Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,345
    • Most Online (within 30 mins)
      7,748
    Nana3
    Newest Member
    Nana3
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      This Roller Coaster Ride Needs to Stop

      By Ginger38 · Posted

      Thank you for your kind words and encouragement. This has been the most difficult and confusing journey to date for me, and it has been going on since 2015/2016. The last dietitian I met with works with a lot of celiac patients, so I was excited, but she just thought I should be able to eat gluten free (whatever that may be) stay in a carb count and my diabetes would not be affected. WRONG. I have tried this several times since I crossed over to full blown diabetes, because I get so sick eating gluten that I end up getting frustrated and go back to gluten free to get some relief. I have a continuous glucose monitor so it is easy to see how my body and glucose are reacting to foods. Unfortunately my suspicions are correct. When I eat gluten-free foods -like Schar breads or rolls, or the crackers, including when I stay in my carb limit,  my sugar spikes and just sits there.. .it won;t even come back down for hours. So in the end it drives my overall glucose and A1C up. I can't really even eat oats or things like that. Cereal is very iffy. Gluten free pizzas, gluten free nuggets, and things like that majorly spike my sugar as well, again, even when staying in my carb limits. I already feel so limited on foods because of the diabetes so of course, when medical people and family and friends are like just go eat gluten, I have been like oh okay - maybe it is all in my head and hey its way cheaper to eat gluten and tastes wayyy better...and then I end up right back where I am today,. MISERABLE, just laying around in pain, spending all day in the bathroom, having accidents related to diarrhea, constant tremors, heart rate issues, chest pain etc. and I forgot about these terrible painful canker sores in my mouth right now, I can't even hardly eat or drink or swallow they hurt so bad.  Not being able to feel like I can eat gluten free is extremely frustrating. I had some great recipes and substitutes for things, and was at a decent place with all that, until the diabetes went crazy out of control, so gluten-free living seems to not be an option for me. However, eating gluten when I truly still believe I am celiac -just misdiagnosed- does NOT seem like a wise idea. I am honestly scared  I am going to get deathly ill from all this or something. I even asked my GI doctor, more like begged, if he would please just label me as celiac and tell me I was for sure (like he did before) so I could get the support I truly need. No such luck. He just keeps saying but your tests were okay 🙄 My family went to an arcade and pizza/pasta buffet yesterday - obviously I didn't want to miss out spending time with my family and my mom spent money paying for my meal/buffet - and I was hungry, so of course I ended up eating pizza and pasta that was not gluten-free, because they don't offer any gluten-free options, and then my brother and others want to ask can you eat that or are you supposed to, and I am like well no, and I will definitely pay for it. They think it is hilarious when I say things and then make comments, like how it is so fun to go out with me especially places like that because I am not supposed to eat but I just do it anyway and say I will pay for it 😥 just seems everywhere I turn it is pointless and I have no support 
    • Wheatwacked
      Am I celiac or not?

      By Wheatwacked · Posted

      Just like you cannot be a little pregnant, you cannot be a little Celiac.  Here is an article I found that explains what the numbers mean. Are You Confused About Your Celiac Disease Lab Results? Here is another article about the non traditional symptoms of Celiac Disease. What Are the Symptoms of Celiac Disease? I've been taking 10,000 IU vitamin D3 since 2015.  My blood tests every 3 months for 25(OH)D have never gone above 93 ng/ml, even in the Florida summer.  70 - 100 is the body's natural homeostasis level. Surge of information on benefits of vitamin D "“When combined with supplemental magnesium, vitamin D repletion has dramatically changed my practice,” said McCarthy ... “There are now very few patients with infections, and asthmatics who are coming off medications are staying off of them. ... A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects; ... Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;
    • somethinglikeolivia
      Am I celiac or not?

      By somethinglikeolivia · Posted

      Interesting! Recent labs I had done did show that I was low in Vitamin D so I just began supplementing, it’s hard to tell so soon but it does seem to have a positive affect! Thanks for the input!
    • Scott Adams
      This Roller Coaster Ride Needs to Stop

      By Scott Adams · Posted

      Your frustration and exhaustion are completely valid, and many in the celiac and gluten-sensitive community can relate to the overwhelming confusion you're experiencing. You’re being pulled in different directions by medical advice that seems contradictory, and it’s heartbreaking that your efforts to feel better are met with so many setbacks. Positive TTG IgA antibodies are not something to brush off, especially when combined with your long list of debilitating symptoms that clearly worsen with gluten exposure. A negative biopsy does not necessarily mean you don’t have celiac disease—it’s entirely possible that damage was missed, especially since biopsy results can vary depending on where the samples are taken and how many are collected. It’s also true that celiac disease exists on a spectrum, and many people have serious symptoms and immune responses without yet showing classic biopsy damage. Managing diabetes alongside suspected or confirmed celiac disease is incredibly tricky, especially when healthcare providers don’t work as a team to support your whole health. You shouldn’t be forced to choose between controlling your blood sugar or protecting your gut and immune system. A well-planned gluten-free diet can be both nourishing and diabetes-friendly, especially with guidance from a knowledgeable dietitian who understands both conditions. It’s also deeply concerning that your symptoms—neurological issues, severe fatigue, GI distress, rashes, and more—are being dismissed. You’re not just describing discomfort; you’re describing a level of illness that’s life-altering, and your instincts that something is seriously wrong are absolutely worth trusting. You know your body better than anyone. You deserve a team that listens, believes you, and helps you build a realistic, sustainable path to healing. Whether it’s celiac disease, non-celiac gluten sensitivity, or something else, you have every right to go gluten-free permanently if that’s what makes you feel functional. Many people never get a “perfect” diagnosis but reclaim their health by honoring their own experience and choosing a path of least harm. You are not crazy, you are not weak, and you are not alone. Keep advocating for yourself—you and your daughter both deserve a healthier, more stable life.
    • Wheatwacked
      Am I celiac or not?

      By Wheatwacked · Posted

      While a definitive causal link remains unclear, vitamin D's known role in immune modulation and intestinal barrier integrity suggests that it plays a significant role in the development and progression of celiac disease.  Reduced 25(OH)D levels are associated with celiac disease.  In celiac disease, gluten can damage these tight junctions, and vitamin D may play a protective role in this context. 
×
×
  • Create New...