Confused :( super allergic to gluten but negative result for CD and then told to just get on with it!? Do I get a second opinion? x

Hi, I'm very confused... I've been poorly for over 7 years since the birth of my second baby, stupidly I've never done anything about it until recently because the symptoms of wheat gluten were just getting silly. Constant unbearable Migraines, bloating, weight gain, cramps, aches pains, tingling in hands and feet, blisters and sores in my nose, unbearable tiredness.... Just generally feeling rubbish all the time.

Anyway, after speaking to a friend who has CD she suggested I try a GF diet (I'd already cut bread and pasta out as best I could because of the stomach pains)

So... After doing some googling I found I've got near enough every symptom for CD or Gluten intolerance.

I started a very strict GF diet 9 weeks ago and have seen an unbelievable difference!

But now I'm confused... My blood test results came back this week and it was negative for CD - I'm happy about that, but now I've been given some Mintec tablets for IBS and practically told to get on with it! I was so upset... There was no help there for me at all!!

The dr said I've probably got gluten intolerance but its 'most likely' just IBS!!

I KNOW this problem is due to gluten... I'm on beta blockers for my migrains and since I've stopped eating gluten I've not had one single headache let alone migraine!!

I've read that some tests come back negative if you've been avoiding gluten (I don't WANT CD... I just want to know now - do I just forget the diet and take Mintec!? Or do I carry on with my GF diet? I just don't know what to do... Feeling very let down and upset about the whole thing :(

If anyone out there has any ideas please let me know...

Thanks xx

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  • I think the problem might have been the fact you had gone GF before your blood test. You must continue to eat gluten for at least 6 weeks prior to the blood test otherwise your test will come out negative. You should discuss with your GP - most of them just don't seem to know that you have to continue eating gluten.

  • Thank you xx

  • Hi I think Mmmm is right you should have been eating gluten before the test, info on how to get tested is on the CUK website.

    coeliac.org.uk/coeliac-dise...

    You will notice that some people have IgA deficiency and don't produce the normal antibodies for CD so you might want to make sure that you read up on the tests and make sure the doctor knows which test to give you.

    By the way the list of your symptoms is identical to mine, I don't get really bad stomach issues though, I do have them but they are mild, I get dreadful headaches too and know how awful it is to feel absolutely terrible a lot of the time and be falling asleep. I also have DH. I am still not feeling 100 percent a lot of the time despite being strictly GF and think I am going to have to be one of the people with CD that literally goes back to eating the basic foods to feel well, no additives etc.

    My daughter also feels ill a lot of the time, similar symptoms, she has had several blood tests, all negative and has just undergone an endoscope, we asked our GP to refer her even though the blood tests came back negative. Her endoscope is also negative so I think they are going to do genetic testing now to see if she has the genes. We weren't sure whether it was a good thing or a bad thing to have a negative result, as you think what is wrong with me then?

    Good luck with your diagnosis, you may have to be persistent with your GP to get diagnosed but I would continue as you get more support this way.

  • Thank you xx

  • hey..I went thru all that, LOL...been awful for a long while...negative to all tests but VERY sensitive to gluten, until after I was given a strong antibiotic for bronchitis, (and with that issues I had for over 30 years were also treated, LOL) and was able to eat gluten ok after that....but other issues persisted, now I am fighting a candida overgrowth,??? (which I believe I also have had for years) now I have severe gastric issues that put me in the ER with severe acid production....my personal DR suggested a new product by PLEXUS for candida to try (when I insisted I am still having symptoms of candida)....just ordered to try it out...already on a probiotic, and acid reducer, but maybe this will help...with this recent issue, I get severe pain after putting ANYTHING in my stomach ..even good old clean organic stuff...LOL.. hope you don't let things get as far as my health team did...(they were clueless as to what was my problem...but back in the beginning I suggested a systemic candida infection and they ignored me) I had to change providers to get any help at all...good luck

  • Thank you xx

  • Barbara, if you have candidiasis I don't see that the Plexus product will help at all, it sounds to me like your Dr is fobbing you off with dietary suggestions instead of medical intervention! Have you had pathology showing systemic candida issues? If so you should be on an azole or echinocandin or similar to sort it, not put on what is basically expensive yoghurt! Yoghurt does nothing but give symptomatic relief, it does NOT fix the underlying yeast colonisation (and it gets patients out of the consultation room at high speed and low cost). Good luck, you have been having such a rough time lately...

  • Hi

    mitchellbarbara, You are correct when you say gluten "sensitive".....I am sensitive, but don't have full blown CD, Chron's or IBS. My cousins (2) on my Fathers side do have CD and Chron's, so I think I just have enough genes from his side to cause me problems.

    Doctor's are not trained to treat systemic yeast infections, or to get to the root of any problem as a rule....they are just taught to treat the symptoms. This perpetuates you making trips to the office and getting more prescriptions, and filling them at the pharmacy, creating revenue for the doctors, pharmacy and drug companies, which continues so you can get some kind of relief, and keeps their pockets full.

    I have spent many years researching what was going on with me, and finally have myself feeling good......but I am still a work in progress.I will share what I have discovered so far.

    First thing I would recommend is to make sure you have a GOOD probiotic that is micro-encapsulated to withstand the stomach acid and actually make it to your intestines. Without the ability to absorb nutrients correctly, you aren't going to get the full benefit of nutrition or foods you eat....Global Health Trax sells the best I have found, but there are others too......next make sure you take an all natural (whole foods source) vitamin and mineral supplement; many people have a hard time with absorbing artificial vitamins, and we all need supplements since our foods are grown with less nutrition than in latter years. I would also supplement with Krill oil and additional DHA supplements.....I use Doctors Best brand Krill oil, (i get both the krill oil and the whole foods vitamin supplements from Puritans Pride...the DHA I get at our local WalMart store and is derived from algae (that's where the fish get it) and I take 2 of the krill oil and 2 of the DHA (450 mg each) each morning with breakfast along with my vitamin and mineral supplements.

    The omega 3's from the krill oil and the DHA have helped correct a systemic chronic inflammatory issue I have just recently realized I have had most of my life. Inflammation is the basis for ALL diseases in the body....mine was causing heart palpitations that I was told I should learn to live with, since the doctors couldn't figure out why I had them, and how to stop them.......I had really bad allergies all year round to everything ......I had high blood pressure, GERD (bad heartburn and stomach issues)....neuropathy (tingling in hands and feet) that they tested me for and couldn't find out why.....tissue swelling......the list goes on..

    BOTTOM LINE is since stopping the GLUTEN (which was adding to my inflammation issues) and taking what I listed above, I am no longer on any meds, pain or allergy pills..... ALL of these issues are GONE, or are steadily improving.

    Even though everyone is different, we ALL have problems with inflammation of some kind, and we all would benefit by taking control of our health back, by being more proactive. No one knows your body as well as you do, so who better to help it feel the best it can.....

    I hope sharing my info can help someone else.......

  • Ahhh thank you all so much :) I've never used any sort of forum before so didn't know I I'd get a response but at the moment I'm clutching at straws because I can't seem to make sense of the whole thing! :(

    All of your answers have been very helpful - I'm glad I bothered to write something now :) I'm scared of eating gluten (a little bit obsessively now because of my reaction to it) but if that what it takes I'll do it! ;)

    It's my own fault... Should of gone to the doctors with my symptoms instead of doing what I thought was for the best and cutting out the bad stuff... But you live and learn I suppose!

    If only I'd of found this forum before all this mess started - I am literally dreading the thought of eating anything with gluten in it... It's completely disabling as you all probably know haha! (It's nice talking to other people who understand (I'm used to blank faces when I mention gluten)

    Thanks ever so much... That's honestly cheered me right up :)))

    xxxx

  • Hi Ladybug, I am sad to hear of your issues but happy that I have found someone out here that has the exact same symptoms as me!! I to have been tested for CD and come back negative (thankfully) But have also been told by GP to get on with it and told that it's probably an intolerance, I was also called a hypochondriac by my GP which hurt me immensely as I KNOW my body and I know this is not normal!! I have suffered with these symptoms for a few years and am still struggling to keep of the gluten so my issues are still ongoing... Maybe I'm in denial??

  • Awwww :( that's awful! And I was worried myself about my GP thinking I was a hypochondiac! Especially when I burst into tears when he said it was 'just IBS it's nothing to worry about... It won't harm you!' I felt about two foot tall!! It's been a big deal changing my whole eating regime - it's not easy... Gluten is in nearly everything and all I wanted was a little more support! I, like yourself KNOW there's something wrong, the tiniest amount of gluten makes me so ill now and it can last for days.

    I really hope I haven't got CD its a horrid thing to have, but I'm positive with all of my symptoms that there is a chance i might and right now I have no support off my GP at all and that's no good... I'm going to try again after reading all of your helpful comments today, and go back on the gluten hope for the best and ask for a new bloodtest - I can't spend the rest of my life taking Mintec tablets haha... They're useless! ;)

    Your GP needs a good talking too... Fair enough if they don't know that much about the effects of gluten or CD or even the different blood tests you can have... But they seriously shouldn't be going round calling people hypochondriacs!

    How awful! :(

  • My GP apologised to me after my diagnosis - she kept saying there was nothing wrong with me. She said she always tells her students to look at the least obvious symptoms. My muscles were so weak I could hardly walk. I think the problem is that GP's are general practitioners and just don't have the specialist knowledge. Despite that I had had loads of investigations, scans, endoscopies, colonoscopies, barium meals, and other tests too + loads and loads of bloods but never the right ones. There is still a mythology out there that CD is really rare and its not. Even one of my friends suggested I had it and I just laughed.

    Keep asking and perhaps see another doc Ladygbug - although CD is inconvenient once you get sorted diet-wise life is just so much better.

  • :) thanks! I've seen a massive difference even just in the past few months I've been On my GF diet... It scares me to think about eating gluten based products now as I find it so difficult to cope with the conciquences - I just feel that I'm moaning to the GP and he just waves it off like its all in my head and then I get upset because I know for certain there's something going on in there and it's not right! :( my friends keep reminding me that they know 'a little about a lot' but it starts to make you feel stupid when you keep complaining about something that they say isn't a problem.

    I will make another appointment with a different GP and start a new food diary and go from there...

    I really appreciate all this advice and its lovely speaking to people who understand, you can feel a bit lost sometimes trying to explain things to people.

    Thanks again,

    I'll defiantly be using this forum again, I'm not the only one yay!!! :) xxx

  • You need to be eating gluten before the test, and quite a significantly high amount, before taking the blood tests. Also ask for a biopsy of your stomach as this is often more accurate. I have been diagnosed for 17 years and the difderences in testing is amazing so get back on the gluten in high amounts to your normal foods and get amother test done even if you have to pay privately as the damage done by gluten when you are a coeliac is long term ajd sometimes irreversible. Sorry if this has scared you but it is important that you get sorted ajd sooner the better xxxx

  • Hey there :)

    Haha I've never been so scared in my life! I knew about gluten intolerance etc before yesterday but now I feel completely ignorant to CD (which I 'thought' I knew something about) this forum has taught me so much over the past few hours... Things I'd not even considered!!!

    I had no idea that Cosochondritis, nerve pain, sinusitis etc could all be linked and they're all things that I suffer with!

    I'm so so grateful that you've all taken the time to respond to a question I posted thinking "nobody will probably take a blind bit of notice but I'll give it a go because I'm not getting anywhere here by myself"... I was sooooo wrong!

    You've probably had this feeling but it just lovely talking to people who understand!

    You've not scared me though ;) I need to be told these things... Google just confuses me and I need actual people to tell me what to do haha!

    Thank you so much xxx

  • Hi Ladygbug ... I too quit eating gluten years before being tested. Of course everything came back negative. Fortunately, the specialist had also done the DNA testing and I do have the genetic markers for gluten intolerance. I also have IBS ... I live here in Canada and one of the first things my doctor told me to eliminate in my IBS diet was wheat/gluten. He also told me that Migraine Headaches, Fibromyalgia (which I have) Costochondritis (which I also have) and IBS (which I also have) are all related ... all caused by a recently discovered issue with the autonomic nervous system originating in the brain. It's a topic of medical research at the moment. So now, I just listen to my body ... if it says don't eat something, I don't eat it. My doctors don't have to live with my body, I do ... so I listen very carefully and do what it tells me.

    No ...you're not alone! {{{{hugs}}}}

  • WOW!!! I've had Cosochondritis for over two years!!!! The first time it 'popped' I thought I was having a heart attack as you said.... If of never have thought it was associated with this problem!!! Since it happened It re-occurs every few months the last time it happened just from taking my tshirt off its horrible!

    Well... It just shows how little I know about this condition - I had spine surgery two years ago to remove three discs as they were prolapsed and causing horrific nerve pain - that's now been sorted but my left leg is now completely numb (could of been worse so that's fine with me) and have been told by my consultant that all of the Cartlidge in my body - elbows knees wrists ankles ribcage... Basically anything that moves is rubbish I wonder If that is something to do with CD???

    It's probably not, but I've learned so so much about CD since yesterday just from this one question it amazes me!!

    I've started eating gluten again this morning as I'm going to go back to another GP for a re-test in a few weeks and so far... I'm now the size of a house, have awful stomach cramps and within 3 minutes of finishing a piece Of toast the toilet has again become my best friend! :( it scares me to death to think I've got to carry on like this (eating gluten) to try a test again... Not fun :'(

    One good thing though... I remember when I had my MRI scan before my operation and they said my bone density is fine - so at least my bodies doing one thing right ;)

    Thank you so much for your reply... I'm overwhelmed at how helpful you lovely lot are!

    Have you ever had a second test done because the first one came back negative?

    thanks again lovely :) xxx

  • The doctors tried very hard to get me to do the gluten challenge (eat gluten for 6 weeks) I politely refused. I knew it would mean weeks of bed ridden agony and I was afriad of the long term consequences in terms of recovery. It had taken me several years off gluten to get my symptoms under control and provide me with an improved quality of life. I was afraid that I would have years more recovery after the challenge and they could not quarantee me that I would test positive and get a diagnosis. The doctors told me that if I did test positive I would have to eat gluten free for the rest of my life... that was the only treatment. As I was already eating Gluten Zero (100% gluten free), I honestly couldn't see going through the gluten challenge and testing just to get the label Celiac Disease. Here in Canada there are no benefits in terms of perscription foods. We have to pay for our own gluten free foods. I do not regret my decision to forgo the testing and formal diagnosis... CD is in my family history, I have the genetic marker and I had all the symptoms. I went by the old addage "If it looks like a duck, walks like a duck and quacks like a duck it must be a duck!" I choose a gluten free life style because it's the right thing for me and my body. I can certainly understand why people would want to do the test and know for sure. I respect their need to know. I just didn't need to have the doctors tell me what my body had already proved.

  • Haha I love the duck thing!! :)

    Well I can completely understand why you would choose to do that... I'm just very very confused at the moment with the whole thing don't really know what to do for the best but all these comments are helping thank you! :) xxx

  • Hi. Don't forget that, even when you've been back on gluten a while and then had the blood test, the result may still be negative. I never cut out gluten in the first place and had a blood test following a series of tests which were trying to establish if I had a similar problem to my dad - cancer! Another of the tests was an endoscopy. I knew nothing of coeliac disease until all results were in. The consultant told me I didn't have dad's problem but I did have CD, which I had never heard of. He told me that my blood tests were negative for CD but the endoscopy showed I had stage 4, almost irreversible damage caused by CD. So, don't assume you don't have CD if the blood test comes back negative after all. It could still be CS which is causing your own problems. The only conclusive test is a biopsy.

  • Thank you for your reply :) What an awful thing to have to go through!

    I'm new to all this and I hope you don't mind me asking, but what's CS?

    Again, I really appreciate your help,

    Thank you so much xxx

  • Hi- I had the same issues as you. Had colonoscopy because of the IBS type symptoms, and then decided to go gluten-free. Amazing results!!

    Basically, self help is the best help, and who cares what label 'they' stick on you... do what feels best for you.

    All I can say from my own experience is, it took about five years to get the colonoscopy, and it wasn't until the consultant said 'Of course, you could be coeliac' that I went for it! Don't look back on the wasted time, just enjoy feeling better.

    Very best wishes.

  • I agree, the results even in 24 hours are amazing just by cutting out gluten... Everyone has noticed a difference in me, physically and I think mentally... I'm happier! More energy, and not I'm constant pain! I also lost a little weight, I think that was down to all the bloating to be honest because as a family we do tend to eat mostly whole foods anyway which are all home made and reasonably healthy, but even those contain sneaky bits if evil gluten... A good few weeks ago when i was still learning what i could or couldnt eat I made myself a 'GF' spaghetti Bolognese.... But made the mistake of using a beef oxo cube! It took me ages to find out what made me so poorly... And couldn't believe that tiny little thing in a MASSIVE pan of sauce could have such a huge impact!

    :) thanks for your advice I really appreciate it xxx

  • The bottom line is that if gluten makes you ill then don't eat it.

    There is a lot more awareness of non-coeliac gluten senstivity now, at least among doctors that read the BMJ (sounds like yours doesn't), which published an article about it recently.

    Immune reactions to gluten can take many forms, and only one of them is coeliac disease. But the only one that they can test for is coeliac disease. Be glad that you don't have that, but also be aware that your condition may not be completely benign... eating gluten may be doing you physical harm. People with a condition called gluten ataxia get neurological (nerve-based) symptoms from eating gluten.

    To get properly tested for coeliac disease would mn going back on a gluten containing diet for six weeks, which is going to make you feel terrible by the sound of things. The end result will be that you still won't want to eat gluten, so is the official diagnosis worth it? It's crazy and barbaric that in order to get diagnosed, people have to make themselves really ill. And as I said, this test wil only be able to find coeliac disease, not the other conditions caused by gluten consumption.

    The organisation Coeliac UK might be able to help answer your questions about non coeliac gluten sensitivity and gluten ataxia. You can join them free for six months and you don't need to be a diagnosed coeliac in order to join.

    Also, you could ask to be referred to a dietician for help with your diet.

    The main battle is working out that there is a problem with gluten in the first place, and you've done that! Wishing you all the best, poing

  • I totally agree.... Barbaric is a fabulous word to use for this whole process!

    I have been treated for extensive irreparable nerve damage 2 years ago the pain was horrific! My spine is completely useless and was told by my consultant (I was nearly 30 at the time) that my spine looked more like a 80 year olds... However that's thankfully all sorted now and has only left me with a numb left leg which is fine by me considering I couldn't actually walk for a whole year. But again it was the GP who knows 'a little about a lot' and let me suffer for 3 months before I literally cried at him and demanded I see a specialist - the doctor said I had sciatica - the consultant and MRI scan said I had 3 prolapsed discs and a sciatic nerve that was completely imbedded in one of the discs. From that moment on I now have trust issues with my family GP... I don't go there often - I'm not a sicky person, but I do go when I know there is something defiantly wrong with my body - you just know... And I know now from doing the gF diet and the awful symptoms that gluten produces that what's going on in there ain't that normal at all ;)

    Oh my god I'm soooo sorry I didn't mean to rant on, apologies haha just noticed how much I'd typed!

    Thanks ever so much for your reply, I really appreciate it xxx

  • Hi Ladybug,it's awful feeling constantly unwell. Most of the people on this site have felt unwell for many years until find that gluten was the problem. I am like trevjohnny all blood tests negative,genetic testing negative but positive endoscopic biopsy with villous atrophy. I would ask to be referred to a gastro specialist and have all the tests done at the hospital. It's really important to get sorted out properly ,especially when you have a young family and sometimes GP's just don't have the knowledge. You will get lots of support from everyone here. It may take a while to get referred and an appointment with a consultant but try to be assertive as you have a right to all the NHS services provided. Get your results and be kind to yourself. You will soon start to feel better and can get on with you life. XXX

  • I will do that thanks :) every time I go to the doctors about this problem I just fell I sound like I'm moaning and they think I'm a bit I a sick note ;)

    I never go unless there's something 'really' wrong but when I do there's just no support there... I've also got a terrible habit of giggling when I get nervous so I don't suppose that helps them take me seriously! ;) my business partner usually comes with me now because she can see the day to day problems herself and I'm like a big kid who doesn't like confrontation and won't say out loud to a doctor (who always knows best and wraps it is all my head) so will always leave without really saying that I disagree with what they've said... Then it just goes round in circles! - I really do need to man up!! I just don't like complaining though that's all :(

    I will defiantly take all of this info on board though even if I have to just hand the doctor a big sheet of paper with all of this forums knowledge and support on it and I will ask to see a specialist and a dietician - I think that's important.

    I've really got no idea on how to use this forum and I've been responding to everyone's answers separately hahaha! So don't laugh if I look like a right tool and have been doing this all wrong... I WANT to respond to you all because each of you have all given me so much information that I was totally oblivious to yesterday! ;)

    Thanks again xxxx

  • The best way to know is to go to a SPECIALIST...NOT A REGULAR DOCTOR. Make sure to have a biopsy...not just a blood test. Also, make sure to continue eating gluten for at least 6 weeks before the tests. I'm not an expert but when I went to a specialist he first told me that I didn't have it because my blood test came back normal but when he did the biopsy it came back positive. I can't remember the stage I was in but it was serious. It was starting to have an impact on my nerves, muscles and liver. If a food doesn't make you feel good when you eat it then that's your body telling you something. Even if your doctor says you don't have it you may want to listen to your body. Sometimes the intestines are so swollen that it's difficult to get an accurate result.

  • That's brilliant thanks for that,

    It's awful the damage that this disease can cause!! I can't believe it's practically not even heard Of in my GP surgery!! It's SO common just look at the amount of people on here with the exact same symptoms!! Unbelievable!

    That's a great help and I will be asking to see a specialist - like you said, you know when something's not right. I'm just scared that if it goes in diagnosed the damage caused will be terrible like so many other people have said on here - and the exact same thing happened with my back... I was diagnosed with Arthritis in my lower spine and after 5 years of hardly being able to walk an being told its just a trapped nerve I found out if been living with 3 prolapsed discs and a sciatic nerve that was completely imbedded in one of my discs... I really am very sceptical of the diagnosis that I am given now from my doctors now which I suppose doesn't help, as sometimes I just think what if they are right and I'm making something out of nothing (which they make you think) I feel like a complete nutcase sometimes when I go there but if they could see the state of me when I have been 'glutened' I think they'd start believing me...? ;) it's like something out of the exorcist at the best if times haha! :D

    I do joke about things but that is my sort of release - otherwise I'd probably end up crying all the time! This gluten thing really gets you down :(

    I know I keep saying it but I'm so glad I found this group... Everything's become a LOT clearer to me - thank you thank you thank you everyone!! :) xxx

  • Ladybug I know what you are going through. I had negative ttg tests and recently had an endoscopy which was also negative for CD although I had very swollen insides, gastritis, polyps and an hiatus hernia. I also have hypothyroid and pernicious anaemia. However since resuming my gluten free diet my migraines have all but disappeared, my constant sickness and constipation have gone and I have lost 1 stone in 6 weeks despite continuing to eat chocolate etc (just always checking it's gluten free lol). The gastro consultant has told me there is no medical reason for me to be eating gluten free but it's making me feel better so I will continue! I feel both he and my doctor think I'm being a bit of a drama queen as my sister has CD and they think I want it too (as if!!!...I'm so pleased I don't have it but have had the symptoms for 25 years). I hope you get answers soon but do continue to listen to your own body, you know what makes you feel better the doctors can only read blood tests etc.

  • Does your gastro consultant not see the difference it's made to you!!!??? Grrr! :(

    Hi by the way! ;) I can't believe that you've proved being GF makes you and your body feel loads better but has still said that!

    No wonder you feel like he thinks your a drama queen!

    I ALWAYS feel as if I'm just imagining it all when I leave the surgery... It's very belittling the way they just wave it off like you've just got a bit of an upset tummy!

    Even if its not CD we still all need help and support with this... The symptoms are vile and nobody should have to just 'put up' with it!

    Such a shame...

    1 stone in 6 weeks is ace! I don't really eat chocolate because I always linke it to migraines but perhaps I was just eating the 'wrong' chocolate hahaha! ;)

    I was having what I called a 'permagraine' 5 weeks it lasted! No break... Sick everyday tunnel vision feeling like my brain was going to explode - I would of happily had my head cut off just to stop the pain - I started a course of super strength beta blockers which helped but then I started my GF diet and the difference has been amazing!! I'm a wedding photographer so usually just eat on the go and ALWAYS end up ill from gluten and with really bad migraines at every event - but being GF I've actually been able to enjoy my job which is amazing!

    Thanks for your advice my lovely :) really helpful ;) xxx

  • Hi Ladygbug. Like you I've had symptoms for years but was always too busy to do anything about it. I went to my GP last September and he told me to cut out gluten. MAGIC. No symptoms within 48 hours. I truly couldn't believe it. No blisters, upset tummy, lethargy. I felt like a new woman. I recently returned to my gap after putting off what I thought would be the inevitable endoscopy. I went back in to gluten for 2/3 weeks prior to a blood test which came back... Negative. Thankfully I have found a really great GP in my practice and despite the negative result she took the view that all other symptoms indicated CD (even the fact that my parents are Irish where it is VERY common indeed). I saw my consultant on Friday and he has ordered further blood tests but only after I've been back on gluten for 3 months. He advised me that the quantity is not the important factor - it's the length of time you've been taking it. He's also ordered a transnasal gastroscopy (the same as an endoscopy but going in through the nose - less traumatic I'm assured). It's such a relief to be taken seriously. Please persist. It's important that its diagnosed correctly. I know I've been really lucky with my GP but a specialist is the way to go. Good luck. Thank you GFG. Your forum has helped me so much. Best wishes to everyone on here ?? x

  • Ooooh do you get those horrid blisters too!?

    I've also noticed that its not quantity... I can eat the smallest amount and be just as poorly if I eat a big sandwich!

    I'm just about to embark on my first gluten based bacon sandwich and dreading the thought but best get this ball rolling if I'm going to go back for a second opinion eh!? :0/

    Thank for your advice my lovely much appreciated ;) xxx

  • Sorry CS was a simple spring mistake. I meant CD!

  • Hahaha oh good! I panicked and thought it might have been yet another thing I need to learn about! :D thank you :) xxx

  • Hi there, been there done that! All sounds very similar!

    I had negative bloods, went GF felt much better. Had to return to 6 weeks of gluten for scope, which was also negative.

    Since had rast blood tests done which confirmed I am allergic to gluten, wheat & dairy. Cut all those out and generally am much better but still have unexplained bouts of cramps, diarrhoea etc.

    Basically I am now trying not to mentally obsess with what I eat & what's set me off, while obviously eliminating my allergic foods. I have to accept that along with my allergies I have severe IBS and sometimes there is just no reason as to why my guts explode!

    Best of luck to you with getting some answers xx

  • Hi Ladybug, it's very kind of you to reply to all of us but not necessary. I think if you want to contact people directly you can also do that from this site. I know how you feel about giggling when you nervous as I tend to smile all the time even when I feel like s***. My husband said once before going in to see the consultant 'for god sake don't smile at him all the time or he won't realise how bad you feel'. I am 49yrs old ,felt rubbish for the last 11yrs,but hopefully now on the mend. My GP wasn't very supportive to begin with. We were lucky enough to have private health cover with my husbands job. When I lost 1st9lb in 9 weeks last year I just made an appointment and went without a doctors letter but I was at the end of my tether!

    Keep your chin up, you are half way there already. We are all concerned about how you get on. Let us know how you are doing. Don't forget when you feel really lousy the cleaning,ironing and other jobs can wait and sit down and have a rest. Busby xxx

  • Hi Ladybug ,it's me Busby again. Just read some of you previous replies. This CD thing really made me depressed last year,in fact that was one of my worse symptoms. So your not alone and you definitely will start to get better. And there is always someone online to help you when you feel down. Last year all the replies I got made me see sense and Marywales was very supportive. If you feel you need a good cry have one !

  • :) haha thanks Busby ;) I didn't know what to really do in here... I'm new to all this forum stuff and didn't want people to think I was rude by not replying when they've taken the time to read my question and send me their opinions haha! It should have a like button, like on Facebook, I don't want anyone to think I'm not greatful ;)

    This gluten business really does make me feel down... I've always thought I was a bit hormonal but since I went GF a few months back I'm like a different person! Even I could at times tell I was being a complete bi**h haha... It makes me agitated and some days EVERYTHING can annoy me and it feels like the world has it in for me!

    I know that may sound a little dramatic but I have actually cried at the Christmas tree in the past because I was SO tired I just couldn't face taking all the decorations down! Writing that sounds ridiculous now... I've only ever told my business partner about that and she came around to help me bless her! ;)

    I started eating gluten again today (preparation for a retest) and I have to say I feel awful... And weirdly a little bit mad at myself for not going to the doctors a few months ago when I was still eating some gluten (not bread or evil pasta or pizza - I quit that a few years ago) but back then I was oblivious to CD which also makes me feel a little silly.

    If I'd of don't that I wouldn't be having to do this for the foreseeable 6 weeks! :(

    However.... I have been completely craving gluten for ages now and that bacon sandwich with really soft fresh bread was the best thing I've eaten in forever haha.... Well the first 3 bites were anyway until my stomach started making the tell take grumbling sounds and then the cramps etc started... Was it worth it? No way!! :(

    Can't wait already for the next 6 weeks to be over and I'm not even 24 hours into it yet!

    Thanks for your kind commen... I'm sorry if I've sent a billion email replies out to everyone, I just wanted you all to know how much I appreciated all this help... It's amazing thank you xxxx

  • watch out for the bacon...as well...nitrates and such... can also upset your stomach...not necessarily gluten

  • You dont need to be diagnosed, depending on your circumstances, unless you get free food on prescription, theres not much point in getting diagnosed, it just makes your life hell for a few months :(. If you think you have coeliacs, just see if your doctor agrees with what you think and go on a gf diet, food in shops at the moment is so much better than on prescription :). Hope ya feel better sooon

  • I'm allergic to gluten and till today i have never come across anyone else who has said they are allergic.

    I was negatic for the blood test but had been eating gluten during that e for testing and that was when i found what was really wrong with me.

    Tingling lips,swelling lips and face and throat made me stop before the result was back.

    I am not ontolerance or cd i am allergic.

    Every rash and my itching head for the last 25year was the alerg.e

    I also have ibs this and t allergy was confussed fir some time but i now know the differenc

    i found exstremely bad fflare ups of ibs can even cause a really bad sore throat while a movement is happening in my intestings.

    Ihave also found i have to avoid vinegars like spirt vinegar and syrups.

    I've been much better since realising to avoid those as wwell.

    But it is my understanding that many people with ibs do get headaches. I myself have had bad headaches but as of yet have not worked out what the trigger was at the time .

    I was told my many to get retested for cd in a few years but it is not cd and it is very frustrating when ppl say that to me as my allergy isn't possible. I had my face swell from contamination alloan it is scary to live with and my hands have bled from the constand rinsimg after touching anything. Bread scares me .

    I've even found this year that even handly bread or touching a surface it has been on then touching my face it causes the burning to start.

    I've had burning so bad you feel yoi're on fire and itching thst makes you scratch till you break the skin it is not easy living with it but i cope.

  • Oh i too got blisters on my chest during the time i was eating gluten.

    Modified starches are also mostly gluten and you have to watch out for those iv even had gf food from the shop with them in cause they either do no t know or aregoing by cd guide lines .

  • Have you had any antihistames i have to them if i get burning or itching if i fall ill tyhey do nothing but for mild reactions they work.

    Though i had some from the supermarket and they wheren't much use. The strong ones from the doctor was the ones that worked. Apart from when i dared to eat lentils and was itching like crazy for 3 days and them ill for aweek.

    They didn't help me at all during that.

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