Can you be lactose intolerant but not suffer from diarrhea?

[chloesmumtoo]

I am not sure that my dd will have lactose intolerance but getting pretty desperate for ideas. I am not sure if her symptoms fit so please tell me if I am totally barking up the wrong tree. Just clutching at straws really. She has suffered tummy problems from dot (gas/constipation/occassional cramps) but has many allergies. Over the years she ended up on movocol to keep her regular which seems to work. So diarrhea is not a symptom. However, stomach pains have become too constant recently. She has had problems/stomach cramping prior too and all through the Easter hols, suffering with various pains. Worst in the mornings -groaning and hardly able to get up/get ready for school. Eases back most days at school but pain stays in milder form, hurts at night to the extent of heat packs every evening in bed. Some nights, up until midnight in discomfort, other nights not as bad. But it is always hurting. She is 12. This is constant. Been doctors tues, urine test fine. Blood test today so will be awaiting results for cealiac, anemia, liver etc. When in the worst pain she has felt shaky, sick and had occassional reflux. Any ideas? Should I be experimenting with low lactose milk products? Any tips if I try it out for a couple days? Where to buy? Is it safe for children with Nut allergy? Or do you think this is not lactose intolerance? Any advise welcome..........

[JiltedJohnsJulie]

Your poor dd, you must be so worried. Not really that up on lactose intolerance sorry, I suffer with cows milk protein intolerance.

When you say she has many allergies, has she been allergy tested?

If you want to remove lactose from her diet for a few days, would it be easier to go dairy free rather than low lactose? And I think it is possible to have an intolerance of milk without diarrhoea.

[chloesmumtoo]

yeah it is a worry. She has many allergies anaphylactic to peanuts, many positive skin prick tests to problems with fruits and veg. Possible oral allergy syndrome. Ibruprofen allergy, dustmite, pollen, asthma, eczema. I don't know really if dairy free is easier or not. Very restricted on food choices as it is. I just found the lacofree milks, spreads ect and because I cook a lot for her myself, thought it may be easier to just substitute dairy. But it takes time to realize what a different allergy involves! Thanks jiltedjohnsjulie for your reply. She had a choc milk drink for supper and burps like anything. Certainly keeping me on my toes. She had a skin prick test to milk at 4yrs but was negative but obviously things can change over time. Certainly feel tempted on seeing if anything improves.....

[JiltedJohnsJulie]

It must be so hard. If you cook for her could you use pure spread and oat milk?

[MrsSpencerReid]

I am lactose intolerant and I get symptoms when I have had lactose containing foods rather that in a daily pattern if that makes sense?! So if I have a dairy free day I'm fine, but if I have a latte I'll get symptoms shortly after, not saying everyone is the same, that's just my experience

[chloesmumtoo]

I have not really looked at the pure spreads Jiltedjohnsjulie but just googled some online. I notice some are soya based which I would worry about largely increasing soya in her diet as linked to peanuts (legume), although she has been ok up to now with soya. But there are some pure spreads saying soya free too so will have a proper look out in the supermarket today for future reference. Obviously we are restricted by any may containg nut trace warnings as well on products. She is also allergic to corn(but manages a little corn flour occassionally in some items) Oat milk should be ok as she is ok with oats. However I am still tempted to experiment with lactofree milk first because it wont have an affect on her dietry requirments and is still the same but just lactose free. Because dd is so reactive, anything at all new could rock the boat causing even more confusion! But I will certainly consider going dairy free if all fails, with a little more researching on products. Does anyone know if I was to go out today and buy lactofree milk and spread etc how soon would we notice the benefits if dd did turn out to be lactose intolerant? Would it be quite immediate?

[JiltedJohnsJulie]

How about this one?

Don't know on the length of time sorry. Maybe CMPI is different but I'd say within 2 weeks of going DF I felt totally different.

[chloesmumtoo]

Thats the exact one we picked up after you mentioning the Pure spreads!! Have bought a couple tubs for the fridge in preparation for my cooking spree this week. So thanks for your advise. Dd tried the lactofree milk this morning too and liked it, so thats good news. I don't know whether to cross my fingers a low lactose diet works or not. I don't want it to be lactose intolerance but not at all keen for it to be dairy intolerance or celiac . But I atleast feel better knowing we are doing something. Will experiement with low lactose and if all fails we will have to go total dairy free.

[Superworm]

I was lactose intolerant without diarrhoea before being diagnosed with coeliac disease. The lactose free products were great and I felt better immediately. Bloating, nausea and cramps were all much improved.

[JiltedJohnsJulie]

That's good news

[chloesmumtoo]

Disaster day today. More cramps so bad dd off school again and still groaning in agony now. Re took to doctors, saw nurse though. Given mebeverine liquid med now to stop stomach cramping. We feel worn to the ground. All other blood results back are looking fine but the celiac one is still not ready so we got to wait longer for that one.

[JiltedJohnsJulie]

No advice but lots of sympathy

[expatinscotland]

Yes! I am and it gives me vile nausea and vomiting.

[freefrommum]

Symptoms sound very similar to my DD before she was diagnosed as coeliac. She would be bent over in pain on a daily basis but no diarrohea or constipation just occasional heartburn and reflux. She also had dry eyes and cracks in the corners of her mouth. All her symptoms cleared up once she was formally diagnosed and able to start the gluten free diet. If your DD's coeliac result comes back negative, I would still push for a referral to gastro specialist to try to find out what's going on and don't attempt a gluten free diet until she's seen a specialist just in case they want to do further tests. Good luck.

[chloesmumtoo]

Thanks all. She still rolling, groaning. Worst day today. Even on the mebeverine it has done nought. Getting desperate by the minute. freefrommum thats very interesting. Do you mean dry skin around eyes or no tears? Dd has very dry skin around her eyes at times even lids, cracking mouth lately too in corners when she opens mouth. Thankyou about gastro specialist info, my doctors don't seem that good, may have to find a better surgery at this rate. She has been seeing nurse practitioner each time is that good or bad? I was just saying to my dp we are alone with it and going to have to do things ourselves. Start with the low lactose diet and then possibly move on to dairy free and failing that no gluten. I will bear in mind that info about not going gluten free yet.

[freefrommum]

Have a look at the Coeliac UK website and maybe give their helpline a call as they're very helpful. Strongly advise against going gf until you've totally ruled out coeliac disease as reintroduction is beyond awful.

Re: dry eyes she had no tears so had to have artificial ones on prescription for a while but skin around eyes was also dry plus repeated yeast infections in corners of mouth.

[chloesmumtoo]

Dd home from school still. In too much discomfort. Getting her up early everyday hoping to send her in, bag packed but no, too bad. I have been on some websites searching and sure I have been on coelic uk already will go on there again. Googled everything possible! I just don't know what to think, or what it is doing it. Thanks for advice freefrommum. The nurse said her other bloods were all fine, no anemia, no inflamatory markers or something- she said it ruled out a lot of serious things? But she would ring me about celiac if it came through +. Two bowel movements yesterday, still soft so not constipated. Gas, burping and still pain. she says its a pain above belly button just inline with the bottom of the ribs at the moment. intense dulling intense again. Mebeverene not seeming to do anything.

[chloesmumtoo]

freefrommum, one worrying question? If...... at the worse, she is ceolic or wheat sensitive, my main concern is ....do all the replacement foods/ingredients carry nut trace, may contain nut warnings?

[momb]

My symptoms (wheat protein not gluten allergy) are almost identical to your daughters. I ended up with a oesophageal tear and on a very restricted diet/lots of meds until that healed. It was only when I started eating normally again that we found the problem.
I agree with freefrom that you shouldn't try anything too special until they have done further tests but a couple of meat and potato/veg meals with gravy without wheat in over a couple of days isn't strictly keeping to a gluten free diet and may ease her discomfort a bit.

[wornoutmumof2]

Just an update really, dd been doctors twice again in desperation since last posting. Her coeliac blood test came back negative. Mebeverine upped to 3xdaily now. Dd missed all week of school last week bar two afternoons with the pain/doctors appointments! Now feel so cruel as every morning I send her off to school in pain as worried she will miss too much as its not going away. Seems like something we have to try to live with atm. I did go into school and discuss it all properly with them so they understand and the meds. Dd is coming home happier though, like it lifts her mood, rather than groaning all day at home depressed. Maybe more moving around is helping too. Difficult to push her though in the mornings as I have to be thick skinned to the discomfort she is in. Sunday she had such a tight sensation, she had not had before, and got shakey whilst out shopping. But I think all the Mebeverine slowed up her bowel movements. Bowels back on track now though. She got me up in the night 1.30am Monday - needing pain killer and itching frantic. Trying to keep a diary now, of foods and pains as much as I can. Tuesday was so traumatic sending her school I could have cried. She still feels sick, happened yesterday morning with the pain. Apparently she was feeling bad pain last lesson yesterday too but she tells no one, not even her friends. Last night she had headaches and reflux. Can't believe how it's not going away and the doctors just leave you in this state. One appointment I made in tears, and the other I went somewhere else, a drop in clinic, all was a total waste of time. The lactose free diet does not seem to be having any noticible effect either.

[freefrommum]

Push for a referral to a gastric specialist for further investigation.

[Superworm]

I agree, take her back and keep going back until they refer you.

The gold standard for coeliac diagnosis is biopsy. My bloods have always been negative which is common, especially if there are allergies, as they can cause IgA deficiencies. There's some info here on it

I had very similar symptoms and it took a year of monthly GP appointments to be referred. I changed surgeries after that and wish I had done it sooner. I have permanent neuropathy in my hands for the delay in diagnosis.

Have you spoken to coeliac uk?

[chloesmumtoo]

Forgot I messed with my name:) They just keep telling me I have to wait and see dd's consultant peaditrian (who she sees with allergies) which they are in contact with but will take until July, and thats been pushed through quicker. I questioned if he was the right one to deal with other problems eg like coeliac ect and they agreed. They just keep questioning dd about whether she likes school ect, its so annoying. She loves school! The doctor at the drop in centre turned around to her and said if you can't cope with this what about when you start your periods? Dd quite often looks fine when visiting the doctors but the pain flares at different times. That particular morning I was desperate as she had been rocking back and forth groaning. Got her in there and she seem ok again. They just don't understand. We have seen a nurse practitioner twice, doctor once at our own surgery and then another doctor at a drop in clinic to try somewhere different in desperation. They all do and say the same. The pain is still there every morning on waking but gets worse at certain times. Some days she comes home lifted and seems ok. But she still says it's there when you ask. Thanks for that link superworm, interesting.

[chloesmumtoo]

I may have to change surgery too, have been thinking about it. No superworm I have not spoken to coeliac uk. I have been on their site. Tend to feel a fraud phoning them, already feel like I am an over worrying mum.

[Superworm]

An allergist won't be an expert in coeliac disease. It is usually managed by a gastroenterologist and they would perform the endoscopy. They should know this really.

Do ring coeliac uk they are great for helping with diagnosis. They opened up their criteria a couple of years ago as so many people have difficulties getting diagnosed.

I know how you feel, I was made to feel like a hypochondriac. One GP even suggested I take up Pilates to help me relax. I think a lot of HCP make you feel neurotic if they don't know what's wrong.

[Superworm]

How is your DD doing?