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Enterolab Results In


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#1 researchmomma

 
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Posted 26 January 2012 - 03:48 PM

Well after 2 months on this forum and almost 13 years of bad health, I think I have a little confirmation of gluten intolerance in my daughter. However, the diet has been the best confirmation.


Her IgA results are somewhat negated because her total IgA serum is low 43 and normal is 68-300 (this was checked twice) but Enterlab said to call them when the results are in so they could help interpret. I dont' think I need to do that.


Gluten Sensitivity Stool Panel
Fecal Anti-gliadin IgA 7 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 11 Units (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score 490 Units (Normal Range is less than 300 Units)

Gluten Sensitivity Gene Test
HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 0501

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)


Isn't DQ1,1 also associated with Celiac Disease???? Any comments and help welcome!
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#2 IrishHeart

 
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Posted 26 January 2012 - 04:07 PM

Well, I had no doubt your daughter was gluten intolerant from all you have told me. Looks like Mom and Dad are gluten sensitive (at least) as well.

The fecal fat score indicates malabsorption of some kind is going on! Pancreatic enzyme deficiency perhaps??--What did the report say?



Genetic Testing for Celiac Disease by Edwin Liu, MD Jan 2006


Genetic testing is available that can show whether you carry the genetic predisposition for developing gluten sensitivity or celiac disease. It is not diagnostic of active disease, but it may provide supportive information in cases where someone is symptomatic, but fails to meet the rigid criteria for a solid celiac diagnosis. It is also used to rule out Celiac Disease in those who do not carry the genetic predisposition for Celiac Disease.


95% of all those with celiac disease will show one of two genetic markers, HLA DQ2 (90%) or HLA DQ8 (5%). As many as thirty percent of the population carry this genetic makeup but only one percent develop Celiac Disease.


Another marker, HLA DQ1, has been identified by both Dr. Kenneth Fine and Dr. Marios Hadjivassilou as being associated with a Non-Celiac Gluten Sensitivity. While those who carry HLA DQ1 rarely show villous atrophy, it does happen on occasion. Since about 1-2% of biopsy proven celiacs carry the HLA DQ1 gene, it may be questionable practice to rule out Celiac Disease solely by the absence of the main genes (HLA DQ2 or HLA DQ8).


While HLA DQ1 is not recognized by most celiac experts as being associated with celiac disease, Dr. Hadjivassilou has found HLA DQ1 in about 20% of his gluten sensitive (antigliadin positive) neurological patients. The remaining 80% have either HLA DQ2 or HLA DQ8 consistent with the celiac population.


From "Gluten sensitivity as a neurological Illness" by M Hadjivassiliou, R A Grunewald, G A B Davies-Jones:

"Within the group of patients with neurological disease and gluten sensitivity (defined by the presence of anti-gliadin antibodies) we have found a similar HLA association to that seen in patients with celiac disease: 70% of patients have the HLA DQ2 (30% in the general population), 9% have the HLA DQ8, and the remainder have HLA DQ1. The finding of an additional HLA marker (DQ1) seen in the remaining 20% of our patients may represent an important difference between the genetic susceptibility of patients with neurological presentation to those with gastrointestinal presentation within the range of gluten sensitivity."

If it walks like a duck, quacks like a duck.....
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#3 researchmomma

 
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Posted 26 January 2012 - 04:16 PM

Well, I had no doubt your daughter was gluten intolerant from all you have told me. Looks like Mom and Dad are gluten sensitive (at least) as well.


Genetic Testing for Celiac Disease by Edwin Liu, MD Jan 2006


Genetic testing is available that can show whether you carry the genetic predisposition for developing gluten sensitivity or celiac disease. It is not diagnostic of active disease, but it may provide supportive information in cases where someone is symptomatic, but fails to meet the rigid criteria for a solid celiac diagnosis. It is also used to rule out Celiac Disease in those who do not carry the genetic predisposition for Celiac Disease.


95% of all those with celiac disease will show one of two genetic markers, HLA DQ2 (90%) or HLA DQ8 (5%). As many as thirty percent of the population carry this genetic makeup but only one percent develop Celiac Disease.


Another marker, HLA DQ1, has been identified by both Dr. Kenneth Fine and Dr. Marios Hadjivassilou as being associated with a Non-Celiac Gluten Sensitivity. While those who carry HLA DQ1 rarely show villous atrophy, it does happen on occasion. Since about 1-2% of biopsy proven celiacs carry the HLA DQ1 gene, it may be questionable practice to rule out Celiac Disease solely by the absence of the main genes (HLA DQ2 or HLA DQ8).


While HLA DQ1 is not recognized by most celiac experts as being associated with celiac disease, Dr. Hadjivassilou has found HLA DQ1 in about 20% of his gluten sensitive (antigliadin positive) neurological patients. The remaining 80% have either HLA DQ2 or HLA DQ8 consistent with the celiac population.


From "Gluten sensitivity as a neurological Illness" by M Hadjivassiliou, R A Grunewald, G A B Davies-Jones:

"Within the group of patients with neurological disease and gluten sensitivity (defined by the presence of anti-gliadin antibodies) we have found a similar HLA association to that seen in patients with celiac disease: 70% of patients have the HLA DQ2 (30% in the general population), 9% have the HLA DQ8, and the remainder have HLA DQ1. The finding of an additional HLA marker (DQ1) seen in the remaining 20% of our patients may represent an important difference between the genetic susceptibility of patients with neurological presentation to those with gastrointestinal presentation within the range of gluten sensitivity."

If it walks like a duck, quacks like a duck.....

Great info and one of her biggest issues is neuro. She has occipital based seizures and a few other weird ataxia issues.
Well, even though the medical community doesn't really recognize DQ 1 as a gluten sensitive gene, it does make me feel better. I know that a few docs believe, but not many!
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#4 IrishHeart

 
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Posted 26 January 2012 - 04:20 PM

Great info and one of her biggest issues is neuro. She has occipital based seizures and a few other weird ataxia issues.
Well, even though the medical community doesn't really recognize DQ 1 as a gluten sensitive gene, it does make me feel better. I know that a few docs believe, but not many!



I remember! And that is why I looked for the nuero connection article ;)


The fecal fat score indicates malabsorption of some kind is going on! Pancreatic enzyme deficiency as well perhaps??
This can means nutritional deficiencies in her, too.

Chronic fat malabsorption is associated with osteoporosis and other nutritional deficiencies-- so you will need to watch this.

But I think staying gluten-free is the best thing you can do!

Congrats! I know how hard you have worked to get J. well.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#5 researchmomma

 
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Posted 26 January 2012 - 04:30 PM

I remember! And that is why I looked for the nuero connection article ;)


The fecal fat score indicates malabsorption of some kind is going on! Pancreatic enzyme deficiency perhaps??--What did the report say?


I sent it to you in a PM. However, her fecal fat value 490 and typical results for pancreatic issue is 600-1000. But I will bring it up to her GI. what a joke that will be.

I think if I bring this enterolab report to her, she will blow me off.

Anyone else have any luck in convincing their docs with the enterolab reports?
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#6 burdee

 
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Posted 26 January 2012 - 04:32 PM

Well after 2 months on this forum and almost 13 years of bad health, I think I have a little confirmation of gluten intolerance in my daughter. However, the diet has been the best confirmation.


Her IgA results are somewhat negated because her total IgA serum is low 43 and normal is 68-300 (this was checked twice) but Enterlab said to call them when the results are in so they could help interpret. I dont' think I need to do that.


Gluten Sensitivity Stool Panel
Fecal Anti-gliadin IgA 7 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 11 Units (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score 490 Units (Normal Range is less than 300 Units)

Gluten Sensitivity Gene Test
HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 0501

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,5)


Isn't DQ1,1 also associated with Celiac Disease???? Any comments and help welcome!

Enterolab usually includes an interpretation with your test results. That should answer your questions about the gene test. However, you can also call or email the lab and ask questions. They were very helpful with answering my questions.
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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.


#7 nora_n

 
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Posted 27 January 2012 - 12:08 AM

I have two DQ5 too, and I have DH and I am very gluten sensitive.
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gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)

#8 researchmomma

 
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Posted 27 January 2012 - 08:44 AM

I have two DQ5 too, and I have DH and I am very gluten sensitive.


Hi Nora, I believe my daughter is DQ 1, 1 based on the above results. Am I wrong?

Thanks!
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#9 researchmomma

 
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Posted 27 January 2012 - 10:40 AM

Hi Nora, I believe my daughter is DQ 1, 1 based on the above results. Am I wrong?

Thanks!


OK I get it now. She is DQ 5,5 which is a part of DQ 1,1
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#10 Skylark

 
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Posted 27 January 2012 - 10:47 AM

Hi Nora, I believe my daughter is DQ 1, 1 based on the above results. Am I wrong?

Thanks!

Your daughter is DQ5. On the Enterolab reports, the numbers in parenthesis are the modern designations. DQ1 is an old serotype that got split more accurately into DQ5 and DQ6 in the '90s and isn't used much anymore.
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#11 researchmomma

 
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Posted 27 January 2012 - 11:13 AM

Your daughter is DQ5. On the Enterolab reports, the numbers in parenthesis are the modern designations. DQ1 is an old serotype that got split more accurately into DQ5 and DQ6 in the '90s and isn't used much anymore.


Thank you Skylark. I have a question for you. I know that GIs don't really believe in the fecal ttg results as they haven't been properly correlated to blood work through clinical trials. However, since my daughter has low total IgA and she came up a bit elevated on tTg IgA, do you think that holds any weight? I talked to the lab and they were surprised she came up elevated with a low serum total IgA. They said that made it more significant and that I should discuss it with the GI.

They also state that the GI can't really dispute the the fecal fat result. She obviously is not absorbing fat and possibly other nutrients. Do you agree that the GI may actually consider that fecal result significant???
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#12 Skylark

 
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Posted 27 January 2012 - 11:33 AM

Legally, your doctor cannot diagnose with a test that has not been validated. It opens him to enormous malpractice issues. Besides, fecal anti-gliadin IgA alone doesn't predict diddlysquat. I keep trying to get people to look at the slides posted on the Enterolab website but nobody listens.

Fecal TTG is a more useful test but remember that Dr. Fine developed fecal TTG as a test for microscopic colitis, and that it can also appear in Crohn's as well as celiac. Fecal fat is similarly a similarly nonspecific measure of malabsorption. Without any positive results on specific tests for celiac and without celiac risk genes, your doctor can not assume gluten intolerance is the issue. To further cloud the water, some people with inflammatory bowel diseases improve off gluten. Other issues need to be ruled out first.

The TTG result is certainly interesting but what your daughter needs is an IgG celiac panel and an endoscopy. Did she not get proper testing before she went off gluten?
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#13 researchmomma

 
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Posted 27 January 2012 - 11:55 AM

Legally, your doctor cannot diagnose with a test that has not been validated. It opens him to enormous malpractice issues. Besides, fecal anti-gliadin IgA alone doesn't predict diddlysquat. I keep trying to get people to look at the slides posted on the Enterolab website but nobody listens.

Fecal TTG is a more useful test but remember that Dr. Fine developed fecal TTG as a test for microscopic colitis, and that it can also appear in Crohn's as well as celiac. Fecal fat is similarly a similarly nonspecific measure of malabsorption. Without any positive results on specific tests for celiac and without celiac risk genes, your doctor can not assume gluten intolerance is the issue. To further cloud the water, some people with inflammatory bowel diseases improve off gluten. Other issues need to be ruled out first.

The TTG result is certainly interesting but what your daughter needs is an IgG celiac panel and an endoscopy. Did she not get proper testing before she went off gluten?


Good info. Our GI went about things backward. She gene tested her first (low total IgA) and since she is not DQ 2 or DQ 8 (3) positive, she would not do the endoscopy. She also had a negative IgG tTg, but I don't know what her total IgG was.

She is improving on gluten free diet but the GI told me that since she doesn't have the genes, that she didn't need to be gluten free. I should put her on high dose prilosec instead.

All I really want is some blood work for malabsorption of the basics like folate, B12, etc. I would also like a bone density test since she has broken her wrist 3 X already while doing things that were fairly benign.

Skylark, I am assuming you can have malabsorption and inflammation in the gut due to gluten intolerance (non-celiac), correct? Or should I be pushing to see if she has something like Crohn's Disease or Ulcerative Colitis?
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#14 Skylark

 
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Posted 27 January 2012 - 12:11 PM

With her current results you cannot rule out Crohn's or ulcerative colitis. Yes, malabsorption is possibly with non-celiac gluten sensitivity.

Total IgG isn't usually tested. Low IgA is a risk factor for celiac. Is the only IgG test she got TTG? I would be nice if your daughter had gotten an endoscopy but she's gluten-free now so it wouldn't be reliable.

You might push harder to exclude diagnoses other than gluten intolerance in a few months if she doesn't keep responding to the gluten-free diet. Right now it sounds like you're on the right track. If your daughter had a LOT of symptoms of Crohn's or ulcerative colitis one would hope her GI would have picked it up. Obviously high-dose prilosec is not where you want to go. :blink: Has her GI even tested to see if she has too much stomach acid?

If your GI isn't willing to do vitamin tests based on the fecal fat evidence of malabsorption and the fractures, her primary care doctor might.
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#15 researchmomma

 
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Posted 27 January 2012 - 01:02 PM

With her current results you cannot rule out Crohn's or ulcerative colitis. Yes, malabsorption is possibly with non-celiac gluten sensitivity.

Total IgG isn't usually tested. Low IgA is a risk factor for celiac. Is the only IgG test she got TTG? I would be nice if your daughter had gotten an endoscopy but she's gluten-free now so it wouldn't be reliable.

You might push harder to exclude diagnoses other than gluten intolerance in a few months if she doesn't keep responding to the gluten-free diet. Right now it sounds like you're on the right track. If your daughter had a LOT of symptoms of Crohn's or ulcerative colitis one would hope her GI would have picked it up. Obviously high-dose prilosec is not where you want to go. :blink: Has her GI even tested to see if she has too much stomach acid?

If your GI isn't willing to do vitamin tests based on the fecal fat evidence of malabsorption and the fractures, her primary care doctor might.


She had the Deamidated Gliadin Abs, IgG and tTg IgG which were both negative.

I have run clinical studies in UC and Crohn's and she doesn't seem to have those symptoms but I will ask the GI if they can be ruled out.

Hopefully she will run the labs that I ask for.

One last question, as I stated her GI wanted her on priolosec 40mg QD. I didn't do it and she is going to be mad. Fecal fat has nothing to do with potential acid reflux right? I can find no link online. Just a note that my daughter has no symptoms of reflux when gluten-free. NONE
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