celiac disease Symptoms On gluten-free Diet

[slcceliac]

I was diagnosed with celiac disease this year in Feb. and I've been gluten-free since then. Occasionally (once or twice a week) I will have frequent bowel movements (not quiet D), several during a course of day (same symptoms I had before going gluten-free), and stomach cramps. My stool is also a bit oily, so I'm assuming that the fats in my diet are still not being absorbed.

The question I have for people that have gone through this initial phase of becoming gluten-free, is how long does it take for villi to recover and for symptoms to go away. People that don't have celiac disease occasionally have the symptoms I described so how do I know if my symptoms are symptoms of accidental glutening vs. normal GI problems. How can one know if they got glutened???

The gluten-free diet was amazing in the beginning, but now that I am starting to have symptoms again, I am worried and discouraged. Does anyone have any advice or insight into my situation?

Thanks a ton!

[Ursa Major]

Did you eliminate dairy from your diet when you went gluten-free? The tips of your villi will produce the enzyme lactase which allows you to digest dairy. If your villi are flattened, those tips are gone, hence you will have a lactose intolerance.

Everybody diagnosed with celiac disease is advised to initially eliminate dairy from their diet in order to heal. You can try it again after about six months to see if you can tolerate it.

A lot of people with celiac disease are also casein intolerant, meaning that they can't ever have dairy again. But some people are fine with it after a few months.

The dairy can cause 'glutened' symptoms. So, unless you haven't eliminated all sources of gluten, it could be the dairy. Or soy, or something else altogether.

[pnltbox27]

thanks for asking that question , i am going thru the same damn thing. its been driving me crazy. ive tried to give up dairy ,but i always seem to cheat.im kinda still pissed at giving up just about every good junk food i like.im 1 month in and it seems i feel glutened about every 3 or 4 days. hope you feel better soon

[slcceliac]

I do consume milk, but it's lactose free milk. Other than that, I have no idea what's causing my celiac symptoms. I'm starting to look for patterns, and so far the only food/dring that seems to bother me is red bull, which I drink on almost daily basis?!?!

It's good to know that other people are going through the same experience. I would love to hear more about other peoples' experiences as well. I understand that this topic is a little bit uncofortable to discuss publically, but I'd much rather have insight/more information than stay in my comfort zone...

[gfp]

I do consume milk, but it's lactose free milk. Other than that, I have no idea what's causing my celiac symptoms. I'm starting to look for patterns, and so far the only food/dring that seems to bother me is red bull, which I drink on almost daily basis?!?!

It's good to know that other people are going through the same experience. I would love to hear more about other peoples' experiences as well. I understand that this topic is a little bit uncofortable to discuss publically, but I'd much rather have insight/more information than stay in my comfort zone...

Intolerance to dairy is in two parts....

There is lactose intolerance which EVERYONE has after they are weaned... (to some degree or other) and casein intolerance which is the protein in milk. Lactose intolerance mainly (in simple terms) just means adults are not equiped to digest milk... the enzyme (lactase) which is needed drops off as we become older... just like all other mammals but our bodies do adjust.. just to different amounts.. so some people can tolerate it and others cannot... and many are somewhere inbetween...

Celiacs already have a challnged digestive system so putting something in which is hard to digest does nothing to help healing...

People that don't have celiac disease occasionally have the symptoms I described so how do I know if my symptoms are symptoms of accidental glutening vs. normal GI problems. How can one know if they got glutened???

This has an easy answer and a longer one....

Normal people get diarrea on average 2-3 times a year... any more is not normal. If your a nursing mother or exposed to toddlers or in other high risk groups then 4-5 times a year can be considered normal...

The longer answer requires a leap of faith....

Most people here that can say when they are glutened have gone through two stages of gluten-free.

In short initially, what we consider gluten-free we usually look back with 20/20 hindsight and say "oops"....

Nearly everyone seems to become MORE sensitive the closer to 100% gluten-free they become and 100% gluten-free is not really achievable outside growing all your own food... (OK over statement but ...)

In other words if you live a "normal" life then chance is you get glutened...

If you eat out often you will get glutened .... its just a fact of life. You can control the risks to a large extent but never be certain because almost nowhere has a seperate kitchen for gluten-free food ...

If you share a kitchen with non gluten-free others .. same thing... accidents just happen...

I personally find it easier to divide foods into different categories....

At home I only have "very safe".... which to me means fresh fruit and vegetables and washed meat etc. and one or two really basic things.. the simpler somnething is the less chance... so a can of tomatoes is usually just tomaties, citric acid and tomato juice.. but a can of say cooked lentils can be cooked in a broth... and basically anytihng cooked in a broth (you didn't prepare yourself) is "suspect" ...

The hard part to grasp by me trying to explain is that if you are 100% gluten-free for a while (1-3 months?) you ate in a position to spot what glutened you... but otherwise the symptoms are so erratic its really hard to tell. I find I can have bad movements for 5-6 weeks after being glutened... however before I had my kitchen 100% gluten-free I could never tell...

For the first day or so its predicable but after that I could be OK down there for a week then have a sudden movement and then 2-3 more then be fine for another week...

hence you can never tell... "what is normal"

You also then start to notice (most of us do) that small glutenings very quickly express themselves other ways like mood and such... A friend I used to work with said he could always tell when I turned up at work, simply because I'd be wearing black...

Again this mood/feeling we call brain fog is hard to discern until you get rid of it.... because mostly we have lived with it so long it feels like normal....

Imagine it affected something dead easy to test... like it made us color blind... (just for the sake of discussion)

We could have spent years never seeing the difference between red and blue... or not like "everyone else"... but to us that's just how it looks... then after being completely gluten-free for 1-2 months you suddenly notice that the flowers look different...suddenly the world looks different with a differentiation to color you never saw before EVER... except when you were perhaps a tiny child...

Then you get glutened and oops... those colors dissapear again...

Unfortunately its not quite that simple... but it is a feeling you get to know... BUT you can't get to know it until you get gluten-free 100%...

Imagine now I'm trying to explain to you your color blind ... how weird would it be? You spent years seeing like that and unless you take a leap of faith you will probably never see those colors.. you just have to trust they exist...?

The weird thing is many of us oldies had attributed lots of stuff to getitng old.. like joint pains and the like.. or our eyesight deteriorating and 101 other things... Which ones are genuinely just getitng older?

The catch is you suddenly find out but only after a longish period of being gluten-free...

Until your "normal" point of reference is not having eaten gluten (at all) for 1-2 months its really hard to express this...

[JEM123]

I do consume milk, but it's lactose free milk. Other than that, I have no idea what's causing my celiac symptoms. I'm starting to look for patterns, and so far the only food/dring that seems to bother me is red bull, which I drink on almost daily basis?!?!

It's good to know that other people are going through the same experience. I would love to hear more about other peoples' experiences as well. I understand that this topic is a little bit uncofortable to discuss publically, but I'd much rather have insight/more information than stay in my comfort zone...

Hi,

You say you are drinking Red Bull? Is that the beer? Beer is a big no no if it is.

[Ursa Major]

....so far the only food/dring that seems to bother me is red bull, which I drink on almost daily basis?!?!

Okay, since you know it bothers you, why do you drink it? Give it up and see what difference it makes.

Also, you may be intolerant to casein, in which case drinking lactose free milk will still give you glutened symptoms.

And gfp is right, NONE of us should be consuming dairy. Cows milk is the ideal food for calves. Human breast milk is the ideal food for human babies. After being weaned NO mammal, including humans, should be consuming dairy. It simply isn't good for us.

Some people (especially the dairy industry of course) will tell you that we need dairy for calcium. That is utter nonsense. How do cows get such strong bones? Right, from eating green grass. If we eat enough green vegetables we'll get a lot more calcium than from drinking milk. In fact, it has been shown that drinking milk will leech the calcium out of our bodies! Nowhere is the rate of osteoporosis as high as in North America, where also the consumption of dairy is the highest in the world.

[slcceliac]

Okay, since you know it bothers you, why do you drink it? Give it up and see what difference it makes.

I stopped drinking Red Bull as soon as I suspected it was causing problems... Right now I'm just playing scientist by trying to notice patterns. I've had cramps, D, and many other symptoms for years, so in my mind, that was "the norm". Gfp, thanks for the comments, it helps putting things into perspective... I think my problem is unintentional CC, as I live in a household that consumes gluten (plus my dad owns a bakery and a small store, and when he comes home from work, he always has wheat flour on his clothes - how ironic that his son has celiac disease!) Celiacs can tolerate up to 20 ppm, so eating a crumb of wheat bread could cause the symptoms. CC and airborne wheat/gluten shouldn't be a problem once I get my own place in less than a month. My entire kitchen will be gluten-free!!!

My gastroenterologist was not very helpful, and I have an appointment with another one in May. I will make sure I discuss casein and other potenial allergies/intolerances...

For someone that's been gluten-free for a long, how long does it take for symtoms of glutening to show up??? The same day?

Again, thanks everyone for sharing their experiences/knowledge.

[gfp]

I stopped drinking Red Bull as soon as I suspected it was causing problems... Right now I'm just playing scientist by trying to notice patterns. I've had cramps, D, and many other symptoms for years, so in my mind, that was "the norm". Gfp, thanks for the comments, it helps putting things into perspective... I think my problem is unintentional CC, as I live in a household that consumes gluten (plus my dad owns a bakery and a small store, and when he comes home from work, he always has wheat flour on his clothes - how ironic that his son has celiac disease!) Celiacs can tolerate up to 20 ppm, so eating a crumb of wheat bread could cause the symptoms. CC and airborne wheat/gluten shouldn't be a problem once I get my own place in less than a month. My entire kitchen will be gluten-free!!!

My gastroenterologist was not very helpful, and I have an appointment with another one in May. I will make sure I discuss casein and other potenial allergies/intolerances...

For someone that's been gluten-free for a long, how long does it take for symtoms of glutening to show up??? The same day?

Again, thanks everyone for sharing their experiences/knowledge.

Actually there is no proof they can..... or at least the proof they can is about the same as the proof that smoking cigarettes doesn't cause cancer....

The 20ppm figure was one that was agreed on by the food industry... basically because its cheap to screen food at that level..

The industry then paid for tests specifically looking to prove this....

Of the ones I have seen they are basically just wrong.... can't find it right now but I'll try and explain...

For example if you assume that the normal incidence of celiac disease in the population at large is 1:5000 (which the study I read did) then you can assume a control group of 100 people or 500 don't need testing because statisically they are unlikely to be celiacs....

If however you take the figure of 1:1333 which is pretty universally accepted then the chance is there will be several in the control group....

Hence obviously the control group isn't a real control group and the vast differences they might find become marginalised and easier to blame on statistical error....

Equally if they don't like the answers...they just don't publish the test....

On the other hand there is a lot of good scientific evidence saying any amount of gluten can cause damage.... and indeed because of the nature of the disease this fits.... its not the actual gluten that harms you.... its actually your own bodies antibodies that do the damage.... so you only need enough gluten to actually start the process of making the antibodies... and your antibodies do the rest....

CC and airborne wheat/gluten shouldn't be a problem once I get my own place in less than a month. My entire kitchen will be gluten-free!!!

Hey, this sounds neat.... I honeslty think your going to have to grin and bear it (or the D equivalent) until then....

Its so close ... and cleaning out the family kitchen is going to take most of that time.... specially if dad is unintentionally bringing the stuff home...

Doing all the stuff we usually recommend like ditching toasters and the like isn't productive when your moving out real soon and if your going to have a 100% gluten-free kitchen then you can make a clean start and never let the stuff in there

[MaryJones2]

I was diagnosed with celiac disease this year in Feb. and I've been gluten-free since then. Occasionally (once or twice a week) I will have frequent bowel movements (not quiet D), several during a course of day (same symptoms I had before going gluten-free), and stomach cramps. My stool is also a bit oily, so I'm assuming that the fats in my diet are still not being absorbed.

The question I have for people that have gone through this initial phase of becoming gluten-free, is how long does it take for villi to recover and for symptoms to go away. People that don't have celiac disease occasionally have the symptoms I described so how do I know if my symptoms are symptoms of accidental glutening vs. normal GI problems. How can one know if they got glutened???

The gluten-free diet was amazing in the beginning, but now that I am starting to have symptoms again, I am worried and discouraged. Does anyone have any advice or insight into my situation?

Thanks a ton!

Hello there,

It took about 6 months before I felt better. I had amazing results the first few weeks but then I went through a period of a few months where I was touch and go. Most people on this board will tell similar stories so don't get discouraged. Here are my lessons learned and I hope they help you. Every person is different so it may not work for you.

Along the way I discovered that I could not tolerate dairy, soy or canola so it's possible you have something else going on. It is also possible that you are still getting gluten somewhere. I have a steadfast rule that nothing goes in to my mouth unless I verify with the company that it is gluten free. The folks on this board have gone to great lenghts to verify gluten-free products and you can find reliable information on just about all commerical foods here. I also stopped eating out while I was healing because the only way I could guarantee that my meal was gluten free was to make it myself.

When I think that something in my diet doesn't agree with me I go back to eating rice, steamed vegetables, whole fish or chicken all cooked with only olive oil and seasoned with salt and pepper. I do this for at least a week and add suspect foods 1 at a time every five days until I hit on something. Condiments are the worst offenders and can make you think other foods are causing a reaction.

Finally, I take a lot of supplements - Iron, Magnesium, Calcium (with Vitamin D), Multi-Vitamin - and give myself B12 and Folic Acid injections every week and really think that has helped me recover.

Hang in there. It will get better.