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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,551
    • Most Online (within 30 mins)
      7,748

    Bethann Sheridan
    Newest Member
    Bethann Sheridan
    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

    • trents
      @LynnM, when you say, "today, his numbers were high", what numbers do you refer to? Are you speaking of celiac antibody scores? Can you be more specific and can you post the test names, the numbers and the reference ranges for the tests? So, I am understanding you to say that topical exposure to gluten doesn't cause him GI reactions but ingestion of gluten does but at the same time you are attributing the "high numbers" to the topical exposure?
    • Ginger38
      So I recently had blood work and my hemoglobin, hematocrit, protein and alkaline phosphatase were all low. They have never been low in the past but since august of last year I have been on the in and off gluten rollercoaster as I mentioned in previous posts. Should I be concerned with these new findings? I am worried I have made myself really sick and done damage or something this past year 
    • LynnM
      Thank you Scott. My son doesn't have a reaction topically, only when ingested. Interestingly though, the doc told us the face cream getting gluten into his bloodstream doesn't do the damage akin to when gluten is ingested. He had no reaction when using the face cream, it only presented in blood-work. I'm hopeful from all the comments today and will wait for the GI doc to reply. If he is cleared to use it, I will encourage SHIELD to get a gluten-free certification 
    • Scott Adams
      It’s great that you’re taking the time to research products carefully for your son with celiac disease—especially since accidental gluten exposure through skincare can be a real concern for sensitive individuals. Based on the ingredient lists you’ve shared, none of the products appear to contain obvious sources of gluten like wheat, barley, or rye derivatives. Ingredients like glycerin and tocopherols (not listed here but often a concern) can sometimes be derived from wheat, but many manufacturers use plant-based or synthetic sources. SHIELD’s transparency and willingness to share their full ingredient list is a good sign, and their note about not intentionally adding gluten is reassuring. Still, because ingredient sourcing can vary and sensitivities differ from person to person, it’s wise that you’ve reached out to your GI specialist to be sure these products are safe for your son’s specific needs. In the meantime, if you do try any of the products, consider patch-testing them first and watching closely for any signs of skin irritation or reactions. PS - Most people with celiac disease won't react to skin products that may contain gluten, but I still recommend finding gluten-free products.
    • LynnM
      Greetings Trents and Scott. This is the first time I'm posting here so I apologize in advance if I'm not replying properly. My 13 YO was diagnosed at age 5 and once gluten was removed from his diet, he grew 3" in a year, skin became much better and dark circles around his eyes disappeared. Today his numbers were very high and our new dietician discovered his face cream (Clinique dramatically different lotion) contained gluten. My fault for not checking.    His acne really has only just started and he's using OCT gluten-free products but the SHIELD is nothing short of miraculous for my 16 YO son and the 13 YO is eager to start. I will await his dietician's reply or google each ingredient.    I don't want to put him on that Rx as it's not that bad and isn't painful either. Just a boy starting 8th grade and doesn't want bad acne.    When I hear back I will circle back. 
×
×
  • Create New...