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Diagnosis is not the Hardest Part – Living with Celiacs

divinely gluten free gluten intolerance

I thought the shock of diagnosis was going to be the hardest part, but when you and your children all get diagnosed with Celiac’s Disease the same week, life is tricky.  Here is how we coped.

I had known something was not right for most of my life. In my twenties and thirties I tried to find out what was wrong. I made little to no progress. I was told by three separate Doctors that I had a leaky gut. Great – in my naivete I believed that meant I would find out what was wrong and heal. Nope. It would take over two more decades for that to happen.

What I find most interesting about being diagnosed with Celiacs disease, was to see how much I naturally gravitated towards the foods that would serve me. I loved rice and baked potates. Hated Pasta. HATED PASTA! I remember as a child asking my mother why we had to eat so much pasta (four times a week for the first 18 years of your life when you cannot digest it is not ideal). As an adult, I realize why my mother made pasta four times a week – with two growing boys and a tall strong husband to fill, pasta was pretty economical.

It was rumored that one Christmas I refused to open a single present until I had two bananas. My mother can still be roused to proclaim, “oh you and those damned bananas”. Yes mother, they actually keep my alive.

I had the immune system of a celiac. I was sick every year of my life from October through March. It was decided at age 10 that I definitely did not need those pesky tonsils and (much to my mothers eternal regret) they were removed and for a year or two I was ok. Until it started to affect my lungs, sinuses and ears. Winters were spent sipping honey, lemon and bourbon (it was pretty good) in the hopes I would fend off whatever was trying to make me sick.

Childbearing started early for me, and I was astonished to find that each pregnancy (the ones that survived) depleted my body in a horrible way. My teeth were destroyed by the time I was thirty and at this point, I have lost too many to think about. Anemia, which developed in my teens, has been a way of life, and boy did I get an increase in the affects of Anemia when I went vegetarian for five years. Little did I know that the very food I was eating to stay healthy was poisoning my body with excess gluten. You cannot make this stuff up.

The Shock of Celiac’s Disease if Huge and Overwhelming

So, when my youngest daughter got a new physician who ran a test and found she not only had the genetic markers for celiacs, her antibody test was high enough to warrant a biopsy. Yep, that was the week before Christmas. We did not consider it Merry. As an individual who does research on everything and was trying hard to save my slowly declining life force, was so terrified of the diagnosis, that I found I could not put anything into me. Little did I know this would force me to come off gluten immediately because when I went back on to food a week later, I found that the gluten no longer wanted to be in me.

no more gluten pleaseGlutenation is an odd thing. I had consumed gluten for years, it had degraded me horribly, but it never appeared to hurt me. Until I came off it and went back on. Then Oh My God, i am pretty sure a train ran over my abdomen about 1000 times. I found that New Years how much gluten hurt. It hurt alot.

I had a friend that we called the crazy gluten free lady. She would grill waitresses, make people feel bad, and in general took her troubles out on the world. So first and foremost, I was concerned of becoming a crazy gluten free lady. I mean it could happen.  So I read everything I could about the subject (including medical research from Johns Hopkins which looks like about 55% of the world population should never consume gluten). I learned a great deal.

I learned that Americans in general fail to heal more than any other nation on the planet. Manufacturers have placed gluten/wheat flour in just about everything. Yep, some packaged grated cheese has wheat added so it stays separate instead of clumping. It is in salad dressings, ice cream, soup and just about everything you can think of. I became quite grateful to the mother who served only whole foods and very little processed food – for a while there – she made her own bread.

We found as a family that doing it together made it easier – our whole house is a gluten free house which means – any meal we create is clean (unless you accidentally use amazing red wine aged in a cask in the recipe – then look out). So, if we eat at home, and we stay with the brands dedicated to proclaiming wheat/gluten presence. We heal very well.

intestinal damage from celiacs diseaseHowever, going out to eat, or to a friend’s house, or even family who try so hard, is where we began hitting problems. Gluten free, we found does not necessarily mean gluten free. To place the words gluten free on a package should mean that there is less than 20ppm of gluten present in the product. And while we at Divinely Gluten Free test everything in house that we create on standard Gluten Testing equipment, many others do not. Gluten really is hidden everywhere. Independent tests have shown that some ‘gluten free’ products are assumed gluten free – but can test at (yup this actually happened) have over 700ppm. That is right – 700ppm!!! it has happened. But it is an extreme case – and not the norm – thank goodness.

Dealing with the Shock of Gluten Intolerance

So, getting diagnosed is a shock to the system. Whether it is Celiac’s disease or Gluten Intolerance, the shock is exactly the same. You find out that everything you thought you can eat – you can no longer eat – nothing is safe those first few days. Here is what got us through:

  1. Smoothies – smoothies are fantastic – smoothies are healing – a little yogurt – some fruit (lots of fruit) a little veg if you like (my daughter loves a little kale/spinach/chard in every smoothie) some liquids and a quick spin on that blender and voila – a very healthy meal.
  2. Salad – we found Hidden Valley (for our ranch dressing) and Olive Garden dressing were both very dedicated to accurate labeling and neither use vinegar derived from wheat – Vinegar is a huge problem for Gluten Sensitives – we are told it is clean, but just because it is distilled does not mean it does not damage our already decimated bodies. Apple Cider, Champagne and Heinz white are about the only Vinegars we can guarantee are safe. DO NOT ASSUME Balsamic vinegar is safe – it is not – it is aged in barrels sealed with either wheat or barley paste – which then leaches into the vinegar.
  3. Barilla Pasta – This pasta is made of Corn and Rice, and it has a taste and texture like pasta. It is able to be reheated with no loss of texture or flavor.
  4. Tamari instead of Soy Sauce – opened up the world of asian cuisine again for us.. Allowed us to still have our flavored Tofu and our beloved Sushi!. Fried Rice is a pretty standard meal here too.
  5. Hannaford Market – Hannaford here in Albany, is quite progressive. They have signs up on every product that is gluten free. It goes through the entire store including the frozen section. They have a huge aisle in every store where they put just about every gluten free product. Amazing – I was happy to see Shop Rite – has a wall of Gluten Free food too – but they do not point out every product like Hannaford does – but every effort makes our lives better right??
  6. Zatarrains Flavored Rice – They have at least three varieties of flavored rice that is totally gluten free. They have a creamy parmesian that I can feed my family multiple times a week. We are very grateful!!
  7. Trader Joe’s Gluten Free Cinnamon Raisin Bread – we have tried just about every kind of gluten free bread out there. We have thrown a good amount of it out too. God Awful I believe is the phrase I would use – but Trader Joe’s has out done themselves with their Cinnamon Raisin bread – it is outstanding and truly satisfies our occasional need for toast.
  8. Avoidance – if it says it is processed on machinery that processes wheat – please stay away. I believe it is this that leaves us truly open to mystery wheat – or mystery gluten. If it says it is processed in a facility that processes wheat – call the manufacturer. I had a manufacturer that created gluten free trail mix (very hard to find) but it processed other things with gluten in other parts of the factory. Upon investigation, they took it very seriously, and they have a section of their factory dedicated to gluten free processing where no wheat of any kind ever enters the enviroment. We tried it at our own risk. I did not react.

The shock of going gluten free is very real. Alcohol, vinegars, salad dressings, ice cream, all can include hidden gluten. There are some great boards out there – Celiacs.org has a great community of gluten free individuals who have all been there before and they have both answers and awareness that helps us get through.

We at divinely gluten free know how difficult it can be to go gluten free – which means having your life turned upside down. It is no easy task, but as the awareness grows, so does the community around us. Be careful out there, but have fun too. It might seem like a life sentence and it kind of is, but, with time and awareness, the shock of the life we are forced to live becomes easier and easier. I may never be able to consume a McDonalds Sausage Bisuit again, but I can make one in my home that was simply wonderful – and had a great deal less fat.. We get there eventually. It does get better.

 

 

 

 

 

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