Who Do I Trust?

[dragonsrebel]

I was first told I probably had celiac in early april. My blood test was very very high. I was sent for biopsy last monday which came back positive for celiac.Now here is where it gets tricky for me. I was told by many that I should quit eating wheat ect right now. Never touch it again. Then my doc told me to slowly ween myself off it so its not such a shock to my system. Who do I listen too?? Also I have heard that once you start your gluten free diet you will become extremly constipated due to lack of fiber. If this is true what is the best thing to eat to get this fiber im lacking?

[psawyer]

Both of those positions have merit, so you must make a decision that is right for you:

1. If you have had celiac disease for a long time, then it will take a long time to heal. If you have been experiencing the the autoimmune reaction for years, another week or two to adjust won't make much difference.

2. If you have had celiac disease for a long time, then much damage has been already done, and the sooner you completely eliminate gluten from your diet, the better. Any more gluten means more damage.

Those are the two arguments that you are hearing, and both have merit.

Your goal, whether you do it instantly or over a short transition period, is to reach a diet that is 100% gluten free.

Fiber is a concern for celiacs, as much of the fiber in a typical western diet comes from gluten grains. Whole brown rice will provide fiber. Flax seed is another excellent source (you need the real seeds, not just the oil).

[curlyfries]

I weened myself off. But of course I didn't know about this forum and didn't have help from my doctor (read my signature). The information I found on the internet made it seem so overwhelming, I felt I couldn't figure it out all at once. I feel that this process gave me time to wrap my mind around the whole concept. And once I found this forum, I realized it wasn't as limiting as I had originally thought. I sometimes read posts from newbies that feel deprived, frustrated and sometimes depressed or angry that they can no longer eat their favorite foods,or feel it is just too hard. I never really went thru any of that.

But everyone has to do what works best for them. Whatever you decide, welcome to the world of feeling better and living healthier.

BTW, I do miss being able to order take-out any time I don't feel like cooking, but I'm starting to lose unwanted pounds, so I guess it's a trade-off

Lisa

[trents]

I think your doctor is all wet. Never heard that position before of weaning yourself off wheat. The sooner you go gluten free, the sooner you will begin healing and unless you are completely gluten free your healing will be delayed or set back. There are lots of ways to get fiber besides wheat. In fact, most peole get their wheat in the form of white flour and pasta which are poor sources of fiber anyway. Fruits and vegetables, legumes and nuts are good sources of fiber. And there are also other whole grains which do not contain gluten such as oats (a little controversy about oats being gluten free but as more and more evidence accumulates it is becoming clearer that it isn't the oats but the cross contamination of the oats by wheat in storage and processing that is the problem on most oatmeal brands), corn and rice. Buckwheat (not really related to wheat at all despite the name) makes a very tasty, highly nutritious, high fiber hot cereal. Then, there is always Metamucil.

[CeliBelli]

I was told by many that I should quit eating wheat ect right now. Never touch it again. Then my doc told me to slowly ween myself off it so its not such a shock to my system. Who do I listen too??

I was just diagnosed with Celiac in December. The day of my endoscopy/colonoscopy I felt better than I had in years, despite being famished and dehydrated to the point of disorientation. Or I should say, because I was famished I felt better. I hadn't eaten gluten in two days, and already I had begun to feel better. The pain, bloating and inflammation were already receding. The endoscopy, of course, left me feeling a bit sore, as they took nine snips of my gut, but in a week that was gone and I felt great! I was glad to be off gluten cold-turkey, and haven't looked back since.

In all my research, I've never seen a recommendation to "ween" off gluten. Quite the contrary. Every encounter with gluten will create a full immune response, whether you feel it or not. And every time that happens, you are damaging your gut. The sooner you stop the damage, the more quickly you will heal.

It does take time to get used to the new diet and the new routine, but that is in the mind, not the body. If you go off gluten cold turkey, your body will likely thank you for it.

[cyberprof]

Dragonsrebel,

I, too, have never heard that weaning is beneficial. However, some people do have "gluten withdrawal" symptoms (not me) which are various but include flu-like symptoms, moodiness, headaches etc. You could look around the board for others' experiences.

But I'm not sure weaning yourself slowly would be a way to avoid gluten withdrawal symptoms. As long as the weaning period is short, Peter (psawyer) has valid points and you could do it either way.

In my case, going off gluten made me feel better within 48 hours and completely different within a week and a half. I hope you feel better too.

~Laura

[ksymonds84]

I was first told I probably had celiac in early april. My blood test was very very high. I was sent for biopsy last monday which came back positive for celiac.Now here is where it gets tricky for me. I was told by many that I should quit eating wheat ect right now. Never touch it again. Then my doc told me to slowly ween myself off it so its not such a shock to my system. Who do I listen too?? Also I have heard that once you start your gluten free diet you will become extremly constipated due to lack of fiber. If this is true what is the best thing to eat to get this fiber im lacking?

Welcome to the board! I too have never heard of weening yourself off gluten. You must do what you feel is right for your body. I would however get off as soon as you feel you can with your numbers being very high. The healing can take alot of time for some people so the sooner you start the better. Good luck and keep us posted on your progress.

[tarnalberry]

sure, if you get all your fiber from all-bran cereal, whole wheat bread, and eat no vegetables or fruit, you'll suddenly not getting any fiber. but to just assume that is a pretty big assumption on your doctor's part. there are a LOT of places to get fiber (more fiber and better fiber) than wheat, barley, rye, or oats. (oats are a great place, but there are others. lots of others.)

find out what other sources of fiber you want to have in your diet and use them. use whole grain, non-gluten items (millet, quinoa, flax meal, teff, buckwheat, etc.) if you don't want to just use fruits and vegetables (which are going to mostly have different types of fiber anyway).

I wouldn't bother with weaning... why keep ingesting something that's a toxin when you don't need to?