Any coeliac disease sufferers?

[mrsmillsfanclub]

After suffering with what was originally diagnosed as I.B.S. for the last 6 years, my doctor has now suggested I have a blood for coeliac disease. What are the symptoms?
I suffer mainly with bloating,trapped wind, indigestion,loose bowels,constipation and colicky spasms.
I take coloflac on a regular basis which helps slightly.

Hi Mary
Tonight in Watchdog there has been a mention of food intolerance tests widely available for sale that were basically criticised.

However, I was delighted to hear that nutritionist or dietitian (NHS) outlined that intolerances are not determined by any tests but by diet trials , I call that a great result!!!

At last, there is a middle ground, which basically means that even if you are not coeliac, you can still be intolerant if diet trial shows it - which is exactly what happened to my ds and me.

In fact, I would prefer not to be coeliac, as it's far more severe than intolerance :)

Yes, I saw that too! :)

Hello :) JUst wanted to know if this is an on going thread or of I should start a new one?

I was dx with Coeliacs disease today which totally floored me as I had gone to drs the week before with symptoms being extreme fatigue, headaches and aching so much my whole body was in pain some days. I didnt think I had bloated, crampy tummy and diarrhea or at least I didnt associate those infrequent synptoms to what I was eating and thought I always got a gripy tummy when I was stressed and anxious.

Ive got a dietician apt an told to go glutem free for wo months befor emy next folow up apt. Dr was not sure if she was going to refer me to have the biopsy as the bad tummy sypmtoms were almost non existant and she said he didnt want to pout me through that unless absoluely necessary. I now realsie I may have had those symptoms (as I said) and not associated them with food, so am unsure if the biopsy is important?

Am wondering how long it will take for the fatigue and aching to get better now I am gluten free and also have read depression, which i tend to sufffer from sporadically, can get better once gluten free. Does anyone have any experiecne of this?

JUst to add it was blood tests that dx me.

Hi Cupcakes,

Sorry to hear you have been feeling ill and have Coeliac Disease but glad you have been diagnosed.

You shouldn't stop eating gluten if you are going for a biopsy or they'll make you eat gluten again for at least 6 weeks before they do it.

My boys both have it and didn't have the biopsy because a family member had it also and the consultant didn't feel it was necessary.

My youngest who was really poorly when diagnosed showed some improvement in as little as a week, I don't know if children recover more quickly but really hope you feel some benefit soon.

The gluten free diet is fine once you get your head round it and I'm constantly amazed at the improvement in my boys physically and emotionally just from the change of diet.

Thanks Booner.

I am presuming my GP isn't going to refer me for a biopsy as she said to go gluten free immediately. I am not sure how relevant a biopsy is if the blood test showed as positive, anyway? Obviously, I'd like to avoid it anyway, if I can!

just want to bags a place on this thread as I'm currently waiting for biopsy results for CD...

SpringHeeledJack - Hi, have you had blood tests already? I am just windering as my doctor said out of the thousands of blood tests she did, I was the only one that had ever come back positive for CD, so I am wondering if people get a lot of false negatives and therefore have to have biopsy?

cupcakes yeah I did have the blood tests

the consultant said they were "not negative, but not a rip roaring positive either"

he said that going on my symptoms/lack of them when giving up gluten he was 80-90% sure I was coeliac

like a fool I requested a biopsy to make sure. This was double foolish as I had to go back on gluten for two weeks (was ok the first week, but felt so yuk the second I didn't eat very much at all- and definitely not the 4 slices of bread he told me to eat)-and I found the biopsy v v hard to take. On top of that the nurse who did the biopsy said he couldn't see any evidence of coeliac disease (am waiting for the full results)

now I still feel crap, despite going off gluten directly after the biopsy on Sat. Am now wondering if you can have a non-severe intolerance to wheat or whether there's something else wrong...

sorry for essay

it's a bit on my mind at the moment. Betcha can't tell

Cupcakes if you get referral to gastroenterologist they can decide whether to do biopsy. When I was referred they did bone scan and dietician referral etc ... Had endoscope and colonoscopy which I am grateful for as found and removed pre-cancerous growth. Guess we all different.

Spring - I was told 4 weeks of eating gluten before biopsy so perhaps you not had enough in your system?

SpringHeelJack No, I totally understand. Although I got a positive blood it was the last thing I expected and was totally floored. Didnt even know they were testing me for it in fact!

Now, I cant quite believe I am coeliac so am slightly obsessed with getting info and other people experiences and altkhough my dr said she didnt want to put me through a biopsy as my bloods were def positive, and I really dont want to go through a biopsy, a part of me wonders if I shouold ask for one just to be 100% sure. Madness

on my (still raw!) experience I would advise you not to bother if no-one suggests you go for it

tell you what though- don't fret about going gluten free- I did it out of desperation before I got my test results. I had a week of continuing to feel like shit- then the week after it was like fog lifting!

good luck with it- it's much much easier than you might think- that's what I found, anyway

My dh is coeliac. He went through everything you all describe but is better now on his gf diet. We just have pulled gf banana bread from the oven. It's helped me too, not eating so much gluten as I get so bloated with it.
Our ds is t1 diabetic, which I hadn't realized until he was diagnosed is actually linked to coeliac.
So many good gf things in the shops these days too.
Good luck with it all.

Hello anyone who still looks at this thread?!

Ive been GF for a over a month now and was amazed at how quickly I started to feel better :) My prime symptoms of extreme tiredness and muscle and bone pain went within 2 weeks. I did have withdrawel for about a week but once that fog past it was fine. I dont crave gluen filled products and have adapted really quickly and don't find it hard at all!

I'm not going for the biopsy as my dr agrees she is 100% sure and happy with the 99% religble blood test I had and as I went GF the day i got the diagnosis and feel so much better being GF, there is no way on this earth I want to start eating gluten for a day let alone 6 weeks before having a biopsy. Oddly, its the dietician who seems to think I wont take my condition seriously unless I have the biopsy?! That annoys me as i know myself pretty well. She also seems incerdulous that I am intelligent enough to have found info on the web etc and didnt need her to tell me what I could eat. She even tried testing me on the phone with 'trick' question like 'and what about mustard.....do you still have that?' I know some people may need support and help but i think ive done just fine so why not focus more support on those who need it? The dietician also said I was no allowed a bone density scan and follow up care unless I had a biopsy which my dr called me about and said was rubbish as she has put i am a coeliac on my notes and will refer me for follow up care.

The onlu nagging issue for me is that I felt wuite 'elated' for a couple of weeks of being GF bbut now ive started to feel anxious and a bit low for no real reason. Am hoping it's just hormones buthad read that cab happen so if so hope it's not permanent? Anyone have any experience of that?

I think it is the process of realising that this is forever now that can bring you down. Like you, I had terrible joint pain that went quickly, and I felt great that it was resolved, but the reality of eating out/going to friends/takeaways was hard to really get to grips with for a while. Now, 10 years down the line, it doesn't stop me doing a single thing.

I didn't have a biopsy either btw - no way was I going back on gluten after 6 months off it.

Thanks CMOTdibbler - good to know someone sles felt the same way about refusing the biopsy for not wanting to eat gluten again. Although my Dr is supportive of that decision, th edietician is treating me like some kind of imbecile or fraud for refusing it.

hi cupcakes (&CMOT :))
similar story here, went gf when my ds had to, although we declined biopsy for him too, the change for the better has been amazing (it's now been 5 years+).
What I noticed on my ds though was that after first mega improvement, he developed some strange symptoms, like prolonged fungal infections, ticks, echolalia, I was quite worried.

I carried on researching what any of this could be linked to and discovered that he continued to be still deficient in some vits/minerals, esp zinc, magnesium and B vits (and he was vegeterian), this came out of the hair testing, but I think blood tests are available too.
You could maybe ask your dr for some blood tests to check if you are now absorbing everything OK, esp fat soluble vits A,D,E,K, also Zn, Bs, Mg, Se etc. Even tho my ds consultant was confident that he should be OK in terms of correcting deficiencies after 6 months or so on the diet w/o supplements, tests after 2 years showed he wasn't. I then started gently supplementing a few things and bingo, after a noticeable plateau, he continues to improve, to the point that teachers have noticed.
It also turned out that he was too high in copper (toxic) and too low in Zn, by supplementing Zn, copper gets pushed out. Also, Zn is very involved in immunity and enzymes production, all good things, and frequently deficient in gluten-related problems b/c it normally gets absorbed quite high in the gut - where gluten gets in the way most.

If you don't want needles, try a hair test (it was private), but best to wait for about a year after the start of the diet so then you test the post-diet hair.

I never bothered testing myself, I just take occasional supplement alongside my ds.

Thank you, Nightcat, that's really interesting and useful. I'll definately look into that :)

read all your posts with interest - am wondering if anyone can recommend any particular cookbooks or websites with ideas about what you CAN eat - recipes, menu and shopping planning etc? I've been aware for a while it would probably be a good idea if I tried gf diet but when I'm hungry and busy it's just so easy to reach for the bread, pasta, etc. Plus constant temptation of biscuits, cakes etc on staffroom table at work. My symptoms are not so severe as to be a huge incentive but I think I could potentially feel so much better. I need to be mega-organised to trial this! Any tips most welcome

DrFrosty I've not got any books etc but I've become a whizz at moroccan tagines, thai chicken curries, roast dinners etc. I have homemade soups to fill me up when I get home and have something warm with rice for lunch (need to be organised otherwise I'll end up with gluten).

I was surprised at how quickly I got used to being GF, even though at first it was a challenge. There's also great GF flour (by Doves).

But tonight was too tired to care and have eaten a pizza and my heart is pumping hard, as if I've got a nasty hangover .