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

Results Are In

ShannonA

Recommended Posts

ShannonA Contributor
ShannonA
Posted

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

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

Celiac.com Sponsor (A8-M):


frieze Community Regular
frieze
Posted

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

I would take your whole home gluten free.  And neuro problems are usually the last to clear, and the easiest to bring back.  So a gluten free home may be nec. for your well being.  Try an elimination diet.  Good luck

  • 1 month later...
175comet Rookie
175comet
Posted

I too have very similar neurological symptoms and tested negative for celiac. But I've been 95% better on the gluten free diet. I'm on an elimination diet to determine other food intolerances. What I find is that my neuro symptoms come back if I eat something I'm intolerant of. I had no ideas the nightshades were part of that (tomato, red pepper). So could there be something else in your diet that keeps the symptoms lingering?? It is a very long process figuring out the other foods, but it does work. So far I get symptoms with: prunes, vinegar, almond butter, dairy. Soy, corn, nightshades. Vertigo and tingling seem to be the most common side effects (and bloating!)

Archived

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

Go to topic listing

  • 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. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      20

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    2. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
    3. knitty kitty
      - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      20

      My only proof

      @Jmartes71, I went to Doterra's site and had a look around. The Doterra TerraZyme supplement really jumped out at me. Since we, as Celiacs, often have digestive problems, I looked at the ingredients. The majority of the enzymes in this supplement are made using black mold, Aspergillus! Other enzymes are made by yeast Saccharomyces! Considering...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Additional Concerns
      2

      Gluten Transfer from Biodegradable Tableware: What a New Study Found and Why It Matters (+Video)

      Thanks for mentioning this, and here is an older article on the topic:
    5. Scott Adams
      - Scott Adams commented on Scott Adams's article in Gluten-Free Grains and Flours
      18

      Cricket Flour Makes Really Good Gluten-Free Bread

      Your concern about certified gluten-free cricket powder is completely valid, as cross-contamination in both feedstock and processing is a real issue. Currently, the availability of certified gluten-free options is limited, but brands like Chapul and Entomo Farms, which I believe have offered products processed in dedicated facilities and labeled gluten-free...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,543
    • Most Online (within 30 mins)
      7,748
    Jeanette K.
    Newest Member
    Jeanette K.
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
    • lmemsm
      Supplements for those Diagnosed with Celiac Disease

      By lmemsm · Posted

      I've used magnesium taurinate and magnesium taurate vitamins.  Didn't notice much of a difference when I used them.
×
×
  • 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.