So Impatient For Signs Of Improvement

[Boffin]

Hi everyone (again!)

Well, having had the positive EmA blood test (way back in March) and waiting and waiting for the biopsy, I finally decided to just go gluten free without biopsy. I had my last gluten (as far as I'm aware) on Saturday and became totally gluten-free on Sunday 1st July. I know that's hardly any time ago, but I keep reading of people saying how they noticed digestive improvements within a couple of days. Here I am on day 5 and had rubbish D again this morning. Sorry for being graphic (I suppose this is one of the few places where it's, hopefully, ok to give details on such things) but I'm still having the runny smelly D, mostly just in the mornings, basically same as it's been for ages.

Also my tummy is still bloated, following the same pattern as previously. I'm most bloated of all in the evenings when I really seem to puff out after dinner, and in the morning it's gone down but the part very low down, below my belly button still seems overly round and quite firm really. I'm generally quite skinny but this low down part always seems to stick out wrong.

I'm still getting a lot of the gurgling going on and can feel stuff moving. Most of that is also quite low down too. Can anyone relate to this? Do I just have to be patient? Can anyone else say "Oh yes I was like that too but it did go after two weeks/one month/whatever?

Just for info: I am female and 30. My meals have been as follows: -

Breakfast: gluten-free Cornflakes with milk followed by home-made gluten-free bread toasted with jam (plus fruit juice and tea).

Lunch: home-made gluten-free bread with beef/ham and mayo/lettuce, followed by banana and orange.

Dinners: roast chicken with potatoes & carrots/chips and peas/as soup with sweetcorn & rice noodles, followed by home-made gluten-free chocolate cake.

I think that I'm being as careful as possible but just wondering if anyone can advise please.

I am due to see my doctor Tuesday next week and am beginning to have those niggling "should I have had the biopsy" type thoughts!

Sorry for the long post! Thanks in advance.

[Eriella]

First of all, welcome to the board! Your stomach is healing, and that takes time. The only source of potential gluten I see would be in the deli meat, roast chicken, soup, and chips. Google the brandnames and "gluten" to find out.

I felt better 5 days after going off gluten, and within 2 weeks all of my symptoms were gone (I was struggling with C). Remember that everyone is different, and it can take 3 months to a year to heal.

What really helped me was going on a super basic diet (the dying dog diet-- what we fed my dog when she was in her last months) of rice, boiled beef, carrots, peas, and potatoes. You start boiling the rice, 10 minutes later add the beef, 10 minutes after that add the veggies, then cook 10 minutes and you are good to go. That and bananas was all I ate for 4 days, and then I started to eat simple, unprocessed and naturally gluten free foods like rice, grilled chicken, steamed veggies, potatoes, and eggs. After a month of that, then I introduced some of the gluten free processed products.

I found that getting out of my "I need cookies, NOW!" gluten-addiction before I tried to find substitutes helped me out. I also learned how bad my stomach reacts to heavy preservatives. I also found that most of the gluten free merchandise is expensive and not that good. It is better for my stomach, pocketbook, and taste buds if I use corn tortillas instead of bread, or eat a Hershey's Bar instead of gluten free cookies.

[Boffin]

Thank you for your quick reply and for welcoming me to the board. This is a good place.

The chicken was bought fresh from the butchers and roasted at home so that should be ok. The meats were also bought and sliced at the butchers - only potential CC would be on the meat slicer I suppose. I will have to ask the butcher about that as they are helpful there. Soup we also made at home from fresh ingredients so ought to be ok.

I do need to buy some new wooden utensils so they could be a source of some gluten, but it must be a miniscule amount. I hope to buy some new stuff at the weekend.

My dear husband is being incredibly wonderful and patient but he could be a source of CC. He eats the same evening meals as me but still has his own (gluten-containing) cereal and breads. He's really good in keeping stuff separately, preparing my sandwiches on a separate board first etc, but we do still kiss (of course!) and I suppose crumbs can get everywhere. Perhaps he also doesn't always wash his hands between preparing his sandwiches and peeling veg for example.

Thing is that he's been so good, making me gluten-free bread (I haven't the strength to mix the dough), gluten-free cake and being really patient, but this is tough for him too and I hesitate to order him to wash his hands and even start telling him to "wash his mouth out" before he can kiss me. Poor man!

Thanks for the food suggestions. I will try something simple with beef, veg and rice next week. (We tend to plan our weeks' menu ahead to save time and waste so this week is all booked up with chicken! )

One other fear is possibility of lactose intolerance. If I have that does the lactose do damage in the same way as gluten? Or is it just that the effects are unpleasant but my guts would still heal?

Anyway, thanks again for your reply. I look forward to hearing from more people too.

[happygirl]

Welcome to the board Happy you have found it.

There are many, many, many who took weeks/months to see any improvement. It took me about 2-3 months before I was somewhat normal functioning, and then another couple months until I felt like I had regained some energy, etc.

Best of luck. Another thing to consider....some Celiacs have trouble with dairy, especially until their villi has healed. You might want to limit dairy and see if it helps. Many Celiacs are "temporarily' lactose intolerant until their bodies have healed.

[Eriella]

Chicken is great to eat while you are healing, the only reason why I ate beef was it was cheaper and I was anemic. Also, homemade breads/baked goods are much easier on the system than store bought, so you most likely are just experiencing healing pains, not a reaction to your food. It will get better.

As far as milk goes, I love dairy, but I found that I really needed to go off of it for awhile. Your body won't produce enough, if any, lactase (the ensyme that breaks down the sugar lacotse, the sugar in milk) to digest milk until you heal, so it is best going dairy free for 3 months (at least), then you can figure out if you have a lactose digestion problem (which you can take medicine for) or a casein (the protein found in milk) digestion issue. If you have a lactose issue, you can eat hard cheese, but not milk. If you have a casein issue, no dairy whatsoever (and it is hidden everywhere!). Or, best case, you have no milk issues.

[Boffin]

Thank you for the replies and the welcome. This is a lovely friendly place.

I've suspected that I might well have to ditch the dairy for a bit, as I've read that lots of people do, which will make life hard for a while. For a start, the home-made bread that we do uses milk in the recipe. Of course that means that I've been eating more dairy than I'd usually eat, which might be why I'm having such consistent problems at the moment. I will have to try to find a different bread recipe...

My poor husband will go spare as he is "head chef" in our house. Prior to the coeliac thing I already couldn't eat nuts, fish, mustard and quite a lot of fresh fruit! Now I've had to cut out gluten and if dairy goes too I'm not quite sure what I'll eat. Still necessity will force me to learn.

I understand that lots of people are lactose intolerant to start with until the villi heal, which makes perfect sense. Hopefully if this is the case with me it will improve but in the meantime, does having lactose actually do harm (like gluten does) or prevent healing, or is it just unpleasant?

I mean, would I be safe to try dairy after one month, two months, three months etc to see if the intolerance has gone, or would that set back recovery?

Thanks for listening.

[Eriella]

Lactose causes very little harm-- that is why you see lactose intolerant people eating ice cream and other form of cheating! It just makes their stomach ache. Casein could cause more of a problem, but I am not sure to what degree (I know my mother and sister have lactose issues and cheat, my aunt has a casein issue and we do not even think about having milk near her).

There is no harm in trying, and if you can eat it, ENJOY! If you get sick, try to figure out if it is casein or lactose. If it is casein . If it is lactose, the pills work wonders.

[Boffin]

Thank you for the tips. It's good to know that at least lactose doesn't do harm as such, just has unpleasant "side effects"! I think I will try going without dairy for a bit to see if my symptoms go.

Just a simple question - can anyone tell me if rice milk can be substituted for "normal" milk in bread recipes?

Thanks again!

[aikiducky]

Rice milk is basically just water thickened with rice flour. You might just as well substitute with plain water.

Milk adds some fat and protein to the bread, so if you leave milk out, you might want to add one egg, or some flax seed, or a bit extra oil. But honestly, I can't have ANY milk at all, and I've found that most recipes work just as well without. Your recipe might work fine with water, just give it a try.

Pauliina

[gfpaperdoll]

I use coconut milk in all my recipes. But I will say that I think that at first that you should not be eating any bread of any kind, just plain whole foods. After a time your other food allergies might get better or go away, a lot of mine did.

For about 3 to 6 months you should not eat any of the replacement bread type things & NO dairy.

You will notice a hugh difference.

You are going to have a problem with cross contamination with the gluten in your kitchen, just be aware of that.

welcome & it will get better.

[holiday16]

Regarding the sliced meat, I used to work in a place years ago where part of the business was slicing deli meat. I'm sure it is different in different places, but the blade wasn't cleaned until the end of the night because you had to take the whole outer section off to really clean it. I was just talking about this the other day with my best friend because we worked together at the same place and I couldn't remember how often it was cleaned. I remember it was pretty dirty by the time it was done. I do know that Krogers recommends not eating their deli meat because of cross contamination from slicing as well as at least with ours it's located right next to the bakery.

I get sliced meat from a meat place near us and I didn't even think to ask about the slicing. We've gotten some sliced meat there with no problems, but it's possible they clean the blades between meats since they slice so much to go in the case/fridge ahead of time. There is a lady there with a father that has celiac so she's been as helpful as she can. I'll have to ask the next time I go in...

[Boffin]

Thanks for all the replies. It's good to hear from you.

I think the cross contamination is going to be a problem. I want to try to get new utensils, toaster, chopping board, frying pan, seive, etc but the trouble is that we have a rather tiny kitchen so space to keep things is an issue. Also I want to keep all this stuff and prepare my food on the other work top so I'll have to try to make space there... Trouble is that although my dear husband has mostly been very supportive this all impacts on him too and he's had a lot to put up with over many years. He's got to the point now where he feels that I'm getting rather obsessive. The truth is that I am getting obsessive but that's because from all that I read I will HAVE to be obsessive. It's hard to sort this out without upsetting people I think.

I will ask in the butcher about their meat slicer as they are very helpful and knowledgable there. When I asked about gluten free sausages he told me that they make batches and completely strip down and clean the mincing machine first, which was good to know.

Regarding bread, and the suggestion that I should avoid it and only eat natural whole foods, sorry to be naive and all but my brain is muddled and won't think today. Please can you suggest what I should eat for breakfast and lunch? I just can't think at the moment. Does the fact that we make our bread at home from gluten and wheat free flour not make it ok? I thought it was maybe just best to avoid the shop processed stuff, but please advise if I'm wrong as I want to try to do the best I can to recover quickly and get "me" back again.

If I do eat the wrong sort of stuff (but still avoid gluten) will it do harm or set back my recovery in any way?

Sorry to ask so many questions! I just really want to do the best I can. The actual "eating things without gluten in" doesn't seem too bad, but I have to admit that I'm struggling with the cross-contamination issues and the avoiding other stuff too issues!

Thank you all for your help so far.

[Eriella]

As far as sharing pots and pans, you SHOULD have new stuff, but realistically it is not always possible. At least have a new toaster (or get toaster bags) or wash the toaster oven tray thoroughly between uses, bread machine pan and rotater, and a new colander. Everything else should be fine if you throughly was it in between gluten/non-gluten.

A lot of what you will read on this forum will fall into two categories: what is ideal and what is practical. It is ideal to have new appliances, but not always possible; it is ideal to have a gluten free kitchen and household, but not always practical; it is ideal not to eat anything but whole foods until you heal, but you may not be able to go that long without eating 'normal' foods. I know I couldn't. It's not that bread replacements are bad for you, just that they are not the best and healthiest thing for your stomach as it is healing. However, depression is worse than not doing what is the healthiest thing for your innards, so denying yourself all of your 'normal food' is not what is always healthiest for you. I know I was depressed about all the food that I lost, but eating a gluten-free pizza or waffle helped a great deal. Look at the big picture and how you react to eating or not eating certain foods, and then figure out what is best for you, not just your stomach.

Because I generally don't like bread (mainly because for 2 years if I ate bread I would be in pain for 2 weeks ), I have found that it is easy for me to eat without bread replacements. I eat Health Valley Rice Ems or Envirokiz cereal with fresh fruit for breakfast 1 and an egg quesadilla for breakfast 2 (I work at 5:45 am and need finger food for breakfast at work, then am starving when I get off at 10). For lunch I have peanut butter and carrots and apples, rice and beans, or leftovers. I don't need the bread to eat, but you might. Remember not to let the diagnosis shape who you are. If you need a sandwich, by all means, eat it.

[Boffin]

Eriella, thank you so much for your very rational advice. What you say makes perfect sense. I suppose at the end of the day I have to do the absolute best that I can but preferably whilst maintaining some small shred of sanity (not much left! ) and avoiding getting divorced and becoming a hermit.

This advice (below) is so simple, but so right so thank you!

Remember not to let the diagnosis shape who you are.

This whole thing does seem to have rather taken over my life, despite the fact that I've always been keen to still be "me" and not just "a coeliac" (and I hope that doesn't come across wrong as it's not mean to be rude! I'm typing in a hurry as I'm at work and, for once, the boss is in!)

I will carry on trying to do my absolute best - may whole aim is to get, and stay, as well as possible, but that's not got to dominate every thought of every minute as it's been seeming to recently.

I think I will have to go for the softly-softly approach to try to avoid cross-contamination, but subtley! I'll keep you posted. Hopefully this will get easier as I think that's what people say.

As I've said, the actual diet itself is not really all that hard. It is not that difficult to avoid eating things with gluten in although you have to think and plan more - it's the contamination and other implications that make it harder. I'm used to avoiding other foods like nuts and fish and it's no problem. It's just the risks of cross contamination that make it so much more difficult with gluten!

Anyway, thanks again very much for your advice. You really have helped.

All the best (signing off as without internet access over the weekend!)

Boffin x

[cruelshoes]

Just a simple question - can anyone tell me if rice milk can be substituted for "normal" milk in bread recipes?

I use rice milk quite regularly when I cook for my SIL who is lactose intollerant. It does work quite well in all the recipes I have tried. One word of caution, however. Not all rice milks are gluten-free. At least one of the rice milks that I know of uses barley in its processing.

Yes, it does seem sometimes that it is taking FOREVER to get better, doesn't it? According to my GI doctor, it can take up to 2 years for some people to heal fully. If you are taking baby steps toward getting better, that is good. When I was diagnosed, I had total villous atrophy - I had no villi left. The doctor on staff said I was literally days away from death. I had to be hospitalized for a week and fed through an IV for months due to malnutrition. At first, I could not tolerate much of anything. My dietician had me go on the RAB diet (rice, aplesauce and bananas) for a week or two. As boring as that sounds, it does work. I started to see changes in 3 days, and within 3 months I had been relieved of most of my simptoms. You will begin to notice improvement in time.

HTH.

[aikiducky]

Eriella really had a lot of sensible practical advice.

My husband had a hard time believing how careful I need to be in the beginning as well. Let's face it, I had a hard time believing it and I was the one suffering the consequences! It took some time but nowadays (almost three years in) he's on board, though I sometimes need to remind him of things like not eating cookies above the computer keyboard... In the kitchen he's good but this one thing tends to slip his mind...

Anyway, I just wanted to say that you could always direct your hubby to this thread if you feel you need some back up. The fact is, you do need to take cross contamination seriously, because otherwise you will keep getting sick from time to time, and that will only slow down your healing time.

But it gets easier once you've replaced the things you need to replace and have arranged your kitchen the way you want it, and have developed a good routine with your family. After a while it just starts to feel normal and you don't need to think about it so much.

Pauliina

[Nancym]

Give up dairy products until you're healed, then try to add them back in. If you have villi atrophy then you're probably lactose intolerant (at the least).