Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Should I See My Gp Or Practice Nurse


Lee uk

Recommended Posts

Lee uk Rookie

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


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



anand Newbie

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

Lee uk Rookie

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

KCG91 Enthusiast

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: Open Original Shared Link

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. 

Lee uk Rookie

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: Open Original Shared Link

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  :-( 

bartfull Rising Star

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

KCG91 Enthusiast

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!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



eers03 Explorer

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.

Lee uk Rookie

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 :-)  

Lee uk Rookie

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 

KCG91 Enthusiast

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. 

Lee uk Rookie

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 

KCG91 Enthusiast

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. 

Lee uk Rookie

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  

Lee uk Rookie

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.

KCG91 Enthusiast

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 :)

Lee uk Rookie

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

KCG91 Enthusiast

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 :) 

Lee uk Rookie

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  :-)

anand Newbie

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

Lee uk Rookie

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._.webp

Lee uk Rookie

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.

KCG91 Enthusiast

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'... 

Lee uk Rookie

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 

KCG91 Enthusiast

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

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,700
    • Most Online (within 30 mins)
      7,748

    RelievedP
    Newest Member
    RelievedP
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wends
      Hopefully the biopsy gives a conclusive and correct diagnosis for your daughter. Im in the UK and have been in the situation a few years ago of trying to rule celiac in or out after inconclusive results. Many symptoms pointing to it including the classic symptoms and weight loss and folate and iron deficiency. You have to play a waiting game. I also had the label of IBS and likely food allergy. Genetic test showed low risk for celiac but not no risk. It sounds like the Gastroenterologist is on it and hopefully will diagnose what it is correctly. Food hypersensitivity (allergy) can also cause similar symptoms and inflammation as well as mimicking IBS. Milk / dairy and wheat (cereal grains) being the biggest culprits. The “oesophagitis” and “gastritis” you mentioned can be caused by another gastrointestinal disorder called “eosinophilic gastrointestinal disorders”. These are named depending on which part of the gastrointestinal tract is affected. For example eosinophilic oesophagitis, eosinophilic gastritis, eosinophilic gastroenteritis, and more rare eosinophilic colitis. They are antigen (allergen) driven. When the blood test measuring anti-ttg antibodies is positive in absence of a positive ema test - which is more specific to celiac, this can also suggest food hypersensitivity (allergy). Usually delayed type allergy similar to celiac but not autoimmune if that makes sense. In this case the ttg antibodies are transient. Which happens. I’ve first hand experience. For info, evidence of villous atrophy too can be caused by food hypersensitivity. Not just by celiac disease. In Egid disorders the six food elimination diet, under a dietitian and gastroenterologist care, is the dietary protocol to figure out the culprit or culprits. Sometimes only two food elimination diet is used at first. The number one culprit is milk protein / dairy. Followed by wheat, eggs, soy, fish and seafood, and nuts. Most are only reactive to one food group or two. Most are only reactive to milk. Hope this is a helpful reply.
    • Bennyboy1998
      Yes gene HLADQ2 was positive 
    • Wends
      Wow, the system is crazy isn’t it? Maybe switch Doctors if you can. It’s surprising from what you’ve written it seems obvious it’s celiac disease. The “potential” diagnosis means celiac is developing and it basically just hasn’t done enough gut damage to be captured on the biopsy yet, and meet that “criteria” to satisfy the current system! Given the overwhelming evidence already - family history, positive ttg and ema. And your own experience and intuition which counts far more. And the labs being reproduced after gluten elimination and reintroduction- elimination and reintroduction diet is the gold standard too. Shame on the Doc and the system. What was the Marsh score? I’m guessing not 0 if it’s potential celiac. Meaning the autoimmune process has been triggered and started. Your daughter is obviously very healthy and her immune system is putting up a good fight. It can take years for the gut damage to build to a point where there’s overt symptoms and then a conclusive diagnosis, hence why many celiacs receive diagnosis later in life. You can prevent it. See the positive and the gift in that. Hopefully the gluten challenge confirms it, but if it doesn’t maybe get a second opinion?
    • cristiana
      @Gigi2025  Thank you for your interesting post.  Some of what you say chimes with something my gastroenterologist tells me - that he has clients who travel to France and find the same as you  - they will eat normal wheat baguette there without issue, for example.  His theory was he thought it might be to do with the locally sourced wheat being different to our own in the UK? But I have to say my own experience has been quite different. I have been to France twice since my diagnosis, and have been quite ill due to what was then (pre-2019)  poor labelling and cross-contamination issues.  My TTG test following my last visit was elevated - 'proof of the pudding', as we say in the UK!  It was not just a case of eating something like, say, shellfish, that disagreed with me - gluten was clearly an issue. I've also been to Italy to visit family a couple of times since my diagnosis.  I did not want to take any chances so kept to my gluten free diet, but whilst there what I did notice is that coeliacs are very well catered for in Italy, and many brands with the same ingredients in the UK are clearly marked on the front of their packaging that they are 'senza glutine'.  In the UK, you would have to find that information in the small print - or it puts people off buying it, so I am told!  So it seems to me the Italians are very coeliac aware - in fact, all children are, I believe, screened for coeliac disease at the age of 6.  That must mean, I guess, that many Italian coeliacs are actively avoiding gluten because, presumably, if they don't, they will fall ill?        
    • deanna1ynne
      Thank you both very much. I’m pretty familiar with the various tests, and my older two girls with official dxs have even participated in research on other tests as well. I just felt overwhelmed and shocked that these recent results (which I found pretty dang conclusive after having scott clean labs just six months ago) would still be considered inconclusive. Doc said we could biopsy in another six weeks because my daughter was actually way more upset than I anticipated about the idea of eating it for years before doing another biopsy. It doesn’t hurt her, but she’s afraid of how it may be hurting her in ways she can’t feel. She’s currently eating mini wheats for breakfast, a sandwich with lunch, and a side of pasta along with every dinner, so I’m hoping we’re meeting that 10g benchmark mentioned in that second article!
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.