Backstory

Some of you are jumping in right now, so I am going to do the best I can to give you the backstory. As time allows, I will probably reflect upon what we have learned along the way. I firmly believe that God will use this all to not only heal Ashley, but many others. Maybe it will be others who suffer from Celiac symptoms and don't even know it, maybe it will be those that suffer from rheumatoid arthritis or ulcerative colitis, who don't even know that going gluten-free will greatly reduce their pain. Many of these auto immune diseases travel together and are similar and can be greatly helped by being gluten free. For a long time, Mike's sister Pam has bugged Mike to get tested for Celiac (it's hereditary if I haven't said that yet) and he has been resistant. Well, as I described Mike's symptoms to the specialist in Richmond, her exact words were, "He has Celiac!" We have learned that is a "spectrum disorder" and you don't have to be as sick as Ashley to be suffering from the destructive power of gluten on your intestines, you actually might not have any symptoms! So, when the dust settles, Mike is next to undergo the scope and Ashley might have just saved him from dying of colon cancer or another intestinal disease by forcing his switch to gluten-free eating. By the way, if it turns out like we think it will, all those you eat out and travel with Mike will have to help keep him in line when he is eating out of the house:)


I will try to summarize Ashley's situation as best as I can. In Sept. she was really sick with a swollen lymph node under her right arm. The verdict is still out between the dtrs whether it was viral or bacterial, but we ended up with UVA Infectious Disease on several antibiotics, finally on clindamycin. After that time, she complained of headaches all fall and had some small weight loss, but kept plugging along. We have since learned that you are born with Celiac and it is triggered or "turned on" by stress, pregnancy, or extreme illness, as in Ashley's case. The dtrs wanted to put her on a chronic headache medicine amitriptyline, but I resisted, feeling that something bigger was going on. In December, things started to really go down hill. She had diarrhea (really seepage) for about 3/4 weeks which at first my dtr thought was a virus. Then we INSISTED on testing. He tested stool for C-diff and other bacteria and all came up negative. The diarrhea stopped and it then it was Christmas. After Christmas, I INSISTED again this this was not right. She was pale and weak and now rapidly losing weight. We then did blood tests for many things (lyme, anemia, leukemia, mono) and FINALLY got the Celiac diagnosis on Jan. 14th. We have been a totally gluten-free household since that date...even bought new pots/pans/colanders, etc. She also had two x-rays that showed she was fully impacted and they put her on a TON of Miralax. Even though we have been gluten free since 1/14, she continued to decline. They had her on Pediasures to sustain her, she has lost 14 pds since 12/15. At one point, they had her drinking 3 Pediasures a day and I thought I was watching her die. I kept reading everything I could and realized thru reading and Mike's sister that many Celiacs initially can't handle dairy and took her off the Pediasures and talked with several people and got her on Elecare. She continued to decline and starting eating just bites of food with the Elecare shakes. She has a very real association between food and stomach pain for many months and it has obviously caused her to not want to eat. Thru a wonderfully, helpful dear friend Tessa, we found an incredible specialist in Richmond. After spending hours with her, we really understood alot more and started to have Ashley use many helpful supplements to heal her "gut flora" as they call it, which was soo damaged. I firmly believe that this dtr could have helped Ashley entirely, but I think we got to her too late and Ashley was just too sick. We will continue to follow her plan and see her again after Ashley is stabilized. The specialist feels that we will not only restore Ashley to her original health, but even stronger because she believes that Ashley has been deficient in some nutrients for awhile. (more on that later, don't let me forget to come back to it, it is incredibly informative) We then did a round of steroids to reduce inflammation and increase appetite, but it didn't work. She also went in to the hospital for a day to receive IV fluids without much improvement. We were at the end of our rope and not feeling like we had any options. Then God did, what God always does, opened a door. Our dear old friend in West Chester, Jackie, knew of a woman who has sons with health issues, who had worked with a Dr. Verma at CHOP...a mom with Celiac kids of her own and a world renowned Celiac expert. Within 24 hrs I was sending her Ashley's records and emailing back and forth. We emailed for about 2 hrs Tuesday night and she had never even met Ashley! She was extremely helpful and we decided to get in the car first thing Wed. morning and drive to CHOP and enter thru the ER...if we made an appt we would have waited until a week from today and that was not an option!

So, here we are...my dear sweet Ashley has been thru soo much and I am soo proud of her, she is such a fighter!!! Gotta run...more later!


Is. 46:4 "I am HE, I am HE who will sustain you. I have made you and I will carry you, I will sustain you and I will rescue you."