The Magical @MistyMagic Tells Her Experiences With Celiac Disease
Hello good people of 7 Cups,
The month of may is Celiac Disease Awareness month. In celebration of spreading awareness, we had the opportunity to speak with @MistyMagic on her experiences as a mother with a son diagnosed with celiac disease.
Question (1): How did you discover your son had celiac disease, and what was the process like?
Answer: It was a bit of a shock actually! I mean how could anyone be allergic to bread or flour, or biscuits, pizza, pasta, or thousands of other foods that most people can safely eat? My son was small for his age and the doctor wasn’t happy with his growth so they started doing blood tests. He tested positive for AGA, anti-gliadin-antibodies. (Gliadin is one of the parts of gluten that makes bread rise and in celiacs it causes an auto-immune response including painful inflammation and damage in the intestines.) Then we had a hospital visit and an endoscopy (thankfully under general anaesthetic as most are done under sedation only) where a tiny camera is sent down the throat and a stomach biopsy taken to examine the damaged villi in the intestines. I am sure other countries may have different ways to test too.
Question (2): What changes did you have to make to accommodate your child’s needs and ensure their comfort?
Answer: I tore my kitchen apart and removed all traces of gluten products. Gluten is present in Wheat, Rye, Barley and also sometimes in Oats. My son reacted to the protein in Oats too (Avenin, a gluten-similar protein) but not all celiacs are that sensitive.
I researched everything I could, I took nutrition courses so that I understood everything possible. I spent a long time explaining to my son what was happening and how we were going to make him feel better. I also explained to family and friends and his school so that they were aware.
Question (3): Was it difficult adapting? (That is, if there were any adaptations)
Answer: YES it was! The world is filled with gluten containing foods and products. Did you know that some shampoos, wallpaper glue and carpet backing can have gluten in? Gluten is a cheap food source and to adapt it meant filling those calories with gluten free sources. Thankfully basic foods like rice and potatoes, fruit, veg, meats, fish, eggs are all usually gluten free, it is the cross contamination that can be a problem. Suddenly an hour trip to the supermarket started to take 2 hours as I read every ingredient list and tried to cope with the fact of how many contained hidden gluten. The whole family went gluten free overnight in an attempt to make things easier. The cost of gluten free bread or biscuits or pasta is far more than the gluten containing ones, so gradually as we became less scared and more proficient at the new diet, other family members slowly returned to some gluten to help save on the cost.
Question (4): What were your major concerns during this change for your child, was there anything you were worried about?
Answer: One of the changes that I noticed was that on the new GF diet my son had more energy, he was suddenly laughing more and being naughty like any kid, he was more active in everything until it came to lunchtime and school dinners and then it was obvious that anxiety was there underneath the surface. The simple solution was that I gave him home-prepared lunches and snacks with strict instructions not to accept food from others, or put it in his pocket ‘for later’ but not eat it. I made sure he always had enough to share and give to others though as they seemed fascinated by his different food.
I was concerned that he would feel deprived, or excluded so I took on baking gf birthday cakes and helping with the catering for parties so that I knew what was in the treats on offer. I had a lot of help from www.coeliac.org.uk for recipes and tips etc.
Question (5): How has your son having celiac disease had an effect on your family or how you do things?
Answer: It means we have to plan more. Check restaurant allergy menus, and we do this now before we go out as so many have their allergy lists online now. We plan food-stops and always have long-life gf foods and snacks with us.
Holidays are always booked self-catering as hotels rarely cater well enough for gluten free.
I feel we are more caring and closer as we have worked through this difficult period and come out the other end stronger together, healthier, and happier.
Question (6): What is something you discovered about celiac disease that would be beneficial for other mums to know?
Answer: Check labels every single time you buy! So many products change their ingredients suddenly, ‘new improved’ labels become a source of frustration as the supermarkets add in cheap filler gluten ingredients. Also look for ingredients within ingredients (hidden gluten) and for the source of some ingredients like maltodextrin that can come from wheat or corn. Check if the vinegar is malted from barley (gluten) or is it apple cider or balsamic (gluten free), those sorts of things.
Find out the level of gluten that is tolerated (if any). There is a general limit of 20 parts per million being acceptable as gluten free, but for some (like my son) those 20 parts affect him badly.
Join one of the many organisations like celiac.org (hyperlinked).
Question (7): Did you have to educate yourself on celiac disease, was it difficult finding a community with similar experiences?
Answer: Oh yes! I tend to do a lot of research, I am a ‘press button’ kind of person and so yes, I learnt a lot about celiac disease, took courses on nutrition, diets and cooking. Some of the newer diets are naturally gluten free, for instance the Paleo diet.
I found that my son was the first in our community to be diagnosed with CD so it was quite lonely and I lacked confidence when I had to explain, or ask if there were any gluten containing ingredients. Joining a celiac group helped a lot.
Question (8): What is something people misunderstand about you and your child? (in relation to celiac disease)
Answer: The most common thing is that they think celiac disease is catching. It isn’t. But I feel that anything that has the word ‘disease’ after it scares people?
Many think that going gluten free is a fad, and not something to take seriously. Perhaps for some it isn’t and I know that there are many other health reasons to go gluten free like psoriatic arthritis or Paleo diets, but I can testify that the reaction when a celiac ingests gluten is serious, usually swift, extremely painful and debilitating and needs a bathroom very close by. Left unmanaged celiac disease can lead to significant weight loss and failure to thrive, malnutrition, and later in life osteoporosis and certain bowel cancers.
The only ‘cure’ is to go gluten free for life and be strict about it with no cheats or risks.
Question (9): Do you have anything you would like to say to people who may be struggling with coping with celiac disease?
Answer: If a celiac sufferer sticks to a strict gluten free diet they will grow strong and be as healthy as anyone else. The initial period of going gluten free after diagnosis is very hard, but crucial. Slowly your energy will return and you will realize that this is going to work!
I would suggest trying alternative foods and not trying to find gluten free substitutes as they rarely shape up to their gluten counterpart.
And . .
Be kind to yourself, you are worth it!
Question (10): Is there anything you would like to add/include? (stories, resources, etc)
Answer: I once made the mistake of asking the manager in a restaurant if there was any ‘gluten’ in a particular dish on the menu, they checked and the answer came back ‘no’. So we ordered the dish. Up came a beautiful fish dish complete with a coating of breadcrumbs!. The manager saw my distress and came over. I explained about the breadcrumbs and he went away and brought back the list of ingredients which clearly showed ‘breadcrumbs’ but the word ‘gluten’ was not on the list. Simply, the manager did not know that the breadcrumbs contain gluten. So, was it my fault or theirs? I learnt a valuable lesson and became braver of finding out about ingredients accurately. Also ‘celiac disease’ is spelt ‘coeliac disease’ in some countries so google that too!
I have found these sites to be very helpful:-
https://www.fda.gov/food/food-labeling-nutrition/gluten-free-labeling-foods
https://www.coeliac.org.uk/home/
Thank you to @MistyMagic, I appreciate your valuable time and insightful responses. I would also like to say thank you to @wonderfulRainbow817 for collaborating with me on the production of this interview.
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