#19873
Stacey Phelps
Stacey Phelps
Participant

Hello. I’m new here and its not clear how I post a new thread so I will start here. First, thank you Dr. Osborne and Gluten Free Society for developing a space where we can learn and exchange information in a clear manner without the run-around from traditional doctors.

I will start with a question and go on with a bit of my history. I have been genetically tested for non-celiac gluten sensitivity through Enterolabs. My results were positive: HLA-DQB1 Molecular analysis, Allele 1 0303 and HLA-DQB1 Molecular analysis, Allele 2 0604. This is what the explanation was: Interpretation of HLA-DQ Testing: Although you do not possess the HLA-DQB1 genes predisposing to celiac disease (HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have two copies of a gene that predisposes to non-celiac gluten sensitivity, in your case HLA-DQB1*0303 and HLA-DQB1*0604. Having two copies of a gluten sensitive gene means that each of your parents and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene, and the resultant immunologic gluten sensitivity may be more severe.

My questions is with regards to testing for my kids. First, is it necessary? Second, is there an advantage to using the test Dr. Osborne uses over Enterolabs? Will it tell me something different? I have no idea how I will take my kids true-gluten free…they don’t eat vegetables and live on carbs and dairy. I realize I created that monster but until I get myself healthy, I don’t feel like I have the emotional or physical strength to take on that battle. (I am seeing my Dr today to get results from Lyme testing; I know I’m MTHFR Heterozygous and I’m dealing with remotely caring for aging parents). My kids are 7 and 10 and strong willed. Any suggestions or thoughts would be appreciated. Sometimes an outsiders perspective helps. BTW, my husband is not going to change his diet anytime soon so I probably won’t get his support unless I do show him some medical test that says they shouldn’t eat gluten. Guess I answered one of my own questions.

This all started for me when my mother was diagnosed a few years ago with Early onset Alzheimers (which I believe is an inaccurate diagnosis). She is 66 yo. Her dementia/confusions comes and goes; she suffers from:
RLS
Arthritis
Depression/Anxiety
Chronic digestive issues
Muscular Skeletal issues
Dizziness
Chronic Insomnia
Pulmonary Anyerism
Fibromyalgia
Chronic Fatigue
Alcoholic tendencies & smoker in the past & recent past
Dementia
Major hormone issues
TIA’s
…and the list goes on.
Doctor after doctor keep pushing pills on her with no answers; eventually she got on so many meds she end up hospitalized after she attempted suicide which I attributed to drug interactions & side effects. She is now down to just a few meds.

So…in an effort to help her I began doing research, read “Grain Brain” and “Wheat Belly” and have since gone on to read what is seemingly the entire internet as it related to gluten. That is how I came to learn that I was gluten sensitive. I have started to see myself heading down the same road so I wanted to nip that in the bud. Mom has not changed her diet because she and my 80 yr old father who cares for her, simply don’t get it. They are still searching for some magic pill and think the doctors have all the answers. They are broke and on a fixed income so there is not much they can do in the way of alternative medicine to get help and since they won’t make changes off of my recommendations, I guess I have to wait until they desperate enough to want to listen.

The MTHFR thing comes into play because as I went over my history with my Dr. they linked my brother’s bi-lateral cleft lip and palate and my chronic depression with this genetic mutation. So now I take an activated form of Folate (as opposed to my mother who takes her daily Folic Acid as recommended by her psychiatrist who knows nothing about MTHFR).

So that is some of my history and I am thankful that I can work with a holistic doctor that will take me seriously as it relates to my diet. Thanks in advance for your comments and support and for letting me rant.