feel better, I will be extremely thankful-- I can't even begin to say! So far, my symptoms are reduced, but I don't know if that's because I'm really feeling better or because I just WANT to feel better. They're not gone.

I am glad to say I am only taking half of the stomach pills (hyoscyamine) that I was taking a few weeks ago! I take them when I feel cramps/pain, which is noticeably reduced. I also am having WAY less diarrhea!!!

As for the biopsy, I will ask when I see the doctor, but I believe they just took one (two samples from my large intestine, to make sure there was nothing wrong with it, and one from the entrance to the small intestine). At least I got the color photos of my colon! They were checking it for evidence of Crohn's disease, cancer, colitis, etc., and the goal of the colonoscopy wasn't to get the small intestine biopsy. However, I talked briefly to the doctor before the procedure started, and based on my symptoms, she said that Celiac was the next thing to start checking for (since the colon was fine). I guess she'll tell me if she thinks it would be worthwhile to go in from the other direction (top down instead of bottom up) and really check the small intestine out!

You have to be on a full gluten diet to have any chance of a correct diagnosis on the endo. If you are planning on the endo please do go back to eating a regular gluten filled diet. You need to really load up on it if you have been gluten free or gluten light.