Could I be celiac despite my tests all being negative?

[flirtygert]

I have been suffering from digestive issues for the past 4 years now. Having undergone blood tests, barium enema, sigmoidoscopy and endoscopy which all came back clear I have been diagnosed with a functional bowel disorder. My symptoms are mainly nausea, morning diahorrea, extreme fatigue and light-headedness. usually every day!!!! My dr assures me that i am not celiac as both my blood tests and biopsy came back clear but could my symptoms improve with a gluten free diet or is it not worth such a big lifestyle change if I dont have to do it.... as a mum of 3 I find now I have no enthusiasm to play with my kids or take them away for the day as I feel so ill. I feel my problems are hormone related as I might have 1 good week out of every 4??? I am 42 and most days feel like 82!!! any advice would be helpful. Thanks

[myrab]

flirtygert,

Hi I have not had biopsy but Antibody test which was negative after asking advice from fellow members it turns out the test wasn't done right, But I changed fully to GF diet and have found a massive difference in my overall health and believe I have plenty of issues there, so even without diagnosis I would go the whole hog on GF, but maybe he could refer you to a dietician to get further advice.

Shops and restaurants are getting so much better at providing food stuff now it's not as hard as you may fear, I fed my visiting family GF for two weeks so I could eat as they did and apart from the bread they didn't know the difference. Coeliac UK has a wonderful amount of help advice use I do x Myrab

[Hidden in reply to myrab]

I haven't been diagnosed as such, doctor did a blood test as had all the symptoms but they came back negative. I do believe that it takes awhile to show in blood tests. My neighbour has been trying to get diagnosed for years and they kept telling her she had irritable bowel. I eat a gluten free diet despite test results and have been so much better. So if you feel better carry on with it. x

[NorthLeedsJohnny in reply to Hidden]

My blood tests were also negative but an endoscopy was positive. A positive diagnosis allows you items on prescription too and besting in mind the inflated prices of GF food, scripts are worth having. You could go GF to see if it makes any difference but if you do and you heal, any subsequent endoscopy could end up negative again, masking what could actually be a real problem

[Gillie]

Hi lovely, I really feel for you. I'll give you a little of my history I've had sigmoidoscopy's, barium enemas, barium meals, endoscopies, blood tests galore. I suffered for 10 years plus, not knowing what was wrong with me. I was diagnosed with diverticulitis, hiatus hernea, gall stones and irritable bowel! Had my gall bladder removed. Suffered with fatigue, malaise, brain fog, mouth ulcers, terrible toilet issues, multiple joint pain and swelling in my hands and wrists, swelling abdomen........ha ha the list is endless. Tested negative on bloods and biopsy. Went gluten free, and its not a big life change, only difference in my house is the bread and cereal, otherwise they eat what I'm eating. And I have never looked back, no IBS, no diverticulitis, no hiatus hernea pain any more......yayy, no joint pains, no brain fog....I could go on and on. I am a totally different person to what I was 5 years ago. My GP said I knew more about it than he did! If you really feel you want a diagnosis keep a food and symptom diary, list your ailments, do your research on a consultant that specialises in Coeliac disease and demand (politely) of course to be referred. Don't be fobbed off GP's know a little about lots of things but not a lot on one specific ailment thats why you get referred to see a Consultant. Hope this helps, because I know all to well how it feels when you think nobodys taking any notice. Print this off even and take it with you.

If you want any further help let me know.

Good luck

Gill

[flirtygert in reply to Gillie]

thanks Gill - thats great that it worked for you. Was just wondering if I am constantly eating items containing gluten why somedays do I feel better than others? Surely every time I eat gluten I should have some sort of symptoms. I have seen 3 consultants at various stages during my treatment and all are in agreement that I have a functional bowel disorder - coeliac wasnt even mentioned!!! likewise my toilet issues (morning diah only) - is this common for coeliacs??

[Gillie in reply to flirtygert]

Hi Flirtygert, I found by keeping a diary I could trace back what I had eaten. I am not super sensitive so I found that it could take 2 or 3 days before I became ill. Also say 1 day I ate a piece of toast and the next I ate pasta then I would become unwell on day 4 or 5. (If I continued to eat gluten every day I would have severe toilet issues). It would affect either my bowel habits or my joints or both. There are no hard and fast rules regarding CD or GS our bodies all react differently. As mentioned before if a Consultant knows very little about CD, they do not consider it. I think it is up to you to push to cover all avenues. Hope this is of help to you lovely. Regards Gill

[ostouhc in reply to Gillie]

Hello Gillie.

I realize this message comes 2 years late, but your case reminds me of mine... or maybe is remarkably exactly the same, as far as symptoms are concerned.

Of course, I had the "pleasure" of finding out a lot more, after I visited a doctor specializing in celiac disease. He still can't believe how the tests came back negative with my clinical case (as, aside from the symptoms and the other autoimmune issues, he noticed low filic acid, ferritin, b12, cholesterol etc).

I have just now done the gene test (HLA DQ2 - DQ8) and am waiting for the results.

I also showed great progress, when going gluten-free. Actually, it's only been a few days that I managed to completely remove gluten from my diet, most of which was like I was completely free from any symptom; unlucky me, I soon came down with the flu and ever since my symptoms go up and down. It's only been about 10 days, 5 of which were magical; for someone suffering daily for 10-11 years, that's spectacular.

In any case, I was mostly wondering how long it took for your symptoms to disappear (toilet issues and joint pain mostly), whether you had run the gene test yourself, and -of course- how you have been holding up!

Thank you so much, both for the courage your post gave me and in advance for a reply after so long. Fingers crossed you eventually read my message.

[Gillie in reply to ostouhc]

Hi, gosh 2 years have gone by! When I eliminated gluten from my diet, if I can remember correctly I began feeling a lot better within 4 weeks, don't forget when we become ill, it affects our autoimmune whether we know about it or not because everything works overdrive to return to normal.

The consultant at the hospital tested for the HLA

I am really well thank you, going gluten free was a breath of fresh air.

Take time with yourself, don't forget your body has certainly been fighting something wether it be CD or gluten sensitivity for many years, give it time to adjust and recuperate. Even if your tests come back negative, if you feel better not eating gluten then don't eat it. None of us need it you know.

I wish you all the best and hope that a gluten free life improves your health dramatically. I for one have never looked back.

Regards

Gill

[Gfmom]

I tested negative and then gave up gluten. Like many others here my symptoms disappeared after going gluten free. I also avoid lactose which seems to upset me. I think it's definitely worth a try, if it works for you you may be suffering from non coeliac gluten sensitivity which is what my gp suggested I might have.

Good luck!

[flirtygert in reply to Gfmom]

thanks for the advice. really considering giving it a go!!!

[SilverDreamMachine]

Hi Flirtygert,

Agree with all the suggestions that you go gluten free and see what happens. Also suggest you don`t rely too much on the medics. Diagnosing gastro problems re coeliac or not is, in my opinion, in its early stages and the best course of action is for suffers is to be their own advocate and get to know as much as you can and then decide on what YOU think may be the best way forward. Finally use this (and other sites) to feel a part of a community. This will give you knowledge, but perhaps more importantly in your case, proof you`re not alone.

[flirtygert in reply to SilverDreamMachine]

thanks for the advice - I keep thinking 3 gastro-entrologists must know what they are talking about!!! coeliac wasnt even mentioned as they must have noticed my biopsy etc came back negative....

[RusticRita]

HI FlirtyGert,

Even if your tests were negative you could have Non Coeliac Gluten Sensitivity, which is also caused by gluten/wheat. General info on that here: (celiaccentral.org/non-celia... ).

The symptoms of NCGS are similar, but subtly different to Coeliac Disease and can also be related to auto-immune illness. Have they tested you for Thyroid Disease? NCGS often occurs alongside it. As a metabolic/hormonal disease it causes massive fatigue and should definitely be a consideration if you have other symptoms like weight gain, thinning of hair, dry skin and achy joints. I had very similar symptoms to you when I was finally diagnosed with Hypothyroidism alongside the afore-mentioned, but the Thyroxine medication never worked fully until I became gluten-free last year.

Like others here have suggested you could try keeping a food diary and/or a gluten-free diet for a few weeks. To do this properly I'd advise researching it thoroughly first with reputable coeliac sources. It's important to be really strict about cross-contamination, ensuring no food you eat contains any wheat-containing ingredients (ie checking any processed foods are certified gluten-free) or any that could have been contaminated in production.

This means staying away from oats/GF wheat-substitutes made from corn initially too. It's advisable to keep your diet very gentle and simple while going GF free initially as your stomach can become very sensitive on withdrawing gluten!

If you are gluten-intolerant the diet changes are really worth it for regaining your health and it doesn't take long before you get used to replacing wheat. Plenty of help and support around here, let us know how you get on. Best wishes, Rita

[flirtygert in reply to RusticRita]

Thanks Rita - think I have been tested for just about everything now lol. GP has repeated blood tests on numerous occasions checking everything from hormone levels to liver function, thyroid etc and is equally baffled as everything keeps coming back clear. I notice after my morning rush to the loo as soon as I eat something my bowel grumbles and gurgles - normal??? coeliac symptoms??? plus the nausea can be a real killer!!!

[RusticRita in reply to flirtygert]

HI FlirtyGert,

It's good you got so many things tested, at least that's eliminated a lot of possibilities! NCGS and Coeliac Disease can cause a myriad of symptoms, but yes, bad bowel problems seem to be the most common symptom of both for most people. My problems got worse over time and I had constant episodes of both IBS and nausea amongst others for 3-6 months before diagnosis - however I wasn't initially sure whether this was down to hormone changes, as I'm peri-menopausal.

My symptoms got so bad, including skin rashes and systemic inflammation, that I was sent to an immunologist. Interestingly I tested positive for wheat allergy in blood tests, but negative in skin tests. A true allergy shows an almost immediate reaction, but my skin reacted slowly. As I understand it this is more common for a true intolerance. That's how I found out it was wheat/gluten despite the coeliac blood test being negative. Not everyone experiences rashes though.

I haven't suffered nausea since being GF kicked in (it took a little while for my bowels to adjust to a new diet, but have very few problems now).

I'd recommend you do a GF/Wheat free trial for a few weeks. I know it can seem a daunting prospect, but at least it would indicate whether gluten is causing your problems. Then you can eliminate that as a cause, or eliminate the gluten and feel better again Let us know if you need any pointers.

Best wishes, Rita

[lessan]

Hi Rita, I finally got my diagnosis through endoscopy & biopsies, however I was still suffering for ages & had to undergo more tests including MRI etc, my consultant wanted me to repeat the endoscopy but in the meantime I started to realise that even though I was totally gluten free & still having symptoms similar to yours (except the sickness) it dawned on me that as it was spring/summer I was eating more salads etc (trying to eat healthily) but when I stopped my symptoms also went away. Don't know if it will work for u but u must explore every road. Check out Nightshades & Coeliac. Tomatoes, peppers, potatoes etc etc. apparently if your intestines are sensitive it is like adding fuel to the fire. I have not felt this good for years. Good luck to you. X

[RusticRita in reply to lessan]

Hi Lessan, Thanks for that advice. Thankfully I don't actually experience many symptoms at all now unless I eat something contaminated, but have heard about a lot of people having problems with plants of the nightshade family. It's a good reminder to watch out for reactions though, particularly in summer as I have severe grass allergy and that seems to make me more sensitive generally. Got a nice rash today because I stupidly pulled out some grass weeds with bare arms! Cheers and best wishes, Rita

[DrTomOB]

It is now accepted that the toxic peptides of gluten found in wheat, rye and barley may detrimentally affect any tissue in the body and are not restricted to the intestines. As a matter-of-fact, one of the ‘mantras’ of the Gluten Sensitivity network comes from an 8-yr old article: “That gluten sensitivity is regarded as principally a disease of the small bowel is a historical misconception.1” There is a key word in this statement which I suspect was an emphasis of the Author’s message and sets the tone for this article (and this Network Movement). That key word is ‘principally’. Is Gluten Sensitivity ‘principally’ a disease of the small intestine? Point-blank answer - No it is not. For every Gluten Sensitive patient with the symptoms of an enteropathy (Classic Celiac Disease), there are 8 with no GI symptoms2 3.

And what is the importance of recognizing this? Unfortunately, too many doctors will tell their patients that if the intestinal symptoms are not severe, or if there is no advanced intestinal damage (total villous atrophy), then the patient does not need to be vigilant in avoiding gluten exposure at all costs4. Many patients are advised to follow the World Health Organization Guidelines (of 20ppm), or Food and Agricultural Organization Codex Alimentarius gluten-free diet, which allow up to 0.3% of gluten per 100 g of protein in foods, whereas others follow a strict GFD with no detectable gluten. However, trace amounts of gluten may be responsible for persistent symptoms in some patients with Celiac Disease. Up to 75% of patients with persistent symptoms despite a World Health Organization or Food and Agricultural Organization Codex Alimentarius gluten-free diet will improve when put on a ‘‘no detectable gluten’’ diet5.

We know that for Gluten-Sensitive patients, eating gluten will cause an inflammation response in the intestines, and often in other parts of the body6 7 8 9. And what is the importance of ‘quieting down’ the inflammatory cascade from gluten exposure? Mortality in Celiac patients is highest (6-fold higher) in those not adherent to a gluten-free diet. Non-adherence to a gluten-free diet was defined as eating gluten once-per-month10. Vigilance is paramount. You can’t be a little pregnant. There is no convincing evidence that you can have a little gluten if you have Gluten Sensitivity.

The ‘Conundrum of Gluten Sensitivity’ is when patients know that they have a problem with wheat, their doctors run the standard blood profile, and one of two things happens:

IgA anti-transglutaminase or anti-endomysial antibodies come back negative11, or IgA anti-transglutaminase or anti-endomysial antibodies come back negative and anti-gliadin, or anti-deamidated gliadin antibodies come back positive and the doctor tells the patient “it’s OK to eat wheat because the tissue antibodies are negative”. The patient is left in a state of confusion. They don’t WANT to give up wheat. After all, they believe it’s a staple of life.

And their doctor says it’s OK to eat it. Yet they know they don’t feel as well when they eat it. So many will rationalize, “Oh well, it must be the stress of my life making me feel bad”, and they order their bagel. That’s the conundrum. Where’s the problem? The problem is the test.

Gluten Sensitivity is a systemic autoimmune disease with diverse manifestations12. Celiac Disease, or gluten-sensitive enteropathy, is only one aspect of a range of possible manifestations of gluten sensitivity. And yet, this enteropathy, ‘one of the most common lifelong disorders in both the U.S. and Europe13, receives the lion-share of focus to the point of ignoring other manifestations. Auto-immune disease, the 3rd leading cause of Morbidity and Mortality in the industrialized world14, is ten times more common in a gluten sensitive enteropathy than in the general population15. The correlation is undeniable. The exact mechanisms of how this correlation manifests is being heavily investigated. But we can say with a good deal of research behind us, that the toxic peptides of gluten may act as a trigger in the development of the auto-immune mechanism (the immune system attacking our own tissues). But traditionally, doctors do not recognize this connection and wait for the accumulated damage from the immune system attacking our tissue (our thyroid, or our brains, or our skin, or…), they wait until the damage is extensive enough that there are obvious symptoms, and then we receive a diagnosis of an auto-immune disease (Celiac Disease, Hashimoto’s Thyroiditis, Type 1 Diabetes, Systemic Lupus, Inflammatory Bowel Disease, Inflammatory Skin Diseases, ….)16. Thus, the burden on society from Gluten Sensitivity cannot be overestimated. Earlier identification might result in earlier treatment, better quality of life and an improved prognosis for these patients17.

The diagnosis of Gluten Sensitivity has been proposed to include not only if the affect is in the intestines (Celiac Disease), but also gluten-reactive patients without intestinal lesions. From the skin (Dermatitis Herpetiformis, Psoriatic arthritis, Alopecia areata, Dermatomyositis, Cutaneous vasculitis,), to the muscles (inflammatory myopathies), to the brain (Gluten Ataxia, altered neurotransmitter production, Schizophrenia, anxiety, depression, ADHD,…), to the nerves (peripheral neuralgias, carpal tunnel syndrome, idiopathic neuropathies,…), and beyond. Pathology to gluten exposure can occur in multiple systems without evidence of intestinal damage18-27.

Now, what about this Conundrum? The tests are negative, yet the person feels better when they do not eat gluten. Many studies have validated the Sensitivity and Specificity using anti-endomysial and/or anti-transglutaminase antibody testing to identify Celiac Disease28 29. This means that the science says these tests are very, very accurate. Then how is it that there is a Conundrum? Here’s the problem - The definition of Celiac Disease requires total villous atrophy30. Not partial villous atrophy; not increased inflammation without any visible atrophy yet, the definition of Celiac Disease requires total villous atrophy. Thus, when researchers look at populations who have Celiac Disease confirmed by biopsy, and look to see how accurate the blood tests are, they come up with percentages above 95%, because they’re only including people who have total villous atrophy in their Study Group - because that’s the definition of Celiac Disease. If we were to expand the definition of Celiac Disease to include those with partial villous atrophy, or include those whom as of yet just show the mechanism that wears down the villi (increased intraepithelial lymphocytes), then the Sensitivity and Specificity of anti-endomysial or anti-transglutaminase goes down, in some studies dramatically down, to as low as 27-32%31 32 33 34.

So do we want to base our health guidance and decisions on blood tests that are limited to identifying Celiac Disease at its end stage of intestinal deterioration (Total Villous Atrophy)35 36? Or would we want to include testing that has a much bigger picture in mind and looks to identify Gluten Sensitivity inside and outside the intestines at earlier stages?

If we recognize the now well-known fact that Gluten Sensitivity may manifest as Celiac Disease, or it may manifest outside of the intestines37, one of the ways of expanding our diagnostic range is to focus on whether or not our immune system is saying that gluten is a problem. We may know where the problem is manifesting, or we may not. But if our immune system is saying “We’ve got a problem here”, it likely is worth listening to.

As a comparison, if your car is running fine on the highway at 60 miles per hour, do you listen when the immune system of the car (the dashboard gauges) says “we’ve got a problem here”, and the hot light has lit up, or do we say “the car is running fine - I don’t see or feel any problem”, and keep driving? I think most would agree that is not a very wise move. The same is true for your body. You may ‘feel’ a problem, you may not. We’ll talk more about that in a future article. For now, the point I want to make is that we will benefit from ‘listening’ to what our immune system is saying to us. We just have to be able to hear what it’s trying to say.

Now the problem is accurate communication. The current blood test that every laboratory offers in looking for an immune reaction to the gluten peptide of wheat is elevated antibodies to gliadin or deamidated gliadin. Every laboratory. And there are many studies that have shown looking for elevated antibodies to gliadin is not as accurate in identifying Celiac Disease as looking for elevated antibodies to Transglutaminase or Endomysial antibodies. Why? Because sometimes the antibodies to Gliadin are positive and the biopsy shows that there is no Celiac Disease. And sometimes the Gliadin antibodies are negative and the biopsy shows there is Celiac Disease. Thus, the consensus in the scientific community is that looking for antibodies to wheat (gliadin) is not sensitive enough when looking for Celiac Disease. You can’t rely on it. Now that doesn’t make much sense, does it? If gluten is the problem, why can’t we measure the immune reaction to it when other gauges on the dashboard are hot? Two reasons:

1) Researchers tell us it is “inappropriate” to compare gliadin antibodies against Transglutaminase or Endomysial antibodies because Gluten Sensitivity can exist without villous atrophy. Thus, the gliadin antibodies may be elevated (and often are) without recognizable Celiac Disease. It’s showing us a bigger problem than just Celiac Disease. They’re not ‘false positives’, it’s the immune system saying “we’ve got a problem here” that is not currently manifesting in the intestines - it likely is manifesting somewhere else, such as in the brain or the nervous system38.

2) Identifying antibodies just to the peptide of gluten called Gliadin is not thorough enough in looking for an immune reaction to gluten39.

Amino acids are the building blocks of protein. When we eat protein, any protein, it’s the job of the digestive system to break down that protein into 1, 2, or at most 3 amino acid peptides that are easily absorbed into the blood stream through the ‘cheesecloth’ of the intestines. When someone has Gluten Sensitivity, the gluten molecules in wheat, barley and rye are not digested into small enough molecules to easily fit through the cheesecloth, be absorbed into the blood stream, and they remain in larger peptides, sometimes very large peptides. These large peptides called Macromolecules trigger the immune system to say “these are not good for me40 41”. An exposure to a large peptide on a rare occasion would not likely have initially been a problem. But with pancakes for breakfast, a sandwich for lunch, pasta for dinner, toast for breakfast, a sandwich for lunch, croutons on the salad at dinner, day in and day out, eventually you’ve got a hot light on the dashboard that is reaching the critical stage42.

Then BOOM! your engine overheats and you begin to notice symptoms - perhaps in the intestines, perhaps in the joints, perhaps in the skin, perhaps in the skull (depression, anxiety, headaches), perhaps fatigue,…..

So let’s get back to the large peptides left in the intestines due to an inability to digest the gluten molecule. We know there are many peptides of gluten produced by poor digestion43. One study identified over 60 putative peptides of gluten44. Yet the current blood tests only test for one-gliadin. Studies have said that gliadin is the primary toxic peptide. But, only about 50% of celiac patients have antibodies to the gliadin peptide of gluten39. And the rest of the Celiacs don’t. They have antibodies to other peptides of gluten45. This is the reason for the Conundrum - You test for it, the test only looks for antibodies to gliadin, the test comes back negative, and yet you ‘know’ you feel better off of gluten. It’s the test! In that example, the person does not react to the gliadin peptide - they are likely to be reacting to a different peptide of gluten.

“Why don’t laboratories test for other peptides of gluten”?

Good question. I do not know the answer to that. Some of the studies on this go back to the mid 90’s. It is probably a supply and demand issue for commercial laboratories.

Well, no longer.

There is a new blood test, looking at 10 different peptides of gluten-not just Gliadin. You can go to cyrexlabs.com to read more about this test. Looking at antibodies to 10 different peptides of gluten (including gliadin) will certainly increase the detection rate of the immune system saying “we’ve got a problem here with gluten”. We know Celiac Disease is due to sensitivity to the peptides of gluten found in wheat, barley and rye. Many of the peptides of gluten - not just to Gliadin. And now, another diagnostic tool has been added to your doctor’s repertoire assisting in accurately identifying Gluten Sensitivity with or without the serious end-stage of tissue destruction -Total Villous Atrophy.

And my personal prayer is that as a result of this expanded test looking for a reaction to gluten, we no longer miss those with earlier stages of Celiac Disease and Gluten Sensitivity. Thus, being able to calm down the ‘fire in the belly’, the hot light on the dashboard, before the engine blows up. Before the diagnosis of Attention Deficit Hyperactivity Disorder, before the diagnosis of Autoimmune Thyroid Disease, before the diagnosis of Type 1 Diabetes, before the diagnosis of migraines, before the loss of a pregnancy,…. And doctors will have the tools to truly guide their patients in increasing one’s health - Tuning the engine before it blows up with a diagnosable disease. So our bodies can carry us through life purring instead of rumbling along.

Dr. Tom O'Bryan

[JodiQ in reply to DrTomOB]

Thanks so much for your in-put, I've been in pain for off and on for a year w/diverticulosis/er twice with diverticulitis, had ibs in my late teens, diagnosis at 22, so off and on my whole life, had allergy testing with needle pricks on the skin, dust mites a #4 and Rye grass#4 that's it, my question to you and hopefully you will know is being allergic this way mean you cant eat rye products? ive had 6 colonoscopies in my life, I'm 57 and no dr has ever mention allergies to me, that would effect my gut, always ibs, now diverticula, and high fiber diets make me worst, I was juicing and taking flax seed after grinding in grinder, for 1 week, I really believe this caused my last er, and I have had almost constant pain in the right side 4 inches over from belly for 20 years, comes and goes, sometimes gone for days, during the prep for colon cleansing I could eat hard candi, after about 1 hour that right sided pain came with a vengeance, so how do I approach my military Dr. with all this? I found your article enlightening, hope I can figure this all out and soon! Again Thanks

[ifeelgood]

hi i have suffered for 20yrs with this had every test you can think of. had doctors tell me i had depression to ibs had all the questions how much alcohol do you drink how much do you smoke i don't do any had 8 celiac tests in total all came back clear last Wednesday i was that ill i had to leave a job half done.. took a friends advice gluten free bread crisps cereal at work lactose free milk sweeter instead of sugar no coffee only one week and my stool is hard my heartburn has gone my back ache gone i feel amazing i take a multi vitamintablet to. drink flavouedr water. trust every one here go for it it will work

[s-unrise]

Hi, just found this post! Just got my blood test results and they are normal, feel like crying! I have been gluten free for 3 days, after blood test. Indigestion feels better and also get loose bowels in morning about 3 times! This has improved the last couple of days. Had to try gf as I also feel to ill to do much. Did you stick to gf diet, did it work??? Nausea and fatigue is the worst part for me so hoping gf diet could help??

[s-unrise]

Flirtygert my symtoms are pretty similar to yours, especially the nausea and morning bowel problems! Have you gone gluten free?? I tested negative and have been gluten free for 3 weeks but still not feeling markedly better yet, how long will it take I wonder. The nausea actually seems a little better which is a relief. Hope you got some answers.

[flirtygert]

thanks for your reply s-unrise. I havent gone gluten free yet but my gp has recommended the fodmap diet which again I havent tried as he put me on Imipramine last thing at night to see if it improves. still have the toilet rush in the morning!!! but nausea not as bad. a lot of it I feel is brought on by worry - my husband has had a bad back for over 6 months now and although MRI clear symptoms persist so think the worry about that hasnt helped. Someone said can sometimes take 6 weeks before any noticable changes. hope it helps!!