My story is similar to many of yours but it has taken us until Jan this year to work it out!
My daughter is 20 and has suffered bloating, runs, painful wind and, at times stabbing stomach aches which had her writhing on the floor and necessitated rushes to the doctor for pain relief, calls to afterhours drs, and hospital emergency. For the following days she was lethargic and her whole tummy area hurt. These awful symptoms which seemingly came with no warning at all were very distressing for a young girl living away from home in a Uni college, attending university and working part time.
She moved out of college accommodation this last year and has been in a shared house. Her symptoms got worse as the year went on until at the end of last year she was a mess. ( I suspect she was eating 'healthier foods' since moving away from the college.) She didn't want to eat anything as everything she felt all food was the cause of her painful bloating every night, headaches and migraines, not sleeping well (she told me later she was living on panadol and would take sleeping tablets if she had to work early the next day) After Xmas lunch she was in a lot of pain and it was very noticeable she was losing weight.
When i think back we had been to the dr with various symptoms since her birth. In late high school, after a particularly bad stomach attack our dr. could only recommend wind tablets. It is interesting to note that she had glandular fever the previous year in year 11.
During her college years her dr recommended an elimination diet. Yay! Unfortunately it was the FODMAPS elimination diet which is full of salicylates. It seemed to make some difference for a while probably due to less additives and preservatives and of course she fell off the wagon as the improvements were minor.
Our next step was to have her tested for coeliac. We were desperate although from reading I was pretty sure that was not her problem. I was right. Expensive, invasive tests for nothing. She has not wanted to do anything else for a year or so but I did say to her in November last year that when she had finished her exams and moved house she would need to see a dietician. (In the past we had only seen what was really a weight control dietician.)
Late December 2011 I spoke to a friend about my concerns and she said one of her daughters suffered greatly from stabbing pains after Xmas dinner! Her eldest daughter who has just completed a degree in nutrition and suggested her sister might be sensitive to salicylates.
I went into research mode and found a list of symptoms for salicylate sensitivity. All of the symptoms she had been having were there plus many we did not realise were part of her problem. Ringing ears, ulcers in the mouth (at the time she had 5) weeping eyes, irritability (we thought that was hormones) awful rashes under her arm. Just about everything except chronic fatigue and some eye tic!
I continued reading and helped her start the elimination diet. The bucket affect was a revelation. No wonder we could not pin point the problem foods. I read everything and borrowed Sue's books from the library and passed all the info onto my daughter. I will buy the Failsafe Cookbook. She was quite upset as looking at the list of what she couldn't eat and combined with how unwell she was, she needed lots of support. I found recipes and went shopping. She came home for a few days and we cooked and shopped and read labels. So much is just knowing the alternatives. No honey but golden syrup fine, no olive oil but canola fine. So many simple changes that are so easy. We didn't cut out amines as she was upset enough at what she couldn't eat. I thought if she still had symptoms and she was in a more cooperative mood we could cut them out later. Also she had been to Zimbabwe to visit her boyfriend's family and she had been really well. They ate a lot of aged meat and I bet their produce is stored and picked differently to ours. She gave me the food from her pantry she couldn't eat and I sent her back with foods she could eat and patties and dips and muffins.
After about a week her physical symptoms were almost gone. No more bands of heaviness in her head, or headaches, really only some mild bloating when she made a mistake with labels. Not many mothers would be happy to get a text from their daughter saying they just had their second proper poop! But I was.
She has been very busy moving, house hunting, and finishing summer school and had some special social engagements so we have not progressed to the challenges. We planned the social events and she went prepared and still enjoyed herself. She was a little bloated (which seems to be her default symptom) but managed well. She will start the challenges when she is settled. We are looking forward to it as we want to have a better idea of what is actually the main culprit. I know it may be more than one. I suspect salicylate sensitivity, flavour enhancers and maybe some preservatives. She certainly doesn't want to avoid food she doesn't have to!
Last night I got a text from her that said she felt she was not as scattered in her thinking and did not get upset and weird about things. She feels more in control and settled. Wow! These comments were after 3 particularly busy and stressful days. The physical improvements were the most noticeable at first but now the mental and behavioural improvements are showing. This has all happened in a month.
When I think back I think she has suffered since birth. She had reflux and after falling asleep would wake and cry for hours. Of course everyone said colic but even colicky babies settled sometimes. When I look at her baby photos she just looks pained and unwell. After about 4 months my husband joined me at the drs as my health centre nurse was concerned she was not putting on weight (no wonder! All her milk was on my clothes!) He told the dr we had to do something now as things were becoming desperate at home. The dr prescribed a drug that helped keep the flap at the top of her tummy closed after eating. I am pretty sure we also changed to the bottle because I was exhausted and she needed to put on weight. Well, in about a week we had a new child. Happy, smiling, sleeping putting on weight. I always attributed the improvement to the drug but now suspect it was changing to the bottle! In affect I was poisoning my baby!
She was quite good through primary school. Probably there were not as many additives and preservatives in the food and our fruit and vegetables were picked ripe. She did have some aches and pains, a rash here and there and we did joke about her lack of concentration. Nothing that really impacted her life; that was just her.
If my daughter had been born now I am pretty sure we would have gone through the trials so many parents I have come across in my reading and on the DVD. This probably shows how much our food has changed over the last 20 years. At least parents today have to deal with it early in their child's life. I know this has been difficult for them but I think it is better than our experience as it has been over so many years and during some challenging teenage times for my daughter. Then again I have read of people not getting the answers until their later years and I bet many have never come across the right answers.
I really wanted to write my story and also to sincerely thank Sue and Howard and all the parents whose stories I have read. All helped piece the puzzle together. – Sylvia by email