Not Lactose Intolerant BUT..help!

[Samantha J]

Hi,

I am a newbie and have been dairy free for 3 weeks. For the last 2 years I have had countless tests for stomach pain, spasms, heartburn and reflux and I was recentley sent to the hospital for a Lactose Intolerance test.

This came back as 'not showing a high' but within 10 minutes of drinking the lactose solution I had a blinding headache (never really get headaches) and then was ill for 2 days with severe nausea etc. I was convinced I would be Lactose Intolerant and was frustrated when I was told I wasn't :confused:.

Following this I decided my stomach problems must be food related so cut out all dairy and eggs and for the first 2 weeks it was unbelieveable! No bloating, no wind, no heartburn, no pain, no indigestion.. I even came off the strong reflux medication.. it was such a relief. I accidently ate a sandwich at work that had been buttered and 6 hours later was unable to stand with the worst stomach pains, I was ill for about 2 hours.

But, the last 3 days the problems have returned and I have had nothing dairy at all? I was convinced it was the bread but it's not showing any dairy on the ingredients. I'm going to aviod bread today to see what happens but this is such a knock back.

Can anyone advise about my experiences with the lactose test? Or in general?

I am going to be reading alot on here over the weekend, am so glad I found this site :)

[Copper]

Welcome to the site. You have my sympathy as lactose makes me feel very sick and that feels horrible and it goes on for hours.

Are you sure that you have eliminated dairy from your diet? They like to hide dairy in foods that you would think are dairy free.

There is a list here on this site which gives alternative names for dairy

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

You might have more than one intolerance. The only way to find out is to keep a food diary. You need to write down everything you eat and drink and any symptoms. That way hopefully a pattern will emerge which will pinpoint the problem food.

You must not cut out more than one food at a time as this will not help find the problem food. At the end of the day you don't want to cut out more than needed as you could find yourself on a very restricted diet.

I would say that you have a problem with dairy (maybe it is a protein intolerance). I would keep a diary for 2 weeks on a dairy free diet, making sure that there is no hidden dairy in everything I eat.

Next I would try and see if the symptoms (if there are any) can be tied to a food. If they do then you can try two weeks with the suspect food removed and see if you are better. If you are still ill you can put that food back in to your diet.

This could be a long process! Two weeks is the minimum time to spend testing your diet. It takes some people longer than that to clear the problem food from their bodies.

The usual suspects are dairy, wheat, gluten, eggs and soya is also becoming more of a problem these days.

I have never been tested. There is a history of lactose intolerance in my family and I was born with the problem. Over the years I have developed more intolerances - eggs, tea, coconut and soya.

I hope that this helps. Sorry it is a long reply!

[jlb298]

Hi Samantha,

Welcome to the site/club. What was the test you had? Was it the hydrogen breath test, methane or DNA?

Importantly, the breath tests are not 100% accurate, as the bacteria in your gut may not always produce an excess of hyrdogen or methane. Also this may not always occur on the timescales of the test. I would not be surprised if you were lactose intolerant and the test did not show it.

Avoiding lactose is a big problem - as it is a sugar, it can be added to many ingredients you wouldn't expect as it has useful properties (it doesn't cause sweetness like sucrose), e.g. chocolate, crisps, even chicken breasts as a filler. Importantly, it is often used as a browning agent in breads. I can't have shop bread for this reason - the best bet is to bake your own. Some brands are a bit better, I think Hovis is one of these, but I'm not sure from memory.

All of your symptoms, including those after the test, do match with possible lactose intolerance. A very good book is Tony's Lactose Free Cookbook, available from Welson Press.

[Copper]

Lactose is used as a cheap filler and to help ingredients stick together eg flavourings in some crisps.

Lactose is often found in tablets especially "the pill" :eek:

[Samantha J]

Wow, thank you all for the responses, they are very helpful.

The Lactose test I has was the breath test over 3 hours in the hospital. I was so ill I was convinced the nurse was going to say 'yep, stay away from it' but she just told me the reading was ok.

I don't go back and see my Gastro Consultant until May so I will definately keep a food diary and monitor things. I am suprised you seem to think I actually am Lactose Intolerant, I just took the result as told.

Sam :)

[jlb298]

Hi Sam, sadly your experiences with the breath test are quite typical - there is a huge gap in the understanding of lactose intolerance within the medical community. The breath test alone detects < 50% cases, and should ideally be undertaken over a longer time period, eg 48 hours. Lots of factors can interfere with the measurement. A much better test, is to have a DNA test, but this requires referral to a private clinic. I wouldn't rule out lactose intolerance based on your test result and the nurse's comments.

Definitely keep a food diary, and I would certainly recommend the book I mentioned. Becareful of reflux medicine like gaviscon - it is full of lactose also. Try and make everything from scratch for a while and see what happens. Try and avoid anything that has been processed also (e.g. crisps, cakes, pies, sausages, ready meals). Feel free to email me at lactose@jlb-science.com if you would like any more help :o) Hope you feel better.

[Copper]

jlb 298 Are you sure you want to leave your email address on your post? It could be harvested by spammers :eek:

It is usually better to contact each other by pm.

If you click on the poster's name you should get a drop down list which includes making contact by pm (private message) or email. The latter only works if you have allowed contact in your User CP.

If this doesn't make sense ask and I will try to explain it in a better way.

[Copper]

Samantha, your symptoms sound similar to mine and I have lactose intolerance. (I have not bothered with a breath test as I would be so sick they would never get me out of the toilet :unsure: )

I switched to Lactofree milk and cut all other dairy out of my diet but after a few months the symptoms came back. I can only assume that I am also intolerant to milk protein.

I still think you should double check everything you plan to eat and drink for hidden dairy, using the list from this site. Keep a diary having only cut dairy from your diet. Hopefully you will feel better soon.

If you need any suggestions for alternative foods please ask as I am sure we will be able to help.

[jlb298]

Thanks Copper - I've followed your advice and created a special email. Many thanks

[Samantha J]

Again, thank you for the replies. The more I read the more it does sound like L.Intolerance, which as I said is frustrating after the test saying negative.

I am keeping a food diary as you recommended and it seems my symptoms are better this weekend and I purposely not had white bread, I've had Hovis brown. It seems tricky with bread though.

I've stocked up on alot of Dairy Free ranges from both Asda and Sainsburys this weekend, including their biscuits and chocolate as I have a sweet tooth.