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

Test Results - Confused


CraigN

Recommended Posts

CraigN Newbie

Hi,

I recently obtained my results from Enterolab and here are my results:

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Antigliadin IgA 11 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 7 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal anti-casein (cow


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



Celiac.com Sponsor (A8-M):



CraigN Newbie

Anybody? :unsure:

gfp Enthusiast

Craig, sorry hard question I can't answer but others can...

just bumped this for you so hopefully they'll see it when different timezones wake up ... :D

ravenwoodglass Mentor
Hi,

I recently obtained my results from Enterolab and here are my results:

Do the casein results indicate that I can eat small amounts of casein and it won't cause any problems - or is it like gluten where a small amount can give your body fits?

Also, the genetic testing info provided in the FAQ for the test results is difficult for my feeble brain to understand. I must've zoned out during the genetics part of biology class! I don't understand what "0303" and "0501" represent. Any help would be great. Thanks!

The results show you are gluten intolerant and carry the genes for that. My educated guess would be that the numbers define some kind of genetic subtype. I took part in National Geographic Genome Project and there were lots of numbers like this in the gene test results.

As to casein, I would do a complete exclusion of this for quite a while, the lab says 12 months, and then do a dietary challenge. They are saying to do this because of the possibility that the results were a false negative. It can take a long time for antibodies and their effects to leave the system thus the resaon IMHO for the long exclusion.

Hopefully others will also add some insight. Have you telephoned the lab to see if they can make things clearer? They might be able to give some answers as well.

CraigN Newbie
The results show you are gluten intolerant and carry the genes for that. My educated guess would be that the numbers define some kind of genetic subtype. I took part in National Geographic Genome Project and there were lots of numbers like this in the gene test results.

As to casein, I would do a complete exclusion of this for quite a while, the lab says 12 months, and then do a dietary challenge. They are saying to do this because of the possibility that the results were a false negative. It can take a long time for antibodies and their effects to leave the system thus the resaon IMHO for the long exclusion.

Hopefully others will also add some insight. Have you telephoned the lab to see if they can make things clearer? They might be able to give some answers as well.

Thanks. I did send them an email yesterday. It's nice to know there's a wealth of information out there - if you know where to look!

NoGluGirl Contributor
Thanks. I did send them an email yesterday. It's nice to know there's a wealth of information out there - if you know where to look!

Dear CraigN,

From what I can tell, the only thing you need to be extremely concerned about is gluten. Your levels were out of the normal range for the IgA. You also have two gluten intolerance genes. That puts you at severe sensitivity risk. Not a speck of the stuff needs to get in your system! The casein really appears borderline. I would either go very light on it, or exclude it altogether. You may want to avoid it completely for a couple of weeks, and then add it back in to see if you tolerate it. I hope that helped make things less confusing. Welcome to the board Craig!

Sincerely,

NoGluGirl

CraigN Newbie
Dear CraigN,

From what I can tell, the only thing you need to be extremely concerned about is gluten. Your levels were out of the normal range for the IgA. You also have two gluten intolerance genes. That puts you at severe sensitivity risk. Not a speck of the stuff needs to get in your system! The casein really appears borderline. I would either go very light on it, or exclude it altogether. You may want to avoid it completely for a couple of weeks, and then add it back in to see if you tolerate it. I hope that helped make things less confusing. Welcome to the board Craig!

Sincerely,

NoGluGirl

Thanks! I got a response from Enterolab regarding the casein:

Dear Craig, Even though you are right on the cusp, we still recommend that you omit casein from your diet. This number confirms that you are intolerant to the protein. If you were to continue to consume casein, this number would eventually climb. Unfortunately, casein can cause the same problems that gluten does. Your body will produce the antibody against the casien protein, as it does with the gluten protein and the presence of the antibody in your system is what can trigger the other medical problems to occur. I wish I had better news for you.

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



Celiac.com Sponsor (A8-M):



hathor Contributor

You seem on the cusp for both gluten and casein. Plus you don't have positive results for anti tissue transgl. or malabsorption. Have you gone gluten-free and had positive results? If not, I would first wonder if you have a problem with either substance. When scores can be substantially higher, is a 10 or 11 rather than a 9 definitive enough to change your life?

Nearly everyone in the US has celiac genes or gluten intolerance genes (as the latter is defined by Enterolab). Only some of Asian heritage don't. So I wouldn't be that influenced by the genetic information.

I had a marginal test result for yeast myself. (Egg, too, but I was actively avoiding it for some time because it always seems to make me sick.) I asked what the margin of error was for the test, and Enterolab didn't answer. Dr. Fine hasn't published and is the only one doing this testing. So I don't know that a marginal test result should be taken as gospel if you have nothing else.

For my cusp scored substance, I decided to go without for six months to a year (haven't decided yet). Then I'll add it and see if I have a response. I have noticed problems with everything else I was positive to.

Have you yet gone gluten-free? If so, for how long & did you have a positive response? I would go by the answers to these questions rather than the test results.

chrissy Collaborator

craig---keep in mind that dr. fine feels that NO ONE should ingest dairy. personally, i wouldn't base any life changing decisions based on those test results----the only (barely) positive result you have is anti-gliadin, which can be raised by conditions other than celiac.

CraigN Newbie

Have you yet gone gluten-free? If so, for how long & did you have a positive response? I would go by the answers to these questions rather than the test results.

I originally had a CAT scan (negative) and a colonoscopy in March - the colonoscopy turned up a few benign polyps. However, the pain was still evident.

I've been gluten free since March 12 and have lost 16 pounds. The pain in my lower left abdomen went alway almost immediately. One day a few weeks ago after having 3 cups of coffee I had really bad pain. At that point I stopped drinking coffee and any residual pain subsided the next day. My BM's have normalized as well. I started going casein free about a week and a half ago.

hathor Contributor

It sounds like you will do well off gluten and casein then. You know the punch line to the old joke about, "Doctor, it hurts when I do this!" It sounds like your gut (small not large) is damaged and is reacting to foods that are hard to digest or irritating.

You might stop soy as well. Even if you don't do the tofu thing, it gets added to lots of things. I've read that gluten, casein & soy are similar in their gluing up of the small intestine.

I hope someone here has gone through something similar and can advise. It is unfortunate that they didn't do an endoscopy of the small intestine. Did your doctor recommend trying to go gluten-free or was this your idea? Does your doctor have any theory beyond I B(e) S(tumped)?

I guess as long as what you do eliminates your symptoms, that's the important thing.

CraigN Newbie
I Did your doctor recommend trying to go gluten-free or was this your idea? Does your doctor have any theory beyond I B(e) S(tumped)?

No, once the doctor got the blood test results back for celiac (which I forgot to mention) and saw that they were negative, I think he put that out of his mind. It was after reading a lot that I decided to go gluten free on my own. He did prescribe Bentyl to help the pain - which did absolutely nothing.

CMCM Rising Star

I don't believe there is any one test which can definitively say one is sensitive to any particular substance. And the test numbers don't always correlate as you would expect. Dr. Fine said quite clearly that the NUMBER doesn't indicate severity. For example, a person with an IGA barely above the "normal" <10 could be far sicker than someone with a score of, say, 80.

A lot of serious symdromes suffered by people WITHOUT celiac disease are vastly improved by eliminating both gluten and dairy from the diet. Both dairy and grain producers advertise heavily in all sorts of ways to convince us all that these food items are vital to the diet. They are NOT, and in fact, if truth be known, I suspect that we ALL would bev better off not eating grains or dairy at all, or at least, having them in only very tiny amounts. I once read that humans are the ONLY mammal that once weaned, continues to eat milk. Milk is for babies, cow's milk is probably best only for baby cows, and we don't need it after the age of 2 or so.

The biggest allergens are dairy, corn, soy, wheat, eggs. This should tell you something. The human body does its best to adapt to antigens, which is what the body considers a substance when it mounts an allergic reaction. Some people have more successful adaptive capabilities, but really....when you look at the huge number of complaints in our society....indigestion, heartburn, IBS type sumptoms, high blood pressure, diabetes at younger and younger ages, and all those expensive and profitable drugs to treat these things.....I'd say it's pretty logical to lay the cause at the door of nutrition...what we are eating. Just because you can eat it doesn't mean you SHOULD eat it!!!

CraigN Newbie
I don't believe there is any one test which can definitively say one is sensitive to any particular substance. And the test numbers don't always correlate as you would expect. Dr. Fine said quite clearly that the NUMBER doesn't indicate severity. For example, a person with an IGA barely above the "normal" <10 could be far sicker than someone with a score of, say, 80.

A lot of serious symdromes suffered by people WITHOUT celiac disease are vastly improved by eliminating both gluten and dairy from the diet. Both dairy and grain producers advertise heavily in all sorts of ways to convince us all that these food items are vital to the diet. They are NOT, and in fact, if truth be known, I suspect that we ALL would bev better off not eating grains or dairy at all, or at least, having them in only very tiny amounts. I once read that humans are the ONLY mammal that once weaned, continues to eat milk. Milk is for babies, cow's milk is probably best only for baby cows, and we don't need it after the age of 2 or so.

The biggest allergens are dairy, corn, soy, wheat, eggs. This should tell you something. The human body does its best to adapt to antigens, which is what the body considers a substance when it mounts an allergic reaction. Some people have more successful adaptive capabilities, but really....when you look at the huge number of complaints in our society....indigestion, heartburn, IBS type sumptoms, high blood pressure, diabetes at younger and younger ages, and all those expensive and profitable drugs to treat these things.....I'd say it's pretty logical to lay the cause at the door of nutrition...what we are eating. Just because you can eat it doesn't mean you SHOULD eat it!!!

Very well said...thanks for the information. Now that I'm gluten and casein free, I wonder if I'm harming the rest of my family's health by allowing them to eat the stuff. :(

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,859
    • Most Online (within 30 mins)
      7,748

    Lesley-Anne
    Newest Member
    Lesley-Anne
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.