Lactose Intolerant how do you find out?

I know that it is common place for coeliacs to be lactose intolerant for a while after being diagnosed. My question is how did anyone find out they were lactose intolerant, is it a case of just cutting out milk products to see what happens, or were you tested?

I have read that there is a breath test that can be done to establish whether a person is lactose intolerant, has anyone had this test and if so who organised it, specialist, GP?

When I was first diagosed with CD I was so pleased to find out what was wrong and thought that all of the symptoms I had ( none of which effected my stomach much) would disappear, now after almost a year on the GF diet there are times when I feel really unwell and would like to find what else is causing the issues, I am avoiding codex wheat starch as when I ate that I had a bad rash flare up. But I have had the rash flare up again without the starch so it gets really confusing to work out exactly what is causing the problem. I have started keeping a food diary but after several weeks of monitoring exactly what i eat nothing has flagged up yet, ie I can have a glass of red wine one night and be fine the next day, another day after drinking the same amount I might have a headache. I know it might take some time to see a pattern, but I think if I had the same symptoms every time then it would be far easier.

Just wondering whether all of the people who are aware of all of the different foods that dont agree with them found out by being tested in some way or whether they did some sort of elimation diet.

Thank you for any advice you can provide.

8 Replies

oldestnewest
  • Hi Tmoxon, its the hydrogen breath test and I would ask at your GP's surgery and if they do not do it ask to be referred.

    The easiest way to find out if you are sensitive to lactose is to eliminate it.

    Now you say that after being on the gf diet for a year now you do not feel better, well firstly I'm sorry as that's a drag and it makes life seem like hard work.

    You say that you have cut out codex, well how about malted cereals and oats? as not all coeliac can tolerate the low levels of gluten in malted products or oat gluten avenin's.

    Then there are wheat deriv's that can be derived from wheat and have traces of gluten, maltodextrin comes up a lot as causing issues for some and there was a question recently about xanthan gum and again some coeliac can not tolerate it.

    I can not tolerate codex, low levels of malt, oats and I avoid wheat deriv's. The one naturally gf grain that I have issues with is millet and it's always the millet flakes and I have read its contamination of the grinding wheels that they are turned into flakes on. All I know is millet has a gluten like effect on me.

    Some of the low level gf foods have an insidious effect on some coeliac so that they think that they have IBS.

    Lastly what are your vitamin and mineral levels like? because if you are low especially in vitamin D you will feel low as you will if you are anaemic.

    The reason that I am always banging on about low gluten foods is I didn't try codex at first and just ate naturally gf foods and I felt better 10 weeks later and I was very anaemic when diagnosed. Then when I tried codex I went anaemic and the Dr thought that I had IBS.

    And good luck I hope that you get yourself sorted soon.

  • Firstly you are doing the right thing in keeping a food diary and this is something you should see a dietician about.

    One of the things you need to establish is if it is just lactose (milk sugars) or casein (milk proteins) to which you have problems. Many people think lactose-free is safe or will try lactose-free foods and still have issues.

    Also need to understand the difference between an allergy (allergic reaction to a substance) and an intolerance (inability to digest a substance). Allergies usually manifest through reactions/swelling in the mouth/throat, asthma and/or can cause diarrhoea or rashes. Intolerances normally present themselves as digestive disturbances/diarrheoa but can also cause rashes.

    My advice would be to try a milk-free elmination diet. This is tricky as many, many processed foods contain milk. You need to avoid anything that contains: milk, cream, yogurt, cheese, whey powder, buttermilk, butter, creme fraiche, caramel, lactose, casein or caseinates.

    Most common things having hidden milk are margarines (Vitalite and Pure are OK, as is Aldi's sunflower margarine). Cakes usually have milk in them and many pastries/breads are glazed with milk. Most gravies are also dodgy and Just Bouillion is dairy and gluten free.

    Chcocolate, even dark chocolate usually has milk in - there are a growing number of milk-free chocs around.

    Processed meats, particularly hams have milk in quite often. Crisps also are full of milk as are many sweets.

    Wine also can contain milk residues as, depending on the winery, some use milk products to clarify the wine in the late stage of processing.

    I find milk more tricky to avoid than gluten. And is in more bizarre things. Gravy, for instance and ham.... why????

    Once you are stable then, reading labels, try to reintroduce foods back in, monitoring reactions.

  • Ah, forgot to say for a mlik elimination diet - you need to monitor your calcium levels so would recommend upping your intake. You can get this from foritifed substances, such as soya milk with added calcium. One soya yogurt and an Oy! (small chocolate milk) will give you 70% of your calcium intake.

    The remainder can come from other calcium rich foods, such as eggs, meat, fish, brocolli, etc.

    If you notice you are getting random leg cramps, this can be a sign of mild caclium deficiency.

  • Oh and this: amzn.to/xwttca is a good preventative - contains enzymes that dissolve milk.

    But not recommended as a way of dealing with it - just useful if you are eating out and want protection or if you eat something and then discover it has milk in it.

  • Very comprehensive advice here from meanioni, I still think it's worth eliminating ALL gluten.

    A good source of calcium is sesame seeds. It's also worth pointing out that many med's contain lactose

  • The gastro offered me the breath test, probably on my second visit after I said I was belchy, windy, crampy and sometimes diarhoea after anything milk related. If I had to describe it - you might be able to identify it as the gas is expelled via the lungs (it feels powerful) rather than out of the gut (if that makes sense), so a 'belch' never makes me feel sick.

    I think that eliminating lactose was harder than the GF. I miss cheese, I have a lactose free variety but it isn't Red Leicester [and whoever said that cheese/yoghurt was okay was joking!] I have lactase tabs but they are hit and miss. Lactofree have just introduced a 'butter' which is okay - I just need something to put it on!

  • Magnesium is something people forget about. For calcium to be absorbed and work correctly we need good Magnesium and good Vitamin D. Low magnesium can cause many problems,

    "The other symptoms of magnesium deficiency are difficulty in swallowing, constipation, urinary spasms, menstrual cramps, photophobia, chest tightness, neck pain, jaw joint dysfunction and breast tenderness. Thus it is the primary case of hyperactivity, restlessness, panic attacks and premenstrual irritability. The symptoms arising out of peripheral effect on nervous system are numbness and tingling. Low levels of magnesium also affects the heart. Palpitations, heart arrhythmias, high blood pressure and mitral valve prolapse are the common symptoms of magnesium deficiency. A desperate urge to binge on chocolates is also seen as one of the signs of magnesium deficiency in the body. "

    buzzle.com/articles/symptom...

  • Thanks everyone for all of the excellent advice. Thank you meanioni for explaining about lactose and casein which I hadnt even thought about, I had forgotten about whey powder so will have to watch out for that. You all seem to be experts, I find it all very daunting especially when I am having to give up a food I really enjoy.

    Jacks - I have only been cutting out milk products for a few days and it really isnt easy, the GF diet in my opinion is far easier as I love milk, cream, butter and chocolate. I have bought vitalite to replace lurpak and I am afraid I think its awful. I will keep going for another week or so to see whether I notice any changes, but after reading the problems you had when you had milk I dont know whether I have a problem with it as the only thing I have experienced on two occasions is bad wind in my back after large milky coffees, I have had them since and not experienced anything.

    Jerry - I have stopped eating any of the products which contain the low levels of gluten that CUK recommend as being ok such as own brand cornflakes etc.

    Fiona - thank you for this information I already have some Magnesium supplements, I got these after I read they helped with headaches before I was diagnosed with CD, but when I saw a neurologist she said that they wouldnt help me so stopped taking them. I will get them out and start taking them today.

    As far as i know I have had all of the blood tests for anemia, thyroid etc and am monitored at an immunology clinic and all of them have come back as being normal, my doctor said my iron level was very good as is my blood pressure which is always low so I assume that I am not lacking in anything. Because of this I did wonder whether my villi had been damaged that much ( to be honest at the time I was wondering whether to stick to the diet as stringently as i had been as I have never had the terrible stomach issues that a lot of people have) but the consultant showed me the letter that he received from my endoscope which said my villi had been damaged moderately to severely.

    What people did to gain information about the problems they still experience after going gluten free before this site and the other facebook sites I really dont know. I was diagnosed last year and the dietican I saw gave me several sheets of badly printed out pages from the CUK website and a list of prescription foods to order from the doctor, she didnt explain about codex wheat starch and ordered me fresh bread one loaf at a time when I came to order it I found that you need to order it in boxes of 6/8 loaves at a time.

    Thanks again

You may also like...