Sibo would it affect CD test results ... - Gluten Free Guerr...

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Sibo would it affect CD test results or is it symptoms only ?

tmoxon
tmoxon

Sibo - if you have this and have the same symptoms that you had before diagnosis of CD does anyone know whether the coeliac test they give would be higher than normal please. I have issues with my stomach and I am wondering whether I might have this SIBO. Although my antibodies are lower than before I went on the GF diet, they aren't as good as they should be considering I am so careful and we don't have gluten in the house

16 Replies

How long ago did you adopt a gluten free diet? My partner took about 9 months for his antibodies to normalise (blood test was >128), it can take up to a year. I wouldn't be too disheartened if you've only been diagnosed recently.

tmoxon
tmoxon in reply to Cooper27

HI Cooper27 thanks for replying. I have been gluten free for 9 years this March. My test result when first diagnosed was 39, although the specialist said the endoscope showed moderate to high damage. Just looked at my medical records and the last one I had at the end of last year was 10 which is classed as normal, the range is 0 - 14. No gluten in the house and I am not eating out anywhere . I asked in case other people who had symptoms were also finding the test result higher than they expected. thanks again

Hi Tmoxon. I've had a recent positive test for SIBO and about to start antibiotics. I've never had a positive coeliac test and I've no idea how results are interpreted as I gave up trying to get a GP to take the testing seriously, but have been gf for about 10 years. I have, over the past couple of years, found more and more foods reacting in the way that gluten foods would, and a lot of the old symptoms returning. I've put this down to two things 1) my over-reliance on so-called gluten free foods that are not as gluten free as they should be/my increasing sensitivity to the allowed ppm level; 2) new reaction mimicking the coeliac reaction (and this is probably where SIBO comes in). I've no idea if SIBO effects the outcome of a coeliac test so afraid I can't help there, but if you suspect SIBO the test is a hydrogen breath test that can be done through NHS (but not during pandemic) or privately by postal test (I went with the Functional Gut Clinic).

tmoxon
tmoxon in reply to Mise

Hi Mise yes it was your post and Cooper27's that made me aware of SIBO. Thanks for posting. When things settle down in the NHS I might ask one of the GP's in our practice about the breath test. I have been saying that despite going on the GF diet I still don't feel that great.

I never had the classic symptoms of CD, but after many years I was sent to an immunologist and a dermatologist. The immunologist had worked in Ireland and was very aware of CD and tested every patient of his so it was found that way.

I have been listening to podcasts lately about how important the gut microbiome is, Prof Tim Spector is bringing a programme called Zoe to the UK, its available in America at the moment. I wonder whether this would be able to diagnose SIBO.

Keep us posted on how you get one, hope your antibiotics do the trick

Mise
Mise in reply to tmoxon

Hi tmoxon. That's interesting that it was a doctor who had worked in Ireland. First doctor to ever suggest coeliac to me as explanation for gut pain (I live in UK) was an Irish doctor. Very frustrating to get so few answers and still feel ill. Just seems crazy it's such an uphill struggle. You might want to also check about histamine intolerance and diets that are good for that. A lot of these symptoms map across each other and suggestive of many different things. Do follow up on posts on here about how safe/not safe gf foods are and the hidden gluten in ingredients/addiditives/issues with the 20ppm codex level. I've learnt a lot from that also. Good website I've found is amymyersmd.com - helpful on SIBO and candida information, and low inflammation foods. Also worth looking at lectins (mimic coeliac for some people).

tmoxon
tmoxon in reply to Mise

Hi Mise yes the immunologist was involved in the Nice guidelines for CD and had worked in Ireland, I cannot be sure but seem to recall he was Moroccan.

Yes I found when first diagnosed that this site was great. The only misinformation I had was someone telling me on here that if I still had DH I was still eating gluten somewhere, in fact I later found out it can take up to 5 years to get rid of the DH rash even on a strict GF diet.

The dieticians I saw were not very well trained on coeliac and it was only after doing my own research and help from people on this site I found out about codex and maltodextrin, malt vinegar etc

Thanks for the link to the website

tmoxon
tmoxon in reply to Mise

Hi Mise

Just wondering why you went private for the SIBO test and if you know whether the test can be done at a GP's surgery? I watch a tv programme at the weekend where one of the presenters thought she might be lactose intolerant she was tested and it came back negative but they said she tested positive for methane and they were prescribing some antibiotics, Sibo wasnt mentioned but it seemed to me that this is what it was.

The programme was Secrets of your supermarket foods and the presenter was Sian Williams.

I cannot decide whether to ring my doctors about this and see if they can test or to wait until the vaccinations all die down a bit etc

Mise
Mise in reply to tmoxon

GPs don't test for SIBO. It's a hydrogen breath test which takes a few hours. You do a bland food diet for one day (no sugar, veg, fruit, etc.) and fast overnight, then drink a liquid, and then do a breath test every 15 minutes for 3 hours, and then that is lab tested for hydrogen (will also show methane production). GPs do not have the knowledge or resource for that, nor are they likely to have heard of SIBO (as I found out).

I went private as the hydrogen breath test is considered high-risk for covid, so all SIBO breath tests cancelled by NHS in the interim. Private firms will do the test by post, and it seems just as effective so unclear why NHS not using that route.

SIBO test may show normal, but the test will also show methane production, and it is a specific organism that leads to the methane production and that is more difficult to treat than hydrogen producing SIBO (thefunctionalgutclinic.com/...).

I would recommend, for the moment, if you need SIBO test/suspect SIBO to go private as you will have to join a very long NHS list (I've been waiting almost a year since consultant referred me) and major backlog from covid restrictions. It is pricey (prices vary, but I paid £250), but worth speaking to GP first to see if they can do a private referral under NHS (not sure if such a thing is possible). Lactose intolerance is a different test, so the one you saw on TV must have been multiple tests done at once. I used the Functional Gut Clinic.

tmoxon
tmoxon in reply to Mise

Hi thank you for all the information.

I cannot be certain without watching it again but I think that is the clinic that Sian Williams went to on the TV show. I am just wondering whether the GP would be willing to give me the antibiotics to see if that would sort it.

I know that its not ideal to have unnecessary antibiotics but from what I have read it isn't possible to get rid of this without them.

I looked at the list of tests, yes they are very expensive, not sure whether i can afford at the moment.

I notice that there is a phone number to call. I might give them a ring to ask whether this is what I could have

Mise
Mise in reply to tmoxon

Once I had the test done, I went back to GP for the antibiotics. I had even researched the ones that were needed. GP refused to make the prescription and referred it to the Gastro consultant to make the call and the gastro insisted on making the prescription. A lot of faffing. Again, there is no harm in asking your GP and, if nothing else, may get the ball rolling. I've actually complained to my local CCG complaints regarding all the delays and faffing, and expense. The NHS consultant only referred me for SIBO testing after I raised complaint about her ignoring my stating SIBO in an appointment with her. She totally disregarded what I was saying, stated to follow fodmap diet (with no advice on what that may/may not involve), and then I complained and insisted on SIBO referral. If she had got her act together I would have got the test done before lockdown. The CCG complaints told me to send on all the invoices for the private testing so I await their outcome on that. It's wrong that you should be messed around on any testing as SIBO has a wider impact than a bit of digestive discomfort, and I would be frank and firm with your GP on this. It might be worth also chatting with your local CCG to see if you can reclaim private testing costs given that SIBO testing is not happening due to lockdown. Another option is to go through a private GP firm - there are some online ones. For about £25 you can have a chat with a GP and they can write you a prescription privately as long as the antibiotics are licensed for SIBO in UK. I would be inclined to go the testing route though as antibiotics can wreck havoc on your digestive system, so better to do it if you're sure you have SIBO.

tmoxon
tmoxon in reply to Mise

Hi Mise thank you so much for all the info.

I am sorry to hear that you have been messed around so much. Sometimes the things are so simple that they don't pick up upon. I know this is off topic but I listen to a podcast called Liz Earle wellbeing, there was a menopause doctor on it saying she thinks that the hormone Estrogen could help in the fight against covid and it cost £4 but no one involved is thinking about looking in to it more.

I remember going to a really nice GP around 1989 and saying my stomach felt as though it had some sort of bacteria in it and that some days it felt as though it was reacting to what I had eaten i.e. blowing up. He told me to eat slower and chew my food more. I think I probably had CD at this time but it was 2011 before my diagnosis and I had the typical rash associated with it for years but was given betnovate cream for it and told it was dermatitis.

As I have been back to the GP a few times with these bloating issues they may be helpful, it will depend on who I see I think ( before Christmas I had a ovarian cancer blood test ) as that can also present with bloating. The young GP who sorted this out said to keep taking the peptac medicine I have and if that didnt help I might need an operation, the medicine does suppress the burping symptoms, did you find that anything suppressed yours ? Just asking in case I don't have SIBO

I also complained about a gastroenterologist who was very dismissive about my daughters symptoms when we suggested that she might have NCGS.

thanks again you have been very helpful

Mise
Mise in reply to tmoxon

No worries. I'm just shouting at my laptop screen everytime I read these repeat stories of GPs and consultants failing to understand or test for coeliac, and dismissing patients, and not also understanding how gut bacteria works/goes awry. I would tell that doctor who suggested surgery to go give himself a lobotomy if he hasn't tested/mitigated against all the non-surgical-requiring causes of gut pain/upset. Also, if it hasn't happened already, do get test for H-pylori/helicobactor - your GP surgery can do that test, and again, it's antibiotic treatment. In terms of supressing symptoms - mine are straight pain in GI tract and inflamation reaction in my joints, so they just tell me to take painkillers and I tell them to do some research on the damage painkillers do to the body and how masking the symptoms is only leading to longerterm drama. Grrrrr - someday we will have doctors who a) listen to us; b) understand basic functional medicine; c) understand how diet and food works!

tmoxon
tmoxon in reply to Mise

HI Mise thanks again for replying, the reason I mentioned the young Dr mentioning about an operation was because I was wondering whether if he was thinking of something so drastic he might just go forward with the sibo test.

I know what you mean about all of the times people go to the doctors to be fobbed off, the whole system is set up whereby you become ill and they then treat you, not preventing the illness in the first instance.

Although I think there are some doctors now thinking that this is the way to go, I listen to a lot of podcasts and there are many people saying that gene testing and DNA testing will become the norm and be very cheap in the future. Dr Chatterjee drchatterjee.com/ is a doctor who is trying to look into why people are getting ill instead of letting them get so poorly they need expensive treatments. His BBC series Doctor in the house was good at showing that what we eat and stress can play a huge part in our wellbeing.

I did see that I had a test for H-pylori/helicobactor at one time which was negative, but thanks for mentioning it.

Thanks for letting me know your symptoms, at the moment I am not in as much pain as I have been so will monitor it. Hope your treatment works and you feel better soon, let us know how you get on

Mise
Mise in reply to tmoxon

Thank you. Fingers crossed you get some answers soon.

Hi. I have celiac and was diagnosed 5 years ago. I went on a gluten free diet immediately. But here are some things that are factors.

After seeming to lose the symptoms of celiac for awhile , especially diarrhea, they returned and so basically I am now a person with "non responsive celiac disease." Quite a lot of celiacs have this classification, and of course no one knows why.

After getting the celiac blood test for gluten antibodies several times, I realized I was still eating gluten somehow. Once it was because I was eating organic hemp which should be gluten free, but after contacting the manufacturers they said that their fields were next to wheat fields so there was possible cross contamination. So I got rid of hemp.

Then I found out on this site I think that Imodium, which I take a LOT for diarrhea, has gluten in it. In the coating or filler. So the medicine I was taking to stop the diarrhea was causing the diarrhea. So I switched to Loperamide, which is the same active ingredient, but is labelled gluten free. You can get it online and the brand is Major.

So I finally got back another antibody test for celiac and I am in the normal range. But I still have diarrhea, and bloating etc.

But in the last few years I acquired a new symptom, which is burping. A lot, often. And I think that is probably SIBO. I have read that the tests for SIBO with diarrhea give quite a few false positives, and I don't know what other tests will tell me if I have it.

But to answer your question, the celiac test is an antibody test and you can still have SIBO and the antibody test can be normal.

Oh, you might want to check to see if you have lactose intolerance. That is very often another problem celiac people have. Hang in there.

Hi Eliz45 thanks for your reply.

About 3 years ago I had bad pain in my stomach after eating eggs, I was eating a lot of them and the GP sent me to a gastroenterologist where I had colonoscopy and endoscope and a body scan, the results were normal.

I can now eat eggs but my issue is exactly the same as yours - burping and pain in my stomach with it. It was really bad a few months ago, also my stomach aches if I don't eat.

I have been to the GPs now a few times and been prescribed lansoprazole, ranitidine and now peptic medicine. The lansoprazole caused me to go deaf ( well that is what I thought ) no proof other than I lost my hearing in one ear), I didn't notice any difference when on the ranitidine, however the peptic medicine seems to suppress the symptoms so I am just taking that at the moment.

Last month I had an issue with my tongue and the GP told me to see the dentist, I sent them a photo of my tongue and they thought it was healthy other than it was scalloped, she told me that it was a sign I was stressed as I was pushing my tongue against my teeth and maybe didn't know it.

I had been prescribed a low dose of amitriptyline by a neurologist a couple of years ago as I had bad headaches but had never taken it as I didn't like the thought of being on meds every day. Anyway I have now started to take it and so far I think it has made a difference, I have had less headaches and although I am still burping, its not as bad as it was at the moment.

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