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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Should I ask for Elemental 028?


 
09-09-2014, 10:46 PM   #31
helena101
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It sounds as though you are doing very well! What foods are you avoiding at the moment? Did you retest all the foods that seemed to bother you, to confirm whether you did indeed react to them? Did you test each new food for 4 days, or longer?

1800 is very high for calprotectin! My result was >1800, meaning that the lab is able to read levels up to 1800, and I was above that level. I send my samples to a lab in the UK that the Professor recommended, and normal is less than 50. Something WAS up though with the lab at the time, as I definitely had some symptoms (near-liquid stools) but I wasn't SOOO ill (only one BM per day, and feeling completely healthy in all respects other than the BMs), and subsequently Professor Hunter had his patients send their samples to a second laboratory for a period of time so that the first one could tighten up it's technique of measuring calprotectin. Apparently several other of his patients had strange readings at that time. All of this was unfortunate for me, but still, given my symptoms, I was clearly not doing that well without the asacol, even if there was some inaccuracy in my calprotectin level.
The Greek equivalent of the NHS doesn't pay for any of my treatment, neither elemental nor calprotectin tests, nor of course my trips to see professor Hunter. So, I can do calprotectin tests as often as I like, but I have to pay for it.
That's interesting about your reactions not being only loose stools. I am back on lofflex now since January due to the pregnancy, and if my next results are good I am supposed to restart food testing. I was on 2.4g asacol per day for this entire three year period, I currently am on 4.8 because I had mild symptoms during pregnancy and a raised calprotectin afterwards. So I will pay more attention to things other than just my BMs when I start testing foods again.
I know what you mean about being terrified to eat out. This does make traveling very difficult, and even socializing is tough.

You asked about my BMs: 99% of the time they are perfectly formed. I go like clockwork after breakfast and I almost never go more than that (maybe twice a year I have 2 BMs in the same day). It doesn't really vary very much. Sometimes they are softer, which sets my alarm bells ringing, but in general formed, firm, one per day.
According to Prof Hunter, during pregnancy his patients usually do well, and can eat foods they couldn't tolerate previously. After pregnancy the opposite may be the case. So yes, my current high readings are almost certainly hormonal, but crohns can have a momentum of its own, and there is no telling whether my crohns will settle once my hormones do. So I have to keep things under tight control. I am getting another calprotectin done this week, i expect the results to be in by Friday, crossing my fingers it's better than last time. (I had 302 three weeks ago, when I have been consistently below 50 for AGES now). Well done on the 40, that's terrific! It took me a long time to get down to below 100, the entire first year of treatment I was around 150, and only afterwards settled at lower levels.
I have a local GI in Greece, as I can't exactly get on a plane to see Dr Hunter for every issue that comes up. He is just a regular GI though, who believes in drugs not diet. However he has been happy enough to take a back seat and let me try my dietary strategies, and he is there for checkups and should I decide I need to go the azathioprine route. I may decide to schedule one more visit to see Prof Hunter before he retires.
I agree with your suggestion about starting a lofflex thread. There aren't too many people on the forum who have tried this diet and been successful, maybe about 4-5? Still it would be helpful for those searching for an alternative to immunosuppressants and steroids, or for those who are in the early stages of the diet and need feedback and advice. Take care, and well done, it sounds like you are doing really really well.
09-10-2014, 06:09 AM   #32
gemling
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Great! Best of luck and keep us posted on how you do! Just some things that spring to mind to help you along the way:
Make sure that all the dairy-free products (the yoghurt/cheese/spread) don't have any other non-lofflex ingredients.
Rice Krispies are an easy breakfast food or snack that doesn't require any cooking.
It is important to have your rice and potatoes freshly cooked (not cold, not reheated) as the cooling process changes the nature of the starch and the way it is processed.
And finally, take care to transition gradually from EN to solids, I tried to just switch over from one day to the next, and it set me back, so I had to go back on EN.
Unfortunately, I have no choice but to either eat cold or reheat my rice as I work full time and only have access to a microwave at lunch. No other way to do things. But I guess I can note in my food diary if the food was fresh or reheated.

I have been checking my dairy-free products. I got Soya Cheese yesterday, but can't have it because it has maize starch in it. I guess I will have to wait there.

I am transitioning slowly and will also still be having half my diet with via EN as agreed with my dietician. I know that I am probably not following the LOFFLEX diet religiously, but due to my circumstances I am doing the best that I can.
__________________
Diagnosed May 2014
Jul 2014 Blockage caused by flare up
Sept 2014 Finished 3 Weeks of EEN. Started LOFFLEX diet
Mid-Sept 2014 Another blockage
Oct 2014 Started Infliximab


Current Medications:
Infliximab Infusions (Remicade), Loading doses
Azathioprine (100mg)
Pentasa (4g)
Supplements:
Adcal-D3 (1g)
Ferrous Fumarate (420mg)
Multivitamin
09-10-2014, 06:50 AM   #33
helena101
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You can actually cook rice from scratch in the microwave. It takes about 9 minutes to cook a portion. This will mean that you will be using the microwave for a long period of time though, which your colleagues may not appreciate. I ended up buying a small rice cooker and bringing it to work, I could quickly throw in rice, water, salt, a carrot or some broccoli and let it cook at work. Just an idea if you suspect the reheated rice causes problems. That's great that you are working with a dietician to help you along, and that you are transitioning slowly to solids.
Good luck!
09-13-2014, 02:03 AM   #34
gemling
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Well, I think this is the end of my LOFFLEX journey, sadly. I ended up with a blockage yesterday after eating some tuna and a baked potato. So painful. Didn't go into hospital in the end, managed to see it through at home as it wasn't as painful as my previous blockage.

Unfortunately I think it's time to move onto something stronger. My fecal calprotectin came back as 600 before I started food (so whilst I was on the EEN), so it's just not going to work out for me.
09-13-2014, 09:00 PM   #35
helena101
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So sorry to hear this...
I am not sure how well EEN worked for me either, my faecal calprotectin came back at 995 whilst on EN. Luckily I didn't find out till much later, by which time I was feeling much better. It took me another 6 weeks of the full elimination diet (adding foods in one at a time, as the full lofflex diet didn't agree with me) for my calprotectin to go down to 150. I am not suggesting that you do this, of course, and with the horrible pain you must have experienced it probably is time to move up the drug ladder. There is no harm in continuing with the lofflex diet as well though. It certainly can't harm things, and maybe it can help.
09-14-2014, 05:55 PM   #36
ncman
 
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It sounds as though you are doing very well! What foods are you avoiding at the moment? Did you retest all the foods that seemed to bother you, to confirm whether you did indeed react to them? Did you test each new food for 4 days, or longer?
Hi Helena,

Well I havenít retested any foods yet. Iíve been well on what Iím avoiding so hoping can stay that way. Yep, 4 days apiece, twice each day.

Iím hoping the calprotectin was normal?

At the moment, Iím avoiding: yeast, wine ( as the manufacturing process includes some yeast fermentation), nuts, apples, oats, citrus and eggs, banana, tea.

What portion sizes did you use to test foods? As I was never really told, I estimated at trying roughly 100g per serving.

Yes, ok thank you, I go between 1-3 BMs/day, occasionally 4, but all formed.

Have you ever been told to take vitamin supplements over your three years?

But itís strange, there has been one occasion that I had a looser motion, and couldnít attribute it to the food, so unsure of itís cause - possibly stress? But 99.99% of the time for me itís all good.

May I ask, why are you considering Azathioprine? Professor is adamant that diet is the best form of treatment, and itís been shown that Crohnís is a food-related illness. Only the other day I came across a review of the book ĎThe Complete Guide to Food Allergy and Intoleranceí by Professor Jonathan Brostoff where it stated:

ďresponses to food in Crohn's disease where an inflammatory reaction to food has now been directly observed with endoscopy (see p157).Ē

Which is something I donít find many doctors openly admit.

Gemling - do you think it was a reaction to something in the LOFFLEX diet or maybe itís been too early for you to get off the elemental diet? As for me, and as Helena mentioned above, it took a long while for the inflammation to properly settle and get under some sort of control.
09-14-2014, 07:12 PM   #37
helena101
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I think 100g per serving is ok, but too much for oats and nuts. I take it you didn't also see a dietician that works with Hunter? With oats she had recommended 2 50gram servings, which was just about ok for me - but once I finished testing them I found I was best off with just a single 50g serving per day. I think with nuts she had recommended 2 x 30g servings, which again was double what I could eventually tolerate. For the fruit 100g portions are fine, for eggs just 2 eggs etc. But maybe the fact that I was having smallish servings of these foods sabotaged my attempt to stop the asacol. Maybe I couldn't tolerate them at all in fact, but with the help of a little asacol I could. Once the asacol was out of the equation I flared up. It's possible anyway.
I haven't been told to take vitamin supplements, but I do take vitamin D. Since I have been on lofflex throughout my pregnancy I have also taken supplemental calcium, as I am not having any dairy products.
I have had a few random issues along the way these three years, where 1-2 days, or even a full week, I suddenly have the odd symptom, and most often I can't really explain it through food.
Ideally I would like to manage my crohns with little to no meds. Wouldn't we all? But of course I am aware that this may not be possible.
I hope you have continued success on your diet!
09-14-2014, 07:13 PM   #38
helena101
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Still no results on the calpro test by the way, I will post again tomorrow. Fingers crossed it's ok and I don't have to do EN again.
09-15-2014, 03:56 AM   #39
helena101
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My results just came in at 227. So, an improvement from 3 weeks ago (302), which is the important thing. At least i seem to be getting better, not worse. Of course I would have prefered a lower number, but as it is things are too worrying.
09-15-2014, 09:27 AM   #40
ncman
 
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I saw the dietitian during the E028 period, and then right after I'd finished testing most things. It's good to get a second opinion about the portion sizes, I think for oats I did 50-75g. The 100g is a rough rule I used, flexing it down where appropriate; for example, alcohol for me is 25mls x2/day. I just wanted to make sure I was getting enough of the food in question!

Maybe when you test again following the LOFFLEX, 'go to town' a little more so it's more definitive which foods you can cross off the list!

Well, on the positive side, at least the calprotectin is moving in the right direction. But, even though it is raised, are you still well? And is frequency still only once a day?

Professor did mention that he had a handful of patients who could not come off the mesalamine. But still, I'd rather stick with the Pentasa rather than some of the other options in the drug cabinet.
09-15-2014, 12:34 PM   #41
helena101
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Absolutely. If I manage to stay well on mesalazine plus diet I will be very very happy.
And yes, I feel very well, fit, strong, healthy, and only one formed BM per day. It's looking like this was just a blip while my hormones readjust.
09-16-2014, 05:23 AM   #42
Spooky1
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Wow, Helena, what good news. One BM per day, calpro test looking better and you're feeling fit and well. That's great news. I'm wondering though, I always had 6 - 10 days of nightmare BM's each month. No change in diet but just the change in hormones really changed things for the worst. Hope you don't suffer like that, and good luck with mesalazine and diet.
09-17-2014, 11:34 PM   #43
helena101
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Thanks spooky1! I think it's pretty common for symptoms to worsen for women around the time of their period... Those hormones certainly can have an impact.
Take care,
09-18-2014, 10:34 AM   #44
Spooky1
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I swear it must be better to be a bloke if you have to suffer Crohns, lol. if I remember rightly I found the pill or the contraceptive jab even out my hormones and didn't suffer quite so much.
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