I am wondering if anybody has had one of these tests done. My Gastroenterologist has suggested I have one of these tests without explaining anything about it to me. I have just been reading up about it and it involves either swalling a Radioactive type capsule or having a Radioactive Dye injected. I have already had to refuse a Colonoscopy due to my chronic allergic reaction to the preparations involved as I am a severe migraine sufferer. I am now really concerned about the effect this radioactive drug is going to have on me.
I tool Omeprazole recently for help my stomach and it's triggered the most horrendous migraine cycle that I cannot control. I am so allergic to just about every sort of tablet and "E" numbers and colours they contain that anything as strong as Radioactive dyes could just about tip me over the edge. I am on day 12 of a migraine now and am spending most of my time in bed on really strong medication which is giving me rebound migraines so I am already in a bad way without having to have further tests. My GP put me on a preventative migraine treatment last week (Topirimate) and it has made me even worse! Basically I react very badly to most medications and strong preparations. It has taken so long to organise these tests that my IBS symptoms are disappearing and my stomach is back to normal with no diarrohea for over 3 weeks. If anybody can give me any helpful advice or comments I would really appreciate it. My Gastroenterologist just doesn't seem to understand my migraine problems. I've just a whole year going to Acupuncture trying to get my head sorted out and now in this awful muddle. I dare not take the risk of another procedure when I don't know what effect it will have on my migraines. I am feeling so ill at the moment with them I cannot cope as it is. Any helpful advice or comments soon would really be appreciated. Many thanks indeed.
Written by
pump321
To view profiles and participate in discussions please or .
Hi pump321, well you are certainly up against it at the moment, I really couldn't advice how you would react to the radioactive, dye, only a professional would know what to do if you react to it. My Husband has had this done, and he had the dye injected, but his was for a different illness, he said it made him feel hot, and he just had to lay still for the pictures to be taken, they told him, he would pass it through his urine, and that it is minimal amount of radiation. The IBS side of it and Migraines, I can relate to, it's horrible. If you are worried about the procedure, I think it would be a good idea to speak to your GP, and explain your worries. I hope it all works out for you. Good luck Take care.x
Thank you very much "Blue52" for your really quick reply. It's a horrible dilemma for sure. Thanks also for the information about your husband having this test.
My GP is going to ring me today to discuss this so he does know my migraine history but he really has no idea how much time I spend in bed and don't have a social life at all. We only have the usual 5-10 minute appointment and that's it. He's a lovey chap but he will probably say you don't know how it will affect you unless you try it! Always optimistic! Well, I have thought about this overnight and I think I'm going to have ask my GPto cancel this test and try to explain to him how bad things are for me at the present and then have to try and re-arrange it for another time if my symptoms come back. I have already told my Gastroenterologist that I couldn't have a CT Scan with the "Constrast" so they have just done an ordinary one without. This test could potentially be worse than the CT Scan with Contrast. He just didn't seem to understand. I hope I'm not going to upset my GP and the Gastro. chap by not agreeing to have it done but I think I have to do the wisest thing for me knowing my allergic reactions to these "strange potions". Thanks again for your support, much appreciated.
Hi there,You seem to have the same problems as me,maybe you remember I suffer constant migraines and Im allergic to all medication including topirimate.This is only what I do now but it is up to you to follow your intuition,I take only one tablet daily and no preventative now.I found I was getting worse with various meds,although Istill suffer at least I know im doing no more harm.I know how hard it is having constant pain but I have come to the conclusion nothing helps not even acupuncture.Im sorry I cant help but just let you know how I deal with it now.Hope you find some help and if you do let me know .Take care
This test is suppoed to screen for a condition called (Bile Acid Malabsorption ) induced diarrhea.This is when you have chronic diarrhea even with diet change .it is the ''spilling " of excess bile acids into the colon instead of being reabsorbed back to the liver.This excessive amount of bile acids in the colon basically cause the constant diarrhea.The treatment is by taking bile acid binders medications.I totally agree with you about not undergoing this procedure as this test is not even approved by the FDA because of this radio active dye .. therefore it is not used in the U.S .
Sorry for the long introduction ..it is just to help you see the whole picture .
There are other alternative blood tests to screen for this condition BAD ( Bile Acid Diarrhea ).
Ask your doctor if you can take the ( Serum Hydroxy Cholestenone ) blood test , which is a simple way to detect (BAM) without the worries of (Radio Active dyes ) side effects on such a sensetive body like yours .
Hi "Eternity", thank you so much for getting in touch with regard to the SeCAT SCAN and Radio Active Dyes. What a relief to hear that there is a blood test (Serum Hydroxy Cholestenone) that can be done without having to endure the trauma of the Radio Active Dyes. If this test is not approved in the U.S. it makes me even more concerned as to why we are allowing it here in England. I am wondering if they will do the Serum Hyrdroxy Cholestenone blood test here, I do hope so. I don't expect my Gastroenterologist will be very pleased if I ask for it as they don't like to think we have any knowledge of these medical tests. I did ask him about the SeCAT SCAN but as it's being done in another hospital he said he didn't know too much about the procedure, I have had to find out through contacting the scanning department and doing my homework.
Thank you very much for this great information, thank goodness for HealthUnlocked. What would be do without this site and all the support we receive from one another. Much appreciate your help.
you're welcome ..my pleasure to help ..we are all here to help each other
yeah ..it is true that doctors don't like it when you know more and argue about his /her decisions ..that's why I go straight to the lab and do the tests that I think I needed based on my knowledge and research ..if they come back positive ..then I return to the doctor's office with my tests results to prove my point .convincing doctors has always been a battle for me 😩
We do not have the facility of a lab to do tests here in the UK, everything is done through our Doctor's and Consultants but I am definitely going to take the bull by the horns about the "Serum Hydroxy Cholestenone" blood test and see if I can get that done, I'll ask my Gastroenterologist when I next go to see him. I spoke to my GP briefly yesterday and he has agreed it's not a good idea for me to have the Scan with the radio active dye and was very kind and understanding. So thank goodness I don't have to go through that! Many thanks again for your help.
Hi "Bengal2013". Thanks for getting in touch, it's very kind of you to reply. Sorry to hear you are also still suffering from contstant migraines, it is a silent disability that nobody only us sufferers really understand. We sound as if we are both the same, I'm so glad I am not alone, it's great that you understand what it's like. I think maybe we have been in touch before at some time. May I ask you what is the "one tablet" that you take daily? Is it a triptan? I am taking a Zolmitriptan (Zomig) every day at the moment. I know it's not ideal and it's probably making things worse but if I don't take it I am physically sick and cannot keep fluids down, so this presents another problem! This is the worst I have ever been over the last 40 years and nothing will break this cycle.
I had 9 months of Acupuncture last year which eventually gave me a little relief but it didn't stop the migraines altogether, I just had better days. I haven't had any Acunpuncture since February/
I don't know what to do about this SeHCAT SCAN, I don't feel I dare risk being injected with this Radioactive medication, it's just too risky at the moment. I have always worried about what would happen if I had to have these kind of things done as I know how badly I react. I will let you know the outcome. Wouldn't it be great if we could something to help us that really worked without side effects? There is a new injection coming on the market in 2019 but it apparently it may only work for some of us migraine sufferers.
Many thanks again for getting in touch. Take care and hope we eventually find something to help us.
With this many sensitivities and headaches and gi problems, I would suggest you google Mastocytosis society of Canada which has interesting information on a syndrome that is newly recognized, the Mast cell activation symdrome. It causes all sorts of odd symptoms that are seemingly inexplicable but tied together by mast cells secreting inappropriate amounts of various inflammatory chemicals to inappropriate stimuli which is different for each person. Like allergies but a bit different and much more intense and nasty. I am being worked up for this. I have developed multiple food sensitivities with headache, dizziness, ear ringing, weakness and abdominal pain and distention. I can also react to meds. I figured this out be keeping a detailed food diary and saw that I was definitely sensitive to all grains (not just wheat) and a whole host of foods which really didn't make any logical sense. When I restricted my diet, I felt much better unless these foods crept back in accidentally.
Hi "notibs", thank you so much for your very interesting message. I will google the Mastocytosis Society of Canada. For a very long time I have felt that I must have very different problems to other people as I am so sensitive to so many things. I have had some very weird illnesses which are of an inflammatory nature with blood in my urine and all sorts of strange symptoms. After lots of investigations nothing can be found wrong with me. I am ill for months then gradually get over it, whilst still struggling with migraine all the time and not being able to tolerate just about any kind of medication. I am sorry to hear you also react to medications and have food sensitivites with all sorts of odd symptoms too, it's a nightmare. I have been diagnosed with Chronic Fatigue which covers a multitude of problems. I could go on and on about the things I am allergic/intolerant to. Wouldn't it be wonderful to just be normal like other people and not have all these problems? Once again, thank you for taking the time to get in touch and for sending me details of this society in Canada, I am very grateful to you as I would never have known about this, that's where this site is so amazing. We can share such valuable information. Many thanks again for your help, much appreciated. I will investigate.
Hi pump321, I can really sympathise with you. I too suffer awful migraines and am allergic to topiromate (although I have found a certain manufacturer of it that I can tolerate, speak to your chemist, the more expensive version is more easily tolorated). I took the radioactive capsule for the SeHCAT scan and I was totally fine, but everyones different, but for me it was the best thing I ever did, I was positive for BAM and I'm on treatment and have my life back. As I say you have to do what's best for you, if your not happy to with it, ask your doctor to try you on the treatment and see how you go, if you respond to it, you shouldn't need to do the test (my advice ask for the tablets not the powder you mix- that's vile). Good luck 😀
Hi Denise, Thank you for your message. I am sorry to hear you too suffer with terrible migraines and you are allergic to Topirimate but have managed to find one that suits you. I was advised to get the proper make "Topomax" but was giver a generic version as my surgery said I would have to try those first. I know Topirimate is difficult to tolerate anyway but went ahead and took it for 2 nights. It gave me the most awful acid reflux which was crippling and made me feel so sick I couldn't eat anything so came off it straight away. I don't think I would dare go back on it for the time being anyway, even if I was able to obtain the Topomax. The problem is I react to most medications very badly.
I am pleased you were able to tolerate the radio active capsule for the SeHCAT Scan and it worked for you and has sorted out all your problems.
I could ask my Gastroenterologist if I could try the treatment for BAM and see what he says. The thing is I've waited so long for these Scans etc. my diaorrhea has stopped and my stomach is normal now, the stomach pains have gone which is really good news but all the weeks of trying Lansoprazole, Omeprazole and the Topirimate have triggered this migraine cycle off so badly I am now virually housebound and spending most of my days on the sofa or in bed. I have never been this bad before. I don't have any idea how to stop them now.
I spoke to my GP on Wednesday and explained about the SeHCAT SCAN radio active capsules/dyes and he said he didn't think it was a good idea to put me through that if my stomach had settled down. He's more concerned about me taking a Zolmitriptan every day as I guess it could lead to a heart attack or stroke. Many thanks for getting in touch and for letting me know about your expirience, I much appreciate your comments. So pleased you have your life back again.
I can totally relate to what your going though, people who don't understand just think it's a headache! My diagnosis is cluster migraines and when they flare up, finding any relief is hard. You don't mention a neurologist (or I have missed that bit) I see a neurologist for mine, maybe worth a referral, but that's easier said than done sometimes. But it's not fair that your having to suffer, most of the migraine treatments don't work immediately (that's if you can even take them)
I've persevered on the topiramate, felt so poorly at first but chemist changed them to the proper version and slowly the sickness went away and appetite has come back (although not totally normal) but I can put up with the other side effects (can't take the full dose only on 75mg).
So pleased your stomache has settled tho, that must be a relief. The treatment for bam is a bile acid sequestrant so maybe a good thing for you (if you do need treatment) is they don't enter the blood/get absorbed, so with a bit of luck you maynot be allergic, think your right not to have the SeHCAT test, the actual test is fine, but it's all the scary stuff that goes with the capsule (stay away from children/pets because your radioactive!) I didn't have the option of a blood test!
Hi Denise, Thank you for your last message. Your cluster migraines must be a nightmare, I don't think that's what I've got. Cluster migraines must be so hard to tolerate, I think the pain just goes on and on with those. At least I can take a Zomig and I know that if I can go to sleep at least I stand a chance of waking with less pain but it takes awhile for things to subside and then there is the fatigue and lethargy after taking the medication but at least I get a few hours break until the next one starts up again.
I have been to see various neurologists over the years but none since about 2011. I lost faith with all of them to be honest. The first one prescribed Atenolol which I took for over six months and it decreased my pulse rate to a level where I could hardly walk. Then I visited the Migraine Clinic in London and a leading migraine specialist prescribed Asprin in a fizzy drink and Nortripyline. I told her I had tried Nortripyline and it didn't suit me and she said to try it again! I cannot toleralte fizzy drinks as they contain Aspartame. I then saw a third neurologist who wanted to inject my neck but when I arrived at the hospital the lady in front of me had obviously collapsed and was taken out on a trolly! I thought if it was that bad I wouldn't hang around so I just fled! The fourth was a leading neurologist but with all his knowledge he just said I was taking too many Zomig tablets (which I already knew of course) and advised me to go cold turkey and that would sort things out! I tried to explain how violently sick I became if I didn't take a Zomig and I get really dehydrated but he just said there was no facility in hospital these days for that kind of problem. I came away devastated and have just carried on alone ever since.
I don't think I've had much luck to be honest but my GP is going to send me to see somebody else now. I would like to see Prof. Goadsby in London or perhaps Dr. Nicholas Silver in Liverpool if possible but I don't know what they could do to help me.
It is a huge relief my stomach has settled and the reflux and sickness from taking the Topirimate is settling down at last as well. I'm still having a daily migraine which is a worry but I live in hope that it may settle down and I have a few clear days again.
Thank you so much for all the info. you have given me. I am not sure if they do the blood test instead of the SeHCAT SCAN but I will have to ask when I see my gastroenterologist again. I much appreciate you taking the time to reply to me, it's such a lonely place when you are feeling so ill and not having anybody else in the same position who understands and has got exactly the same problems. It's wonderful to log on and find a really helpful message, it certainly has given me hope. I find the people on this site are the kindest and most understanding. If somebody who you don't know can respond I think it's wonderful. Take care and many thanks again, much appreciated.
I've recently had this done. not bad actually. blood test doesn't have a good percentage to diagnose this condition. I had to swallow one small radiation tablet not injection. I am awaiting my results and should know within two weeks. it was a very simple easy test. swallow capsule come back 3 hrs later lie on bed with a sort of lamp above to detect radiation has been absorbed. then 7 days later return to have lamp test done again no capsule on this occasion. eat drink normally but can't take anything that you usually take to stop diarrhoea. hope you consider having this test. im hoping they find out why I go to the toilet about 30 times a day and night. can't absorb tablets,mens etc and feel and look like crap. if it is this there are meds I can take to help me. after 8 years approx of this I think I'd settle for this and I would have any test to stop me feeling so I'll and having so many problems
Hi, Interesting to read all this. My Doc has organised this for me - though didn't explain what it was. I rang to find out and they told me it was for diarrohea but I am not having trouble with that but with bleeding from my back passage about 3 times a week - sometimes 3 time a day. I have had so many tests that make me feel worse rather than better and nothing has worked. He said I would have to wait a year for the blood test because it is only done at one centre here in South Wales. What I have is urgency to pass a bowel movement and bleeding but not diarrohea. Am going to ring his secretary and ask if this is why he has asked for this test or not and if it is actually any good to me. Both my Dad and Sister had/have colitis so am wondering if this is what I have but woud have thought that this would have shown up on sigmoidoscopy, colonoscopy or CT colonography.
Hi read your post and if you check my recent posts it may help. And the SeCHat and have now just started (today) taking Colestryramine which has been recomended to me due to a severe bile acid malabsorption. (I was equally worried about the radioactive pill but it was fine) I get severe headaches and neck pain/ migraines much of the time so I relate to you. I'm sorry to hear this and I know how hard it is to cope with as I have yet to find a pill to help - and I have tried many- and sleeping it off generally doesn't work.. also I've had acupuncture and sometimes it has exacerbated a tension headache or brought one on. Sorry not to be of too much help here but hopefully my posts will..Also speak to your doc about sumatriptan - not sure if it will help but just got some as I've had some before for migraines.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Does anyone have SIBO and IBS?
After review with consultant
FODMAP diet long-term?
Kimijea 2nd week update.
Please Help! What drugs are best for a bad flare-up?
