New & need feedback on EnteroLab results

[live&learn]

Hi Everyone,

I'm not sure this post will go through because I never received the e-mail stating that my account was activated. So this is a test...

[cruelshoes]

We're here. Post away.
_________________
-Colleen

Where are we going, and what am I doing in this handcart?

[live&learn]

Okay, it went through, so here are the results.

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Antigliadin IgA 8 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 5 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 1255 Units (Normal Range <300 Units)

Fecal anti-casein (cow’s milk) IgA antibody 5 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0302

HLA-DQB1 Molecular analysis, Allele 2 0602

Serologic equivalent: HLA-DQ 3,1 (Subtype 8,6)

C) Egg, Yeast, and Soy Food Sensitivity Stool Panel
Fecal anti-ovalbumin (chicken egg) IgA antibody 5 Units (Normal Range <10 Units)

Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 4 Units (Normal Range <10 Units)

Fecal Anti-Soy IgA 6 Units (Normal Range <10 Units)

Interpretation of Fecal Antigliadin IgA: Intestinal antigliadin IgA antibody was below the upper limit of normal, and hence there is no direct evidence of active gluten sensitivity from this test. However, because 1 in 500 people cannot make IgA at all, and rarely, and 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 a syndrome or symptoms known to be associated with gluten sensitivity, a gluten-free diet may help you despite a negative test. If you have no syndrome or symptoms associated with gluten sensitivity, you can follow a gluten-containing healthy diet and retest in 3-5 years; or you may opt to go gluten-free as a purely preventive measure.

Interpretation of Fecal Antitissue Transglutaminase IgA: The level of intestinal IgA antibodies to the human enzyme tissue transglutaminase was below the upper limit of normal, and hence, there is no evidence of a gluten-induced autoimmune reaction.

Interpretation of Quantitative Microscopic Fecal Fat Score: A fecal fat score greater than or equal to 300 Units indicates there is an increased amount of dietary fat in the stool which usually is due to gluten-induced small intestinal malabsorption/damage when associated with gluten sensitivity. Values between 300-600 Units are mild elevations, 600-1000 Units moderate elevations, and values greater than 1000 Units are severe elevations. Any elevated fecal fat value should be rechecked in one year after treatment to ensure that it does not persist because chronic fat malabsorption is associated with osteoporosis among other nutritional deficiency syndromes.

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: HLA-DQB1 gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue, HLA-DQB1*0201 or HLA-DQB1*0302. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a non-celiac gene predisposing to gluten sensitivity (any DQ1, DQ2 not by HLA-DQB1*0201, or DQ3 not by HLA-DQB1*0302). Having one celiac gene and one 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 a gluten sensitive gene. Having two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac disease may be more severe.

Interpretation of Fecal anti-ovalbumin (chicken egg) 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 Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA: 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 Fecal Anti-Soy IgA: 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.

I need to go do a few things. I'll post my history in a while.

Tawny

[live&learn]

Hi again!

I can’t tell you how shocked I was when my results came back negative, especially for gluten and casein. I immediately called and spoke with a woman at EnteroLab. She said I need to get a Total IgA test to see if I am even capable of producing enough IgA. She said that with my symptoms, main celiac gene (and gluten sensitive gene) and severe malabsorption, it is very suspicious. I guess some people do test negative with EnteroLab!

I made a mistake, though. I told her that I first tried a gluten free diet 1 ½ -2 years ago, but I found some of my old lab tests after our conversation. It’s been 3 ½ years!!! I told her that I decided to eat gluten and dairy every day for approximately 2 weeks before I did the test to make sure something would show up. She said that wasn’t long enough since I had mostly been off gluten for 1 ½ - 2 years. Now I know it’s been even longer than I thought. This might be the reason my test results were negative, or it could be IgA deficiency.

When I saw the doctor 3 ½ years ago, my lab tests showed I was very anemic. I told the dr. that based on my symptoms, I thought I had some kind of autoimmune disease. She decided to have me do a lupus and rheumatoid arthritis panel, but I never did them, because I started following Dr. Joel Fuhrman’s autoimmune protocol, which, at least at the time, was gluten and dairy free. I started to feel SO MUCH BETTER—not perfect but significantly better. For some reason, though, I never checked my supplements or lipstick for gluten, etc. Well, I was quite strict for a while, but with no official diagnosis (and NO support from anyone that had similar issues), I started to feel like maybe I was crazy and my response to the diet was all in my head. It’s amazing, but I actually forgot how miserable I really felt before. Gluten gradually started slipping back into my life in small amounts, and I had to recover from each exposure, so it was never more than once or twice a week. I didn’t know ANYTHING about celiac disease or gluten intolerance. I just knew that, for whatever reason, I felt so much better without gluten and dairy in my life.

Just when I was really starting to feel like I was stuck on an island by myself, my mom’s friend told me about EnteroLab. She tested positive for gluten, casein and soy. Now it explains why she has severe osteoporosis, etc. After reading about celiac and gluten intolerance, I decided to test, too. I didn’t even realize it had been 3 ½ years. All I can say is that my health took a total nose dive when I did the 2-week gluten challenge. There were a few days that I actually felt so ill that I couldn’t do it. My husband told me to stop, because the last few days I started to get chest pains. I’m really not sure if it was indigestion or what, but it was scary. Also, I became so depressed, and the inside of my mouth got bright red and felt raw and painful.

Other symptoms I have/had …

Common ones: anemia, headache, dark circles under eyes, ache around eyes, brain fog, depression, anxiety, tired beyond belief, mouth sores, dry mouth, general very ill feeling, body aches, hair loss, gas, stomach ache, slight peripheral neuropathy in feet, insomnia

Additional symptoms I get with larger amounts of gluten AND dairy (a deadly combo for me!): decreased ability to inhale deeply, neck pain, strange sensation in neck/throat (like when your hands/feet “fall asleep”), and tingling sensation in lips, cough, phlegm, joint pain

Infrequent symptoms: rash, chest pain/tightness

Anyway, the second I completed the EnteroLab test, I went gluten & dairy free again. I feel like I literally destroyed my health in 2 weeks…I came close to going to the ER. Within a few days, I felt so much better, though. It took almost 3 weeks till my mouth sores were 100% gone, and exactly 3 weeks and 1 day after GFCF someone took the cotton out of my head.

I went GFCF on 6/22/08, and I decided to go yeast free a few days later. I found out that my iron contained gluten! I still need to check some of my makeup, but I finally figured out my supplements. I have an appointment to see the doctor in October. I plan to get the Total IgA, lupus and rheumatoid arthritis panel, and regular blood tests to check my iron, etc. I guess I will never have an official dx because I refuse to put my body through any sort of gluten challenge again. I am more aware this time around, and I’m also trying to reach out for support (and give support). My husband saw what happened to me during the 2-week challenge, so he’s very understanding.

If you made it through all this, thanks for reading. Sorry it’s so long! If you have any questions, thoughts or suggestions, please let me know. I am so relieved to not feel alone with this.

Take care,
Tawny

[cruelshoes]

You have been through quite a journey. I guess you already know what your body is trying to tell you, regardless of what the enterolab results say. Being GF for a long time before testing or being IgA deficient can certainly skew the results of any testing. Dietary response is a form of diagnosis in itself.

If you are looking for support, you have certainly come to the right place. We are all a little wacky, but we are very helpful too. Poke around the forum. I think you will like what you see. I am eager to hear more about you and hope we can help each other through this crazy GF life.
_________________
-Colleen

Where are we going, and what am I doing in this handcart?

[live&learn]

Thanks so much! I'm feeling SO much better! I'm still a little tired, but that's it! One month ago I thought I was dying, so it feels like a miracle. My 44th birthday is next month, so my next challenge is to find an easy and delicious GFCFYF cake that my mom can make for me. She always makes me something...