My daughter 10 has had ongoing stomach pain for 16 months now. It started as an intermittent pain happening every 6-8 weeks but fast forward to now it’s daily and gets severe on occasions. She has been admitted twice with suspected appendicitis as the pain gets that bad she can’t move. It’s a sharp, burning pain and she says it’s like someone is squeezing her. She is unable to bend down and has to squat down to pick things up, she’s pale, in pain when eating/drinking and can’t stand for long periods due to the pain. She’s always clutching her stomach. My daughter has very very loose stools sometimes up to 5 times per day snd at other times explosive diarrhoea. It’s rare for her to have a normal stool these days.
I have been back and forth to GP and I am at the end of my tether now because i can’t do anything to help her. It’s breaking my heart! She’s missed so much school. She is taking omeprazole and mebeverine both of which do nothing. She has been referred to gastro paediatrician but the wait is up to a year. Im going to call GP tomorrow to get it expedited because how can she carry on like this? Recent blood tests have come back and are classed as normal. Anyone been through similar? Im worried sick
I will attach the blood results. Any help would be great. Thanks so much.
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Both folic and b12 are borderline. The medication she is on doesn't do her any favours either. Omeprazole blocks stomach acid, your need acid to break down food for vital nutrients such as b12. So sad that a child is suffering like this.Read as much as you can especially responses from sleepy bunny
I am sorry to hear that your daughter is suffering.
My eyesight is a bit dodgy so I can't read the actual results for B12, folate etc.
Perhaps you could type them out separately.
I am not medically trained just someone who suffered from unrecognised B12 deficiency for years.
Have you got results for ferritin (or other iron tests)?
Some of the results on Full Blood Count (FBC) made me wonder if it was possible her iron levels were low or borderline.
The results for MCH (Mean Cellular Haemaglobin), MCHC (Mean Cell Haemaglobin Concentration) seem close to bottom of the reference range and there are other results that are not far off the bottom of the range.
Trying to understand blood test results can become very complicated in someone with B12, folate and iron deficiency.
B12 and folate deficiency can lead to enlarged red blood cells (macrocytosis).
Iron deficiency can lead to smaller red blood cells (microcytosis).
Low iron can mask the effects of low B12/low folate on red blood cells and vice versa.
Some of the links I post may have details that could be upsetting so you may want to read through this with someone else.
Some links may have info that is relevant to adults but not to children.
I suggest you take a few days to sift through all it all.
Parents
Parents of children with suspected B12 deficiency are not always listened to.
"In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment(over 40 pages).
In a person with both folate and B12 deficiency, B12 treatment would usually be started first.
Treating folate deficiency without treating a co-existing B12 deficiency can lead to neurological problems.
Check any guidelines I mention are relevant to children, some may be aimed at adults only.
"Yes she had a coeliac test back when it first started happening. Was negative. Thyroid was also checked back then too and was all"
I suggest you check her medical records to see what tests were done for coeliac disease and what the actual results were.
Check to see if both the following were done
1) tTG IgA which checks for a particular antibody to gluten.
2) Total IgA which checks which patients have IgA deficiency.
IgA is an immunoglobulin.
When she was tested for the first time, did her doctors advise to get her to eat plenty of gluten in more than one meal per day for several weeks prior to being tested?
This is to ensure that there are plenty of antibodies to gluten in the blood.
A patient with coeliac disease may get a negative result in the tTG IgA test if
1) They have IgA deficiency.
2) they were not eating enough gluten prior to blood being taken for tests.
There are alternative tests for coeliac disease for people who have IgA deficiency.
See NICE guidelines and Coeliac UK website.
I suggest you read the NICE guidelines on Coeliac disease thoroughly to check her doctors followed the recommended diagnostic procedure. Some don't.
The calprotectin is high. Above 50 is a cause for concern. It means she has a high level of bad bacteria in her gut. The cause of that needs to be investigated by a gastroenterologist.
There may also be local guidelines for neurological referrals.
Local B12 deficiency guidelines
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
A CCG/Health Board may have separate guidelines for children and adults.
If you want to know why I suggest finding the local guidelines for your part of UK, see blog post below. I hope you are not in this area.
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place in case needed in future.
I am a celiac. I used to have similar symptoms. Maybe you could try and cut out gluten and see what happens. And maybe dairy as well as most celiacs also have a dairy allergy. If the diet is helping her you will notice an improvement within a couple of weeks.
I can understand your worry. As a mum, now a grandma and having had tummy problems all my life.
The main thing is to go ahead with the tests getting as much help as you can. I went through them all and nothing was found. In the end I decided to work it out for myself.
Children don't want a restricted diet but it is worth a try.
Thank you! I have initially thought this was a possibility.. She had a fecal calprotectin test end of Feb which was 193 and have just repeated this so awaiting results. She also has a coeliac blood test on 4th April. Think I will trial a gluten free diet after this as seems as though we are in for a long wait to see the paediatrician.
I would try an get her to have a few red grapes with or before eating. They contain both folic acid and acidAnd see if they help..... it may take a little time to take effect or another option is oranges/orange juice before food. Little and often !
Ehlers Danlos syndromes are a group of rare conditions that affect connective tissue in the body. There can be digestive issues and some EDS patients can develop B12 deficiency due to gut issues.
There is a UK charity called Ehlers Danlos Support UK.
I can't believe the worry you are going through! Mind boggling.
She definitely needs to see a gastroenterologist ASAP.
Definitely press the Dr again and again until you get somewhere - they can ask for urgent consultations so don't take any nonsense. Be prepared to go elsewhere.
When she ends up back in hospital next time, if it is before she is seen, ask them for more investigations there and then or a referral. Give them an "either/or" ultimatum.
I do feel for the poor souls running the hospitals because everyone (GPs especially) is dumping patients on them which spends their budgets so they are reluctant to deal with people because it looks bad on their department, but sometimes you can use this to get leverage to get a referral instead. "We need to make progress on this - are you going to investigate now or can you refer us to someone who will look into this urgently, please?" If you don't get anywhere, don't be afraid to stop and politely say, "No, we need to make progress on this, are you..."
I don't know what could be wrong - I am no expert in GI problems - but I have chronic pancreatitis and similar sorts of symptoms and hear of others with various similar intestinal tract issues through the groups I have joined. It might be worth joining the Pancreatitis Facebook group(s) and asking there because they are really clued up on most things GI tract, besides CP.
If she has got something like CP it would also explain the fact that the drugs do nothing and her vitamin deficiencies because if she doesn't digest her food her body can't get the nutrients from it.
Basically with CP (chronic pancreatitis) you don't produce the enzymes that digest your food so it goes straight through without doing you any good.
You could ask your Dr for a "Fecal Elastase" test to see if this might be the problem. They are a fairly cheap test so you might be able to get that done. If (s)he argues you can say "we need to get something done and need to start somewhere. What else are you going to do?"
Questions to them are more effective than statements...
If you say "X needs to be done" then they can argue against you, come up with excuses, etc.
If you ask, "what are you going to do to help us?" it puts them on the spot to find solutions because they are unlikely to want to say "nothing".
Don't be afraid to say that you've tried the omeprazole, etc, and it hasn't helped (and has probably just made the deficiencies worse) so you need some other action now. By trying those drugs it rules out whatever they may have helped and now it's time to look for other potential diagnoses. "What else do they suggest?"
"What are they going to do to remedy the low B12 and folate situation to prevent a growing child from getting nerve damage while you are waiting to see the gastroenterologist?
Don't be afraid of putting the ball in their court to solve this problem.
Be prepared to ask, in a kind, nice way, "and how is this going to help - please talk it through with me" and wait to listen for their answer. You can always say "but I'm afraid I still don't understand how that is going to help, please explain again".
I think it can be useful to put the questions in a letter as harder to ignore and it should get filed with her medical notes especially if you include a request to file letter with her medical notes.
How heartbreaking for you. Like Sleepybunny the blood results make me think low iron and folate, though I would stress I'm not medically trained. I had both iron and b12 anaemia for many years and my symptoms were similar. I too reacted badly to omeprazole and similar but unfortunately had to wait until I was extremely unwell to get a diagnosis. Further investigations into her iron levels would be useful to see if she is heading towards anaemia and it shouldn't be underestimated how unwell iron, b12 and folate deficiencies can make you feel and the wide range of symptoms you can experience.
With such tummy troubles she won't be absorbing all the necessary nutrients from her food therefore diet is crucial and needs very careful consideration. Try to monitor what makes her feel worse or what she tolerates well whilst being mindful to reduce irritants to a delicate stomach like fast food etc and increasing folate, b12 and iron rich food. Iron tablets can come with their own problems and I found Spatone to be excellent in helping with iron deficiency and very gentle on the stomach. Once my deficiencies were addressed my worst symptoms disappeared very quickly.
The stress and exhaustion associated with these debilitating symptoms also take their toll. It's therefore important to be gentle on yourself - something you really have to work at I know but important for your wellbeing. Meditation can help enormously - it won't solve the deficiencies but it may help cope with some of the stomach problems - no side effects either!
Learn as much as you can and take one step at a time so you know what you have changed and can monitor the results. Try not to feel overwhelmed and remember to breathe. You have some medical results to build on and work with which is crucial to understanding what is going on. I wish you both well.
I've just noticed that her red blood cell count is almost at the top of the range.
What have her doctors said about this?
Sometimes its helpful to compare new blood test results with older results as results that are increasing or decreasing over time may be significant even if still within range.
There are health conditions that can lead to an above range result for Red Blood Cell Count.
I'm aware that I have bombarded you with information.
There is probably more I could post but don't want to overload you. Let me know if you want more info.
In terms of appendix, don't give up too easily as it must be ruled out. My child had terrible pain, was diagnosed with appendicitis by the GP but in hospital they decided it was something else called 'mesenteric adenitis'. He seemed to recover, but kept having episodes of repeated pain and discomfort over the next year, including thinking his waistband was too tight, (which I think was 'grumbling appendix' which many doctors don't accept as possible - but I think low level chronic infection which flares up and down is very possible and also isn't readily picked up on the available blood tests). A year later again he had an episode of severe intractable pain, wore off, then another, went to GP, again GP diagnosed appendicitis, rushed to hospital, they kept him in with a sort of 'watch and wait' approach, again the blood tests didn't show infection but he threw up after eating anything. Eventually they decided to operate to see what was going on (with keyhole surgery) and of course they found a highly infected appendix in the process of bursting. I think it might be possible to diagnose an inflamed appendix with ultrasound (I found out later), so an abdominal ultrasound would probably be a good idea.
Are there signs of malabsorption? A number of people have pancreatic issues alongside anemia.
I have exocrine pancreatic insufficiency and take enzymes with my food and will need to for ever. I also find it easier to eat small amounts at a time. A fecal elastase test can be requested by your gp. My most recent test was done by post - they sent out the kit and was simple to do.
I know it is frightening, but if it is PA or EPI, it can be treated fairly effectively. The medications do not have side effects and my quality of life has improved dramatically since taking b12 injections and enzymes.
Omeprazole is not great to be taking - particularly if you arent sure why. PA reduces acidity too.
I was 11 when I had similar symptoms as your daughter fast forward several years I was eventually diagnosed with Chrons disease worth having a look to see if her symptoms closely match this
You have been given plenty of sound advice and links from some lovely folk here. All I can offer is my sympathy - you both are going through a nightmarish time.
Taking Omeprazole long-term and regularly can cause B12 deficiency problems, so if it has not been effective at all and you feel that there has been a sufficiently long trial, I would stop using it.
What was the reason the GP gave initially for prescribing it pre-diagnosis, I wonder ?
Folate and ferritin both seem low. Direction of travel is as important as latest results. There are other levels here that look close to becoming out of normal ranges. What they all add up to I have no more idea than you. Coeliac disease, Crohn's, appendicitis, thyroid, exocrine pancreatic insufficiency, migraine.... could be any one of these but a gastroenterologist would be a good start. Given the increasing severity of her symptoms, anything unusual (high/low) should be looked at by a medical professional. Keep copies of any results.
I originally had B12 deficiency (just under range), low ferritin and folate, lowish vitamin D - nothing dramatic there- and initially went to the GP with fatigue, lower back/left side hip/groin pain, daily diarrhoea.
I was holding onto the bus-stop sign for support going to work each day as unable to stand up straight by then. What was I thinking ?
Whatever this is, it could take a while to sort out, and feel better. You shouldn't have to work out what is wrong with your daughter - there are people who can refer her to the right consultant. A gastroenterologist would be a good start.
Omeprazole is a PPI drug. PPI stands for Proton Pump Inhibitor.
Long term use of PPI drugs has been associated with B12 deficiency in some studies.
Search online for "PPI B12 deficiency" for more info.
Has she been checked for HPylori ?I’ve had this a number of times myself but the first time I ever came across it was with my then 11 year old daughter.(44 now)
She loved to go abroad with the school on trips and we always scrimped and saved so she could go.
One trip she came back from with a tummy bug we thought, as she’d a lot of diahorrea and what she described as burning acid so took her to gp and he prescribed antacids and we just comforted her as best we could when she was in pain.
Fast forward 6-8 months of this and a neighbour said to me I dont mean to be nosy but has your daughter got anorexia, it gave us all a jolt when we realised just how much weight she was losing,when you are with someone day in day out I don’t think it’s so obvious.
I changed gps took her to a new gp in the same practice and straight away he got her booked into hospital for what we called it then a camera tube,we didn't know about endoscopies or gastroscopes.
Her test came back with HPylori diagnosis and she got the triple therapy treatment and recovered very quickly,no more need for antacids or dietary restriction she’s now a mum with a gang of kids herself.
I had to fight tooth and nail to get a diagnosis myself of hpylori the first time they just seem to palm everyone off with antacid or indigestion remedies but don’t consider it can be something as simple as this,it effects over 60% of the population apparently,some are symptomatic some are not and can live with it in the gut
I’d chase them for a test for that if I were you,if it’s not great no harm done ,but if it is it’s easily treated rather than her suffer.
Best of luck and give her a big hug from me
Triple therapy is just two different antibiotics for two weeks and a ppi to help heal the tummy lining.
i am no doc,you need agastro specialist.she suffers from loose stool too often.she may be dehydrated by now, go private if deso;erado.your gp is a twat no doubt about that, where has he/she referred you by now on a psycho ward, clearly she is in pain, stomach, diarreha another thing, but all connected...try your gp first, if not good go private,if cannot afford search 2-3 opinion. by a hosp, state doc...do sthg
A gastroenterologist here in France told me about these lists of foods which have an effect on digestion . I had problems for years including frequent diarrhea and painful colic. I also discovered a B12 deficiency for which I get weekly injections as I cannot absorb B12 through my stomach. I cannot eat any foods with gluten, have to go easy on dairy, use lactose free milk and avoid onions and garlic and most cabbage type veg as they cause bloating and discomfort.
At first I thought OMG I can't eat anything anymore! But I have adapted and after a short time was colic pain free. Take a look at the list and definitely try gluten free. you can still eat well and have a healthy diet , you just have to shop carefully.
Wow honestly am overwhelmed by all the advice and help you have all given to us. Thank you to each and everyone of you for your help.
We have given the GP a stool test to check her calprotectin level. At the end of Feb it was 193 and they said if it is still raised they will contact the gastro team and update them.
My daughter has been referred to a gastro paediatrician but not on an urgent basis and due to Covid, the hospital have said it’s up to a year wait!
My daughter has been on omeprazole for a few months as the GP said it could be gastritis but it hasn’t helped at all so I have stopped her taking that now.
Pain is still bad and she’s barely eating as it hurts to much. Even drinking water causes her stomach to hurt, she describes it as a sharp, burning squeezing pain.
Another thing that happens a lot to her which causes her such embarrassment is when she passes wind she can also pass some diarrhoea.
You have my sympathies, it's bad enough being an adult with all these problems. It is so so much worse when it is a child and being her mum you feel so helpless in knowing how to help her.
Many a time I have had the same problem, wind and diarrhoea, it was a case of making sure I was in easy reach of the toilet. So embarrassing as you say!
One doctor recommended Flat Coke .... has to be flat, you could try this.
At the moment the NHS is not fit for purpose, they should be addressing this far far quicker than they are.
Other than the above all I can advice is an elimination diet and keep a diary.
I am so sorry for you and hope you find a solution soon,
Just to let you know I had to write to my M.P. to get urgent treatment from many different specialists.
I'm not medically trained but I think it's possible that the drop is significant.
Could be worth mentioning the drop in B12 and folate in a letter to GP.
You could also ask if these blood tests could be repeated in a few months (to see if there has been a further drop).
You might want to point out to GP in writing any symptoms your daughter has that are consistent with B12 deficiency (and folate deficiency). See symptoms lists in my first post.
If she has symptoms consistent with B12 deficiency (and folate deficiency) you could maybe include one or more of the quotes below in a letter to GP.
1) from BSH Cobalamin and Folate guidelines
" in the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to prevent neurological impairment"
If the clinical features suggest deficiency then it is important to treat patients to avoid neurological impairment even if there may be discordance between the results and clinical features
3) from NHS B12 deficiency article
"But some people can have problems with their normal levels of these vitamins"
4) from NICE CKS B12 deficiency and Folate deficiency
"Note: clinical features of vitamin B12 deficiency can occur without anaemia and without low serum levels of vitamin B12."
See Point 5 in letter writing link below which is about people who are symptomatic for B12 deficiency with a normal range serum B12 result.
Has your GP considered the possibility of Functional B12 deficiency?
This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so the person develops symptoms of B12 deficiency.
Functional b12 deficiency is mentioned in the NHS article about B12 deficiency below.
Tests such as MMA, Homocysteine and Active B12 (also known as Holotranscobalamin/HoloTC) may be helpful in diagnosing functional B12 deficiency.
Has your GP ordered these or referred her to a specialist who can order them.
"GP said because it’s in range it’s normal and not to worry about the drop"
Some GPs need a lot of nudging when it comes to B12 deficiency.
See Misconceptions links in one of my other replies.
Be prepared for GP/parent of patient relationship to come under a lot of strain if you are being assertive and asking questions. I really hope you have another adult to support you.
"I didn’t get a cause as to why, she just said she thinks gastritis"
I think what causes the gastritis can affect the treatment given so to my mind the GP or other doctors should be trying to find out the cause.
I really think it could be helpful to talk to PAS (Pernicious Anaemia Society) and B12 Deficiency Info.
PAS have in the past sometimes talked to patient's GPs. I'm not sure they still do this but you could ask. You would probably need to be a PAS member to access this type of help.
I'm really sorry but I can't make out the numbers in the results you've posted in reply below.
Have you had any luck tracking down the local guidelines on management of B12 deficiency for your CCG (Clinical Commissioning Board)?
Her GP is likely to use these for guidance even if they differ from guidance in BSH, NICE and BNF links.
It's worth knowing what you're up against locally, some local guidelines are unhelpful.
There may be local guidelines for your CCG/Health Board/Hospital trust on when children and adults should be referred to a gastro -enterologist. If you can't find these online then you could try submitting a FOI (Freedom of Information) request to CCG asking for local guidelines on referrals to gastro enterologist for children.
If you have the resources, perhaps you could talk to GP about paying for a referral to a gastro enterologist which hopefully would speed things up.
Link below outlines when patients with B12 deficiency should be referred to a haematologist and a gastro enterologist.
My understanding of UK guidance on B12 deficiency is that a patient with the symptoms of B12 deficiency should be treated even if serum (total) B12 is within normal range.
If she's symptomatic for B12 deficiency and they are reluctant to treat her, you could ask GP to explain what happens to people whose B12 deficiency is not treated.
There is information on PAS website and B12 Deficiency Info website about neurological consequences of B12 deficiency.
Thank you sleepybunny. Thank you so much for all the information.
My daughter is off school again today after a severe flare up last night. Poor thing was in agony and it hurt her to move, spoke to GP
Again this morning and they are still reluctant to do anything without the latest results from her calprotectin test. Said to call back Thursday or Friday. They have prescribed pain meds to help her but that’s about it. She’s not eaten anything at all today and is to scared to because of the pain!
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