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Got Enterolab Results, Need Help

Mia H

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Mia H Explorer
Mia H
Posted

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

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AndreaB Contributor
AndreaB
Posted

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
corinne
Posted

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
tarnalberry
Posted

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

Mia H Explorer
Mia H
Posted
  • Author
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
CarlaB
Posted

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
Mia H
Posted
  • Author
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

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CarlaB Enthusiast
CarlaB
Posted
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.

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    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
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    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

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    • Jmartes71
      My only proof

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      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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