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
      131,855
    • Most Online (within 30 mins)
      7,748

    Tara M
    Newest Member
    Tara M
    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

    • 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    
    • Me,Sue
      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • 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.