Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Neurotransmitter Testing Results


ShannonA

Recommended Posts

ShannonA Contributor

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Takala Enthusiast

1. Eat gluten free.

2. Go to the health food store vitamin section, or even a drugstore or grocery, and read carefully the ingredients on a basic B complex vitamin supplement. You are looking for the words "gluten free." Same for a calcium/D/magnesium supplement. "gluten free."

3. Take the supplements after you have eaten something that agrees with you. Not on an empty stomach. If any supplement bothers you, don't take it anymore. A migraine means this is the wrong supplement for you.

4. Have patience, it takes the neurological damage some time to resolve, but, if you eat clean and supplement carefully, you will heal up. Don't overdo it and start taking a dozen different things all at once.

5. Sleeping. Best way to sleep is to tire yourself out with late afternoon exercise, then eat a decent meal with some fat in it, and don't do caffeine late in the day.

5b. Sleeping. Say, did anyone test your thyroid function ?

6. Search your day's routine for cross contamination sources, such as cosmetic lotions loaded with wheat, or pet foods and licking animals. Or other people's kisses when they haven't brushed their teeth yet. Some of us neuro people are very sensitive, and have to go to more ridiculous lengths to avoid gluten than a regular gluten- avoider. Sometimes, for example, I have to clean my steering wheel off because my husband ate a burger with a bun and he was driving my car as I ate my packed lunch. This is why I keep a spritz bottle of water, and a roll of paper towels in the back, it's not just for the mirrors. I try to keep exposure to a minimum, because I believe it has a cumulative effect over the day.

ShannonA Contributor

I have tried so many vitamins and have reacted to all except liquid geritol. There is always corn, soy, or lactose or something else in them that I react to. I haven't found any that do not have those somewheres in the ingredients. The last one I bought was Country Life vitamin B comlpex and had achy flu like symptoms/migraine for the 4 days that I took them. It's really crazy when I think about it. I did find a magnesium that I could tolerate and I drink a protein shake with lots of vitamins by Natures Sunshine. I've been on that 6 months. Should the neuro transmitters levels increase being gluten free? I am SO praying for a miracle :)

GottaSki Mentor

Your body can not produce neurotransmitters without amino acids that you acquire from your food. Celiac Disease disrupts this process because your digestive system is not properly breaking down nor absorbing food.

As your digestive system heals from removing gluten you should begin to absorb nutrients better which will allow your body to breakdown food into the amino acids needed to produce neurotransmitters.

You mention eating soup and fruit. Do you have a sufficient amount of protein in your diet. It is difficult to get all the essential amino acids without meat - especially if you are having trouble with grains and legumes.

Were the supplements you were trying to take amino acids? I take amino acid supplements to help produce nor-epinephrine - the lack of nor-epinephrine is one part of the fibromyalgia pain puzzle. I've had good luck with "Source Naturals" brand as far as being Gluten, Dairy and Soy free -- if you can't tolerate the supplements you were given, perhaps you can find out which amino acids were in them and purchase a different brand that you'd be able to tolerate. There are also supplements that have a combo of the essential amino acids - I don't take those anymore, but I think I used "Country Life" - any brand that doesn't contain your intolerances should be fine.

Good Luck :)

ShannonA Contributor

Your body can not produce neurotransmitters without amino acids that you acquire from your food. Celiac Disease disrupts this process because your digestive system is not properly breaking down nor absorbing food.

As your digestive system heals from removing gluten you should begin to absorb nutrients better which will allow your body to breakdown food into the amino acids needed to produce neurotransmitters.

You mention eating soup and fruit. Do you have a sufficient amount of protein in your diet. It is difficult to get all the essential amino acids without meat - especially if you are having trouble with grains and legumes.

Were the supplements you were trying to take amino acids? I take amino acid supplements to help produce nor-epinephrine - the lack of nor-epinephrine is one part of the fibromyalgia pain puzzle. I've had good luck with "Source Naturals" brand as far as being Gluten, Dairy and Soy free -- if you can't tolerate the supplements you were given,

perhaps you can find out which amino acids were in them and purchase a different brand that you'd be able to tolerate. There are also supplements that have a combo of the essential amino acids - I don't take those anymore, but I think I used "Country Life" - any brand that doesn't contain your intolerances should be fine.

Good Luck :)

Yes I eat chicken with every serving or fish depending on what kind of soup I made. Plus the protein shake, I know that's what has gotten my mornings to be the best part of the day. So glad to know all this info, thank you so much! I'll compare the supplements he gave me to see what amino acids I need. Thanks!
GottaSki Mentor

Yes I eat chicken with every serving or fish depending on what kind of soup I made. Plus the protein shake, I know that's what has gotten my mornings to be the best part of the day. So glad to know all this info, thank you so much! I'll compare the supplements he gave me to see what amino acids I need. Thanks!

Great! Sounds like you should begin improving - unfortunately it can take time - hang in there :)

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      nothing has changed

    2. - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

    3. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

    4. - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

    5. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.