Monthly Archives: September 2014

Experiments with Gluten

If you’ve been following this blog for a while you’ll know that my daughter and I follow a gluten free diet (Our experience of going gluten free), and in my last post Dairy Difficulties I talked about our recent experiments with my son, and how he appears to tolerate gluten, but have problems digesting dairy.

With the recent improvements in my health I have been considering testing whether I react to gluten by doing a gluten challenge (eating it and seeing what happens). I didn’t want to do this earlier, because I was still regularly having “bad days” and I wouldn’t have known whether any symptoms were from eating gluten, or a bad ME/CFS day. However, I am reasonably stable day to day now, so I thought I could differentiate between a gluten reaction and my everyday healthy feeling.

I’ve been waying up the pros and cons for a while, and I’ll summarise them as:

My reasons for trying gluten are:

  • I’ve never had a test that showed I was sensitive to gluten
  • I may never have had a problem with gluten, my avoidance of it may not have been part of the reason for my recovery, and I may not need to avoid it at all.
  • I may have been gluten intolerant, but my gut has now healed and I can tolerate it again.

Reasons for continuing to avoid gluten and not try it are:

  • I could be coeliac, in which case even a small amount of gluten will be doing long term damage to my body. My daughter has the gene for coeliac disease, so there is a higher than average chance of me also having this gene. My blood test for coeliac disease was negative (As was my daughter’s and son’s) but this test generates false negatives, so you can get a negative result but still have coeliac disease).  It’s also possible to have “silent coeliac disease” with no gastrointestinal symptoms.
  • I could be intolerant, and spend several hours/days feeling ill following eating gluten.

Having decided to go ahead, last Saturday evening, whilst my daughter was away (I don’t want her to experiment like this because I’m pretty sure it would not be good for her health) I had a tortilla with a normal, wheat containing wrap.

Saturday evening and Sunday morning I felt fine, however Sunday afternoon and Monday morning I was very fatigued and also light headed. It thankfully cleared by Monday afternoon, after a restful morning, but it was an unwelcome reminder of how I used to feel all the time. Unfortunately, having said that I could distinguish between the effect of gluten and ME on my body there is another variable to throw into the equation. I had my period at the same time (I should have thought of this and waited until that was out of the way to try gluten). Whilst I haven’t been affected during my period for quite a while, I have been in the past, and I know it is a natural low point of the month for many women.

I felt OK on Tuesday and Wednesday, and then had two more “bad” days on Thursday and Friday – feeling more fatigued than usual and the general malaise that it so common, yet so hard to describe.  Again I don’t know if this is related to the gluten, or perhaps I was fighting off a cold that my kids have had.

So the results of my experiment are inconclusive.  I definitely felt worse than usual after ingesting the wheat wrap, but I can’t be sure that how I felt was due what I ate.  I’ve realised that there are always other variables at play.  If I’m going to test this properly I think I need to consume gluten at every meal for a few days until either I feel ill or I remain fine. The thought of possibly deliberately making myself ill scares me. It has taken a long time to get to this state of health, and how I felt last week was a most unwelcome flashback.  For that reason I’ve decided not try this at the moment.

Additionally my son has had another run of tummy aches, so it seems dairy free is not the whole answer to his issues.  We are going back to the doctor about his symptoms, but even my husband (who is extremely sceptical about the negative effects gluten can have) has suggested perhaps we should try removing gluten again.  However, this is not something we’re going to rush into, so we’ll wait and see what the doctor says first.

What would you do in my position?

Dairy Difficulties

2014-09-19 13.28.50

Homemade yoghurt served with jam.

There are two main potential problem particles in dairy.  One is lactose (you’ve probably heard of lactose intolerance).  The other is Casein, which is less widely known.  Some people also have a milk allergy (different to an intolerance), and it’s also possible to react to Whey.

Lactose – Lactose is a sugar found in milk (and milk products).

Casein – Casein is a milk protein.  You may remember from previous posts that Gluten is a wheat protein.  It is quite common to find that if you have a gluten sensitivity you also have a casein sensitivity, since the two are handled in a similar way by the body.  Here is a great post from ThePaleo Mum which explains Gluten Cross-Reactivity to dairy and other foods.

Whey – Whey is another milk protein which can cause similar reactions to casein.  If you are using whey protein and are reacting to it, then you could be reacting to the whey, but it could also be because the product is not 100% whey, but also contains lactose and you are reacting to the lactose (confusing isn’t it).

Our family’s experience

I have been making home made yogurt, which I ferment for 24 hours, for many years.  This supposedly leads to all the lactose being converted to lactic acid by the yoghurt making bacteria, and hence it is safe even for those who are lactose intolerant.  I plan to write more about this in a future post, but in the meantime, here is the information that got me started on this path.  When I first became ill yoghurt making was one of the many activities that stopped.  However, as soon as I was able (probably 18 months after my crash) I began making the yogurt again.

A few months ago I removed all dairy from my diet for a period of 2 weeks and then reintroduced it.  I did not notice a difference in symptoms on removal or reintroduction, so I therefore do not think I am intolerant to lactose, casein or whey.  I do not avoid dairy, and regularly eat my homemade yoghurt, and I occasionally enjoy some cheese or a creamy dessert.  However, I don’t go out of my way to consume lots of dairy.  I am focusing on a nutrient dense diet, and most of the time I think there are other foods that will benefit me more.

When my daughter started her gluten free diet our nutritionist warned us that many people who react to gluten also react to casein and hence she may also need to avoid dairy.  We’ve never removed dairy completely from her diet, if you’ve read my post about our experience of going gluten free, you’ll know that given the state of my health at the time it was challenging enough to remove gluten.  Writing this makes me think that we should probably do a trial to eliminate dairy and reintroduce it and see if there is any reaction, but this will rely on her co-operation.

Over the last few months we have also been trying to work out the cause of my youngest son’s regular tummy aches.  After excluding gluten from his diet we noticed that the tummy aches came when he ate dairy.  We therefore excluded gluten and dairy for 2 weeks (he was fine) reintroduced gluten (he was fine) and a week later reintroduced dairy (he was not fine).  Over the summer there have been several instances of him eating dairy and getting tummy pains.  However, he seems able to consume my homemade yoghurt with no problem.  This makes me think that he is lactose, and not casein intolerant.  I am still experimenting to see what he can tolerate.  For example I read that many people with a slight lactose intolerance can tolerate butter, because it is mainly the fat portion of milk and hence does not have much lactose.  However, his consumption of chocolate brownies made with butter did not have a happy ending.  That was 2 weeks ago, so I am now going to try some whey protein isolate to see if he can tolerate that.  Again this is supposed to be a different fraction of milk, with very low lactose.  I consulted with our GP before I excluded gluten, and my son had a coeliac test (which was negative).  At the end of the summer we went back to the GP to tell her the conclusion we had reached, but she does not want to do any testing to confirm lactose intolerance, and is happy for us to continue as we are.

All our meals now need to have gluten free and lactose free versions and packed lunches are even more challenging than before.  It’s a good job I have more energy because an awful lot of it is going into thinking about and preparing food. Over time I hope to get better at gluten and dairy free options so that it is less effort.

Summer Round Up

I’ve had a really busy, fun summer  with no time for any blogging. Here’s a summary of what I’ve been up to and how that’s impacted on my ME and my diet.

Firstly my health has taken a leap forward over the summer. This had started to happen in June/July when I began to do the school run more and more reliably on my normal (non-electric bike). My physical stamina has continued to increase, and I have noticed that I can now push myself physically with minimal ill effects afterwards.

We have been away a lot over the summer, visiting family and going on holidays.

Visiting Family and Train Travel

The first week of the school holidays we went to visit my family. It’s a 3+ hour drive, and I wasn’t confident that I could drive that distance, so my husband drove us down, then came home to work and I booked train tickets for the return journey.

Travelling by train is something I couldn’t do for a long time because I couldn’t walk the length of the platform, and this train journey involves crossing London, so there’s quite a bit of walking involved. I was thrilled to feel confident that I could handle the journey with 2 kids and some luggage.

Unfortunately my son and husband (who was supposed to be collecting me from the station) both came down with a tummy bug (caught from swimming in a river) so the journey home was more eventful than planned (my son clutched a sick bag the entire journey, but thankfully didn’t need to use it). However, I managed well despite the extra stress and having been up with my poorly boy the night before the journey.


Our Car, fully laden with camping kit and bikes

We did two weeks camping, with friends, split between Norfolk and the Netherlands.   This was where I noticed the most improvements.  Last summer I was using a mobility scooter to get to the toilet block from our tent and did not join in many activities, spending most of my time lying around.

This summer I took my bike and no mobility aids.  I felt confident that I could walk to the toilet block, and if for some reason I had an unusually bad day, my hubby could drive me in the car.  What I managed exceeded my expectations.  I was pretty much like a normal person.  Here are a few highlights:

  • Helping pack and unpack the car and pitch the tent (As you can see from the picture that’s a big job!)
  • Spending 2 hours in a water-park: – very noisy and lots of stairs to get up to the various flumes  (I did this multiple times as we had free entry every day on our Dutch campsite)
  • Walking round an amusement park and going on adrenaline inducing roller coasters
  • Sightseeing in Amsterdam and Delft
  • Cycling 26 km in one day (bike paths in the Netherlands are a dream come true)
  • Socialising with friends and drinking some alcohol.
  • Shopping for food and cooking (an integral part of camping, and with several teenagers in our group, there was a lot of food shopping!)

There were times that I did need to rest, but they were rare, and did not dictate the pace of the holiday.  All in all this was a wonderful time, and it was great to catch up with friends and have fun with the family.

Delft-  a beautiful town for a stroll

Delft- a beautiful town for a stroll

Shropshire Holiday

2014-08-26 15.48.53

Me and my Husband on top of the big hill we’ve just walked up

Yes – another holiday!  I know we’re very lucky and we had a good reason:  my brother and his family are living in England for one year (they usually live in the States), so we are trying to spend as much time with them as possible, and hence grabbed a week away with them.

This holiday was at a slower pace than our camping trip (my SIL is 8 months pregnant), but 8 people in a holiday cottage with plenty of rainy days can be challenging.  I did sneak off for more rests during this week, but I also managed a walk up a really big hill and days out to farms and castles with plenty of walking.

Getting Ready for the New Term

If you have school aged children then you’ll know that inevitably some time has to be spent kitting them out for the new school year.  My daughter has just moved up to secondary school, so she needed completely new uniform.  Of course the boys have also grown so we needed to try their uniform on and work out what new stuff they needed.  Then there is the dreaded shoe shopping and labeling all the new clothes.

I managed all this without feeling completely drained and overwhelmed by it.

My Summer Diet

With all this time away from home my diet had to adapt.  Whilst away I didn’t have access to my blender or juicer.  This meant no green smoothies or vegetable juices.  However, I still focused on getting plenty of vegetables into my diet.  For breakfast I often made frittatas with vegetables, and for lunches/dinner I usually had lots of salad.  We also made Haloumi kebabs when we had BBQs (Haloumi cheese with peppers, onions and mushrooms) – yum.

Additionally I wasn’t drinking Kombucha Daily.  To compensate for this I bought some probiotic tablets (Udo’s Choice Super 8) and had one daily.  I also took 2 magnesium tablets daily (more than I take at home, but an acceptable dose according to my nutritionist), to avoid any constipation that may have occurred with my change in diet.

Whilst sticking to a basically healthy diet, with plenty of vegetables, lean protein and healthy fats I also allowed myself to indulge in holiday treats.  In particular we visited some excellent ice cream parlours in the Netherlands.

The Netherlands seems particularly well adapted to food allergies, with even our campsite shop selling gluten free bread and cereal and all the ice cream parlours labeling whether their products contained gluten or lactose.   We even found a pancake house that had gluten free pancakes.


Most of the time now I feel like a normal (without ME) person, who happens to be quite unfit or a bit lazy.  I feel like a switch has flicked, from ME mode back to normal.  I know I still have less stamina than my healthy friends and I do still need to pace myself a bit, but I don’t think a stranger would guess that I was ill, and I don’t want to use that label myself anymore.

I am hoping that as we move into the term time rush I can maintain my new found status and continue to improve, so that soon I will describe myself as recovered.