When its healed.

[pretender]

When we have had our second biopsy that says our gut has healed why can't we go back to notmal foods?

[Mia1057]

Hi there because you will just trigger the autoimmune response and start the damage all over again plus once you have been GF for a while you may have much greater symptoms if you eat gluten. It's important to realise that coeliac disease is not an allergy it is an autoimmune disease of which gluten is the trigger.

[pretender in reply to Mia1057]

The reason for Coeliac Disease to be triggered is still unknown, A Professor quoted this.I had been on a Coeliac diet (total gluten exclusion) for four years and having eaten wheat & gluten last week had no reaction at all. Having attended a DLA Tribunal last month I was not surprised by how little the Doctor knew about CD or Allergies and she guided the Tribunal judge the wrong way of course.

[jezabelle in reply to pretender]

Can you get DLA if you are coeliac?

[pretender in reply to jezabelle]

DLA is in two parts, 1) Care, 2) Mobility. Which is why in my case it has been used against me by those who cannot distinguish CD from an allergy.

1) Care is not about eating the right foods to stay healthy, its if you can cook a meal for one, wash/bath yourself. No bowel or bladder problems etc.

2) Mobility, if you can walk 200 metres with out difficulty. if you walk less than 40 yards in pain and 130 yards before collapse they change the goalposts.

My associated condition "Formaldehyde Allergy" is dismissed because it has its restrictions but may lead to lead to legal action.

[meanioni]

In a coeliac, when your body's immune system detects gluten in your gut it will react by attacking the gut lining (this is the autoimmune response). So even if it has healed, eating gluten will damage it again.

There is no cure currently and the only option to prevent further (and potentially permanent) gut damage is to have a gluten-free diet.

[pretender in reply to meanioni]

So once your gut has healed and you go back to eating the same foods and going to the pub for a pint how long is it expected to take for this damage to manifest itself into coeliac symptoms?

If anything says gluten free then I avoid it, totally.

[meanioni in reply to pretender]

The damage is immediate. Your body's immune system sees gluten as "alien" but the reaction rather than dealing with the alien molecule is to attack your gut. If you keep consuming gluten your gut will be damaged irrepairably and in addition to increasing your risks of malnutrition and deficiency-related diseases (such as osteoporosis, scurvy, rickets), you also increase your risk of bowel cancer.

It may take a few days before you get the same old symptoms, or it may be immediate but the damage is done with even the tiniest amounts of gluten.

If you are having a pint, have a pint of cider as this is gluten free.

Why are you avoiding gluten free? You need to be eating gluten free!

[pretender in reply to meanioni]

"The damage is immediate" ?

Having had a Dexa scan in 2008 I had Osteoporosis in 2011 another Dexa scan Osteopena I reduced dairy intake during those years so very strange.

I could not handle cider because it contains glucose syrup in most well know brands, and gluten free foods with 20 or 200ppm has to much gluten for me to tolerate.

[pretender]

I find this very strange, while on holiday in Turkey last week I ate some sweats containing wheat and gluten with no adverse effects which is consistent with previous years. Having had no reaction I am going to wean myself back onto normal foods to see how it goes, had no troubles last time.

[SilverDreamMachine in reply to pretender]

Hi, Even if you don`t get a reaction to gluten you may still be causing damage. I`m asymptomatic and although it`s frustrating keeping to a GF diet, I do so because all the research says gluten can `silently` damage the body even when there are no physical symptoms.

[pretender]

Ps. The gf diet causes me more harm than a loaf of normal bread.

[pretender]

Thirty years after your gut has healed and you have been as normal as the next person and an endoscopy is performed and nothing found but after fourty five years active CD is found, four years after that gut healed with no reactions? I still find it very strange.

[meanioni in reply to pretender]

You need to talk to a gastro specialist as what you describe is not normal for coeliac disease which does not "get better" especially when you keep consuming gluten. It may be your were misdiagnosed originally, on the other hand if you are a coeliac you *must* get off the gluten.

Not a lifestyle thing, permanent gut damage and bowel cancer are real consequences of eating gluten whilst coeliac (even if you don't feel the symptoms) and these are life-changing/potentially deadly.

[pretender in reply to meanioni]

Having a diagnosis after 3.5months of hospital tests as a 6 year old I went wheat free for seven years, if I had wheat I would pass out, also excused any games/gym etc or I would pass out. At te age of 13 I was not what was expected a coeliac to be so hospital for an x-ray guided capsule biopsy, result being gut healed no CD. Back to normal foods. At the age of 58 bloods IgA positive, biopsies active CD. Removed any wheat from diet. Found the GF diet symptoms returned, gf/wf symptoms continued. Complained and referred to (edited to remove hospital details). Bloods DNA HLA-DQ2 positive (so has 40% of UK) Endoscopy Marsh 0 biopsy (gut healed) AGA=42.

Still get the symptoms I did aged 6.

Aged 63 issues with GF diet a result of ingredients, in 63 years only 12 spent avoiding wheat/gluten.

There is no misdiagnosis as there is nowhere else I can go and after two diagnosis and one confirmation with gut healed for the second time and no reaction to wheat/gluten.

My natural father died aged 72 of non-hodgkinson lymphoma, untreated CD I believe.

[Mia1057]

Have you any other problems such as Osteoporosis, malnutrition, vitamin or mineral deficiency. The problem with CD and the gluten is the way it can cause other illnesses. What does your doctor and specialist say you should do. Did your last full check up and blood tests show any other problems.

[pretender]

Yes, in the 50's TB was rife and a result of malnutrition, it is an opinion that I may have had some, an abnormal opacity on left lung (COPD) I also had Atrial Fibrilation both connected to CD.

With my CD I have given up with Helthcare Professionals, I have it in writing that gluten can be found in : shampoo's, bath water, bacon,eggs, beans, hash brown's, mushrooms, salads and cheese. It is responsible for allergic reactions. There is also a gluten fre vodka on the market. This is from a Doctor a Judge and an employee of the Department of Works & Pensions. Yes I have either Osteoporosis or Osteopena they are not sure which.

I have been very depressed being made ill by prescriptions written by Doctors

[dobido in reply to pretender]

i have just done a bit of research on internet and it is possible for eggs to contain glutin depending on what the chicken is fed on as the protien is obsorbed, I would think you would be ok with hens fed on corn. The other thing is what about other animals that are fed on pellet food ie pigs(explains the bacon issue i think)Sorry about my spelling, i would really like to be able to find out alot more i,m new to it all was diagonised december last year and finding it tough going.Seem to find new things i shouldn,t eat i can,t torarate any wheat yet.

[barny in reply to dobido]

hiya i was diagnosed 12months ago so like you am new and i carnt have eggs eather make me feel sick but on saying thak if i have eggs from farm am ok but i try to aviod them i still slip up sometimes so gl with diet x

[meanioni in reply to dobido]

No the feed that the chicken/pig has is fully digested and will not pass into the egg in a form that would trigger a reaction. More likely you have a reaction to the egg or some other substance.

[Penel]

Sorry to hear you are depressed, pretender. Some Health professionals do not seem to know much about coeliac disease or gluten sensitivity.

Gluten is protein found in wheat and related grains. It can be added to some foods, but who told you it is in bacon, eggs or mushrooms? How can gluten get into them?

If you have coeliac disease and you don't eat anything with gluten in, then your gut will heal up. It does not mean that you no longer have the disease. Gluten sensitivity is an allergy.

The 'free from' food that is advertised for coeliacs to eat has got a lot of additives in it, which often don't agree with people and can make them feel ill. I don't eat any of them.

Good luck with sorting out your health.

[pretender in reply to Penel]

At the DLA Tribunal I told the panel that I had had allergic reactions 1) getting out of the bath. 2) Having had a breakfast at Ikea, 3) Boarding a flight home from Turkey.

The Tribunal's attempt to not deal with the evidence of Formaldehyde Allergy used Allergy symptoms rather than coeliac symptoms. Prior to Tribunal with the new diagnosis I contacted AllergyUK whose advice related to Formaldehyde, Ikea breakfast reaction two hours after visiting the store which is far to soon for CD to react.

Bacon and certain beans may contain a wheat derivative, which is their excuse.

Shampoo's, products on sale at Ikea as well as certain foods emit formaldehyde.

[pretender in reply to pretender]

This is of course on headed Tribuam paperwork, after three Tribunals for the same reasons I have three different responses opinions or just do not know's.

[dobido]

hi all i have heard that sulphites or sulphates can cause a gut reaction and that is present in bacon, not sure how realiable the information was am waiting to see my dietian the end of may and query it unless antone else out there knows any different or if it is correct

[Malago in reply to dobido]

Hi, what a muddle, the confusion must be very hard to bear.

Me ........ only diagnosed 10months ago (aged58) however for about 20-30 years

have had tummy pains and some of the dreaded 'd*******ia' followed.

One of my triggers over the years has been bacon and other processed meats; now eating GF if I accidenlty eat MALTODEXTRIN I get severly glutened (and Coeliac UK says is ok to eat!! )

My point is that possibly some bacon might include this. I try to go for bacon produced by small concerns and avoid pre-packed industrial stuff and don't have a problem eating such bacon.

[pretender in reply to Malago]

Bacon may also include Dextrose another wheat derivative that is exempt from listing EU directive and considered safe but may contain residual gluten, this is a sensitivity issue

[pickletastic in reply to dobido]

I have looked up sulphites and they can cause reactions in people with asthma ESP women .the reaction can be mild trouble is sulphites are in lots of food and wine ! Used to preserve food like sundries tomatoes ,I found a on line wine site that explains about sulphites and has low sulphite wine .you have to check the food labels

[philaustin]

Pretender, your case is a very sad one and I do sympathise and wish you good luck.

I'm sure the majority of Coeliacs who follow the posts on Gluten Free Guerrillas understand that CD is for life, there is no known cure, and we can never eat gluten again even if our guts are healed and we are living a healthy gluten-free life.

Until the majority of medical experts tell me it is safe for me to eat gluten again I will remain gluten free.

Maybe that will happen when the drug they are testing in Australia is made available to all.

Interesting comments about gluten making into eggs and bacon here . I wonder what the process would be that would cause this. I find it hard to believe that the things that we ingest actually end up unmodified in our body tissue and blood. I know they say 'you are what you eat', but surely the digestion process cracks everything down into small groups of elements or molecules that don't look anything like the food that they came from.

A crazy idea, but I wonder if a pig had coeliac disease and a leaky gut could gluten ingested from its food actually end up in the meat.

[pretender]

Thank you philaustin,, in my case after seven years on the wheat free diet (1955-1962) forty five years normal living, back to this. I would like to see any research that has been carried out on an on-going basis with a real person, not much has happened since 2004 regarding gluten tolerances. As can clearly be seen Coeliac's can tolerate up to 20ppm it used to be 200ppm but this and other sites people say differently. Medical experts told me I had Coeliac Disease, medical experts told me I didn't, medical experts now tell me I do have it.

IgA = negative, IgG = negative, ttg = 0.9 ggt = negative, AGA = 42, HLA-DQ2 positive like 40% of the country. Three doctors on Tribunal panels thought coeliacs get allergic reactions to gluten lasting five hours and have little idea where gluten is found....eggs/bacon/beans/shampoo/bathwater/salads etc. They just appear ill informed.

Prior to the reduction to 20ppm of gluten per kilo finished product, 200ppm was considered safe so why the change?

[poing]

For what it's worth, I do believe that it might be possible to heal from coeliac disease, although this would be unlikely!

We know that coeliac disease requires a genetic predisposition as well as an unknown environmental trigger. If the gut was completely healed, then the autoimmune reaction is no longer triggered. But at a later date while eating a normal diet, the disease could be triggered again. I think that is why the diet is for life. Even when healed, there is such a high possibility that the disease process could start up again.

[Mia1057]

Not all coeliacs can tolerate even the 20ppm. I basically follow a diet with no gluten, no shop bought or processed GF food, only GF things that I make myself using natural GF flours for bread and pancakes as I react very badly to even the 20ppm. I am aiming for as near to 0 ppm as possible. if I do get contaminated at a restaurant then I almost certainly have a reaction within 2 hrs. So like lots of people on this site, I tend to eat simple fresh foods like veg, salads, fish, fruit, pulses, free range chicken and eggs. I have been doing this for some time and my villi have healed and my blood results are good. I certainly would never risk damaging my villi again.

[Lisa2906]

Hi, this is my first visit to this site in over a year, and then I was looking for experience, advice and opinions of other sufferers of Gallstones.

I ended up reading this thread, because I've had issues with Dairy all my life and was curious to see the experiences of others.

I'm hoping the community will forgive me if I post my Gallstones Experience here, now... because there isn't a dedicated one?

Anyone who's suffered an attack of Gallstones will know what I mean when I say: I found myself on my knees, very fast and very intensely a few times before it was diagnosed.

I had all the tests - a week after I was originally, and mistakenly, admitted for 'chest pain', including the one where I was put inside a noisy and scary tube and told to breath regularly, stay calm and not move.

Sure enough countless Gallstones were observed.

My stay in hospital was short thankfully - not least because the NHS isn't, ironically, quite prepared for a Dairy Free diet, I think.

I've known I had to avoid drinking milk from a very young age (unpleasant memories, but one I might share one day, if anyone is interested) and somehow my weight stays naturally low without any thought or much effort.

I was released from hospital, knowing I had to wait several weeks before the op to remove my Gallbladder and feeling very, very unwell. Next day I was in an emergency appointment with a young, (he made me feel old) newly qualified GP staring at my incredibly glowing bright-yellow skin.

He immediately called his buddy who happened to be on placement in the ward I just left and asked his advice.

Their advice? Avoid Soya products, because I could possibly be reacting to it in a similar way to the Dairy.

I used to love my cups of tea...

Now I drink Peppermint & Nettle during the day - which works a bit like a healthy version to caffeine, and finish the day with Camomile & Spearmint - because it has the same effect on me as Horlicks.

Every morning I treat myself to one cup of Nescafe Cappuccino .

I've learned: if I have two cups, the caffeine attacks my urinary track and makes weeing problematic, so I counteract that (on days when I need the caffeine boost) with Fennell tea (smells disgusting, but tastes delicious with honey stirred in.

The point of my waffle is: It's a year on and I haven't had another attack.