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
      131,647
    • Most Online (within 30 mins)
      7,748

    Julie 911
    Newest Member
    Julie 911
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      I agree, there can be contamination at many points--milling is another possible source of contamination for any flours.
    • trents
      Keep in mind that with manufactured food products, "gluten free" doesn't equate to no gluten. Things that are naturally gluten free can be cross-contaminated with gluten in the field, in shipping and in processing. In the U.S. companies can use the gluten free label as long as the product doesn't exceed 20ppm of gluten. That amount still may cause a reaction in some people.
    • deanna1ynne
      Dd10 was tested for celiac four years ago bc two siblings were dx’d (positive labs and biopsies). Her results at the time were positive ema  and ttg (7x the UL), but a negative biopsy. We checked again three months later and her ttg was still positive (4x the UL), but ema and biopsy were negative. Doc said it was “potential celiac” and to keep eating gluten, but we were concerned about harming her growth and development while young and had her go gluten-free because we felt the labs and ema in particular were very suggestive of early celiac, despite the negative biopsies. She also had stomach aches and lethargy when eating it. We just felt it’d be better to be safe than sorry. Now, four years later, she doesn’t want to be gluten-free if she doesn’t “have to be,” so underwent a 12 week gluten challenge. She had labs done before starting and all looked great (celiac panel all negative, as expected.) Surprisingly, she experienced no noticeable symptoms when she began eating gluten again, which we felt was a positive sign. However, 12 weeks in, her labs are positive again (ttg 4x the UL and ema positive again as well). Doc says that since she feels fine and her previous two biopsies showed nothing, she can just keep eating gluten and we could maybe biopsy again in two years. I was looking up the ema test and the probability of having not just one but two false positives, and it seems ridiculously low.  Any advice? Would you biopsy again? She’s old enough at this point that I really feel I need her buy-in to keep her gluten-free, and she feels that if the doc says it’s fine, then that’s the final word — which makes me inclined to biopsy again and hope that it actually shows damage this time (not because I want her to have celiac like her sisters, but because I kind of think she already does have it, and seeing the damage now would save her more severe damage in the long run that would come from just continuing to eat gluten for a few more years before testing again.)  Our doc is great - we really like him. But we are very confused and want to protect her. One of her older sibs stopped growing and has lots of teeth problems and all that jazz from not catching the celiac disease sooner, and we don’t want to get to that point with the younger sis. fwiw- she doesn’t mind the biopsy at all. It’s at a children’s hospital and she thinks it’s kind of fun. So it’s not like that would stress her out or anything.
    • Inkie
      Thanks for the replies. I already use a gluten-free brand of buckwheat flakes I occasionally get itchy bumps. I'm still reviewing all my food products. I occasionally eat prepackaged gluten-free crackers and cookies, so I'll stop using those. I use buckwheat flakes and Doves Farm flour as a base for baking. Would you recommend eliminating those as well? It's a constant search.
    • Wheatwacked
      Gluten free food is not fortified with vitamins and minerals as regular food is.  Vitamin deficiencies are common especially in recently diagnosed persons,  Get a 25(OH)Vitamin D blood test. And work on raising it.  The safe upper blood level is around 200 nmol/L.    "Low serum levels of 25(OH)D have been associated with increased risk of autoimmune disease onset and/or high disease activity. The role of vitamin D in autoimmune diseases   🏋️‍♂️Good job!   I find the commercial milk will give me mild stomach burn at night, while pasture/grassfed only milk does not bother me at all.  While you are healing, listen to your body.  If it hurts to eat something, eat something else.  You may be able to eat it later, or maybe it is just not good for you.  Lower your Omega 6 to 3 ratio of what you eat.  Most omega 6 fatty acids are inflammation causing.    The standard american diet omega 6:3 ratio is estimated at upward of 14:1.  Thats why fish oil works
×
×
  • 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.