Help In Decifering Test Results

[kempy99]

We've basically been on our own with this from the start and it was all of my reseach into it that led us to order the test from Enterolab. My son's doc has been of no help and we've not had much luck with 2nd opinions either. I have learned the most from you fine folks and my own research into the matter. If any of you would be so kind as to review the tests results we were given (below) and then read through my questions, I would so greatly appreciate your feedback!

First off, Enterolab has been great in providing explainations to the test results (as you will see below) but I still have a few questions that are really leaving us hanging. The test is for my 3 year old son.

A) Gluten Sensitivity Stool and Gene Panel Complete

Fecal Antigliadin IgA 46.5 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 31 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 123 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 25 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0301

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,7)

Interpretation of Fecal Antigliadin IgA: Intestinal antigliadin IgA antibody was elevated, indicating that you have active dietary gluten sensitivity. For optimal health, resolution of symptoms (if you have them), and prevention of small intestinal damage and malnutrition, osteoporosis, and damage to other tissues (like nerves, brain, joints, muscles, thyroid, pancreas, other glands, skin, liver, spleen, among others), it is recommended that you follow a strict and permanent gluten free diet. As gluten sensitivity is a genetic syndrome, you may want to have your relatives screened as well.

Interpretation of Fecal Antitissue Transglutaminase IgA: You have an autoimmune reaction to the human enzyme tissue transglutaminase, secondary to dietary gluten sensitivity.

Interpretation of Quantitative Microscopic Fecal Fat Score: A fecal fat score less than 300 indicates there is no malabsorbed dietary fat in stool indicating that digestion and absorption of nutrients is currently normal.

Interpretation of Fecal anti-casein (cow’s milk) IgA antibody: Levels of fecal IgA antibody to a food antigen greater than or equal to 10 are indicative of an immune reaction, and hence immunologic “sensitivity” to that food. For any elevated fecal antibody level, it is recommended to remove that food from your diet. Values less than 10 indicate there currently is minimal or no reaction to that food and hence, no direct evidence of food sensitivity to that specific food. However, because 1 in 500 people cannot make IgA at all, and rarely, some people can still have clinically significant reactions to a food antigen despite the lack of a significant antibody reaction (because the reactions primarily involve T cells), if you have an immune syndrome or symptoms associated with food sensitivity, it is recommended that you try a strict removal of suspect foods from your diet for up to 12 months despite a negative test.

Interpretation Of HLA-DQ Testing: Although you do not possess the main genes predisposing to celiac sprue (HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (DQ1 or DQ3 not subtype 8). Having two copies of a gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe.

For more information about result interpretation, please see the attached FAQ

Stool Analysis performed by: Frederick Ogunji, Ph.D., EnteroLab

Molecular Gene Analysis performed by: Laboratories at Bonfils

Interpretation of all results by: Kenneth D. Fine, M.D., EnteroLab

MY QUESTIONS that remain are:

1. the tests indicate that Brandon posses 2 genes for gluten sensitivity. This obviously means that both Adam and I are carriers of that gene and it was passed down to him. Do Adam and I need to be tested, or should we automatically assume that we are gluten intolerant and follow the same diet?

2. The dairy intolerance - is this a life-long thing or possibly when his gut heals (by being on a gluten-free diet for 6mo-1 year) will he be able to tolerate dairy in his diet again without causing harm to his systems?

3. If we can challenge him with dairy, how will we know that it is a problem or not because prior to receiving these test results, he had been consuming dairy and it did not appear to have any ill effects on him.

4. Allison's (my 4 month old who is currently exclusively breastfed) risks of gluten/dairy sensitivity and as we move her into solids -- what things should we avoid?

5. Brandon tested negative for the Celiac gene, but the tests indicated gluten sensitivity. What is the difference?

6. What about oats? Is he able to tolerate oats?

7. Cross contamination. Do we need to buy a separate toaster, pots/pans, cooking utensils, etc... Also separate condiments (i.e. peanut butter, jelly, mayo, etc..) How far do we need to take the gluten elimination?

8. Supplements. Brandon's CDSA indicate "0" (zero) good bacteria so he is currently taking probiotic/prebiotic, ultraflora (yeast), fish oil, and a multi-vit. Is this the optimal regime? For how long should we continue with all of these?

When I asked him all of these, he really didn't give us any sort of a concrete answer. He was just as unsure as we were. THis is so frustrating, but the good news is that since he's been gluten-free (Nov '05) it's definately made a huge difference (his only symptom was chronic diarreha, but in any case it is gone).

Thanks so much for taking the time to read through this post and providing any helpful information that you can!

Sincerely,

Rebecca (mom to "gluten-sensitive" 3-year-old, Brandon)

[Nic]

MY QUESTIONS that remain are:

1. the tests indicate that Brandon posses 2 genes for gluten sensitivity. This obviously means that both Adam and I are carriers of that gene and it was passed down to him. Do Adam and I need to be tested, or should we automatically assume that we are gluten intolerant and follow the same diet?

2. The dairy intolerance - is this a life-long thing or possibly when his gut heals (by being on a gluten-free diet for 6mo-1 year) will he be able to tolerate dairy in his diet again without causing harm to his systems?

3. If we can challenge him with dairy, how will we know that it is a problem or not because prior to receiving these test results, he had been consuming dairy and it did not appear to have any ill effects on him.

4. Allison's (my 4 month old who is currently exclusively breastfed) risks of gluten/dairy sensitivity and as we move her into solids -- what things should we avoid?

5. Brandon tested negative for the Celiac gene, but the tests indicated gluten sensitivity. What is the difference?

6. What about oats? Is he able to tolerate oats?

7. Cross contamination. Do we need to buy a separate toaster, pots/pans, cooking utensils, etc... Also separate condiments (i.e. peanut butter, jelly, mayo, etc..) How far do we need to take the gluten elimination?

8. Supplements. Brandon's CDSA indicate "0" (zero) good bacteria so he is currently taking probiotic/prebiotic, ultraflora (yeast), fish oil, and a multi-vit. Is this the optimal regime? For how long should we continue with all of these?

When I asked him all of these, he really didn't give us any sort of a concrete answer. He was just as unsure as we were. THis is so frustrating, but the good news is that since he's been gluten-free (Nov '05) it's definately made a huge difference (his only symptom was chronic diarreha, but in any case it is gone).

Thanks so much for taking the time to read through this post and providing any helpful information that you can!

Sincerely,

Rebecca (mom to "gluten-sensitive" 3-year-old, Brandon)

Hi, I can pretty much only go by what Celiac's are told. My son has Celiac and so does my father. I have not been tested yet. If I did get tested, and I did test postive for the Celiac gene, it would not mean I am actively sick with Celiac and would not need to be Gluten free. Some people carry the gene but never develop the disease because it was never triggered. I have heard that in many cases, Celiacs who are also Lactose intolerant, can eventually consume dairy again once their gut is healed. My son did not have a problem with this. I don't believe there is any reason to avoid food with your daughter. My youngest son has around a 30% chance of developing Celiac but so far does not. The doctor does not feel there is any reason to alter his diet. From what I know, gluten sensitivity has the same syptoms and treatment as Celiac. A life long gluten free diet. Oats in themselves are gluten free but the way they are processed can cause cross contamination making them unsafe in most circustances. If you call Quaker, they will tell you that they can not gauruntee that they are safe. But oats in their pure form, are gluten free (if you ever find out where to get them let me know). You should have a seperate toaster for your son. Think of all of those crumbs on the bottom of your toaster. I make sure that I don't cook anything for my son on any pots or use any utensils that have been used on gluten food unless it has gone through the dish washer. But, alot of people use seperate pots and utensils. I hope I was of some help.

Nicole

[taweavmo3]

I won't be of much help to you, but I would definately treat your son the same as if he were celiac. I would take the same precautions, and buy a new toaster, utensils, etc. to prevent cross contamination.

As far as you and your husband, it certainly wouldn't hurt to be tested. I haven't had testing done myself, but since all three of my kids have either celiac, or an intolerance, I am on the diet too. My husband will never be gluten free, or get tested, lol. He'd rather not know, and still be able to eat his pizza and pasta. But now that I've been gluten free for a while, I have reactions to gluten, and that's proof enough for me. So it might be worth it to just try the diet yourself, if you don't want to spend the money on testing. I found it pretty easy to try, since our whole house is gluten-free anyway, and we really don't go out to eat much at all.

I'll be having another baby in a few months, so I have the same ??? you have in regards to new foods for an infant. I know some research a while ago said that feeding a baby gluten between 4-6 months decreases the chances of celiac......BUT, I'm wondering since all my kids so far have problems with it, what are the odds I'm going to get a food issue-free baby??? Probably zero! So I still haven't decided what the heck I'm going to do. I'll probably just keep her gluten free as well, at least until she's passed all her major milestones with flying colors. I really don't want to take any chances this time around now that I know how damaging gluten can be.

And as far as dairy does.....I only have my dd's symptoms to go by. At first, Emmie would have loose BM's when ingesting dairy. Around 6 months gluten free, she seemed to tolerate dairy okay. But now I'm questioning it again. She has been taking in more and more dairy lately, and her moods have been atrocious. At first I thought it was an accidental glutening somewhere, but the moodiness and tantrums just keep continuing. I've double checked everything, so now I'm going to make her casein free again and see if that helps. So, maybe her symptoms of casein intolerance have changed from physical to emotional???? Who knows, but I'm willing to try anything.

I think the regimen you have your son on is awesome. I also had my daughter on enzymes for a while, they make some great chewable papaya flavored tabs. Not sure if they really helped or not, but I figured her gut needed all the help it could get.

I'm sure there are many more knowledgable people on here who can help you more...but there's my 2 cents! Good luck.

[Nancym]

Its my opinion that the best way to support your son is for your entire family to adopt a gluten-free/dairy free diet. You might be surprised at how much better you feel as well!

Oats are controverial for celiacs. Most oats are at high risk of cross contamination with wheat or other grains due to the way they're raised and stored and processed.

I was surprised at my own casein sensitivity but I could really tell it was a problem because I didn't 100% better going off gluten.

[mmaccartney]

I am no doctor, but I can try to answer:

1. the tests indicate that Brandon posses 2 genes for gluten sensitivity. This obviously means that both Adam and I are carriers of that gene and it was passed down to him. Do Adam and I need to be tested, or should we automatically assume that we are gluten intolerant and follow the same diet?

yes, you should both be tested. You carry the gene for sure, however it might not be active, or it might be active without noticeable symptoms!! Wouldn't you rather know now before you get other systemic disorders??? My grandmother never changed her diet, and though she is uncofirmed my gut tells me she has celiac and is one of my genetic sources, she now h

2. The dairy intolerance - is this a life-long thing or possibly when his gut heals (by being on a gluten-free diet for 6mo-1 year) will he be able to tolerate dairy in his diet again without causing harm to his systems?

I just asked the same question!! This is a life-long issue, and will not go away, sorry.

3. If we can challenge him with dairy, how will we know that it is a problem or not because prior to receiving these test results, he had been consuming dairy and it did not appear to have any ill effects on him.

Don't, the anti-casien antibody shows that an autoimmune reaction to casein is currently happening. There are "silent" symptoms.

4. Allison's (my 4 month old who is currently exclusively breastfed) risks of gluten/dairy sensitivity and as we move her into solids -- what things should we avoid?

Have her tested and go from there. If celiac isn't active she *could* eat gluten items, but the disease could trigger at any time.

5. Brandon tested negative for the Celiac gene, but the tests indicated gluten sensitivity. What is the difference?

I don't know.

6. What about oats? Is he able to tolerate oats?

Oats are all over this forum! In a nutshell, no avoid oats.

7. Cross contamination. Do we need to buy a separate toaster, pots/pans, cooking utensils, etc... Also separate condiments (i.e. peanut butter, jelly, mayo, etc..) How far do we need to take the gluten elimination?

yes, yes, yes. How far?? Gluten is poison to him, take every step. What would you do, and what lengths would you go to if it were *you* that had the problem. I am the only confirmed celiac in the house, but there is absolutely no Wheat, rye, barley or oats in my home, and after diagnosis we replaced all kitchen equipment.

If you are going to have gluten in the house, you need seperate toasters, seperater pots/pans, cooking utensils, etc. The only way you can share something like peanut butter is if you ONLY EVER USE a CLEAN utensil when going into that jar, odds are you can't control it that well!

8. Supplements. Brandon's CDSA indicate "0" (zero) good bacteria so he is currently taking probiotic/prebiotic, ultraflora (yeast), fish oil, and a multi-vit. Is this the optimal regime? For how long should we continue with all of these?

Sorry, no answer for #8