gluten-free Experiment

[Mootana]

Hello All,

I have had significant and daily stomach, sleep, and depression/anxiety, and unexplained weight loss symptoms for years. I finally went to a GI doctor who ran several blood/stool tests. Every test came back normal and she diagnosed me as having IBS. However, no matter what I did, I kept having problems of varying severity.

I asked another (non-GI) doctor what to do. He suggested that I go gluten-free and see if I felt better, even though the blood test was negative. I have stayed away from gluten for one week. I went through, and am still feeling, gluten withdrawal, complete with a weird nausea, a constant headache, and worsening sleep problems. However, my stomach problems are just as bad, but a little different.

Today I decided to start eating gluten again because I did not feel better. Should I stop or wait it out?! How long should I wait without a diagnosis?

[rebe09]

Hello All,

I have had significant and daily stomach, sleep, and depression/anxiety, and unexplained weight loss symptoms for years. I finally went to a GI doctor who ran several blood/stool tests. Every test came back normal and she diagnosed me as having IBS. However, no matter what I did, I kept having problems of varying severity.

I asked another (non-GI) doctor what to do. He suggested that I go gluten-free and see if I felt better, even though the blood test was negative. I have stayed away from gluten for one week. I went through, and am still feeling, gluten withdrawal, complete with a weird nausea, a constant headache, and worsening sleep problems. However, my stomach problems are just as bad, but a little different.

Today I decided to start eating gluten again because I did not feel better. Should I stop or wait it out?! How long should I wait without a diagnosis?

I went gluten free for 2 weeks and during those two weeks I experienced withdrawals---headaches, gassy, and exhausted, BUT I had a better sense of well-being at the same time. Do you feel better with your depression/anxiety? I tell people to do it for 2 weeks and then go back to eating gluten and see if you can see any differences. Everyone's body is different. Going off gluten is a big deal to your body. The body can become addicted to the gluten, so give your body time to withdrawal from it. The key word is patience!

[Mootana]

Patience is good advice. I stayed away from the gluten for another day. I still am a bit moody, but not as anxious, I think. I also have not been as bloated, but I am not sure if it is the gluten or just a lower fat diet. I suppose that only time will tell. Hopefully, soon, the withdrawal symptoms will subside and I will sleep!

Does anyone know if withdrawal is a sign of intolerance?

[Lisa]

What do you eat daily on your gluten free diet? The diet can be pretty complicated in the beginning. And it you have damage do to celiac, it will take longer than a week to see some results.

A positive dietary response can be a diagnosis of sorts too.

If you need help with the diet, we'd be glad to help out.

[ravenwoodglass]

Patience is good advice. I stayed away from the gluten for another day. I still am a bit moody, but not as anxious, I think. I also have not been as bloated, but I am not sure if it is the gluten or just a lower fat diet. I suppose that only time will tell. Hopefully, soon, the withdrawal symptoms will subside and I will sleep!

Does anyone know if withdrawal is a sign of intolerance?

Yes withdrawl is a strong indication that whatever you are suffering symptoms from is something your body may not want or has become addicted to. In some celiac's the brain is strongly effected and when eating gluten it releases chemicals that are trying to counteract the poison. It can be strongly addictive for some. IMHO you should keep going with the diet, the withdrawl should be over soon as long as you are staying away from gluten. For me it was like one day a fog lifted and I felt better than I could ever remember. That took about 2 weeks. By the way you have a good doctor, in my opinion he is a 'keeper'.

[GFinDC]

A lot depends on how well you do at being gluten-free too. It takes time to learn all the ways you can get gluten in your diet. The easy way to avoid it is to eat whole foods and cook them yourself. Everything you eat or drink needs to be considered as a possible source of gluten. I think there is often an adjustment period in the beginning. I think if you really want to know you should stick to the diest at least a month, and make every effort to be 100% gluten-free during that time. That doesn't mean buying lots of pricey gluten-free products at the store though. It would be better to eat home cooked meat and veggies for the most part. And remember to check your spices used in cooking also. Some people seem to feel better very quickly, and others it takes a while.

[hannahp57]

Give it more time, and i would also eliminate soy, dairy, and oats (definitely eliminate cross contaminated, but also gluten-free oats for now). most people find tye dont tolerate those until they have been on the diet longer and have had more time to heal. i didnt feel better until about 6 months, then i added dairy with success, but found i could not tolerate oats yet. at a year and some change i could honestly say i felt GOOD. that was big for me, i hadnt felt goood in years. it does take time. the longer you've had symptoms, the longer you will probably need to heal

[mom26boys]

I did a 3 week gluten free trial and the first week was hard, especially the first 3 days. I felt like I was having withdrawal symptoms--constant headache, lethargy, inability to concentrate, nausea, etc. Thankfully, I had read somewhere that in some people the gluten reacts like opiates and so when you stop, you can experience withdrawal symptoms, so that kept me going because at first I thought that maybe I was just wrong about gluten being my problem. The 2nd week was much better than the first and each day I felt a little better. By the third week I was feeling great! I had energy, my joints didn't hurt, I didn't need as much sleep, my gi problems were gone, my brain fog had lifted and I could concentrate, etc. It happened gradually, but one day I just noticed I didn't have any of those things!!! Anyway, I had to get back on it to get a blood test (whcih came back positive), and then I knew I needed to be on it for my biopsy, but I "cheated" and would take 2-3 days off just because I felt so much worse after adding the gluten back after the 3-week trial. My doc wants me to do another blood test this week and said if the numbers are high enough, he would dx me without a biopsy, so after my test on Wed., I'm back off the gluten and I can't wait! That short 3 weeks--especially the last week--told me what I needed to know, regardless of whether I'm celiac or not, so I'm definitely going off of it for good. I strongly encourage you to give it more time. I don't think 1 week is long enough. Definitely try it for at least 3-4 weeks. Just my 2 cents, for whatever its worth

[nu-to-no-glu]

By the way you have a good doctor, in my opinion he is a 'keeper'.

Ditto on that. In my life-long experience with GI drs and the continual IBS diagnosis, they usually try to put you on all sorts of medication repeatedly rather than trying to get to the root of the problem. I read someone on here earlier (can't remeber who it was, so can't give credit, but Ithought it was brilliant)...anyway, they stated that they tink IBS should be looked at as a symptom and not an accurate diagnosis...I agree and think there really isn't such a thing and there has got to be an underlying "something" causing these probblems. Anywa, it sounds like your dr. is tuned into that and trying to help you find relief. i sure hope you do...btw, naby people on here have had the same norml test results and were told they were "the picture of perfect health" before being diagnosed....