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k-amy32

Help! Enterolab Users!

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Hi to everybody! I am new hear but have been lurking around for awhile while I waited for my tests to come back. I would really appreciate some help with these test results. I am confused about what to do next? Further testing?

Fecal Antigliadin 21

Antitissue transglutaminase Iga 10

Quantitative Microscopic Fecal Fat score 1480

Anti-casein IgA antibody 14

HLA-DQB1 molecular analysis, Allele 1 06xx

HLA-DQB1 molecular analysis, Allele 2 06xx

Serologic equivalent HLA-DQ 1,1 (subtype 6,6)

Chicken egg antibody 42

yeast IGA 5

Anti-soy IgA 20

I understand that I am reacting to gluten,casein, soy and egg. That seems like an awful lot of food sensitivities! Should I get tested for more allergies? I don't know what's left to eat? I am concerned about the Fecal fat score of 1480. I get the big "D" but only 3-4 times a week. I wouldn't expect it to be that high? I had my gallbladder taken out a long time ago, I wonder if that is why there is more fat in my stool? Doesn't the gallbladder help digest fats? Also, I have been on the Atkins diet since April which is how I figured out the connection to gluten. I had been gaining weight steadily for the last 12 years and nothing took the pounds off until I tried the Atkins diet. I eat a lot of meats, eggs (until now)nuts and veggies. I wonder if the Atkins diet would be the reason that score is so high? Sorry so many questions I am just very confused and anxious to figure this all out. Should I eliminate the casein, egg,gluten and soy for awhile then re-test the fecal fat score again or should I see a GI doctor and get further testing? Hubby and I want to start trying for another bambino but I am scared now because of these tests. One final question does anybody know that if I don't carry the celiac gene does that mean I can't have celiac? I understand I have two gluten sensitive genes.

Thanks to all for your replies! From what I have been reading everybody seems so supportive and I really need that!

Oh and here's a little background on me.

Diagnosed with Irritable bowel, Hashimotos Thyroiditis, adrenal calcifications, gall bladder stones, metabolic resistance, frequent headaches

My upper arms are always flushed and no one knows why? My scalp is very itchy, I am tired a lot, and weird joint pain.

I have a son with GERD.

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Guest micah

Hi amy,

I don't know any answers to your questions, sorry, but I noticed your other post about this post getting lost and I couldn't find it either except for to click on your name and clicked find members posts. I'm new here so I have no idea, but I thought I'd respond and see if it works.

Micah

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Micah,

I am not sure what happened but thank you so much for your help!! Hopefully I will get better at posting. I have a lot to learn!

Thanks again,

Amy

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Amy, your scores are quite high, as you already know. With all your health problems I would definitely eliminate all gluten, dairy, egg and soy. Those are foods that many people can't tolerate (including me). You may never be able to have them again, I still can't, even after two years of eliminating them.

I wouldn't try for another baby until your intestines have had a chance to heal, give it a good six months at least to make sure you have a healthy baby, and don't get complications because of being malnourished.

You may want your son tested too, as GERD is often caused by gluten and/or dairy intolerance. Or just take him off both to see if he won't improve.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Diagnosed with Irritable bowel, Hashimotos Thyroiditis, adrenal calcifications, gall bladder stones, metabolic resistance, frequent headaches

My upper arms are always flushed and no one knows why? My scalp is very itchy, I am tired a lot, and weird joint pain.

I have a son with GERD.

I don't have a lot of answers either. I do know that both gluten and soy can cause joing pain. Go off all the offending foods for at least 6 months and then challenge one at a time leaving a week in between. I wouldn't challenge the gluten though.

There are a lot of alternative testing options available if you find your symptoms don't resolve.

I'm concerned about your fecal fat score too. It is possible that the gallbladder could affect that but I really don't know. Another poster has had her gallbladder removed and she has to be real careful with fat.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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Hi to everybody! I am new hear but have been lurking around for awhile while I waited for my tests to come back. I would really appreciate some help with these test results. I am confused about what to do next? Further testing?

Fecal Antigliadin 21

Antitissue transglutaminase Iga 10

Quantitative Microscopic Fecal Fat score 1480

Anti-casein IgA antibody 14

HLA-DQB1 molecular analysis, Allele 1 06xx

HLA-DQB1 molecular analysis, Allele 2 06xx

Serologic equivalent HLA-DQ 1,1 (subtype 6,6)

Chicken egg antibody 42

yeast IGA 5

Anti-soy IgA 20

I understand that I am reacting to gluten,casein, soy and egg. That seems like an awful lot of food sensitivities! Should I get tested for more allergies? I don't know what's left to eat? I am concerned about the Fecal fat score of 1480. I get the big "D" but only 3-4 times a week. I wouldn't expect it to be that high? I had my gallbladder taken out a long time ago, I wonder if that is why there is more fat in my stool? Doesn't the gallbladder help digest fats? Also, I have been on the Atkins diet since April which is how I figured out the connection to gluten. I had been gaining weight steadily for the last 12 years and nothing took the pounds off until I tried the Atkins diet. I eat a lot of meats, eggs (until now)nuts and veggies. I wonder if the Atkins diet would be the reason that score is so high? Sorry so many questions I am just very confused and anxious to figure this all out. Should I eliminate the casein, egg,gluten and soy for awhile then re-test the fecal fat score again or should I see a GI doctor and get further testing? Hubby and I want to start trying for another bambino but I am scared now because of these tests. One final question does anybody know that if I don't carry the celiac gene does that mean I can't have celiac? I understand I have two gluten sensitive genes.

Thanks to all for your replies! From what I have been reading everybody seems so supportive and I really need that!

Oh and here's a little background on me.

Diagnosed with Irritable bowel, Hashimotos Thyroiditis, adrenal calcifications, gall bladder stones, metabolic resistance, frequent headaches

My upper arms are always flushed and no one knows why? My scalp is very itchy, I am tired a lot, and weird joint pain.

I have a son with GERD.

I'm always surprised by people who pay for all those Enterolab tests and then want other people to interpret tha results, rather than asking Elab for an explanation. I'd say those results are pretty self-explanatory. However I know Elab adds an interpretation to every set of test results. What did your test results interpretation say? I would heed any advixe they give.

However, you did ask for opinions for people who used Enterolab (I did every test they offer), so here's mine:

You have antibodies to casein, gluten, soy and egg. Stop eating all sources of those foods ASAP!! Don't 'challenge' those results by eating those foods again, unless you want to incur more intestinal damage and more painful symptoms. I agree that the high malabsorption (fecal fat) score is most likely related to gall bladder malfunction, because the gall bladder helps digest fats. However I suggest you stop eating all the foods to which you showed positive antibodies for at least a year before you test malabsorption again. Perhaps that will relieve gallbladder problems which are common with celiacs. Also I believe you have the main gene which predisposes to celiac disease, but you will have to read your Elab test interpretatioin at the bottom of your results. With your symptoms and test results, I suggest you avoid gluten for the rest of your life. Irritable bowel syndrome is NOT a disease, but a catch all category to which doctors assign patients whose symptoms they can't explain. Your Elab results explain why you have 'IBS' symptoms and their interpretation should tell you what to do now.

BTW I tested positive to antibodies to gluten, casein, egg, soy and cane sugar. I still have LOADS of foods to choose from fruits, vegies, meats, gluten free grains,nuts amd seeds. I use almond or coconut milk, make my own mayonnaise and vegan ice cream from a cashew base, and substitute beet sugar, honey, agave or fruit sweetner for cane sugar. Rather than test for more food allergies, I suggest you focus on learning how to substitute for the foods you already tested positive. If you STILL have IBS symptoms, consider testing for bacteria and fungus imbalances and/or low stomach acid.

I agree that you should wait to try for another child until AFTER you've restricted those positive antibody foods for awhile and your 'IBS' symptoms have disappeared. Abstaining from those foods may also relieve your Thyroiditis symptoms, which are often related to celiac disease. Good luck!

BURDEE


Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.

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Thank you to all for your replies! I appreciate any and all input! I understand I need to eliminate all of the suspect foods. I was unsure of the fecal fat score being so high if I should investigate it further such as get a colonoscopy to check for inflammatory bowel disease etc? I have been waiting for the nurse at Enterolab to call me back.I had posted here hoping that someone might have had their gall bladder removed as well and know how that would have effected that score. Hopefully they will call me back soon. The intrepretation they sent just said that I was borderline very severe malabsorbtion and that gluten could be the reason. We are going to get our son tested as well. Just trying to decide if we should take him to the doctor or do it through enterolab.

Again, thanks to all for your help! I have a lot to learn now about my diet and this website has been a great resource!

Sincerely,

Amy

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Amy,

I was told by the director at the Celiac Disease Foundation that if you don't have the gene, you CAN'T have celiac. They usually suggest the gene testing to people who want to know if Celiac is even a possibility. IE, if you have the gene, it's possible, if you don't, it's not possible. Also, I would try to get your son tested through the doctor if possible. You can read about Elab, but I would trust that a doctor would be more accurate. Make sure you keep him on gluten though, until you get him tested.

Kassandra


Dairy/Casein Free- March 2007

Gluten Free- May 2007

Soy Free- August 2007

Sugar Free- January 2008

Starch Free- January 2008

Egg Free (again!)- February 2008

Sulfur Free- May 2008

Dx'd Lyme Disease and co-infections- December 2007

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Amy,

I was told by the director at the Celiac Disease Foundation that if you don't have the gene, you CAN'T have celiac. They usually suggest the gene testing to people who want to know if Celiac is even a possibility. IE, if you have the gene, it's possible, if you don't, it's not possible. Also, I would try to get your son tested through the doctor if possible. You can read about Elab, but I would trust that a doctor would be more accurate. Make sure you keep him on gluten though, until you get him tested.

Kassandra

That is not always true, i dont have the celiac gene and i tested positive threw blood work and I have DH. I refused the endoscope cause i was already off gluten and was not going to go back to gluten. Last week I got my results of my biopsy and i tested postive for DH, so now the drs are not even thinking about me doing the scope.

paula


gluten, casein and soy free

on low carb/low sugar diet

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Amy,

I was told by the director at the Celiac Disease Foundation that if you don't have the gene, you CAN'T have celiac. They usually suggest the gene testing to people who want to know if Celiac is even a possibility. IE, if you have the gene, it's possible, if you don't, it's not possible. Also, I would try to get your son tested through the doctor if possible. You can read about Elab, but I would trust that a doctor would be more accurate. Make sure you keep him on gluten though, until you get him tested.

Kassandra

I know there is a biopsy confirmed celiac on the board who is a double DQ1. I can agree that it's uncommon, but it's only about 95% of celiacs that have the celiac genes.

I would do as Andrea said and eliminate all the offending foods for six months. Then challenge each one for a week or so to see how you react (one at a time so you know what you're reacting to). I tested 32 for casein, saw no improvement casein-free, and saw no changes whatsoever when I added casein back in.

Remember, it's an antibody test ... it's not perfect ... confirm it with dietary response.

As for your son, I'd get him the blood test while he's still eating gluten. If it comes out negative, then either try the gluten-free diet to see how he responds, or use Enterolab. You can only test for celiac itself when a person is consuming gluten.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Thank you to everybody that has responded! I think we will get our son the blood work as suggested. My question though is do I need to take him to a pediactric GI or can the regular Pediactric doctor do the test? I want to make sure they do the correct panel on him. What is included in a complete blood panel for celiac? Is there somewhere on this website where I can find that information? I appreciate everyone's help thanks again!

Sincerely,

Amy

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k-amy,

Kudos to you for taking the initiative both to ask advice from this board and seeking advice from enterolab.

Yours is the first malabsorption result I have noticed on this board that is higher than mine. As I understand it, this result could have several reasons. I haven't had any gall bladder problems so far. My fat consumption was up the weekend before I did the test on Monday, as we had birthday cake and I like the frosting too well! My digestion is very slow and though I did the prescribed three days (I think it is) off my oil supplements, maybe it wasn't long enough?

When I asked my doctor he said this still wouldn't explain it being so very high.

I don't have the option to get good blood tests or biopsy where I am, so I just went ahead with Gluten-free Casein-free. The jury is still out about whether this will make a difference.

You may have to be off all of those food items. I would at least begin with gluten and dairy. Then if you are not better, go from there.


4/2007 Positive IGA, TTG Enterolab results, with severe malabsorption: Two DQ2 celiac genes--highest possible risk.

gluten-free since 4/22/07; SF since 7/07; 3/08 & 7/08 high sugar levels in stool (i.e. cannot break down carbs) digestive enzymes for carbs didn't help; 7/18/08 started SCD as prescribed by my physician (MD).

10/2000 dx LYME disease; 2008 clinical dx CELIAC; Other: hypothyroid, allergies, dupuytrens, high mercury levels

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Hi Amy, do not want to scare you but the double DQ1 is nothing to mess around with, I have it as do a lot of the people of the boards that I post to - also a lot of my family & a couple gluten-free friends.

ignore the people that say you do not have celiac etc because you are DQ1

It comes with a lot of food sensitivities & neurological problems for most of us.

Stick to a plain diet of whole foods - you should be better in a couple of weeks.

take a B12 everyday.

I would suggest to read the book Dangerous Grains,

just put your son on the same diet as yourself, very unlikely that the medical docs will diagnose him...

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Forgot to say that my double DQ1 sister was diagnosed by blood, & my double DQ1 friend by biopsy & then thru Enterolab, & now her gastro uses Enterolab for his other patients.

Most people that have a positive biopsy do not also test to see which genes they have. Not all biopsy positive people have DQ2 or DQ8.

DQ1 people not only have to fight the ignorant public but the celiac community as well. You will soon get used to it. IMO Double DQ1 is worse than DQ2 or DQ8.

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Thank you for your replies. I am still trying to convince both my parents, especially my mom to get tested. She doesn't want to believe it. To me most of her problems could be connected to gluten ie: Type 1 diabetes, thyroid disease,osteoporosis, unexplained belly pain, frequent kidney stones, frequent stools (formed though),chronic cough(non-smoker). She is so stubborn, but I honestly believe she just doesn't want to give up her favorite foods. I wish I could convince her somehow.......

I have another question for everybody. I tested positive for casein, soy, and egg as well......should I be leary of these products in my shampoo and personal products as well. For example my shampoo contains soy and casein in it? I don't know how strict to take this? What does everyone else do?

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I had taken out products with soy, but SLSulfate's are really bad too. It really depends. Just cut out the food first and if you still have lingering symptoms start clearing out the beauty products.

Do make sure that gluten is out of everything though.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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