Coaliac Desease.

[JediSurfer]

I have had serious nausea and fatigue for the last few months. been really unwell and had several hospital visits.
At last the consultant thinks he may have found the cause. Coaliac desease is a condition which causes the auto-immune system to attack the body when I eat food containing gluten or wheat. I am waiting on blood test results and will be having an endeoscopy shortly which should show wether or not this is the problem.

Has anyone else suffered with Coaliac Desease?

[JediSurfer]

Saw the Professor this morning and discussed the nausea problem. He got his friend the head of gastromed whom specializes in coaliac( pronounced siliac) in type one diabetics. He made me an appointment there and then for an endoscopy next Friday morning at 08:45.
He also went on to tell me that coaliac decease is present in 20% of types ones even if now symtoms are present.
I will be so relieved when its all done and dusted. They will administer a sedative. Haven't been been drugged in this way before in hospital does anyone have any advice?

But I have been sedated by pints of beer before now.:D

Rich

[shockme]

i've had an endoscopy before.they gave me demerol and versed[a narcotic pain killer and a tranquilizer]it knocked me out-then i woke up after it was done.you'll be very sleepy,drowsy and buzzed:D .the procedure's no big deal at all .good luck-hope they can find what's going on with you.take care,trish

[Funnygrl]

My GI doctor said the same thing about type 1s and Celiac. I'm in the lucky 80% though.

Endoscopies are easy, but most people have the blood test first and only get the scope if the blood test is positive. I had the scope cause I needed one anyway.

I've had 2 endoscopies. The first was under general anesthetic when I was 16. That was really easy.

The 2nd was under "twilight" (demerol and verced) when I was 20. That one was easy too for the actual procedure. I don't remember any of it and slept through it. However, when I started waking up I was having nasty hullicinations and couldn't stop crying and vomiting. Gah. They drugged me up more, I slept for a loooonnnnggg time and life was good.

[JediSurfer]

Celiac Disease is the correct spelling. I think. duh

[JediSurfer]

Celiac Disease is the correct spelling. I think. duh Latin is my weakest language.

Thanks for the info

[poper77]

My endo thought I had celiac disease and told me just stop eating all gluten :eek:
As it turns out I am only lactos intolerant. My gastro suggested bloodwork before the endosocpy and it turned out fine. I have had family members get endoscopies and they said it was no big deal - just make sure you have someone there to drive you home. Good Luck:)

[Funnygrl]

Celiac Disease is the correct spelling. I think. duh
It's different depending on if you use British/Canadian/Australian/Etc English or American.

[Gary_W]

I have had serious nausea and fatigue for the last few months. been really unwell and had several hospital visits.
At last the consultant thinks he may have found the cause. Coaliac desease is a condition which causes the auto-immune system to attack the body when I eat food containing gluten or wheat. I am waiting on blood test results and will be having an endeoscopy shortly which should show wether or not this is the problem.

Has anyone else suffered with Coaliac Desease?

A good friend of mine has it. Bit of a pain for the diet as, for him, the slightest hint of gluten makes him poorly for several days. It's pretty tough to eat out, as you have to avoid gravy (thickened with flour), batters, fries cooked in the same oil as the batter, beer etc.

A work colleague was also diagnosed with it, though it seems wrongly. He avoided large quantities of gluten for a year or so, though he'd be fine with the gravy etc. He is now fine. As celiacs disease is incurable (so far as I know) he was obviously diagnosed incorrectly. Just as well he decided to test the waters with the diet, as otherwise he would be on a fairly restrictive diet for life.

Loads of people apparantly have gluten intollerance. In fact if you listen to certain health food practiotioners they will tell you that wheat is really toxic to the body and everyone should stop eating it. Being an avid bread muncher, I'll cheerfully ignore that advice unless my body forces my hand.

Personally, I think that saying 1 in 5 type ones have celiacs disease is incorrect otherwise it'd get a lot more coverage on here. It is apparantly a fact that we are more likely to get it than joe public and perhaps we are more likely to be gluten intollerant as well. But what I want to point out is that there is a world of difference between being a full blown celiac and being gluten intollerant.

Good luck with the endoscopy. You'll be fine :)

Gary

[JediSurfer]

I beleive that the celiac doesn't get much coverage because people are unaware that the condition exits in them. From the results of the study program which started 2 years ago it is already showing 1 in 20 are suffers. I think we will all be tested for this in the next few years. Makes me sort of a rare breed. Infantile diabetes account for one in every thousand of us and my father was also type 1 from being an infant.
I'll be happy with this diagnoisis, beats autonomic nerve damage anyday.

[HelenM]

Originally Posted by JediSurfer
Celiac Disease is the correct spelling. I think. duh
Funny Girl
It's different depending on if you use British/Canadian/Australian/Etc English or American
In UK Coeliac
You might want to look at Coeliac UK:About us (http://www.coeliac.co.uk/about_us/default.asp)

[sofaraway]

for the endoscopy you will most likely be awake and talking through the procedure but won't remember anything about it afterwards as the drugs have an amnesic effect.
Are you having the bowel prep the day before? if so then take the day off work, it can be tough.


the gluten free products can be quite expensive, but you can get them on prescription, and as you don't have to pay for them it's worth doing.

good luck

[JediSurfer]

I have to fast for 7 hours before the procedure. As I work four nights a week I have got the three days off.
You say that gluten free product can be prescribed. Will my GP sort this out? The practice I am at now is appailing and I don't like visiting. Over the last few years I have visited around 15 times with these symtoms and got nothing in the way of diagnosis. They all just look at me like I am barmy. It that old God complex syndrome some of em seem to have.

Thank you kindly for all the info guys and gals. greatly appriciated

Rich


for the endoscopy you will most likely be awake and talking through the procedure but won't remember anything about it afterwards as the drugs have an amnesic effect.
Are you having the bowel prep the day before? if so then take the day off work, it can be tough.


the gluten free products can be quite expensive, but you can get them on prescription, and as you don't have to pay for them it's worth doing.

good luck

[Funnygrl]

Did they do a blood test or are they jumping right to the scope?

[JediSurfer]

had the bloods done when I had my review on monday. they will do the endoscopy anyway because it will show any other problem that maybe present.

[Opal]

I've just had bloodwork done for possible coeliac and I've been told the results won't be back for a month, seems a bit daft to do the endoscopy without waiting for them.

However I got quite sick about 7 years ago and my Dr at the time sent me straight for an endoscopy. I was given a sedative and went straight to sleep, just remember being really out of it when I woke up afterwards - nothing to worry about!

[JediSurfer]

The blood tests can indicate coaliacs but the only sure way to know is to look at the villi on the stomach lining. These villi are finger like extruations from the lining which absorb minerals and vitamins. In a coaliac these fingers are damaged or not present at all. Its the part of the stomach which is attacked by the auto-immune system.

[Opal]

I know the theory, second time around suspected coeliac here! Knowing the NHS I'm just surprised they've gone straight for the procedure without waiting for bloods.

[Miss Jade]

Yeah well I'd be one of the UNlucky 20% then!

I have T1 + Hypothyroid + Coeliac (as we spell it outside of the US).

It is a bummer, but you learn to deal with it, and life goes on.

Best tip is to learn how to bake your own cakes and brownies etc and to find a good pizza place that makes gluten free bases.

Whole Foods are good for getting bread etc, and there are about 4 or 5 GF beers on the market now, so it's not all bad.

You can PM me id you want any info.

[dgrilli]

Celiac Disease May Masquerade as Alzheimer's
Newspaper Columns, Editorial October 30, 2006
For decades many doctors have encouraged patients to skip vitamins and eat a “well balanced diet.��? What that means exactly has been hotly debated for a very long time. One key component, though, has always been whole grains like wheat, barley and rye.

The only trouble with this recommendation is that for millions of Americans it is poison. People with celiac disease cannot tolerate gluten, a protein found in these grains.

When they eat foods made with flour such as pasta, pizza or even whole wheat bread, the lining of the small intestine is severely damaged. As a result, such patients cannot absorb key nutrients from their diet and they may suffer from a range of serious symptoms.

Digestive tract upset is not uncommon. Many people complain of discomfort ranging from heartburn, gas and bloating to cramping and diarrhea. Others experience fatigue, anemia, an itchy skin rash, nerve pain, migraines or osteoporosis.

But one of the most insidious and easily overlooked complications of celiac disease may be dementia. Physicians are rarely taught that cognitive impairment might be a symptom of celiac disease, so forgetfulness is usually attributed to aging or Alzheimer’s disease.

After listening to a radio show we hosted on celiac disease, a listener shared this story: “Your program may have saved my life. I know it saved my sanity.

“The more people talked on the show, the more I thought ‘That sounds like me!’ I had heard of celiac disease, but I did not know it could show up in adulthood. I figured I had nothing to lose by eliminating wheat from my diet for a while.

“After a week of rice and vegetables, I couldn't believe how much better I felt. The bloating, gas, diarrhea, and puffiness were gone. Best of all, though, the depression, lethargy and inability to concentrate and think began to lift.

“Not long before, I had insisted my doctor test me for Alzheimer's! I was losing my ability to recognize faces. I couldn’t have written a letter because I wouldn't have been able to sustain a train of thought long enough to get past the first paragraph.��?

New research from the Mayo Clinic suggests that celiac disease should be considered when people start having trouble thinking, doing simple math or remembering things (Archives of Neurology, Oct. 2006). A review of patient records revealed several people who had been diagnosed with both celiac disease and dementia. In two cases, following a gluten-free diet reversed the cognitive decline.

Earlier diagnosis and treatment of celiac disease with a completely gluten-free diet might be able to keep some people from developing cognitive problems that resemble Alzheimer’s disease.

Celiac disease is far more common than most people realize. It often goes undiagnosed for years because symptoms are varied and nonspecific. Perhaps as this condition gets more attention, it will become rare for people to suffer from the debilitating consequences.

Readers who would like to learn more about celiac disease may want a CD of our one-hour radio interview. The show covers symptoms, diagnosis and treatment. It is available for $16 from the People’s Pharmacy (CD- 594), P. O. Box 52027, Durham, NC 27717-2027 or from The People's Pharmacy (http://www.peoplespharmacy.com).

[BlueSky]

While I don't have Coeliacs Disease, I certainly felt a lot better when I stopped eating bread. It is estimated that 50% of the population has some degree of gluten intolerance. Grains were never supposed to be eaten, which is why they are toxic until they are cooked. Maybe mankind got just a bit clever for its own good with this one. :D

[JediSurfer]

Well, I had the endoscopy on friday morning and everthing looked fine. The doc took a few sample from which I will have the results in a few weeks. I am immediatedly cutting all wheat and gluten out of my diet. I have noticed I feel even worse when I eat this stuff. Hopefully it will make an difference because I feel bloody awful still. If it coaliacs should see a dramatic improvement in a month or two.

[blonde kiddo]

Hiya, I'm also having investigations for coeliac disease, I was found to be anaemic a while ago (but with no particular symptoms except looking pale!). I'm having a gastroscopy in the next wk or two too (waiting for appt), and had the blood tests this wk. Quite scared about the endoscopy but I've seen it done a few times (as a student nurse) and most people are fine. Quick qu: if you need to fast for quite a few hours before the procedure do you have to have sliding scale insulin or anything? Thanks.x

[JediSurfer]

I had an appointment first thing at 8:45 so the fasting wasn't a problem. You wanna make sure you can get an early appointment. I ran my BG slighty high from the night before at around 10 to avoid dropping low.
The procedure isn't that bad at all. Literally takes 15 minutes and you don't really knows what is happening with the sedetive. I felt a slight discomfort when the camera was been inserted but is was nothing really. I found having the cannula inserted in my arm more uncomfortable.
You could always reduce your lantus the day before if you find you have hypos from it when fasting but this isn't a problem for me. You need to fast for seven hours before hand . no food or drink. But again with my loss of appitite didnt cause a problem
I can assure you there is nothing to worry about. I was fine and I have a bit of a phobia of hospitals. Even after all these years. I was made to feel at ease by the staff.

Hope this helps
Rich

[blonde kiddo]

Thanks for the reassurance Rich. Hope you get sorted soon. Let us know the outcome and if you do have coeliac x

[sierradawn]

Well, I had the endoscopy on friday morning and everthing looked fine. The doc took a few sample from which I will have the results in a few weeks. I am immediatedly cutting all wheat and gluten out of my diet. I have noticed I feel even worse when I eat this stuff. Hopefully it will make an difference because I feel bloody awful still. If it coaliacs should see a dramatic improvement in a month or two.

Hi JediSurfer,

I'm sorry to hear that you're going through all this! I wanted to respond because while I don't have celiac disease, I too have severe reactions to gluten of all types - weight gain, stomach bloat, massive blood sugar rise for HOURS, etc.

About six months ago my nutritionist/holistic doctor put me on the Blood Type Diet based on Live Right 4 Your Type by Peter D'Adamo. I have not looked back since then! This "diet" (I hate that term as this is not a weight loss scheme) is based on your blood type, so if you are Type O (like me) you are not supposed to have wheat of any type and if you're a non-secretor (again, like me) all grains and legumes are pretty much a no-no. I have never felt better or looked better in my life. Without majorly exercising, I dropped 5% body fat without my weight changing, while my lean muscle mass has increased! No more bloatedness, much more even BGs, etc. So what DO I eat? Lots of protein, avocados, veggies (including artichokes and sweet garnet yams) of all kinds, certain fruits (mostly blueberries, cherries, pineapple, and banana) in moderation. I also have healthy oils such as olive, pumpkin, and ghee (clarified butter), as well as walnuts, chia seeds, and almonds. I don't miss my bread and other carby foods and my body is SINGING!!

I have a feeling you're a non-secretor though I couldn't tell you what your blood type is, however, Type O's do the worst with wheat and other glutens. 80% of the population are secretors (that is, you secrete your blood type antigen in your bodily fluids. Non-secretors don't have this ability, therefore, they tend to have more immunological issues).

Anyway, I thought you might be interested in checking the book out and see if it can work in healing the celiac disease. I use the forum board on www.dadamo.com and believe others have been helped with this disease by following their specific blood type diet.

I also noted before that you're a surfer. You might like to know that my husband is Gabe Sullivan from the green Curious Gabe column in Surfer magazine. He also follows this diet.

I hope you find answers to your health issues and will pray for a healing!

Take care,
Sierra

[blonde kiddo]

To anyone out there who has been diagnosed as coeliac, did you find that your blood glucose levels were more stable after you went on gluten-free diet? x

[JediSurfer]

Thanks for the link Sierra very interesting reading. I have noticed over the last few years certain type of food send my bg's crazy and make me feel ill. I will definately look into it.

Gabe Sullivan hey. wow. I'm am honered. totally stoked. far out man. small world innit.


Its difficult getting enough carbs inside me whilst avoiding gluten and wheat. My main food when exercising and surfing has always been oats, the long steady release rate is fantastic, but oats make me sick. Rice is a good alternative but isnt as stable as oats.

Been wheat and gluten free about two weeks now and not really missed anything. But getting enough carbs in is proving difficult. And I still have absolutely no appitite and having to force myself to eat.

Ive also been called back to the diabetes centre here by Professor Tesfaye. Which is a little worrying after only 6 weeks since my review. Have no idea why and can only think its a problem with my blood results.

Blonde Kiddo, hope your endoscopy goes well and don't worry.


Peace and love
Rich

ps Sierra, Gabe's bus rocks

[JediSurfer]

Also a couple of people have asked why I had the endeoscopy before the blood results are back. The answer is that I have been placed on a study by Dr D S Sanders whom is conducting research studies into type 1 and coeliacs.

Rich

[sierradawn]

Its difficult getting enough carbs inside me whilst avoiding gluten and wheat. My main food when exercising and surfing has always been oats, the long steady release rate is fantastic, but oats make me sick. Rice is a good alternative but isnt as stable as oats.

Been wheat and gluten free about two weeks now and not really missed anything. But getting enough carbs in is proving difficult. And I still have absolutely no appitite and having to force myself to eat.



Hi Rich,

Since Gabe and I cut out wheat and most grains out of our diets, we now get our carbs from blood type friendly fruits like blueberries, bananas, and mangos.

Another great long-lasting carb with fiber is SWEET POTATOES!! These are amazing....However you must make sure that you get JEWEL yams/sweet potatoes, not garnet. They are much tastier and softer. What we do is slice them up, toss them in olive oil, sprinkle with sea salt and roast in the oven at around 350-400 degrees until soft. These are SO good and it sustains us for a long time. Most people don't like sweet potatoes because of how they're prepared at Thanksgiving/Christmas---too sweet with marshmallows, etc. If you eat them savory (with salt, and or herbs), they are a totally different experience.

Let me know if you try this and what you think.

Yes, Gabe's bus is cool....He's had it for over 15 years now....since high school. Be sure to check out his myspace page at www.myspace.com/curiousgabe (http://www.myspace.com/curiousgabe).

Hope you feel better soon!

Sierra

[blonde kiddo]

I had the endoscopy yesterday, afterwards the dr said my intestines look like coeliac so I should start a gluten-free diet straight away. Not sure how this might affect my blood sugars?? I guess eventually I might need more insulin when the intestines heal and start to absorb more...

Sarah

[JediSurfer]

Hey Sarah

I'm still waiting for the results. eeeeeek.
Doctors are all over the place with this one. When the consultant did the procedure on me he said there was no way to tell until the biopsy had been examined under a microscope. I suppose there could be scarring if your auto immune system has been attacking your stomach for a while. I dunno.???????

Its really tough looking out for everything which may contain or might have come into contact with wheat, barley, rye or gluten and stuff which contains additives source from such food stuff.
I have been doing quite well avoiding this stuff at all costs but then again the day before yesterday I ate gluten free sausages but didnt realise one of the ingrediants was malt vinegar. wondered why I felt really ill again for two days with all the symptoms and only realised what had happened when I dug the sausage wrapper out of the rubbish bin this morning

Hope your well Sarah.

[blonde kiddo]

Hey, well the gastroenterologist said the intestines look smooth which would suggest coeliac. But yeah its strange one dr says one thing and one says another! Anyway went to see him again yesterday (waited nearly 2 hrs to see him for the outpatient appt and was only in about 5 minutes!) and he said the blood tests also show it.

Yeah there seems to be gluten in so much stuff, even things like gravy! But at least there are alternatives for most things, which I understand can be prescribed after a definate diagnosis as there're pretty pricey. The biopsy results will take 3 weeks to show definately I have it so I guess I will have to go and see GP after then to get prescriptions for food sorted.

Anyway post as to your results Rich.

I read as many as 1 in 14 Type 1's have coeliac so its not so unusual!

Take care
Sarah

[JediSurfer]

Hi Sarah,

Are you going wheat free from now on?

[shabbie6247]

i'm still waiting for my blood test results to come back (they actually lost my first ones!)

but while i wait i've bought this book from amazon its new out and the 'for dummies ' range of books are always so useful.
living gluten free for dummies (http://www.amazon.co.uk/Living-Gluten-Free-Dummies-Danna-Korn/dp/0471773832/ref=sr_1_1/026-3138931-2974053?ie=UTF8&s=books&qid=1183275394&sr=1-1)

[JediSurfer]

Thank you Shabbie, I might order me a copy today.

[blonde kiddo]

Yeah, I've now gone gluten-free. I don't think its going to be too bad, in fact it'll probably make me healthier as I can't just snack on any old non gluten free foods like biscuits, choccy bars, etc anymore that happen to be around the house! Suppose I'll have to go for fruit if I wanna snack, which is healthier all round

[JediSurfer]

I should get my results on Monday and I can't wait. Might even have a party. lol
Heres is a post which everyone should read and I think we all get tested for Coeliacs if not already done so.

Heres the Link
Coeliac Help for sufferers of coeliac,celiac,sprue or dermititus herpetiformus (http://www.coeliachelp.me.uk/index.html)

The doctor whom carried out the tests on me is an advisor for this site.

[Funnygrl]

I'm still amazed you had to wait this long. I got mine the next day.

Are you gonna be disappointed if you don't have it?

[JediSurfer]

Have no idea what I will do if result come back negative. If that is the case looks like I'm a gonna. Be 6 feet under by Christmas.

[JediSurfer]

Been tothe hospital diabetes clinic this morning. No news on the endoscopy but will have a few more tests done for automic nerve damage in the next few weeks. It involes been wired up to a heart monitor and performing a few tasks. Not sure what the tasks are but sounds like fun. But it will take an entire morning urrrgh.
Hopefully get some answers from the gastromed on monday morning. fingers crossed.

[JediSurfer]

Excuse the spelling. thats autonomic nerve damage

[shabbie6247]

well i just got the all clear from the docs. i do not apparently have coeliacs. well thats good. but what on earth is giving all the symptoms? i'm still going gluten free anyway.

[JediSurfer]

I'm still amazed you had to wait this long. I got mine the next day.



You got biopsy results the next day? As far as I know that is not possible.

Shabbie did you have and endoscopy? The consultant told me even if blood test where negative the biospsy on my stomach would still be done because its the only way to be sure. the blood test have proven to be inadequate.
Have you now been referred to a gastro enterologist?

[JediSurfer]

Well, NO COELIAC DESEASE.
The biopsy came back negative. But the strange lump on my stomach lining is an inflammed vein but not the cause of my symptoms. Nothing to worry about, not cancer, everything else in my stomach structure is normal.
I am having a CT scan on my pancreas in the next few weeks and a autonomic nerve test on Thurday morning. Also have to give a stool sample to test for a certain protein which is excreted from the pancreas apparently the only protein which passes thru the stomach and bowls and is not altered by the digestive process.
Also another 24 hour urine sample. To test for auto immune disorders. Not sure which as that is being undertaken by another consultant at the other diabetes clinic at the other main hospital.

Good and bad news I suppose. No coeliacs is good, no diagnoisis isn't so good and more tests. Starting to feel like a lab rat.
Gastroparyasis is certainly a possibilty or a pancreatic disorder. After all the islet of Langerhans only make up 1% of the pancreas funtion and all the hormone producing cell work with one another to keep us alive. Take one part away and it throws everything into disorder.

Maybe feeling better from not eating gluten was just wishful thinking and and hope of getting some answers.
I am going for a chicken burger and a pint of beer to celebrate.

[JediSurfer]

Also going to be eating some radioactive food which will be tracked with a camera or something, cant remember what he said it was it picks up the radioactive substance anyway, to see how long it takes for stomach to empty. Barium meal test I think they call it.

Chicken burgers here I come and get me that pint pulled.lol

[Funnygrl]

The radioactive food is a gastric empty scan. I've had all these tests. have fun with it. None of them are too bad. The worst GI tests I've had were pH studies and barium swallows.

[Scratch]

After reading this thread and more from doing some research on the web, I'm definitely going to ask my doctor for the bloodwork.

[shabbie6247]

Shabbie did you have and endoscopy? The consultant told me even if blood test where negative the biospsy on my stomach would still be done because its the only way to be sure. the blood test have proven to be inadequate.
Have you now been referred to a gastro enterologist?

no endoscopy for me, the nurse said the doc had a look at the blood results and there is no need for further follw up. i dunno, all i know is i feel loads better when i eat less or no gluten in my diet. perhaps i just need to rest my digestive tract awhile.

good luck with all your tests there jedisurfer.

[JediSurfer]

Thanks for all your support greatly appreciated hopefully get to the bottem of this. Been along time now .

Had two pints of a favourite beer of mine this afternoon and a chicken burger.lol.( food but not real food) and not had any bad side effects. See how my bg's are tomorrow always a good indication of when something is wrong.

I think all us T1 should get a blood test at least at some point. Just to be sure. i should have been tested 2 years ago but somehow got missed from the study. Typical.
Sheeeeesh this proberbly makes me sound big headed but I wont speak with anyone whom has a proven record with diabetes care. The nurses just don't understand enough. Maybe i shouldve gone for my phd. lol

[Scratch]

I put a call in to my doctor's office today, asking about getting the labwork order to have blood drawn and tested for the antibodies. I've certainly got a lot of the symptomatic stuff: difficulty maintaining regular bowel movements, I think I had the dermatitis herpetiformis back in my mid 20's which is a sign of gluten intolerance, and my ancestors were Finnish and Norwegian (northern Europeans).

[Scratch]

I just got the call back from my doctor's office, I can pick up the order to take with me to the lab and get bloodwork to check for the antibodies. No sense on putzing about on this too much, I'll pick that up after work today and see about getting into the lab tomorrow morning.

[blonde kiddo]

Hi Jedi, hope you get your tests sorted and find out whats up now you know its not coeliac, thats a good thing but you still obviously need answers.

Now I am having trouble getting an appt to see my GP to sort out gluten free prescriptions, the GP service in England is so illogical, its so difficult to even see my GP, its rubbish!! They say ring on the day to get an appt and so you do, then when you finally get through to reception (b/c of all the people waiting to get through) all the appts are gone. Grrrr

[JediSurfer]

I always use the "drop in" service my GP has. It means waiting but I'm rubbish at keeping appointments anyways. Phone em and tell them its urgent because it is.
Glad you got diagnoised and now you know what the problem is you should be ok. There are a few resturants around which do a coeliac menue so eating out shouldn't be a thing of the past for you.
Hope you get the scripts soon. the gluten and wheat free stuff is so expensive. all the best.
Rich

[JediSurfer]

hmmm I'm back at the coeliacs thread again......

Before I had the endoscopy and biopsy from my stomach I stopped eating wheat and gluten at least two weeks before. Now could this have caused a negative result? Since eating gluten again the symptoms I had before, which did seem to subside, have returned with greater intensity. Bloating, foul smelling wind and stools, Tingling in my feet, joint pains, sweating, stomach cramps and stabbing pains, fatigue, constant nausea which worsens after eating,hands feel swollen. the list goes on. oh and bg's doing strange and totally unexpected rollercoastering, well more than normal.

I am expecting a call from the gastro med sometime this week but wondering if anyone has any info about false results due to lack of gluten being eaten?

Got an appointment on the 8th of Aug for the CT scan on my pancreas. And waiting for the test result from the stool sample. Which is gonna be about another ten weeks away I have been told. Still not had any news of results from the 24 hour urine sample either.

[Gary_W]

That may be the case. From the Wikipedia article on the subject:

There are several tests that can be used to assist in diagnosis. The level of symptoms may determine the order of the tests, but all tests lose their usefulness if the patient is already taking a gluten-free diet. Intestinal damage begins to heal within weeks of gluten being removed from the diet, and antibody levels decline over months. For those who have already started on a gluten-free diet, it may be necessary to perform a re-challenge with 10 g of gluten (four slices of bread) per day over 2–6 weeks before repeating the investigations. Those who experience severe symptoms (e.g. diarrhoea) earlier can be regarded as sufficiently challenged and can be tested earlier.[3]


A good friend of mine got diagnosed with this a few years back; I can't remember if he was eating gluten free prior to his endoscopy or not, so I'll ask him when I speak to him next. Should catch him in a day or two.


And 10 weeks for a stool sample to come back? What on earth are they doing with it?

Gary