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
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

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

Celiac.com Sponsor (A8-M):


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

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

Celiac.com Sponsor (A8-M):


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.

Archived

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

Go to topic listing

  • 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
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    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
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.