Tuesday-3/1

Just when I think that each day can't get more intense...

Poor Ash started off at LabCorp getting more blood drawn. This is for the dtr in Richmond and we are really looking forward to knowing the results...not just your typical blood tests.

MUCUS...yes, mucus! That is the key word for the day! The Lord knew I needed a breakthrough...all this suffering and no real answers. Well, today, as we were going thru the daily ritual of trying to get her shake consumed, she kept coughing up and wiping mucus from her mouth. This has been happening for weeks, really can't remember how long since much of this dilemma blurs together. I always thought that she had a cold (especially when we were in CHOP) or that is just what you get when you drink nasty feeding tube formula. So, I decided to email the UVA dietician and ask her opinion. She said that she had never heard of anyone complain of that before. So, back to researching and the MUCUS issue jumped out at me...

"Very simply, the Specific Carbohydrate Diet, which is grain free and lactose free, restores balance where "bad" intestinal microbes have been "allowed" to overgrow and thus create problems with absoption. When the "bad" microbes are allowed to overgrow, they produce toxins which iritate the lining of the intestines. The intestines, in an attempt to protect itself against the toxins, produce mucus which coat the surface.
Unfortunately, this mucus prevents the normal absorption, creating illnesses by way of "malabsorption." The diet re-establishs "good gut" flora, while starving the problem makers by eliminating the carbohydrates that feed these "bad guys." By starving the "bad" microbes out, the intestines are allowed to rest, heal, and re-establish the normal absorption of nutrients. It is important to note that the diet is often used in conjunction with medications."

Thanks again to my good friend Tessa for deciphering all this for me...what this is basically saying is that Ashley has some bacteria/yeast growing in her gut and that even though we have been eating gluten-free for the Celiac, we have been feeding the bacteria with things like starchy potatoes, sugary ketchup, etc. So, we will strictly follow the SCD, starving the bad bacteria, and anxiously await the lab results that will hopefully reveal the details of what is growing in her stomach. Then we can take medicine to kill it!!! If you're interested, here is the legal/illegal list for this diet... http://www.breakingtheviciouscycle.info/legal/legal_illegal_a-c.htm


THIS IS HUGE! It certainly doesn't mean that Ashley will be feeling better tomorrow. In fact, I had to contain myself today as I read that it can take months to get rid of certain bacterias and yeast. Eating by these rules will definitely speed up this process, but it will be a long road. So, definitely no cooking for the Cramers...but thanks for offers! We will eat not only gluten free, but have Ashley eat the SCD way for quite awhile. I will need to ask more questions, I'm not even certain at this point when/if you can come off of it?


BUT GOD is soo good...this is the first glimmer of hope that we've had since we got the Celiac diagnosis. We knew there had to be something complicating her situation, but after the scopes came back clear at CHOP, it just seemed soo confusing! This even explains her continued stomach pain which makes it hard to consume foods. It confirms what I thought all along, this is still very much a medical issue, not just psychological. I am grateful for the help that we've received at UVA and CHOP, but I can't speak highly enough of our dtr in Richmond! She is brilliant and has been focused on healing Ashley's gut since the beginning. She has had soo many insights, that I can't write them all. I truly believe that she is the agent God will use to bring Ashley's ultimate healing (and my friend Tessa:)


THANK YOU JESUS, we needed a breakthrough... please pray for quick lab results, Ashley's continued ability to consume the shakes, stamina for all of us and another good counseling appt tomorrow!!!


It was your prayers, the prayers of the saints, that brought this about...I have been struggling to even speak encouraging words, yet alone pray them, and your prayers have truly upheld us and opened doors of wisdom!!!


Please don't stop...
with DEEPEST gratitude,
Lori