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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Should I See My Gp Or Practice Nurse
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25 posts in this topic

Hi All 

 

I am Lee for the UK

This is going to seem like I am a Hippocratic, well its how I feel when I list everything. 

 

I have been thinking about this for a long time,

I have had acid reflix, very bad heart burn, indestion, for some years now.I take omeprazole 20mg

They said I have a hiatus hernia.

I also have bloating if I eat 2 packs say of belvita in a morning I do not feel hungry all day.

and just feel tierd the rest of the day. and my stomach feel like a lead weight. 

 

if I have bread my stomach swells and looks like im pregnant its hard and when i went on the atkins with no bread it went down with in 3 days.

 

I have joint pain 

 

Elevated liver enzymes and shadows or lesions on my liver.

 

anxiety/depression

 

poor concentration and what I call a brain fart when it just goes blank

 

does this sound like a Gluten problem?

if so who do I see and what do I say

p.s Im also dislexic

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Pl. check immediately with gp... Also , check micronutrient levels... You could have low b12 from what u describe...

Place stress on ur gp and get a celiac panel, complete blood work and vitamin b12

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Pl. check immediately with gp... Also , check micronutrient levels... You could have low b12 from what u describe...

Place stress on ur gp and get a celiac panel, complete blood work and vitamin b12

 

Pl. check immediately with gp... Also , check micronutrient levels... You could have low b12 from what u describe...

Place stress on ur gp and get a celiac panel, complete blood work and vitamin b12

Thank you I also sometime have diarrhoea where I dearnt fart. is they anything lse i should ask my GP

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Hi Lee,

 

I'm also from the UK. You need to see your doctor, explain your symptoms and request a coeliac blood panel, which you will probably have to make an appointment to see the nurse for. 

 

Coeliac UK is the main charity/support group in the UK. Here is their list of associated symptoms: https://www.coeliac.org.uk/coeliac-disease/about-coeliac-disease-and-dermatitis-herpetiformis/symptoms/ 

Other websites and organisations provide a list of over 300 associated symptoms, however UK doctors are likely to follow the same guidelines as Coeliac UK so I hope that list helps! Good luck. 

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Hi Lee,

 

I'm also from the UK. You need to see your doctor, explain your symptoms and request a coeliac blood panel, which you will probably have to make an appointment to see the nurse for. 

 

Coeliac UK is the main charity/support group in the UK. Here is their list of associated symptoms: https://www.coeliac.org.uk/coeliac-disease/about-coeliac-disease-and-dermatitis-herpetiformis/symptoms/ 

Other websites and organisations provide a list of over 300 associated symptoms, however UK doctors are likely to follow the same guidelines as Coeliac UK so I hope that list helps! Good luck. 

Thank you for the link will have a good look at it and contact my GP. 

what alcohol are you aloud, I like my whiskey but I guess that will not be aloud  :-( 

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And here are the tests you should ask for:  

 

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA control test

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Thanks bartfull, I couldn't remember the test names!

There is a ton of debate over whiskey but as I understand it, distillation removes the gluten protein and so it cannot trigger a coeliac reaction. I feel your pain, it was one of my first concerns :) It's worth noting though that it might be a bit tough on your insides at first. I laid off it for a few months but now we're friends again (in fact, I've just remembered a whiskey shaped Christmas prezzie sitting on the mantlepiece....) Anyway, that's to worry about if you are diagnosed!

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Yes, you should see your doctor and request the blood tests for Celiac that bartful mentioned above.  I had benign lesions and elevated enzymes for my liver.  The enzymes returned to normalcy on a gluten free diet.  The joint pain, the liver enzymes, the anxiety/depression, its definitely worth checking into celiac disease.  Good luck.

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Thank you all for your support 

its my day off today so will can in and make an appointment with my GP, good news on the whiskey though :-)  

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I remember when I went to see  the practise nurse for a review about 2 months ago I told her then,  that me and the wife had gone on the atkins diet. I only weigh 10st.

and that my stomach had gone down in 3 days, I felt great full of energy no acid.

could this be due to the fact I have not had any bread or pasta.

she said yea sounds like it just dont eat bread or pasta

 

do they try and avoid doing the test cos you are then entitled to a prescription for bread? 

and does this apply to the uk 

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I remember when I went to see  the practise nurse for a review about 2 months ago I told her then,  that me and the wife had gone on the atkins diet. I only weigh 10st.

and that my stomach had gone down in 3 days, I felt great full of energy no acid.

could this be due to the fact I have not had any bread or pasta.

she said yea sounds like it just dont eat bread or pasta

 

do they try and avoid doing the test cos you are then entitled to a prescription for bread? 

and does this apply to the uk 

Hmm yeah you do wonder about the prescription thing! However the nurse might not know about Coeliac, and it's not up to her to request the tests. In my experience I saw the same doctor twice with mild tummy troubles and she basically ignored it. Then I saw a locum doctor who seemed very young, newly qualified and eager to please, who ran the test almost routinely. My GP surgery were then happy to prescribe my food without waiting for any further testing (eg. biopsy) because I'm in my final year of uni at the moment and just needed to be 100% to get through it! However that might have been because my blood test results were extremely high and a few other things, like severe and quite sudden anaemia, were pretty much conclusive that there was internal damage. It seems to vary by surgery and doctor - so change if you aren't happy with anything. 

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Hmm yeah you do wonder about the prescription thing! However the nurse might not know about Coeliac, and it's not up to her to request the tests. In my experience I saw the same doctor twice with mild tummy troubles and she basically ignored it. Then I saw a locum doctor who seemed very young, newly qualified and eager to please, who ran the test almost routinely. My GP surgery were then happy to prescribe my food without waiting for any further testing (eg. biopsy) because I'm in my final year of uni at the moment and just needed to be 100% to get through it! However that might have been because my blood test results were extremely high and a few other things, like severe and quite sudden anaemia, were pretty much conclusive that there was internal damage. It seems to vary by surgery and doctor - so change if you aren't happy with anything. 

 I am seeing my GP on monday at 11 will let you know

I think I will need to Wright everything down and tell him everything hopefully he will do the tests, i work full time so have to pay for my prescription so it might not be any cheaper we will have to see what he says 

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Good luck!
Yeah, as I understand it in England you pay once (per month) for each type of product ordered. So, three loaves of bread cost the same as one loaf. Or, one loaf of bread and one box of flour each have separate charges so you pay once for both (I'm in Scotland - free prescription - but originally from England so I looked it up). However, if you pay a one off prescription fee charge (£101 a year) this covers everything and works out to around £2 a week, which is very cheap for what you get. 

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Good luck!

Yeah, as I understand it in England you pay once (per month) for each type of product ordered. So, three loaves of bread cost the same as one loaf. Or, one loaf of bread and one box of flour each have separate charges so you pay once for both (I'm in Scotland - free prescription - but originally from England so I looked it up). However, if you pay a one off prescription fee charge (£101 a year) this covers everything and works out to around £2 a week, which is very cheap for what you get. 

Feeling a bit nervous about going to see my GP this morning, I'm going to print out a list of things and how I feel cos my mind will go blank, I'm not going to say about food on prescription cos this might put him off, just going to tell him I told the nurse about the atkins diet and how I felt without bread or pasta (carbs) and see where we go from there. will let you all know in about 3 hours. thanks again for your suport  

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Just got back from my GP he says it souds like you defiantly have a wheat intolerance he recommended the stone age diet

No wheat no dairy no egg no coffee no black tea.

 

he has asked for blood tests for wheat intolerance and coeliacs they do blood tests on a Wednesday, he sad it might take 2 weeks to come back 

he also recomended a book the complete guide to food allergy.

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Well that's good that he's taking it seriously. Keep eating gluten until you have the blood tests, though. Depending on the result, they may also want you to have a biopsy, which you would also need to be eating gluten for to get an accurate result. If you want the biopsy you will need to keep eating gluten until all the testing is finished or be prepared to do a 'gluten challenge' (approx. two slices of bread per day for 6-8 weeks before the biopsy) before it is done. Don't blame you if not - I couldn't, couldn't face the thought of eating gluten when I knew what it was doing to my insides. But just so you know :) My blood test results usually take three weeks - post them up here when you get them if you want help interpreting them. 

The stone age diet/Paleo diet is naturally gluten free and I know a lot of people who do really well on it :) I think you can have eggs though! Testing for a permanent condition like Coeliac should probably be sorted out first, though. Either way it sounds as though you'll be soon be eating and feeling better soon, whether that's a gluten-free diet for coeliac or the Paleo diet :)

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Well that's good that he's taking it seriously. Keep eating gluten until you have the blood tests, though. Depending on the result, they may also want you to have a biopsy, which you would also need to be eating gluten for to get an accurate result. If you want the biopsy you will need to keep eating gluten until all the testing is finished or be prepared to do a 'gluten challenge' (approx. two slices of bread per day for 6-8 weeks before the biopsy) before it is done. Don't blame you if not - I couldn't, couldn't face the thought of eating gluten when I knew what it was doing to my insides. But just so you know :) My blood test results usually take three weeks - post them up here when you get them if you want help interpreting them. 

The stone age diet/Paleo diet is naturally gluten free and I know a lot of people who do really well on it :) I think you can have eggs though! Testing for a permanent condition like Coeliac should probably be sorted out first, though. Either way it sounds as though you'll be soon be eating and feeling better soon, whether that's a gluten-free diet for coeliac or the Paleo diet :)

Thanks KCG. 

they do the blood tests on a wednsday, I dont know how I can keep eating gluten/wheat for 2 more days never mind weeks, now I know what its doing I just wona stop. eating it I am feeling more depressed eating it now I had cherios this morning and yea I got pain in my gut and the runs to. just what I need before i go to work driveing a van for 5 hours :-( hopefully this will all be over soon. now I know what the problem is. just need the DRs to know it to

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Fair enough, to be fair, two days gluten free prior to the test won't make much difference as antibodies are produced for weeks/months after gluten is eaten. 

With my tests, my ttg IgA came back so high (over 128u/ml, when a healthy range was less than 7) and when I actually thought about it and did some research I did have several symptoms that were strongly associated with Coeliac. So I freaked out a little and decided to just stop eating it without waiting months for a biopsy. I decided to wait until my three month check up (the same blood tests again) and if the antibody levels had dropped a lot (as well as an improvement in symptoms) I thought that would be pretty conclusive. I feel much better and the antibodies are down to 22u/ml - so it seems pretty conclusive to me!

 

Everyone's 'journey' seems different, hopefully within a few weeks you'll have a better idea of what's going on and what to do next :) 

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Thanks KCG

the wife has said whats one more day or do I need to wait for the results before I go gluten free. see said you now know personally what's wrong. so keep eating it till the results come throw. then we can start and maybe find you a dietitian even if we have to pay for it we will

she makes sense sometimes  :-)

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hi lee,

gr8 to see the good progress.. best wishes..

pl. can u tell me the book on food allerguies... the exact book + author , if possible... i think i have a lot of food allergies...

thanks for ur help,

anand

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Hi anand the book is by Jonathan Brostoff and Linda Gamlin The complete Guide to food food allergy and intolerance get it from amazon for 1p. waiting for it to be despatched.

31Yf6gmrXdL._.jpg

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I have my blood done in the morning can I then go Gluten and wheat free or do I have to wait till I get the results?

I Know i felt much better when I was not eating bread and pasta, he said one of the results will take 2 weeks to come back.

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It depends if you want further testing (like a biopsy), which is usually used to confirm coeliac disease or to investigate further if the blood test results are negative but you still think you have coeliac. For any testing you have to be eating gluten 6-8 weeks beforehand, but you can stop eating it and start again for the tests if you need/want to. It's a tough one - there's no reason not to go gluten free now the first tests are done but be aware that if you need further testing you'll have to eat it again. And you won't know that til you get the results :S Sorry, not a lot of help on this one! It's 'results limbo'... 

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Hi KCG

I will carry on but maybe just try a few gluten free things till all the tests are done. Hopefully it wont be long now 

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Good plan. The gluten-free diet can take a bit of getting used to so you may as well practice ;) (she says, halfway through an enormous gluten-free brownie :D

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