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Hello i am frances from uk , i have been having real problems with my health for as long as i can remember, i have been diagnosed with chronic fatigue after all tests were clear about 6 years ago,

The last 4 years since having my 2 youngest kids has just been a constant battle with stomach pain, joint pain and extreme tiredness. In april 2012 i started having heart palpitations which are quite bothersome, i had tests and they were put down to ectopic arrythmias, i now take a beetablocker to help keep them under control, i have had bouts of low iron, hemagloban is always fine but iron stores swing up and down depending if i take supplaments, i have also had really low folic acid in the past as well as b12.

Since october last year any time i eat i get. Extreme pain in my right side it feels swollen and just agony, i have excessive wind and pain passing bowel movements. The only thing i can eat is home made soup and toast without the pain being unbearable, they removed my gall bladder as they thought that might be the culprit, unfortunately that didn't help, i had a ultrasound and colonoscopy and they were normal, i did a celiac home testing kit but that was also negative, but i honestly think it may be celiac disease. What do you think?? Ps i have been treated with every medication possible for ibs with no relief in fact the peppermint oil made symptoms worse. I would love to hear what your thoughts are, i feel so ill that even getting out my bed is a struggle! Xx

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Have you ever been tested for lactose or casein intolerance by chance?

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Hi, and welcome to the forum.

I don't mean to cast aspersions on the NHS, but from what I understand it is pretty hard to get a full celiac panel run over there. They tend to want to do the tTG and leave it at that. But if I were you I would want the whole shebang -

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

with the possible elimination of the first two as being older and outdated. But the Deamidated Gliadin Peptide is the newest test which has replaced the first two, and is highly specific to celiac. Is there any possibility of getting these tests done?

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I sure think that with your symptoms you would want to check into it. Celiac can be helped by diet, so if you have it, you should be able to get well. I am hoping you will get some definative answers with the help you need.

Diana

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    • No I'm in the UK, from what I've been told that's a good thing for gluten labeling and standards compliance. What you and everyone else on here says makes me sense than what the doctors are saying (a confused message at best is what they're giving me, each one with a slightly different version of it). My referral letter is in the post so on theory appointment may not be that far away. I have a load of my favourite Quorn stuff (non-gluten-free version) in the freezer so perhaps using that up may be a good way to proceed for now. I'm out at the moment and torn whether to try chips from a café, in the strict gluten-free future would probably be a no-no but in current situation probably not so bad...
    • I also only really eat one meal a day and always after I get home. I never really feel hungrey. I call it 'Pavlov's dog in reverse'.  I think it comes from so many years of food making me sick. I have gotten to the point where I now at least can eat a sandwhich and some fruit during the day but it wasn't a quick process. When folks get like that it is very important to make sure that one meal has a good amount of both calories and nutrtion.  If your diet is how you describe you are starving yourself.  You need to get yourself used to eating again.  What helped me was carrying a baggie with some nuts and dry fruit with maybe even a handful of gluten free pretzels and always some chocolate baking chips. I just ate couple pieces when I thought of it throughout the day. A little bit of cheese and a couple safe crackers, a piece of fruit or a small tin or individual serving snack pack are also good. You need to get some nutrition during the day so you can feel up to cooking a simple full meal  for dinner. I hope your feeling better soon.
    • Ok, I can't seem to find my first lot of blood tests that were done for Celiac screening, they did include TTG I remember that much, and I am getting another copy of it but another test did come in today.  I don't know how different tests are done around the world and I don't get all the medical jargon but this is what it states, ******************************************************************************* HLA DR/DQ Genotyping for Coeliac Disease, Specimen type : EDTA blood Method : Detection of sequence-specific oligonucleotides (Gen-Probe). HLA-DR - 1, 13          DRB1 - 01, 13 HLA-DQ - 5,6        HLA-DQA1 - 5,6      HLA-DB1 - 05, 06 Interpretation : No genotype susceptibility for coeliac disease.  The DQ2 and DQ8 antigens associated with increased risk of coeliac disease were not identified in this patient.  In the absence of these antigens, coeliac disease is extremely unlikely.   *******************************************************************************   I have read the horror stories of blood tests and scope biopsies not be done right or flawed but here is what I do know as of now, At the moment the most non invasive test I can have done say negative.  I have double scopes (endoscopy and colonoscopy) booked for the 12th of October with results from biopsies expected a week or two after. Chances are they will show, a) signs of coeliac disease (even if the odds are low it can still happen), b) show signs of something else entirely and we will be busy dealing with the ramifications of that or c) it will show no signs of coeliac but I will still be suffering from gluten sensitivity (which is harder/impossible to measure clinically). My GP has told me that stress and anxiety can be a cause of all the symptoms I have been experiencing and suggests if the scopes show nothing that I may benefit from something to treat anxiety, i.e. antidepressants.  Not in a, "Oh we don't know what it is so have these," kind of way, he agrees with the thought that the scopes could indeed show coeliac, something else or even be negative. I did tell him that I could have a sensitivity and that even without benefit of clinical results, some people have gone on a gluten elimination diet for a period of time to see if they get any relief.  My question is this, if the scopes come up negative and I try eliminating gluten, how long would it be before I saw any results or improvements?  I have read enough here and elsewhere to know that everybody is different, some see results within days, some see results longer but are there any guidelines for how long a test like this should be undertaken for?  I have heard everything thing from two weeks to two months.  All of this is entirely moot at this point but I know that even if the results said clear, there would always be a little part of me that wonders if it could be a sensitivity that is the problem.  Any thoughts or advice greatly appreciated, and a thank you to all those who have taken the time to respond and offer advice and encouragement so far.        
    • We don't delete accounts but can delete any personal information and change your screen name if you would like. Just send me a personal message with three possible screen names. For the record you can edit most things in your account area with the exception of your screen name.
    • Thanks I never heard of that dye before, I guess I have to find more natural meat thanks for the suggestion. 
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