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Enterolab Test Results


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32 replies to this topic

#16 Jestgar

 
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Posted 18 June 2010 - 12:24 PM

Gotcha! B) I'll put a wee bit more detail in the thread next time.

:) Thanks. We're working on making this an excellent forum, not just a great one and links and explanations go a long way towards that.
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"But then, in all honesty, if scientists don't play god, who will?"
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#17 Skylark

 
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Posted 18 June 2010 - 01:45 PM

Here is one article that says DQ7 (beta 0301 and 0304) and DQ5 (beta 0501) have been found in celiacs:
http://www.clinchem..../full/44/8/1755 note the conclusion is different from what we read out of the article......researchers probably are not allowed to publish they found other genes in celiacs.

Allowed by whom? I get very upset when people say things like that because it impugns the integrity of scientific work. Studies are a lot of work, and getting journal articles through the peer review process is even more so. This comment reads as if there is some imaginary council of overlords controlling what scientists can and cannot publish. I assure you that this is not the case. Individual journal editorial boards absolutely have bias, but you can always eventually find a journal that will take a well designed study. With Pubmed indexing and the Internet, even low impact factor journals are useful.

I don't agree with you that their conclusion is different from the data. The researchers are testing the hypothesis that their rapid genetic test for DQA10501/DQB10201 (DQ2.5) can be used as a laboratory diagnostic marker to help find people who are celiac. Their conclusion shows that their hypothesis was correct, and that DQ2.5 has some predictive value. They don't rule out other alleles, and even present an association of DQ7 with celiac disease.
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#18 nora_n

 
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Posted 19 June 2010 - 03:24 AM

Skylark I hear you, but I speak for myself I am double DQ5 and they actually use the gene test for DQ2 and DQ8 to absolutely exclude a celiac diagnosis for the likes of me.

I even have DH, and my migraines stopped after stopping gluten, and I had to double thyroid hormones because of malabsorption, and then go back on the original thyroid hormone dose after the gut got more normal, and so on.

I am in Norway, where Sollid and Lundin have gotten a lot of gluten about how the DQ2 works re. celiac, so they do not want to hear anyting about other genes here. I was even tested at their lab.

I ahve been on thyrod forums for ages, and read the research, and it is all rigged to get the results they wanted in the first place. Example: they postulate that t3 is ineffective, so they give some subjects some t3 AFTER reducing the dose of the t4 so the TSH gets even higher, and the free t3 and the free t4 gets lower than before, and conclude it was ineffective. They did such things in several studies. Jorde in Norway did a similar thing, they screened the whole population in Tromso for undiagnosed male hypos then they gave them t4 in small doses and noone got a TSH lower than 2,5, and they did not improve, so t4 to subclinical hypos was ineffective. Go figure, they wer all grossly underdosed. TSH should go to 1 or lower before anythign happens, everyone knows that.

Again: they use the gene test to rule out celiac.

(my back hurts this morning and I am a bit cranky, this will pass)

Nora
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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)

#19 Skylark

 
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Posted 19 June 2010 - 09:50 AM

I'm so sorry to hear you had a bad experience getting your celiac diagnosed. I think a lot of us are angry around here, me included. I had diagnoses of food allergies, gastritis, borderline anemia, IBS, and depression, all of which resolved when I stopped eating gluten. No doctor I saw even suggested I be tested for celiac.

I looked at Sollid and Lundin's articles and they do seem to suffer from some tunnel vision about celiac alleles. I see why you wrote what you did. Please don't extend your very legitimate anger over bad experiences to all scientists. Some of us try really hard to stay objective (and even spend time on message boards trying to be helpful as we look for a little company and emotional support).
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#20 nora_n

 
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Posted 20 June 2010 - 08:14 AM

skylark, I am not cranky today, and my back does not hurt, and I have been in the garden doing some gardening, and managed to get the flowers planted in the pots (urns) that are supposed to sit around the porch here. Nice.

Thank you for your answer.

What science do you do?

Lundin is the expert connected with the norwegian celiac society and he says wheat starch is okay for celiacs, but other doctors in Norway shudder at the thought of wheat starch.
I cannot eat most gluten-free items here, since most are based on wheat starch.
I guess DQ2 celiacs with mostly symptoms in the gut tolerate wheat starch, whereas we who have DH and DQ1 (which have gluten intolerance in the rest of the body, including the CNS) are very sensitive.

I have yet to test the new gluten-free wheatstarch that they have started to make in accordance to the new rules, it is below 20ppm. I will try it and post here some day.

I do find it interesting that there are two kinds of celiacs, those that tolerate some ppm gluten, and those that are very sensitive. There is little talk about that.
I also tolerate oats (gluten-free oats) and some percent of celiacs do not.

Nora
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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)

#21 jerseyangel

 
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Posted 20 June 2010 - 08:46 AM

I do find it interesting that there are two kinds of celiacs, those that tolerate some ppm gluten, and those that are very sensitive. There is little talk about that.

I find that very interesting too. I'd love to hear what the experts have to say about it.
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#22 Skylark

 
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Posted 20 June 2010 - 09:48 AM

Nora, I'm not going to talk about exactly what science I do because I have spoken so openly about my bipolar illness here. It's very important to me to spread my story of gluten-related bipolar illness in case I might help someone else who is suffering the way I did. Bipolar illness carries a tremendous stigma and job interviewers regularly Google search people.

I have a Ph.D. and most of my work these days is computational. I am studying a protein that might be involved in Lupus, and another that is involved in cancer. I come here sometimes while my computer is chugging away. I did about ten years of laboratory biochemistry, and I've done some clinical trials statistics as well.

As for the gluten tolerance, there is a classic study on Codex wheat starch where they fed it to 17 celiacs for a year. Nobody in the study became positive for anti-gliadin IgG or IgA. Two had no symptoms at all, and four others had only mild symptoms with a little occasional diarrhea. The other eleven had fatigue, GI trouble, DH outbreaks and other discomfort. Only the two people without symptoms wanted to keep eating the stuff at the end of the study.
http://www.ncbi.nlm..../pubmed/9183321

Maki did a recent study where he biopsied a random series of celiacs and DH patients, most of whom were eating Codex wheat starch products regularly. Only those celiacs who admitted to cheating with normal bread had villous damage. There were six in his group of 52 who didn't eat any wheat starch products and instead chose to follow a naturally gluten free diet. Nobody eating the Codex starch showed villous damage, which is good. In the conclusion he writes "However, we agree that there will always be some patients who require a naturally gluten free diet to remain symptom-free." In this cohort, that was 11% of the people.
http://www.ncbi.nlm....pubmed/10192194

So, even in the studies scientists see a range of sensitivity and it's not correlated to mucosal damage.
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#23 nora_n

 
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Posted 20 June 2010 - 10:10 AM

The old wheat starch many years ago had 200 or more ppm, so they did find some damage according to the canadian celiac society webpage.

I believe tehre is another study showing damage from wheat starch, I will have to mail someone privately to get that one.

me, I get DH and I throw up from wheat starch, but I do not try it often. Several people on the orwegian forum never got better, or their antibodies stayed high, while eating codex wheat starch. One person had to stop eating other grains and starches before the antibodies went down. (that is interesting, since there was a huge outcry about a newspaper reporter who wrote about something similar, that some have to stop corn too, on another forum and tey even wrote to the publisher to stop spreading nonsense, yet we had someone with a similar experience here)
So there are a very few patietns who must eat even stricter before their antibodies go down.

I must say 17 people is a small trial.

Interestng about the 11%, we had stipulated the percentage to be around that, like 15%.

Mäki is interesting, http://www.ncbi.nlm....d?term="Mäki M"[Author]
they have wheat starch in Finland as far as I know, and i found out they have that in Poland too.
I was there last week-end and got some DH from the rolls. There was very very little gluten in them, though otherwise my intestines would have felt like barb wire in them.

The celiacs here actually want the wheat starch.

nora
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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)

#24 Michaelismenten

 
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Posted 22 May 2012 - 04:33 AM

As someone who is a double DQ9 I can say from personal experience that it can have devestating effects on the body and brain when combined with gluten. That gene is not to be taken lightly IMHO. If you read my signature the reason I say that is obvious.


This is very interesting. I am a researcher working on celiac disease in Norway. I have recently published a paper suggesting that DQ9 seems to predispose for celiac disease, based on studies from one single patient. Obviously investigation of more patients would be useful to confirm this association and how celiac disease manifests in this rare patient group.

Best regards,

Michael
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#25 MitziG

 
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Posted 22 May 2012 - 07:06 AM

It seems this thread has gotten away a bit from the OP's question.

My advice, if you can, is get a celiac blood panel done while you are eating gluten. Expect it to be negative, but do it anyway.

Then, go gluten-free. Ipersonally feel no one is benefiting by eating it!
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#26 ravenwoodglass

 
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Posted 23 May 2012 - 02:35 AM

This is very interesting. I am a researcher working on celiac disease in Norway. I have recently published a paper suggesting that DQ9 seems to predispose for celiac disease, based on studies from one single patient. Obviously investigation of more patients would be useful to confirm this association and how celiac disease manifests in this rare patient group.

Best regards,

Michael


Welcome to the board. I would be quite interested in this study. Do you have a link to it?
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

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

#27 ravenwoodglass

 
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Posted 23 May 2012 - 02:38 AM

It seems this thread has gotten away a bit from the OP's question.

My advice, if you can, is get a celiac blood panel done while you are eating gluten. Expect it to be negative, but do it anyway.

Then, go gluten-free. Ipersonally feel no one is benefiting by eating it!

This thread is a couple years old and the OP has not been around since asking the original question.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

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

#28 MitziG

 
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Posted 23 May 2012 - 04:35 AM

Lol- teach me to look at the date and not just assume it is recent just because it got bumped up top!
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#29 ravenwoodglass

 
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Posted 23 May 2012 - 06:55 AM

Lol- teach me to look at the date and not just assume it is recent just because it got bumped up top!


I think everyone does that now and then. :)
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

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

#30 nora_n

 
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Posted 23 May 2012 - 07:06 AM

Michael, there are some abstracts on pubmed about the japanese celiacs usually having DQ9, but that is because the japanese have so many DQ9. Of course you know that DQ9 and DQ7 differ from DQ8 by just one or two tiny things, base pairs or whatever.
  • 0
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)




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