Gluten-free, But Do I Have Celiacs?

[amh04]

( I started this as a blog, not sure how to post things, new to site, sorry!)

I have been gluten-free for about 16 months...I'm wondering if its celiacs disease or just an intolerance. Here is a rundown: I've had severe migraines 3-6 days a week since I was 7 years old (I'm 22 now) when I started the gluten free diet with in 4 months I lost 20 pounds of pure inflamation; pictures I look at of myself before gluten-free are terrifying to me, my face was so puffy you could barely see my eyes. I've heard I would have more of the digestion problems if I was celiac, however I constantly was irratble and would vomit often as a child.. Within a few weeks of gluten free my migraines stopped; why couldn't the dozen doctors I had seen since a child even suggested gluten as a possibility, no instead they tried every drug possible including anti-depressants, anti-pyschotics. Anyhow no more migraines, I have more energy I have completely changed my lifestyle, I look and feel great...Alternative medicine doctors have told my mom, brother and sister they all should stay away from gluten, I have a cousin who has been gluten-free for 2 1/2 years and was just diagnosed with Celiac. I don't eat anything processed and packaged, I eat only things I get from my garden or a local health food store and fish, which is always cooked myself. I don't eat lunch meats or meat at all except free range chicken so I'm pretty confident and educated on the subject enough to not digest gluten which is in so much processed/packaged foods, however if I knew I had celiacs I would be even MORE careful...For example I eat oats (steel cut organic) almost every morning, I've read older and less reputable articles stating they should not be consumed on a gluten-free diet, however I have read more recent articles stating the only reason that was ever said was because some commercially processed oats are packaged in the same facilities as wheat products..I guess I'm just hear to blab and hope someone has some sort of knowledge, suggestions or stories of their own...I don't have health insurance so don't plan on getting the tests, which I have heard sometimes don't catch celiac anyways. All I know is I no longer suffer from unbearble migraines, I don't look puffy and bloated and I feel great. (sorry for the horrid spelling)

[hathor]

Given your dramatic response to being gluten-free, it really doesn't make any difference if it is celiac or gluten intolerance. Both are permanent, can cause severe problems, and entail permanent and total elimination of gluten from the diet. The only difference is damage that gluten has done up to that point to one's body. With gluten intolerance, it can be that the villi just haven't been damaged yet or the damage is going somewhere else in the body.

You couldn't have the celiac tests now anyway since you haven't been eating gluten. I don't think you want to go back eating it for a few months, do you?

The thing with oats is not just with cross-contamination from the fields up through processing. (I read about this once; contamination with wheat can happen at many stages in the process.) The protein in oats is similar to gluten. So some (but not all) gluten intolerant folks can't hack even the expensive, certified gluten-free oats. You could always go off oats and see how you respond. Do you feel even better, or notice no difference at all?

I mention going off oats because I had a test indicating an intolerance to soy. I had never noticed a problem with the food. I went off it and some things improved that I would have never guessed were related. Like my complexion got noticeably better ...

Do you have any worrisome symptoms anymore or are you fine now? No need to offer advice if you have everything under control

[amh04]

Given your dramatic response to being gluten-free, it really doesn't make any difference if it is celiac or gluten intolerance. Both are permanent, can cause severe problems, and entail permanent and total elimination of gluten from the diet. The only difference is damage that gluten has done up to that point to one's body. With gluten intolerance, it can be that the villi just haven't been damaged yet or the damage is going somewhere else in the body.

You couldn't have the celiac tests now anyway since you haven't been eating gluten. I don't think you want to go back eating it for a few months, do you?

The thing with oats is not just with cross-contamination from the fields up through processing. (I read about this once; contamination with wheat can happen at many stages in the process.) The protein in oats is similar to gluten. So some (but not all) gluten intolerant folks can't hack even the expensive, certified gluten-free oats. You could always go off oats and see how you respond. Do you feel even better, or notice no difference at all?

I mention going off oats because I had a test indicating an intolerance to soy. I had never noticed a problem with the food. I went off it and some things improved that I would have never guessed were related. Like my complexion got noticeably better ...

Do you have any worrisome symptoms anymore or are you fine now? No need to offer advice if you have everything under control

I can't pin point it...about 4 months ago I was eating oats almost every morning but within 5 mins to a couple hours I would be racing for the bathroom, I told myself there was no way that it was from the possible "glutinous" oats and that it must just be from all the fiber?? So I stopped eating it for awhile and definitely noticed the difference but I still associate it with the high fiber of the oats..It might be partly denial because I can't resist a bowl of oatmeal with almonds and fresh blueberries...However another example I love sushi, and I always ask for wheat free soy sauce but most of the time they don't have it ( I could easily bring my own of course) so I will use a small amount when I'm out to sushi and the only thing I really notice (and sorry if this is too much information) is the most foul smelling gas, not usually an actually trip to the bathroom but some seriously stinky gas that makes me boyfriend wonder how that smell comes out of me. I feel like I have things under control BUT I realize if this is possibly more severe than I thought that there are definitely a few more precautions I should be taking...And as far as switching back to gluten in order to get the tests I think absolutely not..The only reason at this point I would take the tests is if I knew I had to be even more careful...I now believe that gluten-free isn't just good for those who can't handle it gluten, I truly believe it is much healthier and that more people feel great without it.

[hathor]

No, it isn't too much information. Hang out on this board and see how much we discuss our foul discharges and disgusting symptoms That is one of the great things about it. I know my family doesn't want to hear one more word about my poo ...

It sure sounds like you have a problem with oats, either because of the wheat contamination or the protein. Sorry. Bob's Red Mill does make a gluten-free hot cereal mix I use.

You either need to take your own wheatfree soy sauce or do without. I am soy intolerant too, so I have taken to spreading a little bit of the wasabi on my veggie sushi. You know what -- it tastes just fine.

[amh04]

No, it isn't too much information. Hang out on this board and see how much we discuss our foul discharges and disgusting symptoms That is one of the great things about it. I know my family doesn't want to hear one more word about my poo ...

It sure sounds like you have a problem with oats, either because of the wheat contamination or the protein. Sorry. Bob's Red Mill does make a gluten-free hot cereal mix I use.

You either need to take your own wheatfree soy sauce or do without. I am soy intolerant too, so I have taken to spreading a little bit of the wasabi on my veggie sushi. You know what -- it tastes just fine.

I haven't had oats since thursday morning...I had Quinoa flakes this morning, which also have fiber in them and the same thing happened that usually happens with the oats...Hmmmm.