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

Got Enterolab Results, Need Help


Mia H

Recommended Posts

Mia H Explorer

Well I got my results:

Antigliadin IgA: 68 (nl<10)

Antitisuue Transglutaminase IgA: 35 (nl <10)

Fecal fat score: 86 (nl <300)

anti-casein IgA 29 (nl < 10)

HLA-DQB1 molecular analysis, allele 1 0603

HLA-DQB1 molecular analysis, allele 2 0602

Serologic equivalent: HLA-DQ 1,1 (subtype 6,6)

The interpretation was that I am sensitive to gluten but I do not carry the main celiac gene. It says I have 2 copies of a gluten sensitive gene (one from each parent) . Two copies means there is an even stronger predisposition to gluten sensitivity than having one and the resultant immunologic gluten sensitivity may be more severe.

Does this mean I am most likely NOT celiac but "just" gluten sensitive?

And what does that mean? Do my vili flatten out from gluten or just get damaged somehow?

And I am really bummed about the dairy! man! It was HARD to give up gluten, now dairy!

Did anyone out there who gave up dairy, later become able to eat it again? Can your gut heal for awhile and then you can eat dairy again?

Does anyone know if there is casein in ALL dairy products? How about Ghee (that purified butter)?

Thank you for any help you can give, I will really appreciate it!

Mia


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



Celiac.com Sponsor (A8-M):



AndreaB Contributor

Mia,

As far as I understand you just have gluten intolerance but it is still lifelong. I believe it is the same for casein but maybe others know more.

corinne Apprentice

Dairy intolerance can improve as the villi come back, but casein intolerance is life-long and can cause damage. I'd agree, for me casein free is much harder than gluten free. Depending on your other sensitivies, you might be able to tolerate soy cheese or coconut milk icecream etc. Most people tolerate ghee. Unfortunately, some of us are very sensitive to casein and do not. It is also possible that you might be able to tolerate sheep or goat casein but not cow. Wait until your symtoms clear up and then try a small amount of goat cheese.

tarnalberry Community Regular

as for ice cream - how about soy-based ice cream. the stuff by soy delicious is quite tasty.

Mia H Explorer
as for ice cream - how about soy-based ice cream. the stuff by soy delicious is quite tasty.

I thought I read that soy is not good for you, it messes with your hormones and unless you are in menopause you should not eat it. I read in mothering magazine which I trust (Open Original Shared Link) In asia they do not eat soy like we do here (soy milk, fake soy meats, etc).

They are pushing it hard in America to make money but it is the new human "feed". It apparently is in tons of processed foods (most of them) because it is a cheap filler but is very bad for people at such high amounts.

Mia

CarlaB Enthusiast

My numbers were very similar to yours and I never felt fully better until I got off dairy. Your absorption is much better than mine, so that is great!!!

I, too, did not have the celiac genes, but my absorption was bad, so I think and have read that you can still get intestinal damage with gluten intolerance. Plus, a certain percentage of celiacs do not carry the genes, so just because you don't have them doesn't mean you don't have celiac.

With two gluten sensitive genes, I find I am very sensitive to any gluten even from cc.

Casein is a life-long intolerance. I got very sick from withdrawal type effects when I eliminated it, so you might consider getting off it when you have a couple days you can rest. I don't know if anyone else had this experience.

Mia H Explorer
My numbers were very similar to yours and I never felt fully better until I got off dairy. Your absorption is much better than mine, so that is great!!!

I, too, did not have the celiac genes, but my absorption was bad, so I think and have read that you can still get intestinal damage with gluten intolerance. Plus, a certain percentage of celiacs do not carry the genes, so just because you don't have them doesn't mean you don't have celiac.

With two gluten sensitive genes, I find I am very sensitive to any gluten even from cc.

Casein is a life-long intolerance. I got very sick from withdrawal type effects when I eliminated it, so you might consider getting off it when you have a couple days you can rest. I don't know if anyone else had this experience.

Thank you for the heads up on withdrawing from casein, I know I got sick from coming off gluten. Maybe a weekend will be best when my husband is home to help with the girls. Did you give up gluten first? How long before you felt better after going cf?

Are you able to touch gluten or casein? How about eat things made in a facility that makes things with wheat? I loved the diamond brand Nut Thins, but the box says its made in a facility...,

It makes me feel better that there is someone out there with similar results and you are surviving and doing very well. It gives me hope. I'm in the grieving stage right now and need the hope so I appreciate it very much.

Can you recommend any cookbooks or food ideas. What do you normally eat for breakfast and lunch? I just got the latest Living Without and it has some good recipes. I think I will get some back issues.

Sorry for all the questions!

Mia


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast
Thank you for the heads up on withdrawing from casein, I know I got sick from coming off gluten. Maybe a weekend will be best when my husband is home to help with the girls. Did you give up gluten first? How long before you felt better after going cf?

Are you able to touch gluten or casein? How about eat things made in a facility that makes things with wheat? I loved the diamond brand Nut Thins, but the box says its made in a facility...,

It makes me feel better that there is someone out there with similar results and you are surviving and doing very well. It gives me hope. I'm in the grieving stage right now and need the hope so I appreciate it very much.

Can you recommend any cookbooks or food ideas. What do you normally eat for breakfast and lunch? I just got the latest Living Without and it has some good recipes. I think I will get some back issues.

Sorry for all the questions!

Mia

I have been off gluten since December. I was feeling great for while, but started feeling bad again and it was always after dairy. The more dairy, the worse I felt. I got off dairy last Sunday and spent Sunday and Monday laying around. By Tuesday I was feeling much better, which was good because Tuesday and Wednesday I spent at IU for my daughter's orientation. I felt tired by the end of it, but met someone who was perfectly healthy complaining about how tired she was after it all and I think I felt better than her!

I'm still tired today, but I don't think it's the casein.

I am a stay-at-home mom. In the morning I go work out (cardio and weights), then when I get home I usually drink an acai juice. After I get cleaned up, I'll eat a snack -- sometimes leftovers, sometimes a banana and a few nuts. Sometimes I'm starving and will make myself something more to eat -- last week I made myself 3 flax waffles (frozen), then put a fried egg on top of each. Then for lunch, I'm usually snacking again. I try to eat a protein with a carb so I don't get a blood sugar swing. I like Bumblebars with almond butter for snacks, too. I don't really eat "lunch" or "breakfast", I just eat several smaller meals -- usually. I also keep corn tortillas in the house and put various things in them (avocado is one of my favorites).

All my kids are old enough that they fix their own lunches, so I don't touch their gluten.

For dinner I make things that are naturally gluten free. I'm not someone who follows recipes very well, so I always just make things up. Enchiladas are a favorite around here. I put ground beef and refried beans in them (the good fattening kind with lard!!), then pour a gluten-free enchilada sauce over them. I just buy these ingredients in the Mexican section of Kroger. I also make chicken different ways with steamed veggies and maybe rice or potatoes. One of our favorite potato recipes is to cut them lengthwise into wedges, put them in a baking dish with olive oil, thyme, rosemary, and oregano. Then bake till browned and somewhat crispy. Every dinner I make it gluten/casein free and no one complains. When friends are over, they don't even notice.

I still go through the denial and grieving ... but generally I'm doing pretty good. I always was a person who cooked from scratch, so eating out is really the only challenge. I only go to places I know I am almost completely safe. I try to stick to restaurants with gluten-free menus. I've found that friends don't really care if you ask to go somewhere you can eat. Usually it's all about getting together. I had some high school friends who got together recently and wanted to go to a pizza place we all liked. We met at one of their houses, ordered the pizza, I baked my own (before I was casein free), we ended up with a lot of side dishes that people brought, and had a better time than if we had eaten in the restaurant! It can be uncomfortable asserting yourself to get this to happen, but people are usually pretty accomodating. Truthfully, they may ask a few questions, but generally speaking, people aren't really concerned past that, especially when you look healthy.

Feel free to ask questions. You may pm me if I don't answer here, I don't always read everything, unless I'm feeling bad. I eat those crackers you mention.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,202
    • Most Online (within 30 mins)
      7,748

    PatBurnham
    Newest Member
    PatBurnham
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.