Any Ideas Please... (Please Read)

Digestive health
1

I have just joined this former to ask about this as I am struggling.

I am 19 and for about 4 and a half years had a chronic illness called ME (Myalgic Encephomyelitis) and it is common for people with this to have gastrointestinal problems, problems they can't often get to the root of it seems.

I will list my symptoms and I ask if you could please offer any suggestions to what my issue may be and what I can do

*Constant nausea (again something common with ME), but particularly at night, the reasons I joined is because I have just had a very bad bout tonight. The nausea at night is so much worse than in the day.

*I think when I wake up, I have discomfort in my heart area which makes me think could it have something to do with acid reflux?

*My stomach, or the area under my left ribcage, is in constant discomfort.

*Certain foods make me feel very unwell, and I am on a diet called SCD which has been a means to help me. Again finding many foods you previously could eat, now difficult to eat, is common in ME too. The worst are fatty foods like nuts and oils, and also particular carbohydrates like rice, potato and I don't eat wheat either.

* Partly due to my ME, but a big part due to my stomach, I am in a wheelchair, but when I get out to do something or get something I feel worse the longer I am standing up (which isn't long at all) and this is exaggerated at night, so sometimes I don't feel too bad but once I have clean my teeth and got changed etc, that movement and standing up has made me feel much worse.

*i never actually vomit! the whole time I have had this illness I have not! but I feel so sick so sick I just can't explain.

Just a few last notes which might be important (feel free to ask me anything else too);

I am very slim and always have been and was very active etc. before becoming ill.

At night I sleep with lots of pillows so I can sit up in bed as lying down is worse (acid I guess), but I read today that isn't always good due to pressure on the stomach? Also in regards to pressure on the stomach, bending down or leaning for me is an issue, could anyone explain this pressure on the stomach problem?

I can't think of much else off the top of my head, I do see a doctor and have tried things like proton pump inhibitors, and I know some symptoms of low stomach acid can be like high, but i think this is high stomach acid.

Please reply with any help.

2

Will, there are different acid suppressants called h2 Antagonist, I take one called Nizatidine and you take one at night, also ther is a drug called Motilium ( Domperidone ) which is for nausea and bloating.Might be worth a try.

3

I am so sorry to hear about your ME. My friend has bouts for months then she is fine for months but doesn't know why. I think it unlikely you have low stomach acid due to your age but just in case....I had a dull ache under my ribs for years and nausea and could wear anything remotely tight. I also had bloating and constipation. The docs gave me Proton pump inhibitors as they thought it was high stomach acid. Nothing worked. I looked more into it and found out that some people have similar symptoms for low and high stomach acid. I started taking digestive enzymes with betaine HCL in them (produces acid in stomach) and I was better in one day! I also drink 2 litres water and take an 8 strain probiotic. If I don't I have stomach issues. I really hope that it is low stomach acid for you and this post helps.

4

Ps have you had your thyroid checked? My friends TSH was through the roof!! They hadn't checked it for years and now is in a high dose of thyroxine and feeling so much better.

5

Hi Will, Im sorry you feel so dreadful, must be so hard having to go through all that and at such a young age sad. I have no knowledge of ME but one thing I do know is that ginger works miracles for nausea (and any digestive system related problems). You can buy fresh ginger root and make a tea with boiling water, or just get ginger beer and add some 'Rochester' ginger (comes in a big bottle from Holland & Barrett). Ginger has been used to combat nausea for centuries, it really does work. Good luck!

6

I had ME as well - was unwell for several years....have you had the test for Coeliac disease as this could be your problem ...talk to your GP about it - it is an easy blood test and best done before you start eliminating things from your diet in the hope of getting yourself well. See Coeliac UK website for info.

7

Just re-read your post - not bring able to tolerate fatty foods can be due to inflammation of the intestines - my mum has chrones disease and had symptoms like yours for years. Until diagnosed. I know I've given few options earlier but hopf one of them will help!

8

1 person in 100 is known to suffer from Coeliac disease...and it is also known that this is only the tip of the iceberg as so many folk remain undiagnosed or told they have IBS

Our small intestine is the place where our vitamins and minerals are absorbed into the body...via villi, which are like little hairs wafting in the wind. If we become Coeliac - and it can happen at any age, and without warning - but may be as a result of an infection like Epstein Bar virus (a type of Glandular Fever) and before we know it those little hairs react to the gluten in our food and withdraw into the gut lining, leaving it inflamed and smooth...from then on our nutrition starts to fall. We become deficient in iron, calcium etc and start to feel tired and exhausted and ill. Our bones and joints ache and we think we have arthritis or even MS as the symptoms are similar at that time. I was told it was post viral syndrome - my GP refused a blood test to check my iron levels - which had often been depleted over many years. I was told that it was the situation I was in - 3 young children and a husband who worked long hours...but I knew it was not this!

I struggled on for 2 years - we moved house to another area and a new GP was my saviour! She tested my blood and found i needed a transfusion - and send me to a Gastroenterologist who diagnosed my Coeliac condition. This was little known at the time and even close relatives did not believe that bread and wheatflour could possibly make me ill....many sufferers get this reaction and end up severely depressed as a result. Our bodies are not working properly and it is in fact fighting itself - until this is sorted out a wide variety of symptoms can be present. Only by reading up on the subject will you know if it relates to you in any way at all.....As with Chrones disease, the undiagnosed Coeliac condition can have serious results. Persist with your GP to find out what is causing you to be so ill. You are entitled to a referral to a Consultant Gastroenterologist when you have been ill for so long with no improvement.

Not long ago it was said - by a GP - on television that they are told not to pursue any illness or send a patient on referral elsewhere until they have been to the Surgery for the same problem at least 7 or 8 times in one year.....we all need to remember this!! A sad state of affairs.

9

In case they will post this link to help you:

https://www.coeliac.org.uk/coeliac-disease/about-coeliac-disease-and-dermatitis-herpetiformis/

Do take a look - you have nothing to lose and everything to gain.

10

Thank you, I appreciate all your replies. Thanks for the medication suggestions and the suggestion of low stomach acid.

In regard to my thyroid, I am pretty sure I have had that checked a few years ago at the beginning of the illness, I looked up thyroid problems and my symptoms don't seem to fit with those on the NHS website, I could be wrong of course.

In regards to Coeliac, I haven't had wheat in a long time, could Coeliac still be causing me issues even if I wasn't having wheat? Although the change from me while having wheat to stopping having it didn't seem so big,that was about two years ago.

Again with crohns I seem to have some of the symptoms, but ones you can get with many gastro issues, not so much the bigger ones, like blood in stool etc.

And thanks for the suggestion of ginger, I used to enjoy Rochesters but can't drink it any more.

11

Have you been checked for small intestinal bacterial overgrowth (SIBO). It can cause Chronic Fatigue Syndrome which I think is another name for ME and can cause symptoms like gerd. You should find a good gastro (if you are in London I can suggest one that has treated me who is excellent through a private message. I would suggest the following to be 100 percent clear what the problem is. Endoscopy with a biopsy from the top of the small bowel (will be able to tell if there is lactose intolerance using this and rule out stomach issues and h pylori infection), colonoscopy which can also help check for chrohns and the like. Blood test for celiac. Hydrogen lactulose breath test to check for small intestinal bacterial overgrowth. Yeast overgrowth blood test in case you have yeast in your gut. Stool test to check for pancreatic insufficiency. I personally think it is quite likely you have SIBO. Have a google of SIBO and cfs. There is also a famous book on it by mark pimentel call an IBS solution or something like that. It can be sorted with antibiotics and potentially with the right probiotics. Would try a lactose free diet as well. The fodmap diet may also be helpful

12

Thanks I will look into it now. My ME was triggered by Glandular Fever, but it is widely suggested that that is what pushes you over the edge, so SIBO may play a part I will look. I am already lactose intolerant and my mum thinks I have been since about the age of 4. In the first 2 1/2 years of illness I felt sick all the time but in a more low level way and these last 2 years is when my stomach has been worse (I say stomach I just mean GI stuff in general), could SIBO get worse over time or is it more sudden and when it's there it's there.

Thanks for the offer of a gastro doctor but I am in the North and can't really leave the house but in the coming weeks I will hopefully have a local appointment.

13

SIBO probably develops over time and can indeed get worse. I have SIBO and it comes and goes. If I have been on antibiotics it will be ok for a couple of months or if I have been regularly taking symprove probiotics it gets better (also diet matters). I wouldn't recommend probiotics for you until you have seen a good gastro. Symprove is good as it is lactose free and has 4 strains. There is a section on the site where people, including myself, discuss it

14

Thank you for the information,

I hope I can get this gastro appointment and I hope it yields some answers.

15

Many Coeliacs are Lactose intolerant as well - sometimes the latter settles down after the gut has returned to normal on a Gluten free diet:

"Lactose intolerance can be associated with coeliac disease as the disease damages the part of the gut where lactase, the enzyme that breaks down lactose, is produced. Symptoms of lactose intolerance are similar to that of coeliac disease."

When you say you have been on a wheat free diet ( ie gluten is in wheat, barley and rye) for a couple of years, has this been done with help from the Coeliac Society? Do you check every single thing that you eat? This includes the gravy on your dinner, the ingredients on every product list - as so many other products you would not necessarily think of contain gluten. Coeliac UK will provide you with a Food Directory which is a great help when shopping - covers most Supermarkets as well as other GF providers. It is virtually impossible to be entirely gluten free without this help, at least initially.

Also. see Coeliac UK website - and N.B. "anyone who has been told they have IBS should have first been tested for the Coeliac condition - as per NICE guidelines to GPs":

"What causes coeliac disease?

Coeliac disease is caused by a reaction of the immune system to gluten – a protein found in wheat, barley and rye. When someone with coeliac disease eats gluten, their immune system reacts by damaging the lining of the small intestine.

What are the symptoms of coeliac disease?

Symptoms range from mild to severe, and can include bloating, diarrhoea, nausea, wind, constipation, tiredness, headaches, mouth ulcers, sudden weight loss, hair loss, anaemia and osteoporosis.

The symptoms of coeliac disease vary from person to person and can range from very mild to severe.

Symptoms of eating gluten, or being ‘glutened’, include headaches, diarrhoea, stomach pains and lethargy. The reaction is not the same as an allergic reaction and does not cause anaphylactic shock. The symptoms may last from a few hours to a few days.

Coeliac disease is known as a 'multi system' disorder – symptoms can affect any area of the body. Symptoms differ between individuals in terms of type and severity.

Possible symptoms may include:

severe or occasional diarrhoea, excessive wind and/or constipation

persistent or unexplained gastrointestinal symptoms, such as nausea and vomiting

recurrent stomach pain, cramping or bloating

any combination of iron, vitamin B12 or folic acid deficiency

anaemia

tiredness and/or headaches

sudden or unexpected weight loss (but not in all cases)

mouth ulcers

hair loss (alopecia)

skin rash (dermatitis herpetiformis)

tooth enamel problems

osteoporosis

depression

infertility

liver abnormalities

repeated miscarriages

joint and/or bone pain

neurological (nerve) problems such as ataxia (poor muscle coordination) and neuropathy (numbness and tingling in the hands and feet)

amenorrhoea (lack of periods in women)

epilepsy

type 1 diabetes

Other conditions that symptoms may be confused with:

Some symptoms of coeliac disease may be mistaken as irritable bowel syndrome or wheat intolerance. The symptoms can also be put down to stress or getting older.

In the past, people with coeliac disease were expected to be underweight. In fact, most people with the condition are a normal weight or even overweight.

It can take some time before an accurate diagnosis is made."

"There are specific blood tests used to diagnose coeliac disease. They look for antibodies that the body makes in response to eating gluten. Your GP will carry out a simple blood test to check for these antibodies.

The most accurate blood tests for coeliac disease are:

Tissue transglutaminase antibody (shortened to 'tTGA'wink

Endomysial antibody (shortened to 'EMA'wink

The test used depends on the laboratory performing the test – they may measure one of the antibodies, or sometimes both.

These tests can be carried out on adults and children.

It is important to continue eating gluten until you have had a blood test and gut biopsy."

"Irritable bowel syndrome:

Almost a quarter of people with coeliac disease had previously been told they had IBS or were treated for it before they were diagnosed with coeliac disease, according to recent research.

It is important that the NICE Guidelines are followed and that coeliac disease is screened for before a diagnosis of IBS is given."

PS I went through the SIBO stage too.....before I got a GP who listened to me and sent me for test!

I tried everything mentioned by others on here first...to no avail.. Do request the Coeliac test - you have nothing to lose Will - and maybe everything to gain. Good Luck!

16

You say you are in the north Will - Queen's Medical Centre in Nottingham diagnosed me within 10 minutes and followed up with the biopsy on my gut which confirmed Coeliac disease - I was also followed up by by LGI in Leeds....just in case you are near either of these places and can get a referral to one of them ..soon.

17

Coeliac Org UK: (latest News)

"Finding the half a million people living without coeliac disease diagnosis:

Following years of lobbying policy makers and healthcare professionals for improved diagnosis of coeliac disease, in 2009 the National Institute for Health Care Excellence (NICE) published guidelines which set out how healthcare professionals should diagnose coeliac disease. That laid the foundation for further work and over the coming months we are working with NICE to revise these guidelines. These will then form the basis for the development of a Quality Standard for coeliac disease which will drive and measure improvements within the care of those with coeliac disease.

Once these new guidelines are published, we will want to see a dramatic change in the diagnosis rate for coeliac disease. We will continue to work with healthcare professionals to raise awareness and Members will be crucial in encouraging and engaging friends and family that display symptoms of coeliac disease to get checked out."

Check the website for more News in due course!