The test results so far for me

I know you are all dying to know. lol  The Endoscopy went ok.   They found a hernia in my esophagus, that I have IBS,  the parts of my intestines and stomach that are paralyzed are not getting much blood, and they had to take extra biopsies.  Depending on what the emptying study shows more paralysis  is whether I will have an emergency appointment or he will fit me in to go over everything. His words not mine.  I have been vomiting and had a lot of pain since the Endoscopy which I never had before but other then that no worries. I have the test next Thursday so I guess sometime after that you will hear the rest of the results

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.  

The new doctor

I have to sing the praises of Michael K Davis Jr, MD at Nemours Children's Clinic in Pensacola FL.  He has a great bedside manner and is wonderful with children (which helps seeing that he is a peds doctor).

He asked what was going on and what I wanted to accomplish from the appointment. I of course said a diagnosis. lol  I had her previous paper work sent over so he already knew what it said and he was honest with me. Right now they do not have any other test that will give us one. From all of the test he has, all of the information he has received from me he can try a few more things to rule out other things but no matter what she needs to stay Gluten free for the rest of her life period.  I walked away from the appointment glad that I was doing the right thing for my daughter and praying that the world as whole will come to learn more about this disease and all the ones related to it so that it might be easier for future generations.        

We are going to see a new Peds Gastroenterologist

The last time we saw one we had to travel out of town to see him. So we were allowed to have one visit with him prior to the biopsy and then the biopsy.  The diagnosis left a lot to be desired.  After all the time that has passed and all the things I have had to learn on my own I am going in prepared (or as prepared as I can think up).

I won't lie and say I don't hope that he says oh there was some mix up in the tests and she really has this.  All she has to do is take a pill and she will be fine from now on.  Back in reality I know that when she comes in any contact with gluten there is no hiding the fact it changes her.  I am still hopeful and nervous all at once.

Wish me luck!

2011/2012 Gluten Free and Allergy Free Art Supply List | Adventures of a Gluten Free Mom:

'via Blog this'

She has a great blog and you should check it out while you are there but this particular post can save you a lot of time.  I am buying Stamps and Gluten free ink for school at the moment and just bought Glutent free play-dough or Soy-yer Soy-Yer Dough 6 Pack Gift Set    last week.  Hope this saves you guys some time looking everything up.          

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?

Leal's in Clovis NM is VERY Gluten Friendly!!!

We  went out for Mexican food tonight and were overjoyed to find out how helpful and friendly  http://www.lealsmexicanfoods.com/ Leal's Mexican restaurant on Prince St was.   We normally ask for a plain chicken breast or hamburger with cheese (even though she is lactose intolerant we let her have it once in a while).  We tell the restaurant that she has celiac disease and explain what she can not have.  We ask them to cook the order on tinfoil for us to make sure no contamination takes place.

Leal's manager came to the table to let us know that most of the meat get marinated the night before but she would be happy to check and see if they had non marinated meat for us.  They did have a few pieces YAY!  She was happy to let me look at the ingredients on the marinade bottle if  they did not have any meat without marinade.  They also have a gluten free menu now which was something I had not thought to look for.  They even covered her plate with tinfoil for her to eat on.

When we go again, I'll probably call ahead and make sure they have a chicken breast that has not been marinated before we go-- just in case this post sends a ton of gluten free ppl to eat there the same night we do, lol.

Overall the experience of dining Gluten-free at Leal's was a wonderful one! I would have to give them 5 out of 5 stars.   

My search for the lactose intolerance and celiac answer and a bit extra

*** Note as with all medical information I share on here please ask your doctor.  I am a mom and do not know you.  Your doctor knows all your medical history and will know how any information will pertain to you*****

My daughter has lactose intolerance and I have been looking around to see if there is any possibility that she will grow out of it since it can come with the celiac disease or if she will continue to have it forever.  I am happy to say all the research that I have read has lead me to believe that there is a chance that after being on a strict GF diet for a year to two years she could grow out of it.  There is no clear answer but I did not expect one.  She could have the LI from the damage done to the villi and micro villi in her small intestines.  Once they heal (in a year -2 years) she can be retested and might be able to handle the process of breaking down lactose once more.  She might have inherited the genetic  problem to develop a shortage of Lactase from us.  

I thought anyone with CD or loved someone with CD would be glad to hear that there is hope.  Also if you have CD and have never been tested you may want to consider it.


I went to the doctor the for the "results"   So now my daughter and I both have appointments for  gastroenterology.  I also have a few other appointments I will keep you posted on.


I can't wait to get my hands on these!  I want to let my daughter try it for cereal but I also want to try making "rice crispy treats"  out of them.  I can't wait to see her face when she tries one for the first time.

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.

How GF are you?

I tried to take the genetic test before my husband and I were married.  My insurance company and the only hospital that was doing them stopped the year prior to me calling.   Would we have risked marriage if we would have know what all could of gone wrong if our genes mixed?  That will always be unknown and I am glad because I Love my little bit to pieces.

Our parenting technique and the view on GFing are 100% different though.  I am still at the extreme safe end. If I can't find on the package that it is GF, find on the web that it is or is not GF, or if I call the company and can not get a complete answer from someone that sounds knowledgeable  on the subject then I will not give it to my child.  If they say that it is manufactured in a company with other products they may contaminate it To me the product has a giant red flashing light on it saying don't eat.

My husband is much more relaxed.  He will read the label and as long as no wheat products are mentioned he is good to go.  Being made in the same company as another product his thoughts are what are the chances of contamination and if it is it still has to be small.

So anyone else have an opinion?  I know that I will relax as I learn more .  I had planned on buying the shopping guide come the new year.  I am no longer sure I can wait that long.  I want to shake my husband every time he feeds her something I have not approved.   I can understand his frustration with me needing to approve what she eats.  

I feel my mother bear come out saying these years are still so important and they will impact the rest of her life.  We have not healed her intestines up yet why are you putting them at risk again, you can give her cancer, cause her to have miscarriage after miscarriage or many other fertility issues.  I just want to hit my knees begging , screaming , and pleading to anyone and everyone that tries to give my child food.  I want to ask the world to wake up because America has the most Celiac's so why can't I go to a fall fest without having to explain to my child that no she will never be able to go on a hay ride.  That I am not punishing her, she is not bad , and she will not be able to do it when she grows up.  A little piece of my heart breaks usually when I have to tell her those things.  Recently I am wondering if little pieces of my soul are not starting to as well.

I get asked what gluten and Celiac disease are almost everyday

I really don't mind being asked.  I would rather have someone ask me then be afraid to ask me fearing it was rude.  IMO It is not rude!  No one can know everything in this world.  Pretending that you do know what something is when you don't can get someone hurt. So I appreciate it when another parent takes the time out of their life to ask what gluten is or what things she can or can not have.  I think it would be rude of me not to explain what they are or become upset when asked.

I would like to give a good explanation here so people can always come here to figure out what it is.  I hope to give you several links to read and explain in my own words as well.   Please feel free to post any comments of your own.

Gluten, in its most simplest definition, is a kind of protein that tends to exist in wheat, barley, and rye among other carbohydrates. Gluten comes from the Latin word Gluten meaning "glue" .  It gives elasticity to dough, helping it to rise and to keep its shape, and often giving the final product a chewy texture.


It is important to know that Food is not the only place that Gluten is found.  Gluten can be in: Soaps, Shampoo, Alcohol, Pet food, Pet Shampoos, Make up, and many more If you plan to have someone in your  life regularly and want close contact with them don't be offended if they ask what make up or any other items listed you use.  Some Celiacs suffer from more severe or different sensitivity then others. So they may not be bothered at all.  Mine daughter is bothered by skin products though so it is something I do have to ask or I send soaps and shampoos with her.  I have even brought our own laundry and dish soaps with us while traveling to keep this to a minimum. 


Some helpful sites to understanding more about gluten 

• How gluten is used
• gluten what you don't know might kill you

Some helpful sites if you are having someone with Celiac disease or anyone eating GF over and want to know what they can and can not have 

• http://www.csaceliacs.org/gluten_grains.php

Understanding Celiac disease better


Celiac disease is a digestive condition triggered by consumption of the protein gluten, which is found in bread, pasta, cookies, pizza crust and many other foods containing wheat, barley or rye. If you have celiac disease and eat foods containing gluten, an immune reaction occurs in your small intestine, causing damage to the surface of your small intestine and an inability to absorb certain nutrients. It really destroys the  villi—the tiny, fingerlike protrusions lining the small intestine. Villi normally allow nutrients from food to be absorbed through the walls of the small intestine into the bloodstream. Without healthy villi, a person becomes malnourished, no matter how much food one eats
Eventually, the decreased absorption of nutrients (malabsorption) that occurs with celiac disease can cause vitamin deficiencies that deprive your brain, peripheral nervous system, bones, liver and other organs of vital nourishment. This can lead to other illnesses and stunted growth in children.

No treatment can cure celiac disease. However, you can effectively manage celiac disease through changing your diet.


Along with Celiac disease comes many other problems so please ask if there are any other dietary restrictions. 


  


FRUITS:
All fruits are gluten-free (unless they have been combined with or are packaged with gluten containing ingredients)
BEVERAGES:
water, water, water, 100% juices, milk, tea, coffee, and water :)


VEGETABLES:
All vegetables are gluten-free (Be cautious of floured or breaded vegetables, or those in sauces) 

Please note that you can buy all the expensive food you want for when your friends come over but if you put the GF bread into your toaster that you use for your bread It has now been contaminated and can NOT be eaten.  If you are wanting to use p-nut butter buy a small new jar for them to use so that the crumbs from your bread are not in it causing the food you cooked to be contaminated.  

It really is not that hard once you know what you are looking for.  Many items can be bought at your local store that are GF.  Many people that have Celiac disease bring food that they can eat and that others will like as well when they go to public functions.  Just keep in mind to use the utensil for their food only and not mix and match.  I never show up somewhere expecting people to cater to my child's needs.  I am always grateful if they do but I think it is rude of me to EXPECT that of people.  I also bring enough of what I bring for my child for the others that will be there and I try to explain the handling procedures of the food so no cross contamination will take place.

Links to different safe food lists. Also just a good learning site in general.


There are more GF link listed on my Links page. Feel free to contact me with any information or questions that you have.  I am not a doctor and can not diagnose you sorry.  I am a mom with a blog trying to share her knowledge and make life a little easier for someone else.

Celiac Disease

I am looking for all information on Celiac disease and gluten free diet or recipes. especially ones that are dairy free. Any and all links would be great if you have them. 

My daughter has something in the family is all the doctors can tell us at the moment.  I am really confused as to why they are going from specialist to specialist with her blood.  Her blood work came back with high numbers but  something is still not making sense is all they keep telling me. Her blood and the blood work are with the top immunologist and hematologist in the state at the moment.   I am sure it will all work out fine it is the waiting that is always the worst part.