Daughter with suspected FM

[maryanno]

Hi I'm a mum of a 20 year old daughter who has had chronic stomach issues for about three or four years. It's clear something that she's eating is causing the problem and we have experimented with wheat free and dairy free diets but to no avail! We have seen a gastroenterologist and blood tests and an ultrasound test have ruled out coeliac disease. We are left with a vague diagnosis of IBS.
Danya's symptoms currently are extreme bloating and cramping pain and constipation but previously she had chronic diarrhoea. I have been trying to research what it is that may be going on with her and came across FM as a possible cause since although I suspect she may have both wheat and dairy intolerances, cutting those out did not give her any noticeable relief!
We live in London and I wondered if anyone knows of a gastroenterologist who has experience of FM or where we might go to get a breath test done to see if this is what the problem is?
I really feel for all you mums of infants and toddlers having to go through this since I find it difficult enough to watch my poor big baby suffer with it!

[Charlie Arnold]

Hi Maryanno,
welcome to the board, I hope we can help you out with your daughter. When you have time, fill us in a little more on when it started, what may have triggered it eg a virus, change of life etc. as that may give us some more clues. The good news if it is a later onset FM then the chances are by eliminating triggers for a while should considerably improve things and you may then find she can tolerate alot more again. However there are still other things that may be going on so we will answer what we can to help steer in the right direction.

I have done a quick google and found a leaflet about the hydrogen breath test in Chelsea and Westminster hospital so it may be worth contacting them, many patients don't know that they can request which hospital treats them these days so have a word with her gp. My daughter had it done at Epsom, Queen Mary Childrens Hospital which is the paediatric section of St Helier hospital so they have the facilities but whether they test adults there I don't know.

www.chelwest.nhs.uk/your-visit/leaflets/med/Endoscopy-Hydrogen-Breath-Test.pdf

One thing that several have queried is how reactive you have to be to get a correct positive answer and from my experience personally I feel you do have to be reactive to get a clear answer so if you can get it done soon it may be better not to alter her diet until you have had the test done.

Anyway, all the best, keep us posted. If your daughter does get a diagnosis then maybe if she feels able she could post how she feels through the process of treating it as the biggest problem we have as mothers is we don't feel it ourselves so can only guess from reading the symptoms. That would be a great help to the board.

Please do feel free to ask anything, no matter how trivial you feel it may be, we are here to help.

Charlie

[maryanno]

Thanks so much! Really good point about the reactivity. I will get her an appointment with her GP for her return from the US she's currently a camp counsellor at a summer camp and from what she tells me her diet there is just the worst! Highly sugared everything!

As to when her symptoms started well I suppose she always had a sensitive stomach as a young child ie to pasta and milky stuff but by no means as acute as some the cases of little ones on your forum thank goodness. She did suffer a couple of bouts severe gastroenteritis, the latest of which was on her travels in Thailand earlier this year and one of the thoughts that the consultant came up with is that after such a bout you can be left with IBS and extreme sensitivity. Also about 2 years ago she had quite a traumatic time emotionally over a boyfriend and once she finished with him her symptoms improved. I do think there may be a strong emotional component to this condition but hard to know.

As a matter of interest to you all I did take her to a cranial osteopath with whom she had a couple of treatments and was feeling significantly better. Unfortunately she was unable to carry on treatments because she was going off to camp where the condition has got bad again! The reason I took her to the cranial osteopath was because he was someone who specialised in treating babies with colic and is quite successful with it. So I will be returning there with her and will let you know how that goes. One of the things he explained was that physical or emotional traumas can stay in the bodies system and be triggers again many years on. Birth can often be a traumatic event hence colic and why treatment by a cranial osteopath could be helpful in tandem with diet adjustment. maybe this would be of help to some of you? Anyway will keep you posted! It's good to know that there is this forum to discuss all this stuff with. Thanks

[Charlie Arnold]

Sorry Maryanno, I missed this reply for some reason,

yes, the american diet is very high in sugars, and alot of hidden ones too so i hope she copes OK out there. Big detox needed when she gets back.
The gastroenteritis may well have been a trigger coupled with emotional traumas could affect the bowel and the absorption process so hopefully things will improve once she can rebalance her system. Maybe the change in life at the camp doing something she enjoys will help, then a steady elimination diet to clear her system out for a while followed by a slow, and I mean slow reintroduction of foods, may well help. She will probably always had a sensative system and after any major bug may find she needs to go back to a starter diet for a while to recharge.

Its interesting you have found cranial osteopathy helps, that is great news. I am actually a fully qualified Osteopath and our college also included cranial osteopathy as part of our training. I spent years treating babies in my clinic for colic, diarhea, sleeping problems etc. But very frustratingly it hasn't helped Megan... That is with me and a very experienced colleague treating her (because you are too emotionally attached, but your colleague may have missed something.......) But certainly for treating bowel inflammation and its knock on effects osteopathy, or acupuncture can be very helpful.

[maryanno]

So it's been a while. My daughter has now been following the low Fodmaps diet for almost two months now and it has seemed to help her chronic bloating. We still haven't discovered exactly what causes the bloating and constipation but she's feeling better. We're going to start reintroducing the forbidden foods gradually to see what she can tolerate. The diet's not bad but she gets quite anxious about eating out since you can't guarantee that the excluded foods aren't present. We'll have to see how it all goes but so far so good.

[Charlie Arnold]

Hi Maryanno, good to hear your daughter is finding the diet changes help. I hope she enjoyed herself in America and found it a great experience.

As for the diet, if she is finding it is helping to be honest I would delay trying forbidden foods if possible for longer as the system takes many many months to heal, especially if it is an absorptive problem with the villi which it may well be with your daughter. Did you manage to find anywhere to get the breath test done as that may give you a clearer answer as to whether the fodmap diet is the best answer.

Another idea is to try an enzyme replacer I have been giving Megs now for several months. When I started this board it was because we were told she had FM and the low fodmap diet was the answer but I was really unsure as alot of the foods on it were ones she really reacted to. Since then I have done more research and eliminations and Megs problem is more along the lines of sucrose and starch absorption and someone passed on to me some enzymes to try which help to break these down. Within a few days I noticed a massive difference and if she doesn't have them she starts getting gassy and tummy pains within an hour of the meal. so it may be something else for your daughter to look into as it may mean she can then eat more foods as long as she takes them too. Being an adult she can work out much better for herself how she feels on them. They are called Polyzyme Forte and you can get them from Vanderbell. www.health4youonline.com/PBSCProduct.asp?ItmID=12237428.

You take them with the meal and they help replace the sucrase and starch enzymes that she may not be producing enough of. If she does try them stick to the low fodmap diet first with them, then gradually increase the variety and see if they help. She will know within a few days. There is nothing in them that I can see that would be contraindicated with anything else.

I think many people need to start on the basics of a low sugar diet and then alter it bit by bit to suit their own system and this does take a long time of trial and error but she will get there in the end. Down the line she may have days when she can let her hair down and eat "normal" food as the bowel improves as long as she then has a couple of careful days and this may help when she eats out. But for now she needs to get used to planning ahead, checking the menu and maybe sticking to what suits. Meg tends to always have plain sausages and chips wherever we go, or if she goes to friends she takes her own. It takes a long time to cope with though socially, your daughter needs to feel very positive that it is worth it to feel better and that makes it easier then.

Another good place to eat is Pizza Express, they do gluten free pizza and will carefully do the topping so that Meg just has ham and cheese on hers.

Anyway I hope this helps, well done to your daughter for giving it a go, any questions do feel free to ask.

[maryanno]

Thanks Charlie sound advice about waiting longer to try forbidden foods. Interestingly the dietician we saw didn't seem to rate the breath test and wasn't very encouraging about it at all! We will try the enzymes too! Also a homeopath friend has told me about Activated Charcoal capsules as helping with IBS and gas and bloating. So we may give this a go too. Thanks for the eating out advice too. We had already discovered Pizza Express but eating out is a challenge and a cause of anxiety. So we'll carry on and see how things go it is definitely a long haul!
But thanks for all the advice and support! I'll let you know how she gets on!