Am I getting somewhere?
It is certainly true that if you want to find answers to your own health questions perseverance is key.
Today I had another great appointment with a NHS dietitian. A different lady to the last but again very understanding, competent, thorough and knowledgeable. This was the second appointment, a follow up to the last where we agreed for me to try probiotics and trial lactose.
The probiotics were tricky as the first I purchased stated they were lactose and gluten free but I reacted to them. On further questioning the company said they did use dairy cultures but had very low levels of lactose so were allowed to be labelled lactose free. Please be aware that some probiotics may be grown on dairy cultures. Others however are absolutely fine. I have since tried CoYo with no symptoms or problems. This has to be the tastiest way to boost your probiotic levels without any dairy.
(see my previous post on CoYo, http://www.lovelactosefreelife.blogspot.co.uk/2012/10/coyo.html)
I have been advised to take probiotics for a month so I may have to resort back to tablets as they are more economical.
The lactose trial was easy to carry out but felt very bizarre. This is the first time in 4 years I have purposely eaten a meal containing lactose. I chose to eat goats cheese to differentiate between dairy and lactose. Although similar in lactose levels goats and dairy soft cheese are often reported to produce different reactions. As I have never tested myself properly with goats products I was keen to use them now. I have to admit the smell and taste helped me conquer the slight nervousness of what may happen. I used to love grilled goats cheese salad and I managed to eat this with no hesitation. The results were a gradual return to lactose intolerance symptoms over the following hours. The heartburn, indigestion, stomach cramps and wind returned at a low level within the first 12 hours. I decided to compound this by trying a second portion the next day and my symptoms increased predictably. That was enough of an answer for me. Lactose in goats products was a problem without any dairy. What is still to question is whether dairy without lactose is also a problem as I suspect. Interestingly the lactose didn't have the drastic effect on my bowels that I thought it did. Is this down to gluten not lactose?
The dietitian gave me the results of the food diary assessment that they had run through the computer. I was fairly consistent with my nutrition and had no markers for attention or deficiencies from what they could see. There was a slight question over calcium levels but on further investigation we are happy that the fortified dairy free products (rice milk, soya yoghurt and cream etc) are providing an adequate level even without the other natural foods contribution. My weight has also stabilized since January and the removal of dairy and gluten as well as the already excluded lactose.
The next step is interesting. The dietitian was happy to request that the GP to refer me to the allergy clinic at my local hospital. The aim, to test me (RAST or Skin Prick) for allergies to dairy (cows milk protein), wheat and soya. This is the first time someone has offered to have this done. I agreed with relief that I can finally have these questions answered. I am also slightly annoyed as the allergy clinic is in the same hospital as the gastroenterology consultant who was very derogatory towards my comments and questions over allergies. He was keen to deter me from having any further tests done at all stating lack of robustness and cost to the hospital. These tests will hopefully rule in or out whether dairy (rather than lactose) is a problem, whether wheat (rather than gluten) is a problem and if I am allergic to soya (as since consuming more I have had rashes and hives appearing on my hands and arms).
The relevance of these tests is heightened by the health problems little one is experiencing. If I know what has to happen to me and what the results are then we can ave a clearer path for him.
Finally after the inevitable wait for an allergy clinic appointment and undertaking the tests we will tackle gluten. I am happy to leave this one until last. If all the other tests come back negative then the next step will be a gluten challenge. This will mean eating gluten containing foods every day for 6 weeks in order to take blood to test for antibodies. Whether I am Coeliac or gluten intolerant this gluten trial could make me feel extremely poorly. Unfortunately to move forwards I need to take this challenge to gain the results I need to know. Being gluten intolerant is difficult enough but if I am Coeliac then I need to avoid gluten at all costs. To know what measures to take I need answers.
It does seem that after 4 years of extreme symptoms and a life time of problems I am finally getting at least some of the answers I need. This has only happened by nagging, researching and persevering with my need to find answers.
Good luck to everyone else out there who is doing the same, I'll keep you updated!