NOTE: We all have a story, and we all learn from each other. We'd love to hear yours! Please send it to me :firstname.lastname@example.org And I'll post it here.
After her diagnosis, Amy and I set out to educate ourselves about Celiac. Realizing that Celiac is the #1 genetic autoimmune disease on the planet, Amy decided her next goal was the education of our family. Below is the email that she hoped would inspire brothers, aunts, uncles and cousins to get tested. It's long, but I didn't feel I should edit it.
March 9, 2005
Hi everyone! As many of you already know by now, I finally have a diagnosis of the "mystery illness". Just about a month ago I was diagnosed with Celiac Disease, which is an autoimmune disease, for which there is no cure, and can lead to serious "second degree" illness. I say "finally" because it has been such a blessing to find a diagnosis. I'm writing to you today because I have learned that this disease is genetic and I want to educate my family because you may be at risk. I am still healing and getting better everyday, I can finally eat without getting sick! I've even gained back 2 of the way too many pounds I lost over the past several months.
Here is a quick synopsis of what Celiac Disease is. In a nut shell, this is not simply a wheat allergy, which is often a misconception. A person who has Celiac Disease cannot ingest ANY gluten. That includes anything made with or from wheat, rye, barley or oats. The fact is that gluten is found "hidden" in many processed foods, drinks (no more root beer, it's in the malt), medications and other things. Gluten damages the villi, fine hairs that line the intestines, and the body identifies it as foreign then attacks the intestines. This is why "CD" (I prefer to call it just Celiac because I hate the fact that it is labeled as a "disease"), is an auto immune disease. The damage to the villi also causes malabsorption of vital nutrients. That is a very brief explanation. The bottom line is: as long I keep all forms of gluten completely out of my diet, my intestines will eventually heal and I will be fine!!!
So you may be wondering why I'm sending out this mass family e-mail. Well, I have been educating myself on Celiac, and I keep coming across the same advice: "if you, or someone in your family is diagnosed with CD, you should encourage ALL 1st and 2nd degree family members to be tested immediately." I cannot tell you how many times I have heard this. The reason this is so important is that CD is hereditary. Mom and Dad, I hate to break it to you, but one of you probably have CD also. By the way, you can carry the gene for CD (there are 2 that are linked to it) without ever developing it. You also need to have a "trigger" for the Celiac to kick in. On the other hand, you can also have CD, and be asymptomatic (no symptoms) but still having damage done to your villi. Since we don't know yet which side of my immediate family this was passed down from (no blame going on here!), I have included BOTH sides of my aunts and uncles in this e-mail. Please consider my diagnosis a blessing. If you all get tested and the results are negative, wonderful! What a relief! Then you will know you are healthy. If, however, you are tested and it is positive, just thank me for helping you to find out now, instead of having to go through misery like I did. I don't want to scare any of you, I just want to educate you. If someone has CD and it goes undiagnosed, lots of bad things can happen. Your health can go in a steady downhill spiral. On the flip side, if you catch it, and you adhere to a gluten free diet, you can reverse the damage and be fine! CD is only a bad thing if it goes undiagnosed. So please, for peace of mind, next time you are at the Doctor, please request (demand) that they do a Celiac Panel (blood work). If the Dr. gives you any grief about it, just let them know that it is a genetic disease and you have a close blood relative that has it! Most general practitioners (Family Dr's) are uneducated and unaware of CD, so you need to educate them. Most of them confuse it as a wheat allergy, which it is not.
I have attached a few stories from a wonderful book I'm reading from people who have, or have been affected in some way by Celiac. I recommend you print the attachment, as I had to copy the book sideways (unless you have the ability to turn your computer monitor sideways!). On the first page, just read the main paragraph. The following pages are 2 stories about families and the genetic link with CD. Please let me know if you have any questions. I'm not looking for pity, or sympathy, or people to jump on the "celiac bandwagon" so I don't feel alone. By the way, I don't feel alone, I have so much support with or without anyone else in our family being diagnosed. I want to reach out and potentially help my family members before anyone gets sick like I did. I love you all very dearly and would HATE to have any of you suffer like I did for so many months. Actually, as I put the pieces of my jigsaw puzzle life together, I have come to realize that I have been battling this my ENTIRE life. I just never had the "trigger" to kick it into high gear. I'm still trying to figure out what my trigger was. It could have been my shoulder injury, or even the stress of Aunt Val's and Grandma Doty's deaths. I just don't know that yet!
Here is a link to a wonderful, easy to read website: http://www.diagnose-me.com/cond/C341265.html. If you scroll down about 1/4 of the way, read the signs and symptoms. They may surprise you! Do any of these symptoms sound familiar: fatigue, constant headaches, bloating, on going diarrhea and/or constipation, depression, unexplained weight loss or weight gain, constant mouth sores, tooth enamel problems, constant joint and/or muscle pain, sudden lactose intolerance and/or wheat sensitivity.... The list goes on. My point is, not all the symptoms are limited to the intestinal tract. Remember, if you have CD and it is not diagnosed, the list of potential "second degree" illnesses is pretty bad. This is why I am urging you ALL to get tested ASAP.
I pray you all receive this willingly and with open arms. Again, please call or e-mail me with any questions/thoughts/comments. Also, if you have any recollection or know of any family history that may connect us to the Celiac link in our family, I'd love to know about it.
I love you all and wish all of you the best of health!
Lots of love,
Amy / Amy Cakes / Moonglow