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

Help With My Genetic Results Please


3groovygirls

Recommended Posts

3groovygirls Contributor

Hi everyone!

I got my results today. I was tested b/c my daugher has Celiac and I am very skinny and had a high amylase reading, but it appears i don't have Celiac BUT I do have the genes for it. I was wondering if you all could look over the test results and tell me what you think. What are the chances someone with my genes gets Celiac? It says I am 10X the risk and am high risk. In real life does that mean I might REALLY get it?

Here's my results from Promethius.

I have DQ2.5(HLA DQA*05:DQB1*0201)

It puts me in Category 4, DQ2 Heterogzygous relative risk HIGH.

But I'm fine now! So what triggers this. I don't want to get it....

my other results were normal;

deamin Gliad pep igg <0.4 (<4.9)

DEAMIN GLIAD PEP IGA 0.3 (<6.1)

TTA IGA 0.2 (<10.3)

ANIT ENDOMYSIAL IGA NEGATIVE

TOTAL IGA 90 (44-441)

so I think i didn't even come close to failing right? other than the genes? It's funny b/c I DO think I am a bit gluten sensitive. Since eating a lot of gluten-free products (but not all) I find i am sensitive to whole wheat stuff now.


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



Celiac.com Sponsor (A8-M):



nora-n Rookie

yes, you have the most common gene for celiac.

What is the other gene, or do you have two of them? It would not really change things, though.

Do you think you have celiac without a positive blood test?

That is quite common, at least 20% of celiacs with total villous atrophy have negative blood tests.

Of course you not eating much gluten might just have obscured the picture.....for a gluten challenge the last recommendation I have seen is at least 0,5 grams gluten per kg weight per day for at least 6 weeks. That is a lot of bread.

domesticactivist Collaborator

Nora where did you get that formula for how much gluten to eat on the challenge? I looked and looked for a guideline like that! All I found were a few vague articles and so i settled on 20 grams a day for any adult.

domesticactivist Collaborator

This formula puts me at needing 28 grams a day. That really is a lot of gluten! I think some days I may have hit that but not most days. I held out for just under 2 months. Test results coming back next week.

Skylark Collaborator

In real life, it means you have at least 10% chance of getting celiac, possibly higher because your daughter has it and you are already noticing a reaction to gluten.

It's not clear what triggers celiac, though a lot of us have had a flu, food poisoning, pregnancy, car accident, or stress trigger the disease. Other people have it appear with no warning and no particular trigger. You can minimize the risk of getting celiac by limiting the amount of gluten you eat.

nora-n Rookie

About the 0,3 grams and 0,5 grams of gluten for a gluten challenge, maybe I have that on google bookmarks, maybe not, but a seach on pubmed would maybe give some results.

There also was an article on celaic.com on gluten challenge.

The problem is that often doctors say two slices of bread a day, which is way too little in adults. It is probably right for children.....

domesticactivist Collaborator

Yes, the article on celiac.com said "about 4 slices of bread a day" and put the average slice of bread at 4.8 grams of gluten. From my label reading, most slices of bread that I saw actually had less than 4.8 grams. I decided on how much to eat for my challenge based on rounding up to 5 grams and multiplying by 4, to be on the safe side.

I saw some references that said 3 months so I aimed for that. But I had to quit at 2 months. (Anyone who wants all the gory details of my gluten challenge can pm me, as I kept a log I am happy to share.)

These "by weight" amounts seem to make more sense than a blanket advisory, but I'd love to see the actual references. I haven't found anything that shows a study, for example, of amounts eaten on a gluten challenge vs test results.


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



Celiac.com Sponsor (A8-M):



nora-n Rookie

let

Skylark Collaborator

Here are some challenge references I put in another thread, Nora. Maybe it will save you some time. :)

nora-n Rookie

I remember the abstracts that said anywhere from 6 weeks to several years, must find it.

You had one with five weeks here, that is the shortest time I have seen. (and that is children)

Blue-eyed bandit Apprentice

I read it only takes 1/8 a teaspoon daily of gluten to cause continual damage to the intestines. Why would you eat 4 slices of bread?!

kareng Grand Master

I read it only takes 1/8 a teaspoon daily of gluten to cause continual damage to the intestines. Why would you eat 4 slices of bread?!

If you want to have enough antibodies to show up on the blood test after being gluten free for years, you need more than an 1/8 of a teaspoon. these people are talking about people on gluten-free diets.

I don't want anyone to think that less than 1/8 tsp of wheat is OK, because it's not.

nora-n Rookie

when I did the maths, it was 6 slices a day to reach 0,3 grams of gluten per kg

The damage is often also proportional with the amount of gluten, and reverse proportional with time. Meaning it will take longer time before one gets a positive biopsy on smaller amounts of gluten.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,546
    • Most Online (within 30 mins)
      7,748

    KimberlyAnne76
    Newest Member
    KimberlyAnne76
    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
      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
      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
      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
      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
      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.