The test go on and on

The new Gastro ordered a ton of blood test for my daughter. He has also requested that she be allergy tested for a few things and wants her to be tested for all the behavioral illnesses that are greatly affected by Gluten.  We have yet to see her main pediatric doctor to have anything setup other then the blood tests.

Blood tests results roll in daily.  I knew that the test might come back flagged and half of the first set did so she will be watched for a more serious illness. When the second set came back low I was appalled.  I had asked for her Vitamin D to be tested because a year and a half ago I was told it was low. She was already on vitamins, we played outside as much as possible for sun, and we even made smoothies to try to boost it along with her iron which also stays low. I was told by the old base they didn't know what to do and as always nothing was done.  I was just a mother with to much time on her hands as far as they were concerned.  Now all this time has gone by and I can only wonder what else has happened to her body due to lack of treatment?

The doctors here acknowledge that she has not had proper treatment and are now trying to make up for that.  While I appreciate that it seems that so much more could be going on inside that little body then I ever dreamed of.  

I contaminated her *Heavy sigh*

So my child has been going through the melt downs, not able to use her words properly, and don't get me started on the "rage" or temper issue today.   As I keep trying to pack for the move she would be unpacking the one box I had not taped up (I had not taped it to give her something to do).  Then she would come at me again and for the life of me I could not understand why she was doing this.  I mean yes we are moving and she has her good moments but also her bad moments with that. This seemed like gluten though.

After each large box or tote I pack I let myself sit down until my back stops throbbing and as I sit here I notice I have had the screen door open all day.  The wind is blowing and anywhere else this would be a fine day.  Here with the grain elevators next to us I have been filling my house full of contamination.  A huge reason my daughter and I are moving not to mention the doctor's idea of treatment was for me to Google it.

Here is my question: What do you do when your child is contaminated?  Do you treat them differently or hold them to the same behavioral standards as always?

I used to try to cut my daughter more slack because the gluten does make a large difference in her everything from motor skills to personality.  I am now of the mind to think that is hurting her.  Her teachers can not say well she hit him because of the gluten.  The police will not say that about her.  Her friends are might understand some mood swings but only up to a point.

So what are your thoughts on this subject?  Even if you do not have a child who needs to be GF.  What is your opinion?

How many of you are still waiting for our miracle drug?

How many of you ever heard of the trial study being done on Larazotide Acetatate Found here without results? I myself am so very tired of waiting to find out anything.  I am tired of calling and emailing them only to have them push back the date or even better, they don't bother to change the date at all.

I really can not get through my head why pharmaceutical companies are not throwing money into finding a pill like lactaid if not one that could be taken daily.  I get that even if this is the "break through" to finding a cure we would not get it until the patents were up on the medications.  Both of my parents worked in a hospital, I worked most of my jobs in  medicine, and I have a fair share of my own health problems so I am not naive to how insurance works.  I am shocked at how much money they are passing up by not making something for this disease and how little attention this disease gets.  I mean if  you count the people just the people with celiac disease (including the ones the don't realize it yet) but don't include the ones that have a sensitivity or are GFing due to Many other reasons that is 3 million people. That is just counting this country alone. People in other countries are just as eager to have this as we are. Can I speak for everyone with any illness and waiting for a medication when I say we have Viagra now so we don't need any more ED studies.  I am not saying that sexual dysfunction is not important. I am saying that ED has been put at the top of the list the past few years and I think the rest of us would appreciate some medication too.

Now my personal opinion is that if they do ever bring this item to life it should be available to everyone that is GFing.  I don't care if they have a sensitivity, if they have one of the many diseases that is thought to be caused or made worse by gluten.  If they Have been GFing and want to take it why not let them? If you have not read the link or do not know anything about what diseases gluten has been linked to please take a look at this wonderful article Dr Mark Hyman Gluten: What you don't know might kill you  Please know in advance that he states that not all or any of YOUR problems are caused by gluten but that some peoples are.  It is an excellent article over all explaining why the Celiac disease and sensitivity is growing, why it is important if you have any gluten sensitivity, and why gluten is costing our health care system oodles of money.

I will be posting books and products that I recommended in each post so it is not overwhelming to get them all at once.

This pizza crust Is SOOO good IMO.  We have tried a few some worked and some did not.  I am not a big pizza fan at all but my little bit loves it.  This pizza crust makes me love it!  I would happily eat 3 pieces of pizza with this crust (leaving my family in shock) I would also be just as happy to eat the pizza crust plain.  In fact after I had surgery I just ate the crusts from my daughter's pizza for dinner not because no one would make me something but the crust were all I wanted.

Just blowing off some steam

As a military wife we all have to vent in someway and I have had the worst weekend so I am sorry but I am going to vent here.

I usually calm myself down by taking pictures, drawing, writing or some other craft. I have been taking pictures all weekend and today but that is not helping and I can't sit still long enough to draw anyone.  I just called the only person I can to go up the chain of command they are not there.  Of Course Not!!!!!!!  Why would a Patient advocate be there at 1:45 in the afternoon or any other time I have tried to reach one.  I know that talking to this person is just a step and will accomplish nothing but it is these stupid steps that I have to start taking all over again that make me so MAD!

I have played by all the rules for almost 2 yrs and it has gotten me no where.  Now The base wants to keep us after months of saying they do not have proper doctors to treat JUST ME? Why wait until after the date that the base that had our EFMP paper work was required to give us an answer to change your mind? I am throughly confused.  Your signature is on the paper work saying that this bas4e can not meet my needs and now it is on there saying it can.  No other explanation, That is so frustrating!  After all this time and with the doctors that fought with us to do the EFMP still willing to do whatever they can I would love to just sit down and cry.  Unfortunately I can't I don't have time.  I have to write down everything that has gone wrong since we got here so that my husband can write up his list of it and turn it into the patient advocate. Because that is the help we were offered.  I get to pack for surgery, try to make up enough for my daughter to eat for at least 2 weeks while my parents are here and make a check list of thing I need in case I have to move back with them.  We have to find out our follow on base now since we were not given one.

Little miss needs to be enrolled to EFMP (clearly it does not matter though). The one that up until now has not been able to see a doctor.  I have been told, "What you want me to do about her? I can Google just as well as you can." , "What am I supposed to do about her food buy it online if she needs to eat."  Well You my dear base will be paying for us to travel to see a doctor that knows about this disease.  In network out of network I don't care.  I don't care if it is over 300 miles and/or over night.  You will have to give the service member the time off to take her since my problems are fine for you to handle.  There is a law written saying you will help us with the food expense. Oh and in a week or so if my test comes back saying the same thing guess what you will have double the expense.  You will pay for my MRI's you will send me to see a specialist and I have NO clue where you will find those 2 at but good luck on that one.

I mean I will be having surgery on the 6th and I am going into that knowing that it is going to be more difficult then 98% of most of them they do and I can expect to be in the hospital longer.

What I don't get is why put us through this for months just for you to do this.  No one has ever heard of this happening.  This is Clovis though so what did we expect?  


I want to know why "patient advocates" come with the doctor to talk with me about something they are in the wrong about and when I move slightly they lunge toward me like a giant gorilla body guard needing to take out a mobster.  When I NEED a patient advocate they are all gone. Are they all out being body guards to doctors?  I can see that, I mean you tell me those things about my child and I will be upset.  I didn't hurt anyone because I can control myself.  Is it so bad here and happens so often that you really need body guards?