12 year daughter suspected milk allergy advice needed!

[Jutey]

Hi,

I am new to the forum, just looking for a bit of advice really. My daughter has been suffering abdominal pain and acid reflux symptoms, she regurgitates 50+ times per day and vomits whilst having a bowel movement, her stomach is distended and looks like she is carrying a football up her jumper. currently she takes 20mg Omeprazole and 60mg Domperidone per day and has done since january this year.

In june this year she had an endoscopy which confirmed she had severe inflammation of the lower gullet and stomach. The GI also found esoniphilla in her blood which would confirm an allergic cause. We have been asked to follow a cow's milk free diet.

She has been on the diet for 5 days and whilst she has stopped vomitting all other symptoms are present. she has also had loose stools(not a great toppic I know) and now goes between 5-8 times a day is this normal? Has anyone else experienced similar symptoms? I know it could just be her body adjusting to the diet.

Thanks for listening, any suggestions comments welcome

Jutey

[Copper]

Welcome to the site.

I am sorry to hear that your daughter has been so ill. Rebecca, another member of this forum, knows about high eosoinophil counts. Hopefully she will see your post this weekend.

Increased numbers of eosinophils are produced to fight off allergic disease is an example I found on one site.

It can take a few weeks for dairy to clear the system. I guess if her eosinophil count is higher than it should be her body is going to take a while to settle down.

Are you sure that you have eliminated dairy from her diet. You would not believe how many foods contain dairy.

This list here on the forum is pretty comprehensive when it comes to alternative names for dairy.

http://www.dairyfreeuk.com/forum/showthread.php?t=738

If you need help with food alternatives do ask as we can probably help.

Please keep in touch and let us know how your daughter is getting on.

[Jutey]

Hi Copper,
Thanks for your reply,

We have been very careful to ensure dairy has been eliminated I found a fantastic website
http://kidshealth.org/teen/nutrition/diets/milk_allergy.html

They have a section for parents, kids & Teens and a handy cut and carry list of all products/chemical compounds etc that relate to cows milk. If we have been unsure of anything we havent taken the chance.

I know everyones body reacts differently so I wanted to check if anyone else had experienced similar problems. TBH I have pondered the thought that it may be the soya that is causing the loose stools etc I am really hoping that it is a milk allergy as our next step is a basic elemental diet, I was unsure exactly what this was so researched the internet and found it was a liquid diet. No problem following the diet at the moment as where we live the schools are on summer break. Unfortunately our appointment with the GI is the wk before school term starts and my daughter is starting at secondary school at is at the age where any attention is unwanted and embarrasing.

Hopefully we will have a diagnosis soon.

Thanks again for your reply
:)

[Copper]

Both I and my eldest daughter have developed an intolerance to soya :(. I did not replace all dairy with soya to try and avoid this problem. If I eat too much chocolate which contains soya lecithin I feel unwell and feel better once I have been to the toilet.

You could try and keep a food diary for your daughter. You need to write down everything she eats and drinks and how she feels generally. It will be interesting to see how much soya she has in her diet.

As it is a bit of a wait for your appointment you could experiment a bit. I would keep the food diary for at least two weeks just with dairy removed from her diet. If she is still feeling unwell I would try removing soya from her diet and keep a diary. At least you will have the diary as proof that your daughter has a problem with something else.

I can cope with small amounts of soya so I don't have anything made with soya flour or soya milk. I can cope with soya lecithin in small amounts.

The important thing here is not to remove more than one food at the same time as this will not help find out the problem foods. It sounds like your daughter has a problem with dairy but if she is not feeling much better in a couple of weeks, then there is something else causing a problem. The usual suspects are eggs, wheat and gluten but soya intolerance/allergy is on the increase too. If she has a lot of soya in her diet as dairy replacement you are right to suspect that soya could be the problem.

I have discovered all of my problem foods (there are quite a few) by realising that I felt sick after eating certain things. I took the suspect food out of my diet and was more or less instantly better. In fact I felt really well which I had not been feeling for a while.

I hope that you find out what her problem foods are soon. I agree that having these problems just as you are starting senior school is not good.

[rebecca c]

Hi

I think 2 weeks is early days and it is promising that she is already improving. I record higher eosinophil counts which were at there worst when I was using an inhaler with soya. I dont know what impact and relationship these white blood cell counts have with my IBS and asthma and runny nose and facial swellings except that they are all interlinked.

It takes me 6 weeks to clear dairy or soya reactions.

Just as Copper advises I suggest you do one thing at a time, give it at least 4 weeks but my preference is 6, then keep a food and symptom diary. If she is still suffering after this time I would try soya next and consider asking for a coeliac test as these things are interlinked. Dont take her off gluten until after she has been tested for coeliac disease.

medicines unfortunately often contain lactose so it is something to watch for but I also have problems with sweetners like sorbitol. I have to use a medicine which has lactose and so I take a fibre suppliment to counteract the problems.

[Jutey]

Hi copper/Rebecca,

We have been keeping a food diary since December 2009. We tried an elimination diet removing certain groups of food and reintroducing them after 2 weeks, nothing helped she did not get better and still vomitted regardless of what she ate. She was tested for coeliac disease when she was hospitalised in November 09 the results were negative. She is not asthmatic or suffers from hay fever which would explain the higher count of esoniphils in her blood.

Sorry I seem a bit scatty with symptoms etc but so much has happened in the last 8 months that I forget that I have oly gave a scaled down version of what actually has happened.

The only improvement in her symptoms is she no longer vomits whilst having a bowel movement I should have mentioned that she still vomits at other times. I am so proud of the way she deals with it and has acted maturely when asked to follow another diet. We will continue for the next few weeks and hopefully see an improvement.

We made homemade pancakes which she loves, the only thing she is missing is cheese as her favourite foods are macaroni and lasagne Any suggestions for a good dairy free cheese?

I will definitely be a regular visitor to the forum as you guys have made me feel welcome and have been helpful.

[Copper]

Hmm I don't know what else to suggest. I guess the food diary didn't show any kind of pattern then. If she is ill every day it must be something or things she eats most days.

I never found a dairy free hard cheese alternative that tasted really nice. Most are made using soya so I can't have them now. The slices made from rice tasted like plastic. It is a case of trying some and seeing what she thinks. There are some melting cheeses which would be good for cheese on toast. H & B health food shop here used to sell hard cheese alternatives and the melting cheese. I am obviously a bit out of touch now that I am soya intolerant.

You can get various spreadable soft cheese alternatives and I always liked those made by Tofutti. These were only ever in an independent health food shop down here. Tesco sell some other makes of soft cheese alternatives.

[rebecca c]

Obviously it could be something other than dairy (perhaps even an external allergen like paint toxins or dust), but as I say my reactions seem to be partly eosinophil based and it takes me six weeks to clear things from my system, that may explain why the two week cycle did not work.

I also have a sensitivity to salicylates which can only be reduced not eliminated, a good dietician may be able to help with this, they are in all fruit and veg but some more than others.

[Jutey]

Hi Rebecca,

After your post about the lactose in medication, I scrutinised the ingredients and found that both forms of medications contained lactose monohydrate. I cant believe I wasn't made aware of this by her doctor especially since he was so intent on her starting the DF diet as soon as possible.

Thank you so much for your the post, the fact that not only is there a possibilty that I have been poisioning her for the last 2 weeks I could have been adding to her allergy for the last 8 months.

Thanks again for your help
x

[Copper]

Hopefully if you can get her medication changed to something that does not contain lactose, your daughter will be much better soon.

Lactose is used a lot in tablets as it is a cheap filler. I always check everything I buy which is time consuming but worth it.

I am still shocked at the number of foods that contain lactose never mind dried skimmed milk powder.

As your daughter has a distended stomach I wonder if she has lactose intolerance as well as a possible allergy to something(s). One of the symptoms of lactose intolerance is a bloated stomach. The sufferer (and believe me we suffer) does not produce any or enough of the lactase enzyme which breaks down the lactose into two smaller sugars. The smaller sugars can be absorbed by the large intestine but the lactose is too big to be absorbed. The lactose sits in the system and starts to ferment, hence the bloated stomach. We get wind, stomach cramps, trips to the toilet eventually and in my case feeling or actually being sick. Once the lactose has been cleared from the system I feel much better instantly. If you keep topping up the lactose in your body I guess you will feel pretty ill most of the time.

[Jutey]

Well being new to the DF diet I am also the same things like Ham and BBQ crips still perplexes me. How can these contain milk lol

My daughter had her first sleepover last night since the new eating regime and she had a great time, just spoke to her on the phone. Said it was difficult when the girls brought out big bags of planets and munchies but she remembered I had packed df chocolate and a df sponge cake so she didn't feel like she was missing out.

[Copper]

I am pleased that she enjoyed her sleepover. Oh yes we don't have to eat boring food just because we can't have dairy.

[Jutey]

Hi guys,

Went to the doctor with Alex yesterday, I was advised to put her back on her medication as the lactose the meds contain is very minimal and the pros out weigh the cons. Going for an IGE bloods test today to see if they can identify what she is allergic to but will follow cow's milk free initially.

We finally have a name for her condition, it's strange but it some how makes me feel:lol2: more relaxed about it now that we have a name, is that weird? Well anway she has eosinophilic esophagitis the condion can mimick GERD and explains all her symptoms.

Going to the GI early next month so will hopefully get the IGE results then.

Tried tofutti vanilla and chocolate ice cream yesterday and loved it, I reluctantly tasted it myself and was impressed it was tasty!:lol2:

Hope you are all keeping well
Jutey
x

[Copper]

I can understand that knowing what it is makes you feel less stressed. At least somebody should be able to help now.

I have Googled it and see it is a delayed allergic reaction to food. All you need now is for somebody to find out what food/s cause the reaction.

Sticking with the dairy free diet for now is a good idea. It sounds like it will take time for her body to recover from the allergic reaction. You may not see an improvement on her dairy free diet for quite a while.

[rebecca c]

I think your decisions are sensible, the lactose in my medication makes me a bit bunged up is all. I think my asthma is getting worse for different reasons.

I think a diagnosis is a big help, I wish I had a diagnosis for my facial swellings.

I would keep up with the food/symptom diary, it may turn out to be a help.

Well done on your progress so far, a diagnosis is brilliant and paediatric consultants seem better on average than adult ones.

[cnc]

Sorry to hear your daughter is having such a rough time, I hope that things improve soon. If you're intent on her having lactose free medication domperidone comes in a liquid and some brands of omeperazole are lactose free, however, if it's an allergic reaction then there's no real problem, unless there is also secondary lactose intolerance (develops in response to being completely Milk free in some people), but I wouldn't worry too much about that at the moment, just get the immediate problems sorted. I can sympathise with the GI problems and particularly vomiting, I do to, non allergy related and know how horrible it can be, so I truly hope things improve soon.

[Jutey]

Sorry for the delay we were on holiday and have been so busy getting organised for school etc.:lol2: Thanks for taking the time to reply, the reponses on the forum have been invaluable.

We had a blood test done just about 2 weeks ago so hopefully the results will be through soon also have an appointment at the Gastro clinic on Monday so will ask the doc about the Domperidone liquid etc.
Up until last week she was only vomitting about 3 times now she is back to vomitting everyday as well as the 6 trips a day to the toilet.

We have been super careful so know there is no chance that we could have had milk contamination.

we are both optimistic though and are sure we will get there.

[Copper]

Good luck for Monday. I hope that something can be done to improve your daughter's health soon.

[Jutey]

Hi guys,

Just wanted to take the time to everyone who provided support/tips when my daughter Alex was following the milk free diet. the results are back from her RAST and have shown that she is negative for food allergy. Interestingly her IGE levels were 10 times the rate they should be. Scheduled for 3 nights in hospital on 20th :(( for further tests hopefully we will find out what's causing her symptoms.

Thanks again and good luck it's not easy out there in the DF/SF world!

xx

[Copper]

I hope that the hospital can find out what your daughter's problem is as clearly she is reacting to something.

Good luck to you and your daughter and keep us posted.

[kntjcq]

I am avoiding lactose so no cow's milk but I also now take lactose free medacation which means i have to stop taking my Omeprazole capules as they containe lactose. I take Gaviscon Advance aniseed liquid two 5ml 3 times aday. Pharmist can check drug ingrediants my pharmist has noted my lactose intolerance on their records.
Hope this helps.

Jacquie

[Jutey]

Hi guys another update, after our stay in the hospital the tests confirmed Alex to be suffering moderate reflux although the Doctors were unable to determine why it was happening. We switched meds and are now on metoclopramide and lansoprazole. We have also been asked if we could follow the elimination diet for 4 weeks so no meat(beef pork chicken), potatoes, dairy, eggs, wheat, chocolate, citrus or chocolate. If anyone has followed the diet and can offer recipes or tips they would be greatly appreciated.

Thanks again
x

[kntjcq]

Omeprazole contains lactose. As a filler it is used in many medications i now have oral solutions and take Gaviscon Advance instead of Omeprazole if your G.P is unsure check with your pharmacist or patient information leaflet drug ingredients.

Jacquie

[Copper]

Gosh that is a lot of things to avoid.

I guess this means looking at things in the free from section in supermarkets and reading the ingredient lists. I know a lot of Tesco free from things contain egg or potato starch.

Tesco free from penne pasta appears to be ok. There are the soya alternatives, mince etc.

Good luck with the diet.

[Jutey]

Hi Copper,
There are so many things to avoid Soya included :( almost broke down today in sainsburys as it is nightmare. Managed to get some more Pure sunflower spread but had to go to Tesco's no longer can I shop in one supermarket. We will have completed 2 weeks on the diet tomorrow and have yet to see any improvement. I am trying to keep positive you never know this could be the week she starts to feel better. I have also been on the diet as moral support tbh she seems to be handling it better than me.

Hope you are keeping well
take care

[Copper]

Oh dear it all sounds like a nightmare to me. I hope that there is an improvement soon.

Looking on the bright side you are half way through the diet.

[cnc]

Sorry to hear that, I hope it gets sorted soon.

Not all omeperazole contains lactose. There are a number of brands that are lactose free, and Gaviscon advance won't do the same job.