Sunday, February 03, 2008

Living Above The Thorns

As everybody is well-aware, my son Jay has Celiac Disease. It's a hard disease to understand and to manage. One has to be 100% compliant with the highly restrictive diet to keep the illness in remission. Many autistic kids are Celiacs and sometimes dietary control even brings the symptoms of autism into remission to some extent. Celiac disease is highly under diagnosed in the United States and only in the last few years has it come to light.
In the initial stages of Jay's diagnosis, it was literally terrible. Feeding him was a nightmare. I once stood in the aisle at Kroger crying in panic trying to figure out what to offer him to keep him healthy. Mind you, at this point I was in the baby food aisle looking for anything without gluten that I could stock up for my 15 year old son. That was how limited the selection for Celiacs was.
We heard of a store thirty minutes away with a limited selection of gluten-free goods and felt like we had found the Promised Land because we could purchase a box of cookies and some mediocre bread for him. The bread was made with spelt. Shortly after we discovered this manna, he started reacting (getting sick). Celiacs were found to be unable to tolerate spelt. He had developed an antibody in less than a month to it.
As we researched this disease we were told no wheat, bran, barley, spelt or oat. Rice, corn and potato were acceptable forms of carbohydrate. If this seems not so difficult, consider how many products contain fillers that are wheat-based. All canned soups and prepared gravies. Most cereals. Frozen foods. Many ice creams. Sauces, salad dressings and spices. The list of potential offenders is endless.
The result of ingestion of the forbidden grains? In the short-run horrific cramps and diarrhea, sweats, nausea, light-headedness, weakness, exhaustion. In the longer-run anemia, wasting, loss of muscle, weight-loss, acne, depression and ketone dumping as the body begins to feed on its own protein. It is a form of civilized starvation.
In the long-term picture non-compliant Celiacs develop lymphoma, stomach cancers and diabetes.
It is an ugly disease that doesn't seem so ugly on the surface.
It causes social isolation as most restaurants are not Celiac-friendly and in fact, the staff does not know which of their menu items might contain hidden gluten. Once Jay got violently ill 20 minutes after enjoying a cup of hot cider at Green Field Village. It was made from a dry mix that contained wheat. Unless the establishment can promise gluten-free or it is a family owned business that understands what we need, restaurant eating is out.
At social events Jay has to over and over explain his disease as people offer him food. He often ends up standing to the side and coming home starved because there was nothing acceptable to eat. At least, nothing he could know for certain was safe.
You do not realize until you lose the option how much food means socially and emotionally. The very thing that you need for survival can slowly and painfully kill you even as it separates you from the world.
And so, although I do not want to make this blog a tribute to the perils of the Celiac, I do want to mention occasionally that he is still here, needing healing and prayer. But that is not all that is to be said. I will not give the enemy the final word on this illness.
Jay works for Comerica Bank with some wonderful people who asked and listened and learned about his disease and so when he comes home after a pot luck or holiday celebration he always has stories about what people made and provided to assure that he was included. Lord, bless each of them and thank you for bringing him into their midst. You care for him through these people.
Two years ago, a resident at the hospital told me that in the United Kingdom, there was some research to suggest that Celiacs could eat oats as long as they were not processed in wheat-contaminated facilities. The intolerance for oats was now being thought of as a separate disorder. You see, most Celiacs have comorbidities like lactose intolerance, casein intolerance and apparently oat intolerance. Jay and I talked it over and he decided to test the theory one weekend (so he could be at home if he had a reaction) and guess what? He can eat oats! Oatmeal, oatmeal cookies! Believe it or not, this was a glorious day! And while I'm at it, let me thank the Lord that Jay is gluten-free but does not have any of the aforementioned sensitivities and no known food allergies!
Actually, I am inspired to write this because I have just returned home from our weekly trip to Special Diets. Our local Celiac specialized store. That's right. No longer do I read the labels of baby food jars hoping to keep his weight at the low end of normal. There is a store dedicated to his disease. Here we find pizzas and cake mixes and delicious fresh baked goods. Today we realized there are yet new products to sample, cream of mushroom soup, french onion soup and tomato soup. All of which can be used to make casseroles and recipes long lost to Jay. Lord, thank you for these people who were moved to open this establishment. Bless them and prosper them.
So now my home is filled with the wonderful scent of dinner cooking. A turkey breast with gluten-free stuffing which will be served with gluten-free gravy. After dinner we'll enjoy cups of green tea and gluten-free lemon sugar cookies. On Monday Jay can take in the gluten-free biscotti I bought today to enjoy on his coffee break.
I am overwhelmed at God's hand as he has not yet chosen to heal my son and yet provides abundantly for him as he lives with it.
For whatever disease befalls our lives...depression, diabetes, Celiac and a million others; God will provide a way to be victorious. Halleujah!

Click here to visit our beloved Special Diets shop!

2 Corinthians 12:7 To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me. 8Three times I pleaded with the Lord to take it away from me. 9But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. 10That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.


Trish said...

Thank you... for reminding us what Jay faces daily.
I will be sure to pray for him!

Louise said...

Will pray for Jay and thank the Lord for the Special Diets store.

Deb said...

I thought I knew about this disease.

I didn't know nearly as much as I thought.

Thanks for the enlightenment.

I'm continuing to pray for Jay...

God's daughter said...

Jay is so blessed to have a compassionate and determined mother! I pray that God will continue to bless your family as He has evidently done so already!!

Margie said...

amen! Thank you Jesus for loving us

Mrs. Mac said...

What a great blessing Jay has in having you for his mom ... and that store is a SUPER blessing too. Thanks, sara, for reminding your readers about Jay's struggles with his celiac disease. Prayers are offered up for him.

Pat said...

As a family we've pretty well managed to master cooking gluten free - after much experimenting...and my grocery shopping time has increased due to reading EVERY label for hidden gluten, but the social aspect is still a heartache. No pizza or stopping for a quick hamburger...its just to risky. Prayer never ceases, and faith for his healing only increases. God is able!!

Amrita said...

Its such a challenge for jay and you too. but the lord is good. So glad you found a shop where Jay can get his groceries. I really an sympathetic towards Celiacs. Never encountered anyone who has this illness.

Amrita said...

Its such a challenge for jay and you too. but the lord is good. So glad you found a shop where Jay can get his groceries. I really an sympathetic towards Celiacs. Never encountered anyone who has this illness.

Terry said...

Dear thing I know for sure is that the Lord knew who to send Jay to. You have really looked after him.
I know that there is a twelve year old little boy that comes to Sunday School that has this problem. I notice that every week while the other children eat cookies that there is always a little sealed Tupperware dish that one of the sisters has made a special treat for him...And it is labelled.."For Tommy"..
Good post usual! Terry

Blu-I'd-Blonde said...

I just stumbled on your blog. I was diagnosed with Celiac just last week. I also have diabetes, fibromyalgia, hypothyroidism after RAI treatment for Graves disease, peripheral neuropathy, GERD, and an antibody to striated muscle, Vit. D and B12 deficiencies, allergic to a lot of meds, etc. I keep wondering what's going to pop up next. I wish someone would find the key, or the one thing that invites all these allergies/autoimmune disorders to my body!

Jay and you are in my prayers. One Day At a Time, and This Too Shall Pass.

Ps. 31:1,3 "In you, O Lord, I put my trust...For you are my rock and my fortress;"