New to the site need help please..........anyone!!

Hello I am new to this site and just wanted to fill you in on my problems and just see what you all think??

Since i was about 12 years old, i have suffered with IBS, sickness, diarreah/constipation (never normal always one or the other), bloating, dizzyness on and off, having to go to toilet in the middle of a meal (to which my Dad always says thats impossible your food doesnt go through you that quickly!!) anyways, when i reached about 17 i was diaganosed with Overactive Thyroid very low Iron , B12 Deficiency and Pernicious Anemia, to which i have tablets and the B12 Injection every 12 weeks (although i think i need it every 8-10 weeks-ongoing battle with doctor) my stomach is so sensitive i swear i can get ill watching other people eat something. The list of symptoms grew, arthritus, psoriasis, gallbladder pain(had scan nothing was wrong), very bad pain on left hand side that goes into my back and hip and also rumbles VERY LOUDLY from directly where the pain is, very heavy periods that become irregular at times then sort themselves out etc, the list goes on and on, anyway had a biopsy it came back negative for Celiacs, had so many blood tests that actually not sure if they have done the Celiacs blood test, went to the doctors last tuesday (4th April) and my doctor said she is 100% i have Celiacs but because the biopsy came back negative "lets just call it an intolarence" and go gluten free, which i have done. I am waiting for an appointmnt to come through with a dietcian.

So my question is what do you all think? Celiacs or not? or does it matter if i know the difference as they both have the same treatment i.e. Gluten free diet?

My personal opinion is that i am Celiacs but would really like to know??

Thank you for taking the time to read this very very long post lol

Paula x

16 Replies

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  • Hi Paula,

    you have the same immense list of problems I had. My blood test came back negative but I had been gf for six weeks before they took the blood. I now react so massively to even a tiny amount of gluten that there is no way I am doing the assault, so I use the word coeliac if it helps in restaurants but just avoid gluten in any form including the variation in oats.

    My health was transformed by giving up gluten. I am fortunate not to need the help with finances that being registered coeliac and getting food on prescription gives. I think that is the only real benefit, and since I also cannot tolerate wheat or codex wheat starch or the levels of gluten allowed in food for coeliacs it doesn't matter to me. It is useful to be a memeber of the Coeliac Society, and if you are not diagnosed they may not want to let you join at first, but if you write a letter (a copy of this query would probably do) they should let you join. It is a good way to get alerts and general information.

    There is no 'just an intolerance'. Some coeliacs have no obvious reaction to eating gluten - and for them it is a bit like smoking which people chose to do even though it significantly increases risks of getting dreadful cancers, losing limbs, going blind etc. Being so ill that you cannot really live NOW is a really big deal.

    I understand it would be nice to know but the knowledge in this field is changing all the time. Look forward to better health. Don't worry about the label. Insist your kids get checked if you have them.

    Lois

  • Thanks for posting Paula.

    Many of your symptoms seem very similar to coeliac disease. Indeed developing other auto-immune diseases is very common in coeliac disease. So in answer to your questions:

    1) yes it does sound like you have a lot of symptoms that are similar to coeliac disease

    2) we can't tell you if it's coeliac or not - only a doctor can

    3) personally I believe it is important to know whether it's coeliac disease or not albeit the treatment i.e. a gluten free diet would be the same as you've stated.

    That's because coeliac disease can be associated with other health problems & my concern would be that if you just go gluten free without being formally diagnosed you may not get the kind of regular check ups that 'official' coeliacs are meant to e.g. bone scan, full blood count checks & others for vitamin and nutritional deficiencies. Of course your blood checks for your other health problems may partly cover these but not all of them. Going gluten free without a confirmed diagnosis & proper dietitian advice can actually be damaging for health. That's because the GFD is traditionally low in fibre and cholesterol lowering foods. Often a GFD has to be supplemented with additional vitamins and minerals to replace those that are normally added to mainstream cereals (e.g. iron, vitamin D, folic acid etc). Additionally you may find that each Dr you see in future maybe dismissive of your GFD. For example any time I am treated my health professionals they look quizzically and ask how I was diagnosed - as if I did it on a whim when the moon was full - perhaps they ask as so many celebrities are jumping on the 'gluten free glamour bandwagon' in a bid to lose weight. They might rarely see diagnosed coeliacs.

    4) instead what I would recommend is that you ask your Dr to repeat the blood tests for:

    IgA tTGA and IgA EMA serological tests - these are normally good blood tests for coeliac disease

    Also ask your Dr to run a blood test for IgG in case you are IgA deficient - which may have resulted in your having a false negative blood test:

    In the UK the NICE healthcare guideline recommends using IgG antibody blood tests in those who are IgA deficient.'People with IgA deficiency will have a false negative result if IgA-based serological tests are used in the diagnosis of coeliac disease.'

    Note: You'll need to be eating gluten at least 6 weeks before these blood tests for you to have a true positive reaction

    5) as you've said yourself you'd really like to know if it's coeliac or not so for that reason I'd ask your Dr for repeat of the blood tests.

    Of course it's great that your Dr is being supportive & that you're waiting for an appointment with a dietitian who should help advise you further.

    Ultimately it's your personal choice as to whether you decide to just go GF or continue to push for repeat tests. I know for myself I'd have been loathe to go on a GF diet and put in the commitment needed to stick to it without a firm diagnosis.

    Keep us posted on your progress and good luck.

  • Hi Paula, Fiona is right of course. However, even coeliacs seem to get immensly different treatment depending on their doctors. If yours looks after you properly and pays attention to the health issues you are likely to have if they think you have coeliac disease you will end up with the same service.

  • Thank you so much for answering me so quickly, i do have a good doctor who is very understanding but at the same time she has been my doctor through out all of this since i was a child, i feel slightly miffed it hasnt all been sorted before now 21 years of struggling is a heck of a long time! , she said she believes i am Celiacs but because i get stressed and nervous she doesnt want to put me through any unnessasry test when she will provide me with the same care, she has said that when constantly checking my Iron, Thyroid, Folic & Ferritin she will run a full blood test on all deficencies. I am on day 4 pf being GF and i have to say feel a little better already, i have a lot of headaches and before i go to the toilet (no.2 sorry to much information) i feel very sick and bloated but as soon as i go i feel better?? is this normal? I have 3 children and have some concerns for my eldest daughter who is 12 i may need to get her checked out sooner rather than later. Thank you so much , its so nice to talk to people who know what i mean and dont just think im a hypachondriac!!

  • Well it sounds like your Dr is very sensible & is supporting you to cover off the right tests which is great! It is always a tricky balance in cases like this. I guess one point I'd raise is to ask whether she'll place that you are a coeliac in your notes or not - i.e. how it will be recorded so if you have future tests in hospital / or are admitted and need a special diet it is recorded and not ignored.

    Glad to hear you are feeling better so quickly. Just bear in mind you may get 2 day headaches etc as you withdraw many carbs & that if you ingest gluten after cutting it out you may get a more severe reaction as you're body builds up strength and attacks it in full force. Have you been given info on how to avoid hidden gluten? I would still ask the Dr about considering the blood tests I mentioned. At least then if you ate gluten before & were positive they could probably make a note in your medical file to say in light of all the other issues you have that a full endo maybe stressful and so they're going to conclude you are a coeliac. I mention this now as the more you give up gluten the less likely you'll want to eat it again for any future coeliac blood tests.

    ref the toilet problems do ask your Dr for advice. Some coeliacs experience the same thing some don't. It's worth seeing how long that lasts for and mentioning to your Dr to rule out anything else causing problems.

    If you & your doctor believe you are a coeliac then it is very worthwhile to get any of your close biological family tested. After all it could avoid bone problems, infertility issues and many cancers related to CD. Hopefully your daughter won't have CD but if she does then catching it early means there's less long term damage to the villi, bones etc.

    Feel free to chat anytime. I'm sure we've all been looked at like we're hypochondriacs at one point or other !! Only to discover we knew our bodies well and discovered there was something wrong aka Coeliac Disease.

  • Hi Fiona, i completely see what your saying, i really feel already though that i dont want to eat gluten again, i think i will see what my dietician says and then go from there, when i am next at the doctors (i always am!) i will ask her if she can put on my notes that i am celiacs even though biopsy was negative, i will also double check if she has done the blood test or not?, thanks again i really appreciate it x

  • glad you have a good gp who seems to have worked hard for you -hope all turns out well and you feel better soon ( sometimes just knowing the name of the "monster " helps to fight it ( in your head)

  • Thank you, i actually felt a huge relief just knowing that it is actually something and not in my head, i have questioned myself alot of the last few years, is there something wrong or am i almost willing something to be wrong, if that makes sense, my doctor has always said to me that some people are more in tune with their bodies and I might pick up on something very mild that another person might not even notice, thank you for your well wishes x

  • Hi Paula, thank you your comments, i have same symptoms most of my life and was treated for IBS for 15 years. Last year I had a postivebllod test for coeliacs but negative from the biopsy, because of this my GP will not send me to a dietian, for scan, just said to eat gluten free despite both my children being confirmed coeliacs blood and biposy. Im glad you have the support of your GP it makes a big difference, Im glad my children have a good GP/ specialsit support other wise I would be relying totally on website community support.

    Take care

    Jo

  • Hi Jo, I have been on lots of different tablets for the past few years (10+) for IBS, i have now come off of all of them to see if going gluten free is the answer, the tablets masked a few issues but never made me feel better, im sorry your doctor doesnt seem to be helping you very much, can you see another doctor? How old are your children if you dont mind me asking, im glad your children are being taken good care of. I have 3 children 6,9 &12, im tempted to get my eldest checked out by blood test, but unsure as to wether the little too are a bit too small to put them through the ordeal of a blood test?

    I have found more information online this site inparticular than at my doctors, its nice to talk to people who really do know how i feel.

    thank you for taking the time to answer my question x

  • Hi Paula I have daughter who just turned 16 and a son who is 13 who also has a server nut allergy both was diagnosed July 2011. I feel they are never to small to be tested Martin (son) was tested at 4 after developing analyphlatic shock after eating peanuts but he was clear for cd. at the time. He knows how to manage it how to administer his epipen and has grown up with it, so know he knows what he can and cant eat and how to check labels without feeling down about it. as this is his normal. But feel with Emily (daughter) if she could have been tested earlier she would understand how server CD can be, she gets dwon when her friends go to town for lunch she says she cant go or goes but just eats certain chips/food which is hampering her soical life to a degree. She is amazinly resilient so copes most of the time,like i do. in my opinion because you have little ones I would test them, but that is my opinion as i feel Martin has dealt with his allergy of nuts and knows no different whereas Emily has grown up with something she now cant have. Iam in the process of speaking to GP as i have delevoped B12 anemia and had to take 3 months of work, they appear to be more mindful and supportive. Jo x

  • Hi Jo, yes thats a good point, i hadnt really thought about it like that. I think i will speak to my Doctor about getting them checked.

    B12 Anemia, now that is something i can relate to, Im glad they are more supportive about this, have you started with your jabs yet, they really do make a difference? my B12 was so low before my jabs that i was sleeping up to 12/14 hours at night and still waking up tired, i would then just randomly fall asleep everytime i sat down in the day as well. My hair started to fall out badly until the sides of my head had massive bald patches, this was a very low point for me. I was taken up to 9 immodiums a day just to do the basic school run etc. B12 deficiency is painful and scary and i know how horrible you must feel. I will be on my iron tablets and jabs for the rest of my life but although i still have a few issues they really do help x

  • I have about 7 close relatives who are coeliac, including son, brother, father, aunt and cousin. Of the 7, one had negative biopsy and another had no biopsy, but we 'know' they are coeliac due to their reaction to gluten, and the improvement in health on diet etc etc. There seems little point in them going through the pain and prolonged illness of eating gluten for weeks so they can have the biopsy. That's how I see it anyway.

    Hope you feel better soon.

  • Hi, even though it hasnt been confirmed by biopsy has it been recorded in their medical notes as confirmed celiacs? Do they get all of the checks the same as the confirmed relatives? I.e. regular bloodtest to check for other issues

    Thank you for answering my question i really appreciate it

    Paula x

  • Fiona - Well i have spoken to my Doctors surgery this morning, I was on the phone far an age!! it turns out that they dont think that they have ever done the blood tests that you suggested IgA tTGA and IgA EMA serological test, I have my doctor phoning me tomorrow as she is not in today to discuss this, i have to say im feeling a little annoyed about this, if, as she put it, she is 100% sure i have it then WHY would she not of done these tests? i had the biopsy? im so confused, i feel like im getting nowhere, the thing that is concerning me is that after only 1 week of GF i feel better than ever and im nervous the longer i leave it going back onto gluten to have these tests, im dreading it. I feel i have to do this though for my childrens sakes if not my own.

    Any advice on what else i should say to my Doc tomorrow when she phones?

    thanks again

    Paula x

  • Ok so forget all that lol, spoke to my doctor today and i have had the test and it was negagtive so it seems i definately havent got Celiacs but maybe am Gluten sentitive or intolerant whichever you like to call it. The best news is that there is no concern for my children and that they do not have to be tested unless they start to feel poorly.

    Thans for all the advice everyone

    Paula x

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