I Thought I Was Getting Better

[Boffin]

Hi all.

I've now been gluten-free, as far as I know, since Sunday 1st July. For the first 5 days I wasn't really seeing much in the way of improvement, however, since the Thursday of that first week I hadn't had any more diarrhea, until today.

I thought I'd been doing everything right as much as possible so I'm not sure where I went wrong really. The D this morning wasn't as bad as it had been on some occasions, but having it rear its ugly head again has depressed me and made me wonder if I will get better or if I'm just going to go back to the really bad explosive stuff (sorry) again!

I'd been concerned though as although I'd been producing more and more normal stools (sorry for detail) to the point of really coming out of the bathroom with a smile and feeling like partying (sad!) I was still getting bloating and some stomach aches. Is it usual for "normal" people to end the day more rounded in the tummy than they began it? Or is that bloating and something that shouldn't happen? I start the day quite flat but finish quite puffed up still. Also I've not felt miraculously wonderful suddenly as some people seem to have done when cutting out gluten. I've still been utterly exhausted, had some aches and pains etc. Trouble is I don't think I know the definition of "normal" anymore as this has been going on for many years! I feel about 80 rather than 30! Sigh. This is really hard.

As far as I'm aware I'm really careful and have dropped all gluten. I'm not having any "ready made" stuff so most things are being made from scratch at home. I've now bought all new wooden utensils and new frying pans. The stainless steel pans are the same but should surely be ok?

Only thing is that I still "share my house with gluten". My husband is very patient and understanding but he's put up with a lot for most of our 7 years of marriage as I've not been well for a lot of that time so he does so much. I just feel that it's too much to completely ban him from eating anything with gluten at home. Plus the fact that gluten free flours and breads are so much more expensive and if we both ate them it would really put up the bills.

I try to be very careful about cross-contamination - use foil on the grill pan for toast, have my own chopping/bread boards on the other side of the kitchen etc. I don't know how much more I can reasonably do.

Other than the fact that I've cut out gluten I have been eating "normal" foods - I haven't done anything else to be especially "kind" to my digestive system. Could it be that it's still just recovering and certain foods are hard for it? Last night I had baked beans (gluten-free) but of course they are very fibrous. Agh, I don't know.

Sorry for such a long post. Just needed to get this off my chest in a place where people understand. I think everyone else is fed up of me "going on". Heck, I'm getting bored of myself now!

Thanks for listening if you got this far. Any suggestions/ideas very welcome if you can unscramble anything to answer in my random raving above! Thanks! xx

[Ursa Major]

You really haven't been gluten-free for very long. It does take time to feel better. Having said that, I suspect that dairy products are a problem for you, as they really are for everybody who is gluten intolerant at first, and for many of us permanently. Dairy could be causing the symptoms of bloating and ongoing diarrhea you describe.

When I first went gluten-free, I was unable to eat anything raw. Everything had to be cooked, even fruit, in order to be able to eat it without getting stomach cramps and D. And beans were also a definite no-no.

So, it probably isn't gluten that continues to give you problems, but other foods. Soy is another suspect food I would advise you to cut out of your diet, if you are still eating/drinking it.

You have been ill for many years. It will take months to really feel well and to get your energy back. Be patient, and don't expect too much too soon.

Don't be afraid to tell us about your frustrations, that is what we are here for. I understand that the people around you will get really tired of hearing about your health, I have the same problem. When you need to vent and let it all out, just come here, we will always listen.

I hope you feel better soon.

[mftnchn]

Yes, I agree. We all want to feel better right away to know that all of our efforts to avoid gluten are not in vain. The fact that you have a period of doing better is very encouraging. It takes a long time for the intestine to repair itself so we need to expect that it has a hard time doing its job. Like Ursa said, you may have to make some other changes to help it out at least for awhile.

It seems like a lot of people's recovery is not stable for quite a long time. I actually got worse for several weeks, and had to address some other issues, but am now starting to stablize.

Do you have a gold standard diagnosis of positive biopsy? If so this gluten-free diet is at least what you need to do to get well.

Have you checked your personal care products by any chance? I started being more stably better when I made that change. I plan to challenge it at some point but not until I am really doing well.

[Karen B.]

My hubby had to prove to me that Celiac was sensitive enough that if he kissed me after eating raisin bran without brushing his teeth first, I would have tummy troubles that day. I didn't believe him until he charted it out (without telling me) and then showed me the results. I'm talking a morning peck goodbye, not a major lip lock.

Could you have gotten unintentional gluten from your spouse in this fashion?

[mustluvcats]

My hubby had to prove to me that Celiac was sensitive enough that if he kissed me after eating raisin bran without brushing his teeth first, I would have tummy troubles that day. I didn't believe him until he charted it out (without telling me) and then showed me the results. I'm talking a morning peck goodbye, not a major lip lock.

Could you have gotten unintentional gluten from your spouse in this fashion?

I was wondering the same thing. My hubby drinks beer and the other whiskys that has the grains. I am sure that it is possible. I told him the same thing about kissing me after he drinks. But he was alot more insensitive about it. But you have to do what you have to do, to stay healthy!

[Boffin]

Thanks for your replies everyone. It's good to have your support and be able to come here to talk about all this.

I didn't have the biopsy, but I'd already had positive blood test (Endomysial Antibodies) as well as having all the symptoms so knew that I'd have to give up gluten regardless of biopsy result.

This afternoon I've been a little better again (smile on coming out of the bathroom!! ) I suppose I just have to be patient and not expect too much too soon. As you say, any progress is a good sign.

The kissing issue is something that I've wondered about too and even asked the dietician! She was impressed by me thinking to ask that but didn't know whether it would be a problem. It's tricky though isn't it. I want to do the absolute best that I can, but without becoming a reclusive hermit. Or getting divorced either! My husband is very understanding but everyone has their limits I think! I'll have to try the softly softly approach and see how much gluten I can weedle out of my husband's diet!

I think I'll have to try to be more gentle on my digestion while it's battling to recover, which reminds me, what I really should be doing is planning next week's menu now!

Thanks again all. This is a good place.

[grey]

Getting rid of dairy and soy, and avoiding raw vegetables has helped my digestion. I juice to get nutrients and be nicer to my digestion. I don't know what you're using to flavor your food, but make sure you check your spices and condiments too. I ended up replacing spices (I have a Penzeys spices near me, and you can buy them in small amounts in plastic bags cheap), jams, pb (I went with natural, since most others have soy lecithin which definately increased D for me), soy sauce, mustards.

I still get bouts of D, but I don't know why exactly. They're definately less though and I don't have the emergency/urgency issues when I leave the house.

Are you taking a probiotic? That might help too.

I've been gluten-free since the end of May and while some things have improved, I'm still struggling. Thank goodness for this board! Good luck.

Thanks for your replies everyone. It's good to have your support and be able to come here to talk about all this.

I didn't have the biopsy, but I'd already had positive blood test (Endomysial Antibodies) as well as having all the symptoms so knew that I'd have to give up gluten regardless of biopsy result.

This afternoon I've been a little better again (smile on coming out of the bathroom!! ) I suppose I just have to be patient and not expect too much too soon. As you say, any progress is a good sign.

The kissing issue is something that I've wondered about too and even asked the dietician! She was impressed by me thinking to ask that but didn't know whether it would be a problem. It's tricky though isn't it. I want to do the absolute best that I can, but without becoming a reclusive hermit. Or getting divorced either! My husband is very understanding but everyone has their limits I think! I'll have to try the softly softly approach and see how much gluten I can weedle out of my husband's diet!

I think I'll have to try to be more gentle on my digestion while it's battling to recover, which reminds me, what I really should be doing is planning next week's menu now!

Thanks again all. This is a good place.

[GFhopeful]

I know exactly what you are talking about by being happy about a "normal" bathroom experience. that's too funny. I've been gluten-free since late May (actually more like mid-June because I made some mistakes those first couple of weeks). For me, it is slow but steady progress and improvements. And definitely eating basics only for a while. I am just now adding in more gluten-free foods but before now it was lots of cooked veggies, bananas, potatoes, rice... very safe. Take it slow. You will feel better and better I'm sure. Good luck.

[Boffin]

Thank you for your friendly and encouraging replies everyone. I am so grateful that this board exists and that all of you are here to talk to. Hopefully when I feel better I can help others instead of always being the one seeking support at the moment. I'm actually in the UK but this board is more active than the UK one so I spend a lot of time here.

I still seem to be very much "up and down" at the moment. This morning my D was back again. I don't think that it was quite as bad as previously but I'm not sure if I'm just clutching at straws with that.

However, I have a question for any female coeliacs out there (maybe should start a new thread but I'll try here to start with).

Do any of you find that your D varies with your monthly cycle? For the past 7 or 8 months or so I've been getting pains low on my right side around the time when I expect ovulation occurs. Also around this time I seem to suffer more with gas and D. I think and hope that this pain is "only" ovulation but I'm really scared at the moment that it's something sinister. I've got a scan scheduled for tomorrow to check it out and am terrified of them finding something there as I know that symptoms of ovarian cancer are very like those of IBS and therefore also coeliac disease. Ironically, it was this pain and the fear of OC which led me to searching the internet for possible answers and to clutching at coeliac disease and asking for a blood test - which came back positive!! I was quite "relieved" to have the positive result for coeliac disease, thinking that was my "answer" and that my other pains and problems would go away! However, after three weeks of gluten-free the pain and associated D have occurred again, so now I'm scared again. I know that quite a lot of women can experience ovulation pain but with me it lasts several days instead of just a few hours and I also get the D. Also, this time it seems way too early for ovulation. Ho hum. I'm so sick of being scared and worried and not feeling well. Sometimes I just want to shout: ALL I WANT IS TO BE WELL!!!!!!! AAAAGGGGHHHH!!! So sorry for the rant. Just tired and waiting to feel better.

Agh, the boss has arrived unexpectedly! So I have to go! Sorry for whinging again. Any tips/advice/reassurance VERY gratefully recieved and thanks so much for your advice so far.

[geelet]

Hi- I have also noticed fluctuations around my cycle. It would probably be good to get a pelvic ultrasound if you are concerned with OC, but it sounds for sure like celiac could be causing the pain and the D, especially since you have been gluten-free for such a short time.

In my experience, improvement was very slow. After my diagnosis, I was told by my doctor (who wasn't very knowledgeable) that i should feel better in a few days. It actually took 6 months to see any improvement at all and 9 months to really start to be more like a normal person. I was sick for almost 10 years, so it would make sense that i might not heal overnight!

I still have some ups and downs, but as other people have posted on here it can be intolerance to other foods or a really small amount of wheat that you could pick up at work in a common kitchen, at a restaurant even if you are trying to be careful or at home if it's not completely gluten free. Also, i think celiacs may just have more sensitive stomachs in general.

Good luck and I hope things start to settle down soon for you!

[tom]

Hi Boffin & the other somewhat-newly gluten-free!!

It IS very common to have issues w/ other foods once you are gluten-free.

While gluten was still ingested, those reactions were greater, so the other foods reactions didn't get much notice, imho.

THE . . . . . BEST . . ... THING you can do for yourself now is to start a food/symptom diary.

It can be unimagineably invaluable.

At some point, you'll have some nasty day, and think "ugh I haven't felt this bad in 2 1/2 wks" or however long.

If, at that point, you can easily compare what was eaten that day and the 2 prior days (sometimes delays are up to 3 days), w/ what was eaten before the similarly nasty day wks ago, you WILL find common foods eaten.

Finding these offending foods can be extremely difficult w/ a food diary.

I write in mine still as soon as I've finished eating. And write symptom info throughout the day.

The first step is to always have it w/ you.

I actually have a full keybd on my phone and do it all on this - I'm typing on ph right now too. (Sidekick)

Good Luck to All!!!!!

[GFhopeful]

I can't say what's "normal" but for me I am also still scared that something bigger and badder is what is really at the root of all my symptoms. I wonder if it's just denial in the idea that Celiac is a big deal. I can relate to your ongoing fears about OC as I have similar fears but I think that the further away I get from how sick I was and the better I feel gluten-free, the more I will believe that this is it and i will get better. Hope you feel the same and your scan set your mind at ease. And realize that recovery from Celiac is slow for some - wht lots of little and unfamiliar symtoms that go along with it, in my experience so far.

[Boffin]

Thank you for your replies everyone - and sorry for the whinge the other day. This has been a bit of a tough week!

Anyway, I had the ultrasound the other day. I don't get the "official" results for another 2 weeks but the nurse doing the scan said that she could see my ovary clearly (sorry for info!) but couldn't see anything else there that shouldn't be. I think that must be good right? Although it's not "official" I can't see that she would voluntarily lie to me! (I didn't ask her for the info - she volunteered it.)

Well, I'm still up and down with symptoms at the moment. Yesterday was fairly horrible and I had the D and pains again. However, in a funny sort of way, although it is D, I think it's "better" D than previously - the consistancy seems to have improved somewhat! Sorry! I suppose any improvement must be a good sign mustn't it?!

I suppose that I have to be patient (difficult) and just accept that as I've had digestive symptoms for a good few years they're not all going to magically go away and stay better in a matter of a few weeks?

I just have to keep doing the best that I can. At the moment I keep being really hungry (which I think must be good?!) so I've more or less given up trying to stick to meals at defined times. I am eating proper meals as far as possible but am also having something to eat between times when I get hungry as otherwise I get hungry pains! The dietician has told me that I need to increase my weight anyway and for the time being not to worry about what I eat (other than avoiding gluten of course!)

As for other food intolerances, I expect that's quite possible. I think, and hope, that I'm ok with dairy as I've not noticed any correlation there (I will try to keep a food diary - good idea) but I think my body struggles with some of the more fibrous foods. I've noticed pain and bloating after both sweetcorn and baked beans (gluten-free) so far.

Sorry for the long post again! I'll keep perservering and hoping for things to settle down - in the meantime your support is really appreciated.