Celiac or Gluten Intolerance? Please help.

Digestive health
1

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 I am fed up of doctors not taking me seriously and using their outdated knowledge to treat paitents.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.

2

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

3

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

4

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

5

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

6

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

7

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

8

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

9

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.

10

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.

11

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

12

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

13

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

14

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

15

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

16

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

17

Hi Rosie. Unfortunately I have also had a very similar experience to you. I have never been a well person, always picked up bugs, diagnosed with IBS at 11 years old and have just 'tollerated' my stomach problems for 25 years. But over the past 10 years I've gradually becme very interested in nutrition. I began to hold a belief that the cause of my problems was in my diet and have spent a lot of time researching nutrition and making my diet very, very healthy. But despite all of this, I was still often ill and last year, it just got unbareable. I was ill all the time- either a sinus infection or full on viral flu type symptoms. Plus I developed the most painful rash on my face and scalp. I was attending the GP regularly. They saw everything as a seperate condition, ignored my stomach problems and treated my skin and sinus infections with antibiotics and later antivirals plus creams. Nothing worked. At one point a GP told me it could be HIV, which obviously freaked me out! (I was tested negative thankfully) Eventually another GP asked if I'd ever been tested for coeliacs, I didn't really know what it was but once I'd read up on it, I thought it explained everything. That was in early Oct last year. Once I'd read about it, I upped by gluten intake thinking I could get tested in 6 weeks but when I was getting routine bloods done, I was also tested for coelics. I'd only been eating enough gluten for a week so unsuprisibgly it came back negative. That was the end of my coeliac disease idea as far as my GP was concerned.

So I decided to take it into my own hands and gave up gluten. It's been 4 months now and generally, my health has improved dramatically. My skin completely cleared up within 2 weeks and my stomach problems are 90% resolved. My fatigue has mostly gone. Brain fog gone. Tingly hands gone. Palpitations gone. Anxiety at night gone. The only thing that's changed in my life is the gluten and it's hardly any change to my diet as I ate a very clean and nutritious diet before this, plus I took supplements before. 

I've gone back to my GP to tell them all this. They referred me to a dermatologist and to gastro. I've had my dermatologist appointment and it was a total waste of time- I was informed you can't get DH on the face/scalp which I know isn't the case. She didn't appear to have any knowledge about coeliacs. I'm still waiting on my gastro appointment and I'm debating whether to reintroduce gluten for it. I want an actual specialist to see what my problems have been and properly advise. On the one hand, I feel I'm on the road to recovery and don't want to come off this road but on the other, I do wonder if it really is gluten and whether it's maybe just a coiincidence I'm better now- reintroducing gluten is the only way to find out! 

Ultimately though, I think you're very, very lucky if you find a doctor with specialist knowledge in coeliacs. I think as far as autoimmune diseases go, they're really only begining to understand them. 

Going gluten free is a hassle and can be quite anxiety provoking at times (eating out, eating news things) but ultimately, I think having a disease/illnesss that can be completely controlled by eliminating something from the diet, is kind of the best case scenario as far as chronic illnesses go. My being convinced I had HIV for 4 weeks has given me a different perspective on this though! :D

If you do have coelicas, there is little the GP can do anyway, there's no medication to cure it or even help, it's purely controlled by diet (and I think these 2 fact are completely linked- if there was a medication to be prescribed and money to be maed by drug companies, you'd be getting tests thrown at you!). There are also lots of things we can do to repair our bodies. Helping our gut to heal I think is really important as is helping our body deal with stress. Being sick for a long time puts a lot of strain on your body and I'm sure my stress/cortisol levels have been through the roof. So at the moment I'm trying to do everything I can to help my body repair- eliminating processed foods (espeically sugar) and all stimulants as well as making my food very nutritious (i.e. limiting all that 'gluten free' packaged food in the supermarkets!).

I hope you get some answers or positive changes to your health soon smile 

 

18

Hi! Thank you so much for sharing your story! It's funny, since my stomach problems started, I've also become very interested in nutrition and diet! In my personal opinion (and I have no medical background) I wouldn't reintroduce gluten back into your diet just for an endoscopy IF you are on the road to recovery? However, it is up to you but bare in mind that you will probably become even more ill than you were before. I guess you have to weigh up the pros and cons and work out what would be best for you in the long term. Being told you could possibly have HIV is one of the most ridiclous things I've ever heard! I could only imagine how horrible that must have been for you. 

I totally agree with you about the fact that if medication was prescribed for coeliacs then GPs would be 100% more enthusiastic. That's why they are so happy to quickly write out £8 prescriptions for skin conditions that stem from internal issues! They rather mask the symtpons than treat it! I think eating a healthy, nutritious diet is the key to recovery! Lots of water and lots of sleep, along with excercise if your energy levels are up to it. It's funny because I do eat a healthy, clean diet and the only thing thats bad in my diet is the gluten in it from bread/pasta/cereals. I can't wait for the day to eliminate them, it's upsetting me that I've had to increase my intake of them for the blood tests as I did not really eat that much of them before as I feel they are unhealthy. 

Thank you! 

19

Hi Rosiebud

Sorry to hear your story.

Do so totally understand the frustration you are feeling with a doctor that is really not listening or really not being bothered to help you.

I too had this for a long time😫

But I changed to a different surgery and this doctor did listern he took

blood test then I was set for endoscopy and that showed I had celiac

disease....the doctor at the hospital said I probably had had this for many years and no one had picked it up... One doctor just kept giving me iron

tabs,and if you do have

celiac they will just go straight through you and is a total waste of time.

I use to get very dry and ichy skin, feel bloated, feeling sick

had mood swings

Constipation /or either running to the loo!! feeling very tired and just

generally felt very unwell.😖

I am on a strick cluten/wheat free diet now for rest of life.

But I feel sooooo much better now.🙌

So do change your doctor or ask for a second opinion don't b afraid to

ask and don't give up .

Good luck please let me know how you get on.

Jeanie

20

I also think you should have your rash biopsied. Here in the U.S., if the rash is considered DH, the patient is considered to have Coeliac without even testing blood and biopsies. Not that we've had that experience, but just from what I've read over the last year or more.  

My son has CD and his eczema is still pretty bad.  Been having a rough winter here, weather-wise and that doesn't help...but neither has his GF diet for a year now. Bleach baths have done more than just his prescription creams and thick lotions alone. He does not have DH, though. 

I may or may not have CD but I went for a check up and told my Dr. about my exhaustion and other symptoms and she discovered that I'm low on B12.  Three weeks into treatment, I do feel much better (not all better, but that takes longer). It's just such a relief to KNOW in the first place!  Here we wait weeks/months to see specialists, so my GI appointment isn't until the end of March, but the more B12 I get, the more I think it's probably just that. smile

Don't let the GP keep you from getting answers - see another if you can't make your own appointment with a GI doc! From what I understand in some European countries, you have some government help with food expenses if there is a CD diagnosis and since it's an autoimmune disease, you owe it to yourself to find out if you have it or not before you give up gluten.  For your sake, I hope it's "easier" and that you get well soon!