A couple of years ago I had a positive coeliacs antibodies blood test but biopsy was negative. So I was told I'm not coeliac.
I've had IBS for years. Bloating, alternating bowel movements, pain and discomfort etc etc.
I have been gluten free 100% for several months and feel good. I miss proper gluten food sometimes and on Sunday when we "ate out" I gave in to my lust for home made steak and ale pie with Apple pie and custard to follow. I must say it was delicious!
Big mistake!
The next day I had terrible uncontrollable "wind" that smelt like something had crawled up inside and died! - yuck - also bloating, rumbling/squelchy noisy tummy, and constipation and the runs in the same movement several times that day! Sorry to be so graphic! Lol! I had a raised temperature, headache and sore achy joints. The smelly flatulence is still making it's presence obvious ( not much fun for poor hubby ).
I had another antibody blood test 2-3 months ago that came back negative, which is probably why I succumbed to my longing for gluten. I guess I over dosed on gluten but wonder (even tho symptoms were minor compared to true coeliac sufferers) if I actually am a coeliac or just sensitive. Or maybe neither?
Thanks in advance for comments
Wendy
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W3ndy2159
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I am waiting to see the consultant in July. I had the same, blood positive and biopsy normal. I too have taken out gluten and wheat and have noticed a tremendous difference in aching joints etc and when succumbed to 'normal' food had everything go haywire. my gp said that it has been known for this to happen in quite a few patients. So I will be interested to see what the 'expert' says in July.
Thanks for reply chris21. Good luck with consultant in July. Hope you get answer to your condition! I feel great being gluten free but sometimes I get a real longing for normal bread/rolls. Especially when I walk into supermarket and the smell of 'freshly baked on the premises' overwhelms me. I feel like the bisto kid and follow my nose! I resist the urge to buy but can't help walking upto the bakery to have a look! lol!
UGGHHH ... sympathies! I know this is probably coeliac's heresy but I wonder how much a positive coeliac diagnosis is necessary seeing as you can see how terrible that gluten makes you feel! My mother was diagnosed coeliac. My daughter had all kinds of gut problems as a child and spent years seeing various consultants. I told them my mother had coeliacs but my daughter's blood test was negative. After 12 years, I just took her off wheat and all the doctors/specialists said the change was spectacular. Years later for all the above reasons or more, I decided to come off wheat. Same thing - within two weeks, I was not only relieved of variations of your symptoms, but also some very embarrassing 'urgent situations' where I had to leave knickers in bushes, public toilets etc etc!!!!!! Also, relieved of the pain of arthritis, my skin cleared, my belly disappeared etc etc. I went back onto the wheat for 6 weeks to get the blood test which proved negative (they say it often does), during which time, I felt terrible. Three months later, I was offered a biopsy, which meant going back onto the wheat. Couldn't face it, so officially, I'm 'undiagnosed coeliac/wheat intolerance'. Tiny bits of wheat on holiday recently brought all the symptoms back. To me, it doesn't matter what the diagnosis is, I don't want that pesky gluten coming anywhere near me!
Thanks for reply roxy-55. Since going gf I too have had relief from various symptoms. My skin and aching joints certainly feel better. I must not deliberately get glutened as my body certainly protests strongly. Bowels still producing nasty smells-yuck. Nearly a week now!!!
I have been told I do not have coeliacs, but you couldn't pay me enough to put it back in my diet. This of course means I will never do another gluten challenge and get tested again (even though I was told a retest in a few years may return a positive coeliac result).
If something feels like it's poisoning you then it's a poison whether or not the doctor is interested.
Me too. No more deliberately eating gluten! It seems to be the longer I am gf, then get glutened, the worse I react. Definitely feel I was poisoned! Thank you for rely
Hi there W3ndy2159, I think that you have answered your own question as you know that gluten makes you ill for whatever reason. But because you have not been formally diagnosed you have doubts which's human nature, so here's a post on here on the same tack:
In an ideal world you would have been diagnosed as the blood test was positive but not the biopsy, now this could be because you were not ingesting gluten or enough gluten for villi damage to be seen. All coeliac are different in their sensitivity so it is a complex condition.
There are advantages to a diagnosis like being in the system and follow ups like dexa scans and most importantly the psychological impact of KNOWING with no if's or buts, so I would go back to your GP and chat about your symptoms and the reaction you've had after eating gluten and consider seeing a nutritionist and keeping a food diary to monitor your reaction to foods.
At the end of the day if gluten makes you ill then avoid it and just learn to live with needing a gluten free diet because it works for you. And you do not have to justify this to anyone as the more we try and explain ourselves the more neurotic it can make us feel, so you have to learn to simply tell others that you need a gluten free diet full stop. And soon it will be second nature and those around you will see the improvement in your health/well being.
Thanks jerry. The link is helpful too. I'm definitely on a 100% gf diet for the rest of my life. my reaction is a definite answer to me-I am sensitive to gluten wether I'm a diagnosed coeliac or not. Thank you for replying to my question.
I don't have coeliac- negative for blood test, biopsy and genetic testing.
But I can't tolerate gluten. It took me a while to come to terms with that- I felt I was just being neurotic. However, now I happily avoid gluten like the plague- it's worth it not to have abdominal pain, distension, IBS etc.
I also think my body is healthier because I can actually eat more food if there's no gluten present.
Same here! I tested negative for the blood test, even though my father has CD. Regardless, I feel so much better with out it! If anyone needs convincing that gluten should be avoided, read Wheat Belly or Grain Brain!
Thanks Lalala I know what you mean about feeling neurotic about explaining why I'm gf. I've decided it has to be 100% for ever now. I can't keep avoiding people and confined places when I've been glutened as the dead animal that crawled up into my bowels keeps making me pass such disgusting/uncontrollable wind. It's so bad that when I walk. Every step is 'trump' 'trump' 'trump' 'smelly' 'smelly'. I'd hate to be down wind of me lol! I certainly feel healthier gf.
I seem to have a different CD than what is recognised, first diagnosis in 1955 aged 6. In the 50's wheat was wheat and not tampered with so a Coeliac avoided it like the plague! Barley & Rye hardly used in those days. My diet was mainly Cornflour based. By the age of 13 (1962) I was capsule biopsied and declared as not having CD but possibly Tropical Sprue and then weaned back onto normal foods which was successful and a slow process. Wheat would make me pass out, exertion had the same effect with wheat. In 2007 having been chemically poisoned my CD was active and rediagnosed. With a confirmation in 2011 by a professor.
When you eliminate anything from your diet for periods of time you will get a reaction as it becomes a foreign body.
My gut is normal but my endescopic marker is Reduced folds, D2. I cannot tolerate any gluten or dairy or foods that produce formaldehyde, any allergy acquired from the chemical poisoning.
Pretender maybe that is why my flatulance is so smelly - formaldehyde!- it certainly smells like a decaying corpse! ( not smelt a human decaying corpse-just dead animals!!! Lol!) I agree with the notion of abstinence then introduction may cause more of a reaction. I'm sure I never use to smell this bad before! Lol! thank you for reply
I realise formaldehyde for preserving rather than speeding up the decaying process!
hi Wendy - you have antibodies to gluten - this means your body does not consider gluten to be a food but an enemy and the symptoms you get are your body attacking your body as it tries to get rid of the gluten - its similar to attacking an infection I think. Unfortunately the majority of the NHS at the moment doesnt understand gluten illnesses and thinks there is only one part of the body that is attacked and that is the gut and hence coeliac disease. Fortunately there are forward thinkers such as Prof M Hadjivassiliou in Sheffield UK who understand and are leading the way in the understanding of gluten illnesses - we now have the Centre for Gluten Related Disorders in Sheffield. I dont have coeliac disease but have the positive antibodies (and a gluten sensitivity or gluten ataxia) which has caused much worse symptoms than the majority of coeliacs suffer - including damage to the brain and peripheral nerves in my feet as well as vitamin deficiencies, balance problems and fatigue - so please dont underestimate the seriousness of gluten sensitivity - the antibodies tell you that you need to avoid gluten and just because your doctor doesnt understand this doesnt mean that apple pie will be worth it for your health!! My stock phrase is that a pie isnt worth my health! If you have been strictly gluten free then your body will become free of the antibodies which may be why you didnt test positive for them - as you have now eaten gluten you have restarted the antibodies and it takes months to get rid of them! You know the answer really dont you?!! There are lots of gluten free products out now including apple pie, bread and cakes and Genius now do steak pies too!! Gill
Thanks Gill. I'm interested to hear about the professor at Sheffield. I live in York. I wonder if I could be a guinea pig for his research?
I have Hashimotos thyroid disease. Which is an autoimmune disease and positive thyroid antibodies which is known to be effected by gluten. Quite often hashimotos and coeliacs go hand in hand. I've recently been Dx with osteoarthritis which is wear and tear arthritis, but I have read that it is now thought to be an autoimmune condition in some cases (rheumatoid arthritis is autoimmune) too. Maybe gluten is responsible! I have to say. I'm not overly impressed with pre made gluten free foods. I tend to make everything from scratched-including pies etc.
my doctor told me the other day that most people have some degree of gluten intolerance especially if they eat a lot of it, my test was also negative but there is no way I am ever eating gluten again as the four weeks of eating it was horrendous doctor wanted me to repeat the blood test but I said no, I think doctors like to give a diagnosis but sometimes its not possible!
Thanks hilly2. I guess I now realise I need to be 100% gf for life. I'm sure this week, I have produced enough smelly gas to cause a mushroom cloud like a nuclear explosion lol! :-)))
There are several points to be considered, and since my diagnosis by biopsy ( and they were looking for something else at the time not coeliac disease ) I have learned to make some distinctions that few practitioners seem to.
I know people who have had the blood test and the biopsy for coeliac's disease - it has come back negative - but they still need to be on a Gluten Free diet, one of whom is being used by a research clinic to try and determine why?
So as with most things in live there are exceptions to the rule.
There is also a difference between intolerance and being allergic to. Coeliacs are allergic to gluten, people with a gluten intolerance can have a certain amount without reacting. I have a friend who is intolerant, he can have say one sandwich a day but not two. Where as me being a coeliac cannot have any what soever. I have been caught out on a couple of occasions and for me it is akin to food poisoning.
Then there is the distinction between wheat and gluten. I think many people and particularly women that I know have more an issue with wheat and then there is various types of wheat and ways it is prepared that affects the way our bodies process it. In your case I would suggest that you eliminate wheat ( as opposed to gluten ) from your diet ( it is not as limiting as gluten ) and see how you go for say 3 weeks. If that doesnt do the trick go back to the gluten free if that is what is working for you - after all it is a healthy diet, just not always convenient.
A foot note, if your body is having issues with wheat or gluten, and you stop eating them, your body's autoimmune will loose any resistance to dealing with it that it has developed over the past years - which means after about 3 months of eliminating wheat, etc from your diet and you do consume wheat, etc you will probably have a much bigger reaction to it.
Thank you brybaby. You are right. I never had this severity of problems when I used to eat gluten/wheat. I gave up because I also have Hashimoto's Thyroiditis and it is recommended to be gluten free as gluten causes inflammation and antibodies. Also it is supposed to cause inflammation of joints etc. thank you
I am gluten intolerant and I cannot tolerate any gluten whatsoever - I will react to the slightest bit. Like you it is like food poisoning. Besides I cannot eat Free From products whereas apparently many coeliacs can. I think that everyone is different. I cannot eat wheat either.
Hi, I have never been diagnosed with coeliac but due to symptoms such as those described above have excluded gluten/wheat for the last 5 years and never felt healthier. If I accidentally have any gluten my symptoms are horrendous and the pain indescribable so I just avoid it at all costs but occasionally make mistakes due to labelling. I would not have the tests required as I don't want any symptoms as a result of the period you are required to eat gluten. I am not tempted to eat any gluten containing products no matter how delicious they look as the three days that would follow are not worth it.
Hi I was really interested in reading this as I am experiencing exactly the same thing. My symptoms started around 4 years ago with persistent morning nausea and diahorrea. This came and went for about a year and then came back and stayed!!! initially I was given blood tests for coeliac and also lactose which all came back clear. I was then referred to a gastroentrologist who performed a barium enema and endoscope which both came back clear. Because of this my dr assures me that I am not coeliac. My symptoms continued and having seen 2 further specialists I was then diagnosed with a functional bowel disorder. (They r the experts, rite???) Since then I have had a sigmoidoscopy which again showed up nothing sinister just a few diverticuli... I suffer from almost daily diahorrea, (only first thing in the morning)!! nausea most days, frequent headaches, fatigue and often a feeling of brain fog... lightheadedness, Since this has been going on for so long I just feel as if this is my life.. most mornings when the kids go to school if I am feeling really rough i just hop back into bed with my hot water bottle for a few hours... I am only 43 and my 82 year old mother has more energy??? Sorry for going on but I just want my life back. Does anyone have these symptoms??? I tried going gluten free for a while but dont think I stuck at it long enuf. My Gp has given me every IBS medicine under the sun, Ive been to Jan De Vries and now I just take a multivitamin, probiotic, Mild antidepressant (said to help with IBS) and try to paint on a smile!!!!
Try going paleo (robbwolf.com or marksdailyapple.com or thepaleomom.com) and just see how you feel. I promise you that you will feel so much better. You don't need a blood test result to know what is or isn't working for you and your body! And if you need any more convincing, try reading "Wheat Belly", "Grain Brain", "Primal Body, Primal Mind" or jump onto youtube.com and watch "Diet, Health and the Wisdom of Crowds". Sometimes feeling great is enough!
Sorry to hear you are still suffering flirtygerty, are 100% gluten free now? I've had the medical procedure you've had. All clear! No coeliacs etc. I feel better gf tho. It is difficult to be 100% as there are so many ingredients with hidden gluten. Eg. Oxo cubes, liquorice, some chocolate. It's a nightmare sometimes trying to find food stuff! Hope you feel better soon :-). Thank you for your reply.
Hi Flirtygert, I was in a similar position 2 years ago with accepting this no energy scenario was now my lot in life. I had also been there before some 12 years earlier and struggled for the next 4 years until they diagnosed me with Coeliac disease and within a week a different person. Then over the next 6 years even on the GF diet the malaise slowly reasserted itself. Until 2 years ago I had one afternoon of energy and remembered then what it was to be alive again. So started the search process again, if I can have energy for one afternoon why not all the time? The medical profession were unable to shed any light after dozens of blood tests. I ended up seeing a nutritional gp who suggested the Paleo diet, which has certainly helped, a naturopath who diagnosed leaky gut and gave me a cleansing diet for 6 weeks and a kinesiologist who identified other things that my body couldnt process and as such had built up as toxins in my body. That toxicity was preventing the body generally and the main processing organs like the liver, kidneys and bowel from functioning correctly. It has been 2 years with pooling the info from these three sources and applying them that energy has now returned on a daily basis. We are all different and it might take some time to sort out what works for you, but I am sure that there will be a way thru it for you.
I could not agree more with Karen77 recommendation - start with a gluten free paleo diet. Start the day with 2 x 250ml glasses of filtered water and if you can 15 minutes of some form of exercise before breakfast. Then some fresh vegetable juice and a paleo breakfast. Mine is a poached free range egg, spinach and green beans. Try and keep starchy food to a minimum - pumpkin instead of potatoes, etc. Also, you will need a good pro and prebiotic - which should be available from a reputable health food store.
Lunch for me is mostly a chicken salad and dinner is homemade vegetable soup.
You should notice to difference within the first month - if you can stick with it - that's the hard part.
Good luck and lets hope your out of the woods real soon!!
My nutritional therapist tells me that there is now such a recognised condition as 'non-coeliac gluten intolerance'. I have this. My coeliac test was negative too, but I undoubtably have an intolerance as the slightest contamination (even a single crumb) can make me feel really unwell (nausea, stomach pain, wind, bloating, and a flare up of Lupus -joint/nerve/muscle pain and flu-like aches).
People should be made more aware that 'non-coeliac gluten intolerance' can be responsible for causing all sorts of problems, including auto-immune diseases like Lupus due to 'leaky gut syndrome' where the gut becomes damaged and more permeable, letting through food and bacteria that shouldn't get through, causing an auto-immune reaction. I gave up gluten completely 100% around 20 months ago and I'm now experiencing a real improvement to my health, and the lupus is now mostly in remission and I take no medication for it
Yes, in fact it is believed that leaky gut syndrome can be the CAUSE of gluten intolerance. The gut can be damaged by all sorts of things including prescription drugs such as NSAIDs (such as Ibruprofen).
I didn't have a biopsy or anything like that. The nutritional therapist asked me lots of questions during the initial consultation including "have you taken antibiotics recently?" were you ever on the pill? "do you use NSAIDs?' etc and then analysed my symptoms (auto-immune) and told me that she believed I had leaky gut syndrome and needed to repair the gut wall and establish a balance of bacteria in the gut. All the things she recommended have helped. Mainly lifestyle and diet changes along with supplements. Gluten intolerance creates inflammation in the body (i.e. auto-immune response) and so is responsible for many chronic health problems. This is not recognised by mainstream doctors yet and still fringe research, but I now believe they are right due to my recovery.
Thanks Dryad. I haven't had a biopsy either. As I have been under the impression if you have NCGS this does not apply to you. But my GP thinks I do have coeliac - neither of us think a biopsy is necessary as not eating gluten and wheat is doing the trick and I can't eat the GF bread stuff. I will have to investigate leaky gut symptoms as I do have joint pain and have had injections for bursitis/tendonitis in the past.
Hi urbangirl. I avoid that horrible gf bread too! It's yuk! I think the joint pain could well be related to your gut issues. Here's a link you might find interesting: healthy-diet-healthy-you.co...
Dryad thank you very much for that very interesting link. I don't eat Free From stuff because I react to hydroxypropylmethylcellulose which is in most of these products. I also have a load of other problems so the only food I eat is made from scratch. Unfortunately I cannot eat many of the recommended foods on the website, however, I feel confident that what I eat which is low carb, fresh produce is pretty good. The jury is out on my muscle/joint pain as it is related to tendonitis and bursitis that goes round my body ie from my hips to my shoulders to my elbow. It may be thyroid related but recent testing seems to rule that out. I am going to re-read the link as I think there were some interesting aspects on nutrition that I had not considered. Isn't all this so complicated? Sometimes I think I lose the plot!
Urbangirl, I would recommend you get your TSH, T4 T3, iron folate ferritin, Vitamin D3 vitamin B12 tested again. Get a print out of the results and post them on the thyroid uk on health unlocked. Just because the doctor says everything is normal. They may in fact be on the low side of normal and you may benefit from thyroid medication. Joint pain is one of the many symptoms of thyroid disease. Oh yeah. Get thyroid anti body's tested to see if you have hashimotos (auto immune disease!)
W3ndy2159 you are so right about getting tested for TSH etc. I will do this because these joint problems continue and I will have to do this privately and this needs to be arranged. I have been on thyroid uk and they have been very helpful. There is such a lot to digest - literally. My GP assured me I have nothing wrong with my thyroid. Some of my friends are doctors and they tell me things are okay too. It is difficult to know what to believe. I go round in circles. Thank you so much for being helpful. I really appreciate it.
Urban girl So glad you found them. Urban girl. If you have positive antibodies, it is recommended you go gluten free ad gluten causes inflammation which can affect the joints. Also if it is autoimmune you are more likely to other other autoimmune diseases. Ie. coeliac, crohns, rheumatoid arthritis to name a few. There are a few face book thyroid sites. Eg. Thyroid friends uk is a particularly nice friendly group. It is a closed group so very private from your public page. Well worth joining if you are interested. Good luck. Wendy x
Thank you Wendy - I have been gluten free and wheat free for at least a year. I only eat stuff from scratch that I make, although there have been occasions when I have been out and I have been glutened. I had fibromyalgia which disappeared after I stopped eating gluten and wheat. But I still have tennis elbow and lower back pain and hip pain, wrist pain and dodgy knees and I get spasms in the night in these joints.... I know it needs to get sorted but it is very difficult if you GP is not interested.
Hi Urbangirl, A good naturopath should be able to tell you whether you have leaky gut with a urine test in about 15 minutes. If you do have it, they will prescribe a similiar diet that you are on ( as I am) with some liver and kidney cleansing supplements for about 4 to 6 weeks. Drink plenty of filtered water at least 6 to 8 250ml glasses a day. Freshly squeezed vegetable juice in the morning with breakfast wont hurt either.
That's great news about your lupus improving with you gf lifestyle. My symptoms are like yours. I already have an autoimmune disease (Hashimoto's thyroiditis) so it's not surprising really, gluten/wheat affects me hope you continue to improve. Good luck. Thank you for replying
does anyone know why my symptoms are always much worse in the morning - especially if I have to get up early and usually not so bad if I get a lie-in at the weekends..... back to bed again this morning due to nausea and wakening during night due to pain lower left (bowel)??
does this sound like some sort of food intolerance???
Hi flirtygert, before diagnosis I was the same and always awoke because of my bowels and interestingly I worked with someone whose husband had IBS and he was always ill late at night and then would not be able to go to sleep as his bowels were over active.
I'm a morning person and like to get things done plus we have the rest of the day in front of us so stress is bound to play a part in this. And our bowels form habits so their cycles are like a, merry go round, that's what I think.
As for your bowel pain I think that you need to get your Dr to refer you to a gut specialist as they have seen it all before.
my gp is prob sick looking at me.... the last time I went he sympathised but said there were no further tests he could do and it was probably one of those conditions which because it has no physical symptoms which show up in blood tests etc, it is just labelled as a functional problem which I have to live with. Its now just trying to find something to ease the nausea, tablets for the headaches and early nites to try to help the fatigue. If I thot it was something I ate It defo would be off the menu!!!!
thanks Jerry. Over the 4 years I have suffered this I have seen 3 different gastroenterologists who have all agreed that it is the same - a functional bowel problem as all tests came back clear (happily in one way but frustrating in another. I probably stress too much as I think about things and then my symptoms get worse.... does your friend have bouts of IBS or is it nearly constant like mine (which is why I think it is something I eat daily).
Hi there, they get bouts of IBS but their gut is very sensitive. When I was diagnosed there were 4 of us and after we had biopsies one chap was admitted straight away for blood as he had an ulcer that was bleeding, I was asked to stay and see the consultant as they had proved I had CD and the other 2 were sent home as the biopsy was clear but they both had bowel issues and I felt for them. Even tho' I was taken aback at being diagnosed with CD.
So you are not alone and stress indeed can cause an upset stomach, so what I would consider is going on a bland diet with foods that you know are safe and then gradually introduce new foods and monitor your reaction by keeping a food diary. It is very important that you still have a balanced diet so I would first discuss this with a nutritionist or dietician to make sure your body is getting all the nutrients that it needs, it might seem a pain but what have you got to lose and look at wheat you have to gain.
You should still be able to be given a biopsy even though the blood test was negative. My blood test was negative and I requested a biopsy to know for sure
Jessiepup I had a biopsy about 3 years ago when I had my endoscopy and it came back negative too... just not really keen on getting it checked again... nausea and severe headache this morning - maybe partly due to stress?? always seem to be rushing somewhere with kids, chasing them to get out of the house if going somewhere etc. cant just take that in my stride the way I used to lol
Pie and more pie? No short measures then. This must be the definition of binge eating! I have a non CD friend who has IBS and this would be the effect on him.
hi. i got told 3 months ago i was coeliac. all i had was blood test. no camera. seemed easy compared to the trouble some people are having. plus if it helps anyone else i had no gut problems or toilet trouble. i had shortness of breath and exhaustine which lead to deppresion and anxiaty.
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Wheat, Gluten and pain.
I have refractory coeliac disease
Did anyone else have to eat wheat for a period of time before they could be tested for being a coeliac?
Could this be a reaction to gluten?
