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

Low gluten ?

bkelly79

Recommended Posts

bkelly79 Apprentice
bkelly79
Posted
  • Author
1 minute ago, cyclinglady said:

Did the GI order this genetic test?  

Yes

 

 

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

The odds are that you do not have celiac disease.  You could be one of the rare cases of alternative genes (less than three percent), like Raven.    Your DGP IGA was elevated.  Did he do a repeat celiac panel?  You could have Crohn's.  I thought for sure my niece had celiac disease.  She went to four GI over a three year period.  She did not have the predominant genes, negative celiac disease panel.  A pill camera caught her Crohn's located beyond the reach of both scopes.  

Keep adovcating!  

bkelly79 Apprentice
bkelly79
Posted
  • Author
24 minutes ago, cyclinglady said:

The odds are that you do not have celiac disease.  You could be one of the rare cases of alternative genes (less than three percent), like Raven.    Your DGP IGA was elevated.  Did he do a repeat celiac panel?  You could have Crohn's.  I thought for sure my niece had celiac disease.  She went to four GI over a three year period.  She did not have the predominant genes, negative celiac disease panel.  A pill camera caught her Crohn's located beyond the reach of both scopes.  

Keep adovcating!  

Yeah, it would be pretty rare. No, he did not do a repeat celiac panel. He did do some tests for inflammation markers and they came back negative. Will see what the colonoscopy and endoscopy says. I see allergy testing in my future, however.  Does anyone know what the HLA markers under the 2 celiacs negative ones mean? Does that mean I'm carrying those or is it just lab coding? 

cyclinglady Grand Master
cyclinglady
Posted
6 minutes ago, bkelly79 said:

Yeah, it would be pretty rare. No, he did not do a repeat celiac panel. He did do some tests for inflammation markers and they came back negative. Will see what the colonoscopy and endoscopy says. I see allergy testing in my future, however.  Does anyone know what the HLA markers under the 2 celiacs negative ones mean? Does that mean I'm carrying those or is it just lab coding? 

Since I never had a genetic test, I have not really researched it.  I think it they are sub-variants. Definitely not lab coding.  

bkelly79 Apprentice
bkelly79
Posted
  • Author
44 minutes ago, cyclinglady said:

Since I never had a genetic test, I have not really researched it.  I think it they are sub-variants. Definitely not lab coding.  

Yeah they look like sub variants  to me as well , but im not sure either. 

bkelly79 Apprentice
bkelly79
Posted
  • Author

I went and spoke to a geneticist I know from work... im homozygous for the one its found in people who have narcolepsy.  I've inherited the gene marker from both parents= homozygous.  The DQ1 I believe it was is the location on the genes. Its also present in persons with MS, diabetes type1, and another type of auto immune disease.  I'm pretty sure I've not got narcolepsy but good to know. I've seen some stuff about that gene and NCGS. Wondering why that marker was even looked for? Going to assume if they see any of those that they notify...

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,545
    • Most Online (within 30 mins)
      7,748
    Jem68
    Newest Member
    Jem68
    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

    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
    • Jsingh
      Protein or fat?

      By Jsingh · Posted

      Hi,  I care for my seven year old daughter with Celiac. After watching her for months, I have figured out that she has problem with two kinds of fats- animal fat and cooking oils. It basically makes her intestine sore enough that she feels spasms when she is upset. It only happens on days when she has eaten more fat than her usual every day diet. (Her usual diet has chia seeds, flaxseeds, and avocado/ pumpkin seeds for fat and an occasional chicken breast.) I stopped using cooking oils last year, and when I reintroduced eggs and dairy, both of which I had held off for a few months thinking it was an issue of the protein like some Celiac patients habe mentioned to be the case, she has reacted in the same fashion as she does with excess fats. So now I wonder if her reaction to dairy and eggs is not really because of protein but fat.   I don't really have a question, just wondering if anyone finds this familiar and if it gets better with time.  Thank you. 
    • Chanda Richard
      High Cost of Gluten-Free Foods

      By Chanda Richard · Posted

      Hello, My name is Chanda and you are not the only one that gose through the same things. I have found that what's easiest for me is finding a few meals each week that last. I have such severe reactions to gluten that it shuts my entire body down. I struggle everyday with i can't eat enough it feels like, when I eat more I lose more weight. Make sure that you look at medication, vitamins and shampoo and conditioner also. They have different things that are less expensive at Walmart. 
    • petitojou
      Frequent nausea after gluten-free diet

      By petitojou · Posted

      Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for the information about MCAS! I’m from South America and little it’s talked about it in here. It’s honestly such a game changer now for treatment and recovery. I know I’m free from SIBO and Candida since I’ve been tested for it, but I’m still going to make a endoscopy to test for H. Pylori and Eosinophilic esophagitis (EoE). Thank you again!! Have a blessed weekend 🤍
    • knitty kitty
      Unusual bright yellow but odourless discharge

      By knitty kitty · Posted

      Yes, I, too, have osteoporosis from years of malabsorption, too.  Thiamine and magnesium are what keep the calcium in place in the bones.  If one is low in magnesium, boron, selenium, zinc, copper, and other trace minerals, ones bone heath can suffer.  We need more than just calcium and Vitamin D for strong bones.  Riboflavin B 2, Folate B 9 and Pyridoxine B 6 also contribute to bone formation and strength.   Have you had your thyroid checked?  The thyroid is important to bone health as well.  The thyroid uses lots of thiamine, so a poorly functioning thyroid will affect bone heath.  
×
×
  • 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.