404.Gluten Moderated discussion and help for gluten free, coeliac, celiac, wheat allergies or intolerance, Cookery and recipes part 35

Tips to survive eating gluten prior to Endoscopy: from Josie on 2007-04-16

Thank Peter for the reply, I guess I've just got to stick it out for the next few weeks.

Also, just wanted to say what a great idea this website is, and I'm sure I'll use it for reference many times going forward, and share a few ideas of my own.

I look forward to returning to a gluten free diet though what ever the endoscopy result shows, as the improvements were great after I'd totally removed and allowed about 5 weeks for things to settle.

I can't say I even missed eating 'normal' foods as there are so many gluten free replacements / alternatives available now - I only have to think of the symptoms if I need any motiviation to stick to the diet !

I guess the romantic weekend away won't be quite so !!

Re: Gluten-Free oat products: from Sarah on 2007-04-19

I have been diagnoised jan 06 but i am still suffering, with running tummy and pain evry day i have been of work for nearley a year june.

i was very anemic and had total villi atrophy.

i am exprance leg and arm pain is any body else and extreme tiredness

is any body else

also my daughter has been dianginosed as well

some help would be great

And i undersrtood you should never go back to any normal food as if the stomche dosent repair if it ever dose it can lead to cancer

Re: Gluten-Free for life: from Peter on 2007-04-19

If you are still experiencing severe symptoms after 12 weeks you need to go back to your doctor and seek further advice.
The villi should be recovering by now on a totally gluten-free diet.
Check your diet very carefully to make sure that you are not eating anything that may contain gluten.

In a small proportion of people with the coeliac condition, soya will also cause problems - this is well documented in the medical literature.

In an even smaller proportion of people any finely refined flour will cause problems. i.e whole grain rice is fine for them, but a fine rice flour made into bread causes them problems (leaky gut syndrome)

Any irritation to the gut increases the risk of cancer, but anything that you do to decrease that irritation reduces the risk of cancer again. The gut will heal itself, but it will still react to the substance that irritated it in the first place.

Re: Does anyone know of UK Gluten intolerance testing: from donna gasquet on 2007-04-22

Dear Sir,

I am returning to France after two years in Dakar, Senegal...I have been following a strict gluten-free diet for the past 12 months after my husband and I "self-diagnosed" gluten intolerance as the root of my bloated-yet-thin woes...My problem is that upon visiting my home in Oregon last year, an allergist and a gastroenterologist both came up with negative results from testing...although they said since I had been very strict in my adherence to the gluten-free regime (not even consuming bouillon cubes, soy sauce, glucose syrops etc) for the four months prior to the tests ...they could have likely been inaccurate...

My question is this: How long must one ingest gluten to be accurately tested and how much gluten must one consume on a daily basis in order to obtain an accurate reading? I must admit to finding precious little information on this subject here in Dakar, and I'm not sure I want to reintroduce gluten if it is not necessary as I have felt much better since eliminating gluten from my diet.

Re: Does anyone know of UK Gluten intolerance testing: from Peter on 2007-04-22

There are some medical papers published on the time needed for eating gluten before the tests are again positive.
The results showed that the time was very variable, with some people who had been confirmed previously by biopsy, still showing negative results at the end of the experiment.

Where testing is done in the UK the period suggested is often 6 weeks, but the amount of gluten ingested can also be very variable. Negative results will not be as reliable after 6 weeks as for someone who has never been on a gluten-free diet.

The question to ask yourself is, would you go back to eating gluten if the tests come out negative? If the answer is no, then there is little point in putting yourself through the stress of reintroducing gluten in your diet.

Re: Does anyone know of UK Gluten intolerance testing: from Sam on 2007-04-24

I have just come across this message board so I hope none of you mind me posting a view regarding testing. For many many years I was told by my GP that I was suffering for IBS. However I did put myself on a Gluten Free Diet and within weeks felt like a new woman, but by doing this it meant that no one was able to give me a test that would be reliable, I had the blood test and it did as expected come back negative, however I did have to put Gluten back into my body for a period of 6 weeks and I have to say it was the worst 6 weeks of my life, but I had biopsy as my doctor said even if the blood test did come back postive I would have to have the biopsy anyway, I did this test privately as my GP said it was all in my head. The test came back that I did have Celiac Disease, but I have to say the help I now get its was worth the 6 weeks pain. I have had a bone scan and being treated Very well by the NHS, the only part I am annoyed with is I had to go private my GP has since said sorry, but I hope I have raised his awareness. So I think it is worth 6 weeks of pain and the help you then get is massive.

Re: Gluten Intolerance and Ulcerative Colitis: from Giri on 2007-04-24

Was diagnosed with UC in 2004 when I was 39- have had my share of remissions and relapses, steroids etc. Am on Asacol 2 pills twice a day. UC is really uncommon here in India- in fact I have not met in person a single other UC patient! About a year back I started realising that wheat increases my trouble. I reported this to my gastro - he simply said that it is a good observation and that I must stay off wheat. During remission periods I used to get back to wheat -then have another relapse and off wheat again! I was ignorant of the strong linkage between UC and gluten- which I later found on the net. Was not a big problem since we have plenty of gluten free choice in Indian cuisine. But I now find that beer- the only alcoholic beverage I have and also love to have-contains gluten! Feeling terrible about this- no gluten free beers in India. At this difficult time it was simply so good to stumble onto this site & to write this (in India, the UC patient is very lonely). I have only one question- if I go to a pathology lab, what test should I ask for to confirm if I am really gluten intolerant? Even CD is unknown in India.

Re: Gluten Intolerance and Ulcerative Colitis: from Peter on 2007-04-24

There are two main tests. Tissue transglutaminase test and endomysial antibody test for diagnosis of coeliac disease and gluten intollerance..

The endomysial antibody test is regarded as the most accurate. Often both are performed.

Re: Gluten Intolerance and Ulcerative Colitis: from Melinda on 2007-04-24

Got all the coeliac blood testing back.. negative... lactose intolerance, negative.

All regular bloodwork, healty... in the middle of 72 hours stool tests.(done while eating with wreckless abandon) are the stool ones more accurate? seems that is the case from something I read. I am being told, so far now by 2 docs (at a US top 100 hospital) that there is no reason I should not eat gluten. Told that the pain and Dia... must be something else. do alot of people just do this without any support from a Dr.?

Re: Gluten Intolerance and Ulcerative Colitis: from Peter on 2007-04-24

If the symptoms are very clear: gluten=problems
no gluten= no problems, then many people will make up their own minds.

But take care. If symptoms are not clear cut then you may be kidding yourself, suffering from stress induced symptoms, or masking other problems such as developing cancer.