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

Some Good News, Some Bad News


Idiote Savante Goddess

Recommended Posts

Idiote Savante Goddess Rookie

Saw the allergist yesterday. She agrees that I could have had a false negative response to the bloodwork bc of my wheat allergy, so I'll do my genetic testing as soon as I know how much BlueCross-Blue Shield will cover (or perhaps, more correctly, won't cover).

The bad news is that the Elavil the neuro prescribed for my migraines has made me manic. They don't know if it will resolve on its own now that I'm no longer taking it, or if I'll continue to have manic episodes.

What do all those boring neurologically typical people do for fun?


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor
Saw the allergist yesterday. She agrees that I could have had a false negative response to the bloodwork bc of my wheat allergy, so I'll do my genetic testing as soon as I know how much BlueCross-Blue Shield will cover (or perhaps, more correctly, won't cover).

The bad news is that the Elavil the neuro prescribed for my migraines has made me manic. They don't know if it will resolve on its own now that I'm no longer taking it, or if I'll continue to have manic episodes.

What do all those boring neurologically typical people do for fun?

Sounds like your allergist is pretty savvy. Hopefully she told you that whether or not your eating gluten will not effect the gene test.

I am not surprised by the reaction you had to the Elavil, many of us have bad effects on psychotropic meds. My migraines were controlled completely by the gluten-free diet. Have you started it yet? Hopefully between time and the diet the manic episodes will resolve. Make sure that you are taking a sublingual B12 in addition to your other vitamins it will help the brain and nerves heal.

Ursa Major Collaborator
Hopefully she told you that whether or not your eating gluten will not effect the gene test.

I don't understand this sentence. Anyway, nothing you eat will effect your gene tests, it would only effect your bloodwork or biopsies.

I agree that your migraines as well as the manic symptoms might both resolve on a gluten-free diet.

momandgirls Enthusiast

Genetic testing will not tell you whether you have Celiac Disease. It will only tell you if the have the genetic make up for the disease. A huge portion of the population carry the genes for Celiac - most will never develop the disease. A genetic test can, however, rule out Celiac.

Ursa Major Collaborator
A genetic test can, however, rule out Celiac.

No, not so. There are documented cases of people having full-blown celiac disease with completely flattened villi who don't have the 'official' celiac disease genes.

Scientists have acknowledged that it is likely not all of the celiac disease genes have been found yet.

ravenwoodglass Mentor
I don't understand this sentence. Anyway, nothing you eat will effect your gene tests, it would only effect your bloodwork or biopsies.

I agree that your migraines as well as the manic symptoms might both resolve on a gluten-free diet.

I guess I worded that badly, what it means is that the gene test is not effected if you are not eating gluten. I didn't want the poster to think she has to do a challenge if already gluten free.

Idiote Savante Goddess Rookie

Well, I've been off the Elavil for almost two weeks -- I feel energetic, but not manic -- the issue is the manic mood made me EXTREMELY irritable -- I got a verbal reprimand at work. However, I've also noticed that espresso, which never made me jittery before, now makes me jittery. So, I'll just have to ride it out and see what happens.

Yes, the allergist knows I can't do a gluten challenge and that I don't need to eat wheat for the gene test. I do understand that the gene test will show only a propensity toward gluten intolerance or celiac, not the disease itself.

The sublingual B-12 sounds interesting -- is it yeast-based? I have a yeast allergy as well.

I'm gearing up to go gluten-free next payday. I'm already gluten-light -- it'll just mean no hot barley cereal when the weather gets cold, no Ry-Krisp w/peanut butter for lunch. I'm allergic to rice as well, but there's always corn and quinoa and gluten-free oats.


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



Celiac.com Sponsor (A8-M):



splash Rookie
No, not so. There are documented cases of people having full-blown celiac disease with completely flattened villi who don't have the 'official' celiac disease genes.

Scientists have acknowledged that it is likely not all of the celiac disease genes have been found yet.

I have full blown celiac disease (GI symptoms, skin issues, neurological symptoms) and don't have the "official" celiac disease genes. I see the reasoning to want to test but the only real test is to eliminate gluten from your diet. If that works, stick with it. Some people on this board have additional food intolerances - I don't know if those work in a similar way to gluten, but it might be worth trying out different eliminations.

confused Community Regular

i also have celiac without the celiac gene. I also have Dh, so there is no denying im celiac.

paula

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Colleen H replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      15

      Ibuprofen

    2. - Colleen H posted a topic in Coping with Celiac Disease
      0

      Methylprednisone treatment for inflammation?

    3. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      15

      Ibuprofen

    4. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

    5. - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,871
    • Most Online (within 30 mins)
      7,748

    GR82BNTX
    Newest Member
    GR82BNTX
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Colleen H
      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
    • Colleen H
      Hi all !! Did anyone ever get prescribed methylprednisone steroids for inflammation of stomach and intestines?  Did it work ??  Thank you !! 
    • cristiana
      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
×
×
  • 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.