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.

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      12

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

    2. - Mari replied to Jmartes71's topic in Coping with Celiac Disease
      1

      Second chance

    3. - cristiana replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      12

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

    4. - Wheatwacked replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      12

      9 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,562
    • Most Online (within 30 mins)
      7,748

    Hannah Kelch
    Newest Member
    Hannah Kelch
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      I found some articles that illustrate the immune reaction to casein and gluten. Bovine milk caseins and transglutaminase-treated cereal prolamins are differentially recognized by IgA of celiac disease patients according to their age https://pubmed.ncbi.nlm.nih.gov/19290628/   Gliadin and Casein Metabolism: Synthesis of Gliadomorphin and Casomorphin and Their Biological Consequences https://www.researchgate.net/publication/397908713_Gliadin_and_Casein_Metabolism_Synthesis_of_Gliadomorphin_and_Casomorphin_and_Their_Biological_Consequences   Effects of milk containing only A2 beta casein versus milk containing both A1 and A2 beta casein proteins on gastrointestinal physiology, symptoms of discomfort, and cognitive behavior of people with self-reported intolerance to traditional cows’ milk https://pmc.ncbi.nlm.nih.gov/articles/PMC4818854/#:~:text=Results,lactose tolerant and intolerant subjects.   Casomorphins and Gliadorphins Have Diverse Systemic Effects Spanning Gut, Brain and Internal Organs https://pmc.ncbi.nlm.nih.gov/articles/PMC8345738/   Brain Opioid Activity and Oxidative Injury: Different Molecular Scenarios Connecting Celiac Disease and Autistic Spectrum Disorder https://pmc.ncbi.nlm.nih.gov/articles/PMC7407635/  
    • Mari
      Ijmartes71 I  son't think you are crazy by any psycoligical s=defination but you are obsessive. you may have considerable brain fog  , a problem that affects celiacs and many other people. . With this obsession you have abd being braun dogged you arw not abke to take any advice people are giving you to help you. To take advice you need to reduce your anxieties abd think more clearly. .Stop taking your herbs for at least one week because some of them will have side ellectsif you take them too long. You can add them back if you don't notice any good changes. Be more careful about being strictly gluten free.  
    • cristiana
      Just to say that I too was hesitant to come off dairy products completely @dsfraley.  Milk, yoghurt and soft cheeses definitely caused bloating.  This bloating gave me rib and pelvic pain, and I remember  the pain was so horrible at times it was almost a sick feeling., kind of like the sort of aches you get with flu.   Milk, yoghurt and soft cheeses also gave me diarrhea, but I noted I could still eat small amounts of hard cheese like cheddar without any issues. Re: milk, my gastroenterologist told me at that time that I could just by lactofree products, and should be fine, but when my gut was still very damaged they went right through me regardless. Thankfully I am able to tolerate milk very well again, although I have noted that too much of it can have a slightly laxative effect. The other thing that made me feel off were heavy iron supplements, which contributed to bloating and diarrhea.  In the end a GP told me to take ferrous gluconate, which is a much gentler supplement, with water an hour before breakfast in the morning.  That was helpful.  If your son is supplementing  (which needs to be under medical supervision as too much iron can cause issues) Floravital fruit syrup is another alternative, but make sure you don't buy Floradix as it contains gluten. Lastly, all oats, soya products and certain pulses also made my stomach sore.  Apart from the oats (which need to be certified 'pure' aka gluten free ones) I was able to eat these things again some months after adopting a gluten-free diet. I would say keeping a food diary might be worth a try, noting any negative symptoms following eating.  Patterns start to emerge which might otherwise be difficult to identify.
    • trents
    • Wheatwacked
      Anyway, I have no problem with grass fed milk other than the price.  Maybe I should move to Ireland or New Zealand.  They're the only countries that don't feed grains to their cows to increase milkfat and milk volume. A side note: I just came back trom the vascular surgeon about the scan of my carotid arteries done last week.  A year ago I had over 90% stenosis in the right artery and 80% in the left.  Tcar procedure done in the right with a stent.  The results today were right side downgraded to Moderate stenosis and the surgeon did not expect to see as much improvement on the left. (untouched). I must be doing something right.  Recheck in six months.   Mucosal reactivity to cow's milk protein in coeliac disease This paper proves that cassein is the protein in cow's milk is the trigger but the study did not differentiate as grass fed milk.  I haven't found any studies specific to grassmilk. The study does not differentiate alpha or beta cassein.  Google says: some clinicians speculate that grain-based proteins could potentially pass into the milk, though scientific studies typically find no detectable gluten or gliadin fragments in bovine milk regardless of the cow's diet. So given alpha cassein as the trigger, grass fed A2 cassein; thought to be easier to digest and less likely to trigger the specific inflammatory pathways associated with standard commercial dairy; plus the omega 6:3 ratio of grain fed milk is 5.8:1 vs grass fed ratio of 1:1, grass fed milk is less inflammatory.  
×
×
  • 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.