ShannonA

Well I got my DNA results and I do not have the celiac gene so that does rule out celiac but I do have 2 gluten sensitive genes:

 

HLA-DQB1 Molecular analysis, Allele 1  0501

HLA-DQB1 Molecular analysis, Allele 2  0503

 

Serologic equivalent: HLA-DQ 1,1  (Subtype 5,5)

 

Although I have had many symptoms before going gluten free, to the extent I could tend to my children, many symptoms have cleared up except for the headaches/migraines/feels like brain on fire.  I have been gluten free for 11 months, corn/dairy/soy/nuts free for 8 months.  I still have neurological symptoms and can't tolerate anything except whole foods and 1 fruit, apple.  I actually got head relief when I had a stomach virus because I didn't eat for 3 days. From what I researched, this lab result with a DQ 1 showed that neurological  symptoms are likely to occur.  What specifically got damaged, my central nervous system? I am still on pain meds around the clock, injections of muscle relaxers and anti-inflammatory, why is it not better yet? Is it reversible damage? None of my doctors believe this to be the cause because I don't have celiac disease but if I eat anything that I am not tolerating now I go back to my previous symptoms, dizziness, fatigue, feeling out of my body, walking off balance, numbness in my legs and the feeling of inflamed brain on fire.  Why is this still occurring if I have been off of gluten for so long? Am I considered Non-celiac gluten intolerant? Also my daughter was tested and has 1 gluten sensitive gene and 1 celiac gene. We thought for sure she got the celiac gene from my because my husband has no symptoms of anything.  Come to find out she got the celiac gene from him, not me.  Should he go gluten free also? Thank you

So I have now been off of gluten for 10 months and 8 months ago I had to get off of corn,soy, dairy.  That said my diet has been pretty much chicken, vegetables, and 2 fruits (apple and banana).  I also became salicylate sensitive which made eating anything else impossible.  As of last week I am not tolerating grains.  My belly started getting distended in October with certain foods but now it's distended with anything I eat.  I still have daily headaches/migraines.  I am on pain meds around the clock, anti inflammatory injections and muscle injections at night due to the horrific pain in my head.  I now notice if I eat grains my muscles and bones hurt to the point I don't want to get out of bed and the fatigue is atrocious.  Also grains have started making my mind feel crazy.  It sounds so weird but it's the truth.  It's hard to explain but  there is a direct relation with my intestine, grains, and my mind.  My pain management doctor does not believe this is the cause of any of my problems.  Although out of the 25 or so symptoms I had before going gluten free have resolved, I still have a few, all neurological.  WHen I go to the ER, Tordol shot is what takes away the pain, it's an anti inflammatory medicine.  My doctor started me on Cymbalta this week and I felt like I was on serious drugs and could not function.  I literally could not drive on the 4th day.  Will this end?  Why does it seem I am not going up hill?  I have only drank water and coffee for 10 months also. My biopsy showed nothing and blood test negative for Celiac disease although he only took 2 samples.  But it wasn't until I got off of gluten that I started to get better, bed ridden for 1 year and near death, really.  So why the grains all of a sudden? I just don't understand.  Thank you for any input!

 

 

Well the last couple of weeks I've noticed when I eat watermelon my abdomen blows up to make me look 8 months pregnant. I haven't figured out if it does with the bananas and apples, those are the only fruit I am eating at this point. I am now on week 9 of homemade soup diet with veggies. I started the GAPS diet but have never been able to move on to new foods, I react with horrible symptoms. Last week I tested Ghee on my wrist and I broke out in an itchy rash so no ghee for me. I am skin and bones bc I was not big to begin with and then when my belly blows up it looks even bigger due to my size. I tried a childrens probiotic by Nature Sunshine and had a headache all day which led to a migraine. So probiotics are out. Anyone know what could be going on? I have been eating these fruits forever and just now having distention, it's so uncomfortable. If I get off of fruits my only nutrition is veggies and chicken and duck.

My Naturopath completed a neurotransmitter test on me and I just got the results in. Of the 14 neurotransmitters tested only 4 are functioning properly. The ones that are not are serotonin, 5-HIAA, tryptamine, GABA, PEA, tyramine, dopamine, DOPAC, norepinephrine ,epinephrine. He stated that this is very bad and he does not know how I am even functioning. Really. I said only by the grace of God. He also said now that we know I am gluten sensitive, I believe celiac too even though test was negative, that it most likely did attack me neurologically, hence all of my neuro issues. I also have tingling in my face and sometimes numbness on my lip. I questioned that and he said yes from nonfunctioning transmitters. Still daily head pain but not the on fire brain feeling unless I eat anything except soups and 3 fruits. Also he said there is no way I could sleep through the night with these results, I haven't been able to sleep without meds in 1 1/2 years, So the answer is to get on some supplements and I would see results within a month but start having more energy in 1 week. Here's the problem.....I can't tolerate the supplements. I get flu like symptoms along with a migraine. I have been on a soup & veggie diet for 6 weeks and 3 fruits only being able to tolerate just that. He said that is most likely due to the transmitters being all out of whack. I really didn't want to have to go to a medical doctor, but should I bring these results and is there meds that can increase all of these transmitters? Side effects are horrible but I finally have answers now I want to be fixed! I had no idea all the damage that could come from gluten, it's scary. I'm just so confused as to what to do.

I got my olderst daughter's results from Enterolab in just now and here they are:

Gluten Sensitivity Gene Test
HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0503

Serologic equivalent: HLA-DQ 2,1 (Subtype 2,5)

It explains that she got an allele from each parent and that gluten sensitivity or celiac disease may be more severe. Can someone interpret this a little more clearer for me? She has no symptoms except for migraines since 6th grade. My husband has NO symptoms of gluten intolerance whereas I have been very ill the last 2 years and now know that gluten was causing the havoc in my body. I barely got out of bed for a year but I am now in the healing process. So if my daughter continues to ingest gluten, can celiac disease devolop? Thanks for input!

Also should I gradually get her off of gluten, she is a teenager and this will be a real, real disappointment to her. It actually will be very difficult for her.