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

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.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Nikki03's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Confused about test results.

    2. - Nikki03 replied to Nikki03's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Confused about test results.

    3. - fritz2 replied to VinnieVan's topic in Introduce Yourself / Share Stuff
      15

      Question

    4. - Scott Adams replied to MichelleGrant's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Months of diarrhea - Testing question

    5. - Scott Adams replied to VinnieVan's topic in Introduce Yourself / Share Stuff
      15

      Question


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,776
    • Most Online (within 30 mins)
      7,748

    banneshe143
    Newest Member
    banneshe143
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      71.2k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      There is also something called "seronegative celiac disease" in which there is damage to the villous lining of the small bowel but no celiac antibodies are produced by the immune system. It's not very common and there can be numerous causes including infections, some medications and even some nongluten foods.  If you have dermatitis herpetiformis, that is proof positive you have celiac disease sense there is no other known cause for it. If you get it biopsied during an outbreak it can be used to establish a diagnosis of celiac disease, therefore. But not every dermatologist knows how to biopsy dermatitis herpetiformis correctly and it can be difficult to get an appointment with one on short notice.
    • Nikki03
      Ty very helpful I’m in the process of getting in with a new gI doctor and will ask more about all that then and yes the rash is exactly like that. I have a half cousin with celiac but that’s it in my whole family and idk if that matters as I see it is hereditary and others say the the only in the family with it. Either way this was very much appreciated ty again. 
    • fritz2
      My first post includes the blood test report done by the second doctor.  They told me to take two Naproxen tablets per day.  Absolutely worthless but I'm doing it.  I get to visit the doctor again in two weeks.  These doctors are worthless.  I had to clue them in to the fact that they used to treat me for fibromyalgia 15 years ago with vicodin until some political stooge had it removed from the market.  Then I found out about my grandchild with celiac so I removed gluten from my diet and got better.  (I had hashimoto's then and still do).  They don't read my medical record, or they don't comprehend it.  Either case they're worthless turds with no answers that are helpful.
    • Scott Adams
      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.
    • Scott Adams
      Have you been able to see a doctor or rheumatologist about this? Inflammation like that could point to something like celiac complications, an autoimmune response, or even reactive arthritis, and you deserve relief and answers. In the meantime, gentle heat/cold therapy or anti-inflammatory foods and over the counter meds might help a little, but I hope you can get proper medical support soon. 
×
×
  • Create New...