Feeling very ill after eating cheese and milk, has anyone else had these reactions, headaches and generally feeling very unwell

[tmoxon]

Hi just wondering whether anyone on here has felt ill after eating milk and cheese products. Have been gluten free now for 3 years and have posted on here a few times to say that I still didn't feel very well.

People were helpful and suggested I get my vitamins and minerals tested and eventually I found out that I had low Vit D and Zinc and have been on supplements since December, also been given vit b12 injections and iron tablets after asking my GP for these, I was in range but they were still low.

I have had bad headaches for years, and still had DH despite being really strict with the diet and generally felt depressed and terrible. All my family cut out gluten as we didn't know whether it was cross contamination and it became very frustrating still not feeling well and not knowing why. My GP suggested I should go on daily medication to stop the headaches but I didn't want to be on tablets for the rest of my life.

Last month I decided to stop using milk in my tea/coffee and for the first time since going gluten free I felt so much better. I am not talking about stomach issues but just generally brighter in myself, like a black cloud has been lifted, I have started to exercise a bit (couldn't have done this a couple of months ago and my DH is more manageable, I needed to take a dapsone once or twice a week before and my headaches have decreased quite a bit.

I know that we can have lactose intolerance and have had a few pains when drinking glasses of milk etc. but I didn't know that it could affect people the way it appears to have been affecting me. The thing is I asked the dietitian what effect being lactose intolerant would have when first diagnosed and she seemed clueless.

Last night I had home made Pizza, the base had creme fraiche, and cheese and it was topped off with loads of cheese, woke up this morning reaching for the 2 types of headache tablets I have to take, feeling sickly and going to loo at 6am.

I have been going to the immunology clinic for the last 3 years and had all sorts of tests for allergies and no one has said I am allergic to dairy or anything else, so I don't know whether its an allergy or an intolerance, so far I haven't cut out butter or chocolate.

Just wondering whether I should be asking for any test on next visit to clinic or whether anyone has had these types of symptoms as well. Thanks for any help anyone can provide

[Hidden]

Hi tmoxon, many coeliac are lactose intolerant and some find that it is temporary, this is because the enzyme lactate that breaks down lactose is produced at the tips of our villi hence the connection with CD.

There is a very simple test for lactose intolerance which's a hydrogen breath test.

There are also people who think that they are lactose intolerant but their bodies are happy with goats milk and cheese which does contain lactose but goats milk molecules are much smaller than cows milk and that makes it easier to digest, goats milk molecules are in fact the same size as human milk.

Here's a list of previous posts on GFG about lactose and you will see that the symptoms and severity vary enormously.

healthunlocked.com/search/l...

You can also buy 'lacto free milk' in many supermarkets and this has a lot of the lactose removed and I use this as i find it easier to digest than ordinary milk and some of us find that we are ok with milk in tea but a glass of milk or lashings of cream and we get the runs. I have also read that the older people get the less tolerant to lactose they become so it is very complicated and affects us in different ways.

Here's about lacto free milk:

lactofree.co.uk/products/da...

Lastly have you had a follow up biopsy that shows whether your villi has recovered? And I'd speak to your Dr about being tested. And please let us know how you get on as this is very relevant to other coeliac.

And I hope that you feel better soon.

Jerry

[tmoxon in reply to Hidden]

Hi Jerry thank you for your help, when I looked at the search link you provided I found a lot more information and even found an old post I made probably when I had stomach pains after drinking milk a couple of years ago.

I can understand the reasons behind not being able to digest the lactose with our villi being worn away but am a bit confused about the other symptoms I have such as the bad headaches that will only go when I take prescribed medication.

Do you know whether lactose intolerance can cause these reactions which to be honest I thought were gluten related?

I only got diagnosed with CD after attending a immunology clinic who blanket tested everyone, I went there after many years of having to take steroids in summer due to bad asthma. At the time I had skin prick tests and many other allergy tests and last year had a new one called the ISAC test which is supposed to be an accurate allergy test for over a hundred things and all came back negative. I would have thought that if I had an allergy to milk or its components that this would have highlighted it.

thanks again

[Hidden in reply to tmoxon]

Hi there, head aches may not be a common symptom of lactose intolerance but it makes sense that it could cause a head ache for many reasons, here's a link with others having head aches due to lactose:

medhelp.org/posts/Gastroent...

Having CD is more complex than even the experts realise and it could be a cross reaction to a similar protein as lactose this is also possible with fructose as they are all long chain molecules and I think that many coeliac have a trigger happy immune system! And the secret is to listen to our bodies and if it makes us ill then avoid it. But I do not know anything about the ISAC test and how it diagnoses allergies so again I'd ask your GP for a hydrogen breath test.

Jerry

[Regalbirdy]

Hi tmoxon

I've had an issue with dairy for years. Like you, I found my dietician was clueless. On the day of my coeliac diagnosis, she told me that as long as I maintained a gluten-free lifestyle I could eat all the dairy products I wanted.

How wrong she was! It took me six months to figure out that the dizzyness, tiredness and spaced out feeling was as a direct result of dairy consumption (and not from cross contamination of gluten - as I too thought it could be). I had also been to the GP three times about it and they were also clueless. In my case I didn't get the headaches so much but the rest was pretty unpleasant. The penny finally dropped when I ate a lump of Camembert one lunchtime - because 10 minutes later back came all the symptoms.

Btw, I found eating goats milk and cheese made my symptoms just as bad, if not worse than before (even though I do love them!); so you may not find this helps you. However as Jerry suggested, it might be worth trying anyway to see.

As soon as I gave up the dairy products I got a lot better. It's possible you may be intolerant to the milk protein called casein; because I believe it has a similar molecular structure to gluten. Unfortunately my dietician (when I went back) said this was difficult to test for; and that the best way to figure out if I felt better was to do an elimination diet. Please, please monitor calcium levels carefully if you're giving up the dairy because it's an important source for those on the GF diet. I get away with it because I already have to take prescription calcium supplements.

Best of luck.

[tmoxon in reply to Regalbirdy]

Hi Regalbirdy thanks for your post.

You sound as though you have the same type of symptoms as I do, at least you were clever enough to work it out after 6 months, I have been blaming wine, maltodextrin and lots of other things, its taken me three years for the penny to drop and only by accident. its been very frustrating.

When ever I have read about having lactose intolerance it has been the stomach issues etc that are mentioned so didn't think giving up milk would make the difference it has. I also cant understand why my DH has improved as well as this is supposed to be caused by gluten.

I gave up the milk about 5 weeks ago as I was sick of having a croaking voice on a morning and read that dairy can cause mucus build up etc. I have continued to have butter without any major problems but have tried cheese on two occasions and woken up in the middle of the night with a bad headache.

I am on Adcal tablets at the moment so hopefully should be ok for calcium, I have also started eating dried figs which are high in calcium as well.

Thank for your help

[Lynilou]

Hi, yes I still have to be careful with dairy after years of a CD diagnosis, originally I was very ill after any dairy so resorted to goats cheese and soya milk. Having recently been ill again my consultant asked me to try dairy again to support my build up of calcium and I find that I can manage semi skimmed milk in small doses, but cheese or cream still makes me ill.

As Jerry said a biopsy to check your diet is working may help. If you are lucky enough to be working with a dietician you could try asking for some support, as I find I have a whole raft of foodstuffs which affect me now and am very careful what I do eat, particularly following advice here on gfg I have stopped buying 'free from' ranges from supermarkets!

[tmoxon in reply to Lynilou]

thank you Lynilou unfortunately I didn't find the dieticians I saw very helpful and decided it was a waste of time attending the appointments. I have been going back to the immunologists now for the last 2 years saying I don't feel any better but no one has mentioned me having another biopsy, I will mention it to them when I go although after giving up milk I feel I have turned a corner. thanks again

[pretender]

If you feel that dairy gives you problems leave it out and find an alternative, I use Soya milk without Maltodextrin. It is cheaper than milk and you soon get used to it as a substitute.

Biopsies will show the state of the gut but if your gut is normal your CD might be elsewhere, mine is reduced folds, D2 with a normal gut. The strict GF diet is misleading as most GF foods may contain up to 20ppm per kilo of gluten and as you age recovery takes longer for your villi

[tmoxon in reply to pretender]

HI Pretender thanks for your help, I think I might have had CD for about 25 years before diagnosis so maybe it will take longer to heal, still get DH which is very annoying

[pretender in reply to tmoxon]

As I understand it DH is linked to CD so if your still having the derivatives in your foods that might be your trigger, worth looking at is Commission Directive 2007/68/EC and the European Food Safety Authority putting gluten in the search box. I was first diagnosed aged 6 in 1955 then had a capsule biopsy in 1962 and declared not to be coeliac. The villi as I understand it can take between 6 months to four years to heal. In 2007 following chemical poisoning (X 5 in 2006) it was diagnosed again. The gluten free diet and other foods are restricted to me because of some ingredients that trigger other health issues plus Urticaria.

[Alyssa]

Just joined the forum and posted my experience but will just also reply to your post as I have only just discovered that lactose is found in very many of the coeliac foods on prescription and on supermarket shelves. So check your breads, pasta, pissa bases, flour as ALL of the brands I was using had lactose! After only one week on new prescription foods that are gluten and lactose free my severe diarrhea has improved significantly after many years of frustration not knowing lactose was in my food! Hope this may help. A x

[pretender in reply to Alyssa]

If your still having bowel problems check out my response to tmoxon above, not all coeliac's can tolerate the derivatives