New Here With Questions...

[Sooz]

Hello!

I've just joined. I've been having belly problems for about 4 weeks. I've been gluten free for about 2 weeks now and definitely feel better, but not completely. I'm still having very random attacks of belly cramps, yet I'm eating very simply (all fresh meat and vegetables, occasional eggs, with the odd gluten-free cracker) - definitely gluten free. I have another related disease - Type 1 Diabetes, so Celiac is being considered.

I had a routine anti-gliadin test a couple of years ago, but it was negative. On the other hand, I'm generally low carb and I doubt I'd have been eating enough gluten at the time - maybe a slice of bread once a week or so, maybe a cracker here and there. Not sure it was enough.

While I'm being booked in to a gastroenterologist, getting scans done and so on (all of which is a bit impossible during the holidays), I have some questions:

I had B12 tested a few days ago and it's normal. My question is... how long does it take for B12 to be depleted in untreated Celiac? And how long does it take to replete after going gluten free?

Being gluten-free now, I assume that no regular blood test (other then gene testing, which my family doctor can't order) would show much. Even an endoscopy might not show much after such a short time, from what I understand. What do you think?

I'm not so much interested in a diagnosis right now, this minute (that may come later), as making sure I'm on the right path to fix the problem. If gluten-free fixes it, then I'm ok with that, however, I'm not completely convinced it's gluten. Only time will tell, I guess. Any assistance would be appreciated.

[mamaw]

Why not wait a few months for the testing & eat wheat & lots of it before testing? If you stop eating wheat & partake of only little amounts then you are wasting your money or insurance because the test will not be accurate( a false reading).If you honestly don't care about a formal dx's then why even bother testing just stop eating gluten..

B-12 deficient is a common problem for many celiac, gluten intolerant or a person without other health issues..Another is Vit D-3

For me, B-12 under the tongue or swallowering never helped, I take Bi-monthly injections to see any difference. The range for B-12 is wide, like 300 to 1000. But most like the B-12 around 850 - 900.Mine lingers around 450 without injections & when I don't take the injection it drops rapidly....

I do think celiac or gluten intolerant is possible for you..

And have you given thought about the several types of flu being shared across the country.I seen people for over three weeks with nagging , lingering issues ie: upper chest, cough, inflammation, Big D, vomiting, Fatigues, aches & pains just enough to annoy daily life....

Feel better soon.

[rosetapper23]

If you don't care about a DX, I'd just continue eating gluten free. You'll have your answer if you ever accidentally slip up in the future--if gluten's a problem, you'll know it! Not all celiacs have nutritional deficiencies, and I suspect because you've been "gluten light" for years, you probably don't have any. You might just want to get your iron, B-12, and D3 tested occasionally to be on the safe side. Otherwise, simply enjoy the gluten-free lifestyle....and stay well, my friend.

[Sooz]

Why not wait a few months for the testing & eat wheat & lots of it before testing?

Pretty much impossible unless I want to be doubled over with cramps.

Whatever I have, is so much better since guten-free, but not entirely gone. I'll go quite a few days and be perfectly fine, then the cramps will be back for around 15-24 hours. Then fine again. I had some corn couscous (gluten-free on the packet) the other night and the next day I had problems. I'm learning that even some gluten-free foods are a problem for some people, so I'm back to eating just chicken, lamb and fresh vegetables. Really fine today and feel great.

I've learned on this forum that I should probably get rid of diary for the moment too, although I don't have lots of it by any stretch. I can tolerate live culture full fat yoghurt (it seems to help), but I haven't gone near milk. Doc prescribed probiotics which I'm taking, plus peppermint oil before meals, which I haven't been taking other than some fresh mint in tea now and then.

And have you given thought about the several types of flu being shared across the country.

I'm in Australia in the height of summer, and have no regular flu symptoms, no temperature etc. My white cell count is perfectly normal. My doc concludes bacterial infection is unlikely, but is sending me for fecal tests anyway, to rule out things like giardia etc, plus a scan to rule out other things eg gall bladder and so on, although I don't have typical gall bladder pain. I also assume if it's some kind of bug, I wouldn't be going 4-5 days without a single problem.

I've had other symptoms for ages, like that truck hit me feeling after bread - and my blood glucose wasn't the problem, which I've proven with rigorous testing. My Type 1 diabetes is under pretty good control with an insulin pump. The odd thing is that I haven't had these belly problems before. Maybe they've come on because I was eating more gluten than usual in the months leading up to this,

It's a process I guess, and the more simply I eat at the moment, the better, I assume. I was eating pretty clean food to start with, and have done for years but there was some gluten in my diet, which is now gone. Everything I use to prepare food has either been steam cleaned or put through a hot dishwasher. I'm not eating out at the moment, and not eating at any one else's house, so far. That's all bad enough doing low-carb, but now with gluten-free, and until I figure out what I can and can't eat, and indeed what the problem really is, accepting dinner invitations is dicey at best.

[Sooz]

If you don't care about a DX, I'd just continue eating gluten free. You'll have your answer if you ever accidentally slip up in the future--if gluten's a problem, you'll know it! Not all celiacs have nutritional deficiencies, and I suspect because you've been "gluten light" for years, you probably don't have any. You might just want to get your iron, B-12, and D3 tested occasionally to be on the safe side. Otherwise, simply enjoy the gluten-free lifestyle....and stay well, my friend.

I was definitely tested D3 deficient about a year ago, but then I'm in my 50s and on top of Type 1 diabetes, I have lupus as well, so I don't tend to hang around in the sun much.

It would be nice to have a dx, but the main thing at the moment is to get rid of these awful belly symptoms, and some nausea which is now gone. There are probably lots of symptoms, which, once they're gone, I'll notice I had them. With a number of autoimmune diseases, symptoms tend to overlap. I'm still hoping that this is some kind of bug that will go away. Wishful thinking, I guess!

[mamaw]

You are headed in the right direction. If it is a gluten issue it can take TIME for one's body to adjust to the new foods & the way we eat in general...If you feel better without gluten then go for it. But you did mention that maybe down the road you may seek a formal dx's, my suggestion is if you are thinking about a formal dx's do it now before you get all feeling wonderful then put your body into gluten attack.. I just think it would be less trauma now...

Plus many of us after going gluten-free learn how to read our bodies much better & then we find out other foods besides gluten becomes an issue...we probably had the issue all along but we become so in tune with our bodies our radar starts to pick up more hints...

nightshades, MSG, Soy, dairy, corn seem to become culprits for many...

It is also good that doctor is checking out the gallbladder.........

I'm not a sunworshipper myself.. My D-3 was very low so I do take a Vit D 3 with K-1 & K-2 daily...

Again, I hope you feel better soon.....

[Sooz]

But you did mention that maybe down the road you may seek a formal dx's, my suggestion is if you are thinking about a formal dx's do it now before you get all feeling wonderful then put your body into gluten attack.. I just think it would be less trauma now...

I understand what you're saying, but in the public system here, I can wait many months for an endoscopy. Plus in my normal diet, I'm not such a big grain eater anyway because of the carbs. Putting my body under stress if it is gluten, and dealing with more insulin because of the carbs, isn't something I'd want to do for any length of time.

What's odd is that this (cramps and nausea) came on suddenly about 5 weeks ago, although I've had milder symptoms for years, which easily could be attributed to other things as well as gluten. But if I've had this for ages, then a normal B12 doesn't fit, does it?

I guess it's a mixed bag - I don't really know what I've got. It seems I'm quite a bit better without gluten, yet have had the odd day where I haven't been better on gluten-free and I'll have what I call an 'attack'. I think the trick will be to rule out the easy stuff, which my family doctor can take care of, and then wait for the gasto appointment, armed with test results, and see what kind of tests he can run - eg gene testing etc. I just have to get one idiot doctor (had plenty of those) and I'll be back where I started.

I seem to have a knack for being misdiagnosed over the years. I don't want this to be another one. At this stage, the possibilities of what I may have are many. Other than some strange virus, gluten seemed the obvious first choice.

I'm going to keep being gluten-free for now, taking our more dairy and maybe corn, to see if that helps, and see what develops along the way with the medical stuff.

Appreciate everyone's help! This sure is a minefield!

[Sooz]

Ah, idiot me! Totally forgot that our beloved Vegemite has gluten! It might well explain those random, thus far unexplained, symptom days. Without a food diary, which I've been meaning to start, I can only guess it has been a contributor in the last two weeks, when I've been thinking I'm totally gluten-free, but having overt symptoms on random days. Duh - big time!

Ok, so now I will see what happens without the Vegemite. And yes a food diary is a must!

One more question about how suddenly all this came on 5 weeks ago. From what I'd call nothing to thinking I had an awful bug from one day to the next. Is that possible?