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Celiac or Gluten Intolerance? Please help.

Posted , 9 users are following.

rosiebud
rosiebud

Hi, I'm hoping somebody could help me since my doctors have been completely useless and at times, downright patronising.

So for over a year now I have been suffering from a vast range of symptoms: constipation and diarrhoea, bloating, foul gas, tightness in stomach, eczema on arms and back of legs/buttocks, cracks in corner of my mouth, dry eyelids, red outline of bottom lip, white outline of top lip, anxiety (had my first panic attack the other day), feeling lethargic, aching legs and nervous pain in my hands, feet and legs.

I have been to the doctor about pretty much all of these symptoms. I've been prescribed laxatives, been told to eat 'All Bran' for breakfast, diagnosed with IBS, told to cut my caffeine intake (I drink green tea), prescribed steroid creams (which have not work) and have been told that it's all in my head. I did have a blood test for coeliac disease but I didn't consume anywhere near enough the reccomened amount of gluten before testing. However I have noticed that my eczema is getting worse, I have a burning quite scabby rash on both my forearms (looks like a mild version of DH), to which the doctor prescribed another emollient cream. I have also been booked in for another blood test to test for ceoliac and anaemia.

HOWEVER, I may just cancel these tests. I am fed up of doctors not taking me seriously and using their outdated knowledge to treat paitents. I feel like I should just got on an eleminiation diet (gluten and lactose) and just treat myself because I know my body better than anybody. I have recently upped my intake of gluten, eating lots of bread and I feel so much worse and my nerve pains in my hands and legs are worsening. I am also sick of my aniexty, I have outrageous anxious thoughts in my head and as I used to be such a confident person, it's really getting me down.

Does anybody have any similar experience with unsupportive GPs and can anybody offer me advice on what to do? I feel as though my GP does not want to get to the root of the problem and just wants to mask the symptoms that come with it. I want to feel healthy and energised, not down and lethargic. I feel that maybe just be an intolerance or an allergy to something and not as dangerous as celiac disease? Any advice any of you could give me would be amazing.

1 like, 19 replies

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  • sarah78543
    sarah78543 rosiebud

    Posted

    Hi rosie if i were you I would go for the blood tests for sure even if it came back neg and u were still having the symptoms a biopsy can confirm the disease. I had very similar symptoms and terrible cramps I was treated for everything but, until I was referred to a haematologist as my iron was so low. I had constant probs with my eye which I was seeing an eye specialist for then 1 day he asked if I had ever suffered from an auto immune disease I went home researched them myself and diagnosed myself with coeliac disease. The heamotologist instantly sent me for the test whivh came back positive following the biopsy to confirm it I followed a gluten free diet and never looked back. Hope this helps just follow your gut instinct and make them listen to u.

    Sarah

    • rosiebud
      rosiebud sarah78543

      Posted

      I know I should carry on eating gluten and go for these blood tests but eating a vast amount of gluten is getting me down, I just feel tired and miserable! I know thought that to benefit my long-term help I should go for the blood tests. Your story is shocking, it just proves how ignorant doctors can be of ceoliac and of gluten intolerance! It's so frustrating that it takes so long to diagnose.

      Thank you so much for sharing your experience, it makes me feel like I'm not the only one who has experienced the ignorance of GPs! I feel like talking to people will make this experience more bearable. Even if these tests come back negative, I'm going to take it upon myself to follow a gluten free diet, regardless of what my GP says smile

  • jane35365
    jane35365 rosiebud

    Posted

    I have had the same problem with my gp. At last today I have been referred. I started with cramps and bloating just before xmas didn't even think of a gluten intolerance. I got admitted into hospital on the 15th Jan as gp didn't know what was up with me, I ended up having investigation surgery on the 17th jan where then they took my appendix out (normal looking appendix) and said I was constipated and gave laxido. I was then admitted again 3 weeks later again told I was just constipated. I had just had enough at this point and it was only me researching that I can across gluten intolerance. I went back to my doctors last week were I was told by the doctor that say didn't know much about celiac or gluten intolerance and my bloods can back ok iron on the low side of normal and was told to go gluten free and see if that helps. Now a week gluten free I felt great until I accidently have gluten night before last and feel like poo yesterday and today.

    I would say keep going back I have now see a gp that has listened to me.

    Try keeping a food diary Putting how you feel how your skin is and so on.

    I wrote everything down. I also have eczema and mine also got worse especially on my face hands and knees.

    Good luck X

    • rosiebud
      rosiebud jane35365

      Posted

      I think it's absolutely appalling that they operated on your appendix! It's downright scary that they are so clueless. If we can access information just from a quick Google search, why can't they? I was prescribed Laxido too and while yes they do work if you have 3 drinks a day but who has the time to drink 3 of these drinks and a day then to spend an afternoon on the loo?! I am glad that you have taken it upon yourself to control your symptoms. Doctors are so out of touch with their outdated knowledge. More and more people are becoming intolerant to gluten and yet they still don't largely recognise this?!

      Thanks, I will start keeping a diary, especially with my skin as I have been prescribed many expensive prescriptions that DO NOT WORK for my skin (not that the doctor believes me). I think going gluten free helps a lot of people out and I can't wait to try it as soon as my bloods are done. Thank you for sharing smile x

    • jane35365
      jane35365 rosiebud

      Posted

      I know I have now had 6 weeks off work :-( going back on Monday at last. They where putting a lot down the post op swelling but I knew it wasn't.(I do also have a lot of the other symptoms) I have had eczema since a baby and none of my creams work on the blister rash. I also took pics of the rash when it was bad and shown my gp today she didn't really know much about dh. Totally agree with you that they are very outdated and I think they just try and put it all done to ibs(which I also got told I had by the hospital) xx
    • rosiebud
      rosiebud jane35365

      Posted

      Glad you're getting back to work! I know myself that it's horrible laying in bed all day not having the energy to do anything or running to toilet every 5 minutes. Well the diprobase cream that I was prescribed today has made my skin worse, it's itching so much more. Can't wait to tell my doctor that they're wrong! IBS is what they diagnose when the answer doesn't pop up on their database. There's been a few bits of press recently about how coeliac is one of the most misdiagnosed diseases. Ignorant doctors, we know what's right for our bodies so from now on I'm going to do what I know is best smile xx
  • susan878
    susan878 rosiebud

    Posted

    Hi rosebud    I was diagnosed with CD a year ago after spending the last 30 years suffering panic attacks low iron and vitamins feeling really tired and lethargic. My doctors,like yours, were useless. It took me a long time to finally have the blood test I deserved and then I was told there was nothing they could do just stop eating gluten. I took matters into my own hands and read everything about CD. I joined the celiac society and insisted my doctor referred me for an endoscopy. Don't give up you know your body better than anyone else, you have rights and insist on having the blood tests. I know it's awful eating gluten but in the long term it will be so much better for you. As for your eyes mine have become really dry and my optitians told me its because of the change of diet. I need to eat more oily fish, but I use hypromellose eye drops twice a day which you could buy from your local pharmacy. I hope this is of some help .

    good luck

    • rosiebud
      rosiebud susan878

      Posted

      Thank you! Yes, lethargy really is awful, especially mid afternoon, my energy levels are pretty much gone! I too have been researching coeliac a lot and my own research has proved more useful than what my GP has told me! I am definetly going to go ahead with my blood tests as I know deep down a few weeks of misery will be worth it. Can I just ask, did you have any digestive symptoms like constipation etc? Or was it more psychological symptoms? You've been a great help, all of these responses have so thank you very much smile
  • susan878
    susan878 rosiebud

    Posted

    I did have a lot of stomach problems, no constipation, but  every thing I ate went straight through me. When your not feeling great you just stick to dry toast which of course made things worse. With my second child I was in hospital having an iron infusion. 2 days after my baby was born I was down to 7 stone.i knew there was something wrong but I was told I was just lucky! I'm 59 now and was diagnosed a year ago . Not.only did the hospital give me an endoscopy but they also sent me for a bone scan and they are now saying I have osteoporosis all due to the celiacs . Don't wait for your doctor to wake up have the blood tests, demand the results, even if they come back negative demand an endoscopy. You should get this quit quickly. Remember the doctor doesn't live with your symptoms you do. Don't be nice be demanding and get well.
    • rosiebud
      rosiebud susan878

      Posted

      You see I have a mixture of constipation and diarrheoa sometimes though when I eat, i literally have to run to the bathroom. I am honestly shocked that nobody picked up on your symptoms, especially when you were pregnant! I'm sorry to hear that, it must be especially frustrating for you as it down to the mistakes of GP's and so-called health workers! I am 21 so sometimes I feel that when I visit my doctors, they don't take me seriously because I am young and they can just brush me off. Talking to people on here has giving me the push to be more demanding. If my results do come back negative, I will be demanding an endoscopy and following up on my skin rash which has got worse since I have applied the diprobase cream that I was prescribed today. I hope you can continue to get your health back on track! smile
  • marg04364
    marg04364 rosiebud

    Posted

    You could have a skin biopsy on your rash to check if dermatitis herpetiformis. That requires a gluten free diet.You probably will need a referral from your dr to a dermatologist.  Constipation can also be a symptom of coeliac disease. Coeliacs become deficient in vitamins and minerals so you dont get proper sleep. You could try taking calcium and magnesium. Take separately, eg calcium in the middle of the day and magnesium at night. Vitamin B could help with anxiety.
    • rosiebud
      rosiebud marg04364

      Posted

      I asked my doctor if I got referred to a skin specialist, would they do a biopsy and he said 'no'! but the Diprobase cream I was prescribed today has made my skin worse in less than 24 hours of using it so I definitely want a second opinion on my skin if it turns out I'm not coeliac. Thank you, I've been reading up on this a lot and I thought I could possibly be vitamin B deficient. I eat a healthy diet, lots of fresh fruit and veg so its puzzling me why I have all these apparent problems. I will try taking supplements and see if that helps, thanks! smile
    • marg04364
      marg04364 rosiebud

      Posted

      It is so annoying that so many doctors are not testing for coeliac disease! There are so many people out there who are undiagnosed and suffering needlessly.  You might need to change your doctor! If coeliac and still eating gluten, even though you have a healthy diet, food is not digested properly so your body is not getting the nutrients it needs.  You could wait until you go gluten free before taking the supplements or they might help while you wait. DH is linked to coeliac disease. You can read up on it here.. https://patient.info/health/dermatitis-herpetiformis-leaflet
  • zoe40663
    zoe40663 rosiebud

    Posted

    Hi Rosie, I can relate to your frustration with GP's. I have had a range of symptoms over the last 4 months but the worst has been my anxiety. I have always been such a strong person and have always been able to cope with most situations, even my husband having an heart attack didn't get me anxious but when the anxiety started with all the other symptoms my world felt like it had crashed to the floor. 

    After months of feeling I was going out of my mind and the doctors telling me I had a health anxiety I decided to remove all gluten from my diet. Within 3 weeks I started to feel myself. Unfortunately I got over confident and reintroduced gluten and am I paying for it now. My body feels like I've been run over by a bus, I've had a allergy rash on my face and neck and my anxiety has gone through the roof. I constantly feel like someone is giving me a tight bear hug, leg pain and a psoriasis patch on my foot (I haven't suffered with psoriasis for years). I've been to my doctors and insisted on a gluten blood test and after reading all the comments I will ensure I insist on other tests if it comes back negative. However, My doctor did actually listen to me this time so I'm hoping I will get it sorted.

    Good luck and I hope your GP starts listening to you. 

    Zoe xxxx

    • rosiebud
      rosiebud zoe40663

      Posted

      Hi Zoe! Yes, my aniexty has been terrible as well about the most ridiculous situations. It's hard to deal with when you were such a strong person before. I'm glad you demanded the test, just please ensure you eat enough gluten prior to testing. I know it's hard, I'm struggling with it myself, I just want to go gluten free now! I'm struggling massively with stuffing myself with gluten, it makes me bloated, tired, sluggish and is sending the skin on my body and face crazy (my face is all red and dry and my eczema is flaring up massively). Not to mention the constant battle between constipation and diarrhoea. Thank you, I hope you get your health back on track soon!xxx
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