A little advice would be very welcome please!

[charlie fh]

That helps massively !

and would it be good idea to take my vit d , magnesium, vit b etc at different times to the steroid or is this fine.

Cheers!

[tex]

I've never even considered that (since I've never taken budesonide), but yes, budesonide has a plasma elimination half-life of 2-3.6 hours, so theoretically, at least, since corticosteroids should always be taken first thing in the morning, an ideal arrangement would be to take the budesonide first thing in the morning, and take the vitamin D. magnesium, and B vitamins in the evening, with or after your evening meal.

Tex

[charlie fh]

Good to know. Thank you.

Im also hoping to do the entero testing at some point when i can afford it, the exchange rate has gone through the roof , partly because of the useless goverment in UK and strong dollar. Would this be counter productive if im on budesonide as it may give false readings?
Im also curious, how long it takes generally for leaky gut the resolve itself with or without budesonide and how one can tell when it has even if there is active food sensitivities.

Cheers all the best, Charlie

[tex]

In general, if we've been using budesonide too long, some results on the EnteroLab tests will begin to show false negative values. In most cases, if we've been using budesonide for less than about six or eight months, the test results usually won't be significantly affected. But if we've been using budesonide for a year or more, many/most of the results will be skewed toward the false negative end of the range, so that they can't be considered accurate. This is true for any test based on standard ELISA laboratory testing methods, including the celiac screening blood tests that most doctors use.

Incidentally, I don't see how the UK government could be any more useless than the US government, considering how things are going here. I have a hunch we've just been lucky on the strength of the dollar. But looking at how negatively that affects our balance of world trade, maybe that's not so lucky, after all.

Tex

[charlie fh]

Hi Tex , Yes thats a good point about the US gov, i think they are all as bad as each other in the end. God help us!
sorry i have ANOTHER question... i feel like a new one pops in my head every minute at the moment .

Im curious as to what you think about things like Chlorphyll, slippery elm and various other supplements to promote healing while im on budesonide and the inflamation is lowered . Ive read quite a few different articles on leaky gut but they suggest so many different things i dont want to waste money on a fad product. Chlorophyll sounds interesting but is there any proof to these things??. What would you suggest to go along with avoidance of certain food?

Also im quite sure ive got some sort of low acid problem which ive probably had for years without really knowing it. I didnt realise that if you have acid reflux then your more likely to have low stomach acid which inhibits absorbtion of minerals etc. or so ive read... What are you thoughts on Apple cider vinegar or betaine to balance the acid problem.

Any and all advice is much apreciated !
Thanks
Charlie

[tex]

Yes, many so-called natural products have anti-inflammatory properties. If any of those actually worked for MC patients to help bring them to remission, surely you realize that there would be thousands of posts on this board from happy users. The problem is, to have any effect powerful enough to actually benefit the inflammation levels present when MC is active, would require about a wheelbarrow full of that stuff every day. To get a noticeable benefit, you would have to ingest so much that it would cause severe digestive problems. The fewer supplements we take when we're trying to achieve remission, the faster we reach remission. Some of those supplements can actually prevent some of us from ever reaching remission.

While some individuals claim to derive benefits from taking apple cider vinegar regularly, apple cider vinegar is such a weak acid that if it successfully lowers the pH of your stomach, you have a serious stomach acid problem, and apple cider vinegar is unlikely to resolve it, although it might help, since it's better than nothing. If you want to resolve a low stomach acid problem, learn how to find the proper dose of Beltane HCl, and use that.

Neutral pH is 7.0. Normal stomach acid pH levels are 1 to 1.5. As I recall, apple cider vinegar has a pH level of somewhere between 3.0 and 4.0, not near low enough for good digestion.

Tex

[charlie fh]

Hi Tex ,hope your doing well and having a nice christmas.
Unfortunatly i didnt suit budesonide and came off it after 2 weeks . I didnt notice any improvemet in that time anyway . Im still havinf trouble reaching a firmer stool. Like ive said in previous posts im getting generaly semi formed soft stools and have done thepast year. i dont show obvious reactions to foods that may not suit me.. for instance i could eat and bowl of pasta and have no signs of disagreement at all. (ive been completely gf for 2 months now btw so am not eating pasta) im keeping a food diary and documenting any time i have looser bowls or lots of gurgling/bloating. I feel i must have healed a fair bit the past year but cant put my finger on why im not reaching a full state of remission . or firmer stools . Am i missing something? Feel a bit like im going around in circles and just want some confidence in my gut. The only thing ive really noticed is that i definatly have a "nervous stomach " as my grandmother would call it. My stool is always much looser if im nervous /anxious in some way.

All the best
Charlie

[tex]

At two months after cutting gluten out of my diet, I still couldn't accurately detect food reactions, either. But after about three months, I began to notice that certain foods bothered me more than others. The reason for this is the fact that gluten (anti-gliadin) antibodies have a 120 day half-life. Consequently, it takes a long time to get all the anti-gliadin antibodies out of our system. The amount of time required depends upon our antibody level when we cut gluten out of our diet, because if we been reacting for years, that level can be very high, especially for celiacs. And gluten dominates reactions, so until we clear all the anti-gliadin antibodies from our system, we're unable to accurately detect food reactions. That rule doesn't necessarily apply to some of us, who aren't all that sensitive. A few of us (a very lucky few), are able to reach remission in a matter of days, but that's not possible for most of us. For some of us, especially if we been reacting to gluten for years, it plays havoc with our immune system.

If you're still experiencing the loud gurgling, occasionally, your diet may be cross contaminated, even if the cross-contamination level is very low. The reason for this is that after we remove gluten from our diet, our immune system becomes more sensitive to it as it continues to search for it in our meals, and our immune system becomes capable of detecting even a few molecules of gluten. Look at your reaction journal and note what you ate 3 to 6 hours before the gurgling started. You may be able to locate a clue as to where the problem is originating. If you're eating any commercially processed foods, there's also a chance that they might be cross contaminated, even though the label certifies them as pure. And if you ever eat out, research shows that there's a better than a 50% chance that any meal you order at a fast food restaurant is cross contaminated.

There's also a possibility that at two months, you just haven't had enough healing time, or enough time to get anti-gliadin antibodies out of your system.

I hope this helps,

Tex

[charlie fh]

Hi Tex

yes this is all very helpful , Thankyou for your detailed response!
It would make sense that something is still irritating my gut but its very strange and hard to put my finger on. I can eat the same food for 2 days straight and one day may be fine while the other is off, and i get unsettled gurgling/rumbling sounds. I also notice that sometimes when i have a firmer stool i get more gurgling sounds almost like trapped wind.?!? it doesnt make any sense.
Perhaps your right and its just not been long enough off gluten.
One thing i did wonder after reading up about Cholestyramine is that i may be getting excess bile in my colon which could be irritating the lining causing gurgling . I do suspect that i may have a malabsortion problem as i get a lot of the signs like pale/orange or loose stools . I will try and speak to my doctor about trialing some Cholestyramine and see if that helps me get over this final hurdle .. Ive finally managed to get an Enterolab test which im waiting to do . Hoping this can shed some light on my situation.

All the best from London .
C

[charlie fh]

Hi Tex and everyone..
Hope yourdoing well!
Just wanted to get some advice on my recent enterolab results which are slightly concerning and puzzerling at the same time .. here they are.

Fecal Anti-gliadin IgA 50 Units (Normal Range is less than 10 Units)

Fecal Anti-casein (cow’s milk) IgA 41 Units (Normal Range is less than 10 Units)

Fecal Anti-ovalbumin (chicken egg) IgA 99 Units (Normal Range is less than 10 Units)

Fecal Anti-soy IgA 107 Units (Normal Range is less than 10 Units)

Mean Value 11 Antigenic Foods 36 Units (Normal Range is less than 10 Units)

Food to which there was no significant immunological reactivity:
potato

Food to which there was some immunological reactivity (1+):
Rice
Beef
Pork
Tuna

Food to which there was moderate immunological reactivity (2+):
Corn
Chicken
Walnut
Cashew

Food to which there was significant and/or the most immunological reactivity (3+):
Oat
Almond

Ok , i should point out that ive been relatively stable the last year with the odd bad day but mostly ok with semi firm stools once a day.. Ive been completly off gluten for over 4-5 months now but have been able to eat most other foods in moderation and not consistantly ..

What i dont understand is the Oats in +3 and dairy 41 units ... Ive recently (the last month) started having very good qualitly gluten free porridge or i think you call it oatmeal with yoghurt for breakfast and noticed a big improvement with how settled my gut is... Ive also noticed slighly firmer stools and MUCH less gurgling etc.. This cant be a bad thing can it? Im a bit unsure what to do regarding this and i would like you or Gabes advice if possible. Also regarding everything else ... what are you thoughts .. Is there anything that grabs your attention as bad?

I also got the fat malabsorbtion test which seems quite high and im struggerling to understand why and how that might be ... and what i should do about it???
Quantitative Microscopic Fecal Fat Score 897 Units (Normal Range is less than 300 Units)

There isnt much info from enterolab regarding this apart from info on the pancreas enzymes /bile salts etc.... How do you think i should go about resovling it? One thing that struck me was that i recently had my bloods done which showed high cholesterol and slightly low B12 even though i take methyl B's. This must be linked in some way. Would it be a good idea to take Cholstyramine? One thing i have always noticed since being diagnosed with CC is that my stool can tend to be lighter/orange in colour some days ... Anyhow apologies for the long message , Any and all help is apreciated.

All the best
Charlie

[tex]

Your anti-gluten (anti-gliadin) antibody levels are still fairly high because it takes a long time for gluten antibodies to fade away due to the fact that they have a 120 day half-life, whereas most food sensitivities have a five or six day half-life. The other antibody levels are high because apparently you are continuing to eat those foods, and this is why your fecal fat score is high.

The higher our inflammation level, the higher our fecal fat score is likely to be, although there isn't a well defined association. Oats contain a prolamin protein (avenin) that's very similar to gluten, only a weaker form, so the vast majority of us react to oats, although there are a few exceptions. The longer we've been reacting to a particular food, the higher our antibody levels tend to be, because they increase relative to the length of time over which we've been reacting.

Some of us are asymptomatic to certain food sensitivities, meaning that we have no symptoms, although the foods continue to cause inflammation, similar to the way that many celiac's are asymptomatic, and this may be why you haven't noticed severe symptoms because of oats and dairy. Dairy sensitivities can be insidious. For example, I have no digestive system reactions to dairy, but I produce antibodies to it, and if I continue to eat it, I develop osteoarthritis symptoms.

I hope this helps.

Tex

[charlie fh]

Hi Tex . I understand but it still puzzles me that ive improved since eating oats !??. i even had porridge while at the beggining of my original bad flare a year ago and it helped me stabalize . Do i trust my body or do i trust the results from enterolab? How is anyone who is asymptomatic meant to understand what causes them inflamation if they show no signs of inflamation ? This is the case for me right now. ive read many times on here that if its working for someone they should stick with it. If i hadnt done the test i would stick with it. Could it be that i started eating oats shortly before i did my test for enterolab and that it created a spike ?? I should add that i hadnt eaten oats for over 6 months before i started recently ..
i feel the fat malabsorbtion is more likely due to the damage caused by my orignal flare and a lack of bile salts .. i will trial bile salts and enzymes to see if this helps. I have had gallbladder /acid problems which makes more sense.
I understand that theres not a one size that fits all so trying to keep an open mind
Any info is welcome

Thanks!!

[Gabes-Apg]

hi there

your soy result is fairly high - be careful with Gluten Free products (baked goods, cereals etc)
and be careful what oils you use for cooking

my suggestion - follow the test results - reduce the inflammation levels in your body. to attain good healing you need to calm the inflammation (although it may not be causing diarrhoea)

[charlie fh]

Hi gabes !

Thanks for your input . I dont go near soy and never have really which is lucky. I will endevour to avoid the things that were high on my results. I have to admit it has left me rather deflated as i thought i was on a good path.. i have felt rather well and have had been in state of remission for a under a year. I understand things need time to fully heal though.. i think gluten has been a big one for me .
In terms of re introducing foods .. how long should i give for something like oats or egg which doesnt give me any obvious symtoms but scored high on the test? This is what im struggerling to get my head around. How do i know when its doesnt cause any symptoms in the first place ?? sorry youve probs heard this a million times . But any info is great .

[Gabes-Apg]

I cant provide an exact type answer for you
the time to heal depends on many factors, age, other health issues, lifestyle etc.

to give the gut a good chance of quality healing I would encourage 6 months of minimal inflammation and Vit D3 & magnesium supplements
Even though you haven't had obvious symptoms from the food, the results of your test show high reaction levels
calming the inflammation this will also help regarding the Vit B12 situation.
as we age and the longer we have ongoing inflammation, the ability to heal gets harder. being in constant state of inflammation is high risk of additional auto immune issues occurring.

Re the B12 - I actually use a lingual form of methyl B12 rather than tablet I have struggled with absorbing B12 long before my MC diagnosis .
A small dose of cholestryamine will help with the stool issue (and maybe the cholesterol) is the high cholesterol the bad cholesterol or good cholesterol?
if you do this make sure you you take any supplements at least 2 -3 hours away from the cholestryamine.

If you do every try eggs again, go free range ideally no feed supplementation (chicken food is very high in gluten and soy based ingredients)

Soy is used everywhere - in Australia vegetables are sprayed with vegetable oil (soy) to help them keep fresh in transport, refrigeration and on the shelf. the same with mainstream eggs, the shells are sprayed with vegetable oil to help them last longer if you are boiling eggs you are having soy.
cheaper brands of olive oil can have soy oil in them