Is this IBS, or something more? What tests are... - IBS Network

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Is this IBS, or something more? What tests are needed for diagnosis?

Gickel
Gickel

I have not yet received an official IBS diagnosis, but was wondering if anyone could help me? I have been sick for two months more on than off. I am 23 year old woman who is overweight and struggle with stress. My symptoms are nausea, bubbling gut, chills, extreme gas and bloating, and bouts of diarrhea. Does anyone else get chills? My doctor seems unable to find cause and unwilling to diagnose, wonder if I need second opinion... I also have no idea where to begin on IBS treatment. I am honestly terrified and just want to be well again. Any help is greatly appreciated.

19 Replies
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Firstly IBS is determined when all tests have come back clear for other more serious conditions. Please don't take this wrongly but IBS can be mild or severe. However you need to discuss your symptoms further with your doctor.

Gickel
Gickel in reply to Viklou

Thank you. I definitely don’t take it wrongly! I guess my frustration is that all my tests have been fine but the doctor is unwilling to say IBS. I think I will visit another doctor and get a second opinion.

Yes I do! I've had loads of episodes of what I thought was a stomach bug but I had one every month in lockdown (chills, gas, wanting to be sick, wanting to go to the toilet but nothing happening). I had black diarrhea too. I've had tests and they think I have a bleed in my intestines but those symptoms are related to the IBS. Been referred to a dietician to try figure out what's causing it.

Hi. Ask you doctor for referral to gastro. Your symptoms sound similar to mine and I was diagnosed with bile salt malabsorption, formal diagnosis through a sehcat scan. I had so many tests bloods, stool, colonoscopy etc but all clear. Look at bad-uk.org website for info on condition. I still have my gallbladder so mine is unknown causes. Weight gain is common with it despite having lots of diarrhoea. You’ll also need vitamins checked as the malabsorption means you don’t absorb them. I have to take vitamins D, B12, iron, folic, potassium and omega. All at prescribed strengths. If they won’t refer you ask for colestyramine which are sachets of bile binders to try. Body had to produce more bile to break down fat so eating low fat will help.

Sounds like IBS, I had severe symptoms when I first got diagnosed in 2012, nowdays they are mild and come and go.

Your chills might be unrelated.

Do you sleep well at night? If you do that's a good clue its just IBS.

Gickel
Gickel in reply to Dalph87

Sleep like a baby! Unless the gas pain is too painful, but that only happened once.

Hi i have had similar symptons to yours all started just over a year ago vomiting, diarrhea, terrible stomach cramps for 24 hrs and a bout of uncontrollable shaking which lasted for about 30 minutes at a time, the shaking happened 5 times. to cut a long story short after all the test's i had a call form the hospital yesterday to say i am being referred to gastro and if that fails back to the hospital they also said the shaking (chills) has nothing to do with it. i like to think i'm one of the lucky ones on here my symptoms are nowhere near what some poor people go through. good luck

Are you based in the UK? If so there is a set protocol for diagnosing IBS in the UK via blood and stool sample tests:

nhs.uk/conditions/irritable...

Have you had these tests? I see your reply to someone seems to indicate this. If you are in the UK I don't understand why they are not calling it IBS if everything else has been ruled out. I would get a second opinion, so at least you know how to proceed - it can also help with getting referrals e.g. to dietitians.

Assuming you have IBS, here is some information about IBS that I have shared with others in this group in case any of these tips are of interest to you:

IBS can be due to a number or combination of factors - these can be stress (including stress from early life experiences) which impacts the communication between the brain and the digestive system. There are lots of free webinars online at the moment regarding mindfulness meditation which might help. Plus you can ask to be referred for CBT or something similar to reduce your anxiety - I would have thought online appointments are available. Exercise can play a major role in IBS in terms of reducing stress, helping your gut microbiome and regulating bowel movements.

There is also not absorbing certain types of carbohydrates called FODMAPs very well, the residue ending up in the colon and bacteria feeding off them causing symptoms. Ordinarily feeding gut bacteria is a really good thing - when you feed good gut bacteria these produce by-products that have great health effects in the gut and throughout the body. However, in some people with IBS bad bugs might have the upper hand over good - these bad bugs may cause symptoms such as excess gas, pain or disordered bowel movements. There is an interesting infographic on this here:

gutmicrobiotaforhealth.com/....

This is why it’s worth trying probiotics such as Alflorex (which has been scientifically studied for IBS) or Symprove to crowd out the bad bugs and make their numbers die down. If that doesn't work you can try the FODMAP elimination and reintroduction diet. This is normally under the guidance of a nutritionist via GP referral - this may not be possible at the moment so you can read about it online. If you download the Monash University FODMAP app and Kings College fodmap apps, they will tell you which foods contain FODMAPs and in what quantities. You can eliminate all FODMAPs for 2 weeks and then introduce each type of FODMAP one at a time starting in small quantities, increasing over a 3 day period and wait up to 4 days for symptoms. I go much slower than this - only introducing a small amount (1/4 to 1/3 of a normal portion size) of the same food for 3 days and then increase if tolerable or no symptoms and cut back to the previous amount if symptoms for longer and then try to increment again . I've read your microbiome can adapt to handling a new food if introduced very slowly and your bad bugs are under control with a good probiotic. Ideally you want to eat as many FODMAPs as you can since they are good for your health. Many people with IBS don't have diverse gut bacteria - it has been found that people who lack a diverse microbiome are more prone to diseases in general. In the long run, if you can get your symptoms under control, the ideal situation is to have a very varied diet - lots of different coloured fruits and vegetables, a variety of protein and carbohydrate sources including cereal fibres. This may seem a long way off, but with the right treatment all of this is possible. Last year all I could consume to control my IBS was white rice, protein and limited low fodmap veg. Using the approach above (particularly introducing Alflorex) I am now able to consume far more foods - more than I've ever dreamed of including wholewheat bread which is unheard of for me.

If you are also suffering from pain, you may be suffering from visceral hypersensitivity (functional abdominal pain) - there is info about it here:

iffgd.org/lower-gi-disorder...

It is where the brain interprets the normal activity of the bowel as pain - this is due to a wearing down of neurons in pain control centres of the brain which can be caused by PTSD, neglect or abuse in childhood, extreme stressful events etc. The first line treatment is nerve pain agents such as low dose amitriptyline. There is a theory that being on something like amitriptyline for 6-12 months can help the pain control centre neurons to regenerate. Note that amitriptyline can cause constipation, but this can be helpful in people who are diarrhea dominant. Unfortunately I couldn't tolerate these. Linaclotide (for IBS-C only) & Alflorex have helped me with this intestinal pain.

You may also find assistance with anti-spasmodic medication such as mebeverine (Colofac) or enteric coated peppermint.

You can find some info on self management here:

theibsnetwork.org/the-self-...

If all of the usual IBS remedies fail and you are experiencing diarrhea, it is worth getting tested for BAM (Bile Acid Malabsorption), which can cause constant diarrhea - there is a separate test and treatment for that. Good luck.

Gickel
Gickel in reply to xjrs

Wow! Thank you so much for all the information!!! Also, unfortunately I am in the US with it’s terrible healthcare... also in the south, where it’s difficult to find a good doctor that is covered by insurance.

xjrs
xjrs in reply to Gickel

Sorry to hear that Gickel. I hope you find some answers soon. Take care.

A second opinion isn’t enough. You need another ten opinions. But of course this would be time consuming and impractical. And possibly confusing.

Get a good book on ibs. Read it slowly and take notes as you go along. Anything you think applies to you highlight in red or blue.

You’ve come to the right place. We’ll take care of you. Buona fortuna.

Gickel
Gickel in reply to Batteria

Thank you so much for your kind reply. That’s how I was feeling - having to pay so much money for all these tests is financially straining.

Yes, I get chills quite a lot these days. I used to get hot more years ago but now I seem to alternate from being cold one minute and hot the next, although these days I seem to be cold more than hot. I am sure it's connected to the IBS.

Gickel
Gickel in reply to Maureen1958

That is the same issue I have! I used to be so HOT all the time, especially since the climate is hot here in the south. Now I get cold much more easily.

Maureen1958
Maureen1958 in reply to Gickel

How often are you having diarrhoea?

Gickel
Gickel in reply to Maureen1958

Only in bouts, it actually follows big meals I think. I usually try to eat smaller meals

Maureen1958
Maureen1958 in reply to Gickel

Okay thats sounds quite normal for IBS. I was just thinking about what jbrking and xjrs said about BAM (bile acid/salt malabsorption). It might be worth running it past you doctor, to see what they say. As you are in the US you would not have to go through the SeHCAT scan, so you could probably trial a bile sequestrant, if they think that appropriate.

Stress can cause IBS and all the symptoms you explain and ibs can cause the stress so its a viscous circle slowly making things worse. Ibs will develop into anxiety and often fibromyalgia but they can also develop into ibs. All three are misunderstood and dont know whats the cause of each or how to get rid. Some say you can't cure them but this is not helpful to people especially with stress or anxiety as it makes them worse and this in turn makes ibs symptoms worse.

Remember the saying I've got a gut feeling about this or when your anxious or afraid you feel sick to your stomach or have the runs or possibly even wet yourself. Its because your second brain is in the tummy speaking to the brain in your head.

If you can manage to calm down your stress and anxiety it will help your ibs and the better ibs will improve your stress and anxiety.

The problem is lots of things can cause problems in your stomach and bowels to upset the normal bio in your digestive tract and anxiety is one of them along with acid reducing meds like omeprazole ppis or ranitidine ( now banned) or equivalent drugs. Also medications for lots of illnesses can damage or irritate the stomach and increase acidity. Gastritis and ulcers are common and although acid reducing meds like above help to heal ulcers and gastritis by reducing acid we also need acid to process food and meds in the stomach and therefore get the nutrients and vitamins we need but with too much acid it can damage the stomach or at least cause red raw inflammation causing less effective nutrient extraction.

Often gastritis and ulcers are caused by a nasty bacteria called helicobacter Pylori which needs and acid reducing drug and two different anti biotics at the same time to kill it but all these anti biotics and acid reducers causes an upset bio in the digestive tract and causes ibs symptoms and gas.

So if you have gastritis bloating tummy pains and maybe acid reflux although this can be silent at times (not noticeable but still burning your insides) then ask your doctor for a helicobacter Pylori breath test or a referral for a gastroscopy ( camera) i had hypnotherapy for my ibs and it worked. I was free of ibs for almost a yeah but then had a heart attack and had to take a lot of medications for a year including ones that can damage the stomach so had to take the acid reducing drugs to protect my stomach. So my digestive tract was all messed up again and the ibs came back along with the anxiety but obviously some anxiety came from the stress of a heart attack. Pain killers like aspirin or ibuprofen nurofen etc known as NSAIDS painkillers cause acid in your stomach and can cause ulcers and bleeding so its best to avoid these or not take them at all when you have ibs or gastritis. But lots of other foods and drinks can also cause gastritis and acid like red wine beer amongst other alcohol, greasy foods chocolate etc and smoking.

I know it sounds a bit of a kill joy but don't drink smoke or eat these stomach irritants until your stomach bio gastritis and ibs is better or you will continue to suffer over and over again

Gickel
Gickel in reply to Leemccluskey

You are completely right. I went to a new doctor and was diagnosed wi Th IBS and my trigger was stress. I’ve been placed on an anti anxiety medication, and I feel 100% better. I may flare up if I eat foods you mentioned, but it doesn’t last for weeks like before.

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