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    Do you have questions about celiac disease or the gluten-free diet?

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I have wondered about this also. When I did a search it seems that celiac genes are not either. Because they are a haplogroup they don't behave quite the same way as other genes. I didn't fully understand much of what was out there but if you google 'celiac genes recessive dominent' (sp?) quite a bit will come up.

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hmmm...

How is the genetic predisposition for Celiac Disease Inherited?

Inheriting the genes for celiac disease occurs differently than the manner in which many genetic traits are passed on. We are accustomed to thinking in terms of dominant or recessive genes which are inherited from both parents and form sets to determine hair color, height, and other human health characteristics. In fact, even though DQ2 and DQ8 are passed on similarly, they are not sufficient to determine the occurrence of the disease, even if they are present in double doses.

Because 35% of the American population have either DQ2 (more commonly) or DQ8, it is possible for two affected people to marry each other. The genes can be passed on by males as well as females. Therefore, one person's gene test doesn't necessarily mean that the other side of the family is not affected as well.

http://www.celiacdisease.net/testing

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Glad you were able to find an answer, I just wish they would recognize that more than those two genes are involved. We really can't rely on gene testing for diagnosis, there are many more contributing genes than the US acknowledges. I am a prime example of that.

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Glad you were able to find an answer, I just wish they would recognize that more than those two genes are involved. We really can't rely on gene testing for diagnosis, there are many more contributing genes than the US acknowledges. I am a prime example of that.

I would be another prime example too. My daughter's test came back positive for DQ2 and DQ8, and my test came back negative. If my daughter had the "official" diagnoses, we would have been in the study at Columbia to identify the "missing gene".

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I would be another prime example too. My daughter's test came back positive for DQ2 and DQ8, and my test came back negative. If my daughter had the "official" diagnoses, we would have been in the study at Columbia to identify the "missing gene".

They should at least look at the studies done in other countries. In Japan and possibly other countries my gene is a recognized celiac gene. Here if they had done genetic testing they would have diagnosed me with rheumatoid arthritis, which I did have symptoms of and is now in remission. Here my DQ9 gene is considered one for RA, not a recognized celiac gene. There are of course other things related to DQ9 like psoriasis and a rare form of adult onset diabetes. We are very early on in the study of genetics, and we are learning more every day. One of the most important things IMHO is that while genetics is a valuable tool in the study of what causes stuff we can't rely soley on that for diagnosis.

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I wouldn't rely too much on the current knowledge of celiac genes. I don't have DQ2 OR DQ8, but I am a diagnosed celiac. I actually have been diagnosed with refractory sprue. There are definitely more genes involved. Give it time and I'm sure they will be recognized.

-Brian

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Brian, Did you have an endoscopy and repeat endoscopy that showed flattened villi?

Now that is the 100,000 dollar question. I doubt you will receive an answer. It seems to me, the 2 of you have been there and done this before. Maybe the fact that you don't get an answer is your answer.

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neesee, What the hell does that mean? Are you calling me a liar? Did it ever occur to you that I haven't checked the post in a few days? I live off of IV nutrition because I have so much inflammation from what the doctor calls "severe continuous celiac disease". So considering that my physical condition was life-threatening a few months back, I don't see this as a joke. I was thoroughly tested, and the answer to Laura's question is yes. So I'd appreciate it if you would get off your high horse and mind your own business before you criticize.

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Now that is the 100,000 dollar question. I doubt you will receive an answer. It seems to me, the 2 of you have been there and done this before. Maybe the fact that you don't get an answer is your answer.

Excuse me, what did you mean by that statement? I am going to hope it was an incomplete thought and poorly worded and not the nastyness it comes across as. Would you care to clarify?

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Now that is the 100,000 dollar question. I doubt you will receive an answer. It seems to me, the 2 of you have been there and done this before. Maybe the fact that you don't get an answer is your answer.

"Yes I am the one who doesn't have the genes, but I was diagnosed by my gastroenterologist. Enterolab just confirmed it for me. So yes, my allergist thinks that I have refractory sprue. No biopsys have been done since June when I was hospitalized. My allergist said that even though I don't have the genes, it really doesn't matter and refractory sprue is most likely what is causing my GI issues."

Perhaps you don't remember reading this on another post from Brian. He has been diagnosed and is going through a real tough time. In the poor physical condition he is in at this point if the doctors do not want or feel they need to rebiopsy then they won't. I do hope you choose to clarify your above statement.

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Ravenwoodglass, thanks for the support, I really appreciate it. That's what this message board is all about.

-Brian

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neesee, What the hell does that mean? Are you calling me a liar? Did it ever occur to you that I haven't checked the post in a few days? I live off of IV nutrition because I have so much inflammation from what the doctor calls "severe continuous celiac disease". So considering that my physical condition was life-threatening a few months back, I don't see this as a joke. I was thoroughly tested, and the answer to Laura's question is yes. So I'd appreciate it if you would get off your high horse and mind your own business before you criticize.

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Post #1

This message was posted: Jan 7 2007, 02:35 AM

Hey Everyone,

I was just wondering if you think positive Enterolab results count as an official diagnosis. Those of us diagnosed through Enterolab can't really say that our doctor diagnosed us. Just wondering what you think. Thanks,

-Brian

What am I to think when I find statements like this?

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Post #26

This message was posted: Jan 26 2007, 06:20 PM

Brian,

Thanks for sharing the information.

So you had positive bloodwork (including tTG?), a positive biopsy will villous atrophy, but you don't have either DQ2 or DQ8? You ARE special, then!!!!!!!

I think at some point, there was another non-gene person on the board. I dont think they are around that often.

Malabsorption is not solely caused by Celiac, so it in itself does not diagnose Celiac.

(Do not think at all that I am questioning your diagnosis, I don't really care why someone decides -or has it decided for them by test results!-that gluten is bad for them, I am happy they have found the answer. I'm just interested in the path that people have gone on to figure it out!)

Laura

I know you saw this because you continued to post in this thread. Why didn't you respond to this?

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Board rule #1 is:

Do not be abusive or otherwise out of line towards other board members. Show respect for each board member, no matter what you think of their views. This is not a place to quarrel.

This rule is not being taken to heart by some participants in this discussion.

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Brian,

I truely apologize. I've actually been very concerned about your condition. I really hope your drs. haven't settled on refractory sprue because I'm not sure all the facts fit. You don't have the genes and you have not responded to the diet. I'm not at all sure what kind of tests you have really had. I know if I were in your situation, I'd keep pushing the drs. for answers.

Unfortunately, we are all victims of our drs. incompetence from time to time. To diagnose you with refractory sprue without investigating further is incompetence. Please don't accept this diagnosis. Keep searching for answers.

neesee

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It seems like there are a few exasperated people here, understandably so. Brian, who's in terrible shape and having a difficult time in recovery. Neesee, who has had problems with doctors and who has learned that a patient must be his/her own advocate and understands that it's our responsibility to seek the information we need. And everyone else here, as it seems like most posters have dealt with difficult periods of experiencing symptoms and being misdiagnosed.

From what I understand (and I'm still pretty new to all of this), there are more than just two genes that cause Celiac Disease. The fact that the US only recognizes two of them really doesn't mean much. I've also read (from multiple sources) that if the damage to the digestive tract is severe, patients may not respond to a gluten free diet. Were those patients misdiagnosed? I have no idea.

I'm curious, what other conditions cause flattened villi?

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To clarify, the only reason that I asked Brian this was because 1. I couldn't recall his particular details (mentioned in the post from 11 months ago) and 2. I wanted to respond to him with accurate information. There are a lot of board members on this site and it can be hard to remember all the details of each and every person.

I have been in contact with Brian, before this conversation, and I hope that he knows that the spirit of my question was for clarification in order to help.

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I have not seen any studies showing ANY other cause of flattened villi other than celiac. In fact, flattened villi is considered the "gold standard" of diagnosis of celiac.

I would guess that whatever genes are associated with RA are also associated with celiac disease, as so many here have had RA symptoms and/or diagnoses, and their symptoms disappeared after going gluten-free. For some people (who knows, maybe everyone), I would think that celiac is a direct cause of RA, just as it can cause the immune system to attack intestines, skin (DH), thyroid (Hoashimoto's and Graves' disease), etc.

I also believe that gluten intolerance is often simply early-stage celiac. Biopsy diagnosis means very little when it is such a hit-or-miss procedure. It can confirm celiac, but it certainly can't rule it out, so sooner or later it will no longer be considered the "gold standard" of diagnosis.

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Dr. Green's site says:

"Causes of villous atrophy apart from celiac disease

In children less than two years old, there are several causes that include cows milk allergy, soy allergy, eosinophillic gastroenteritis, and viral gastroenteritis. In adults, HIV enteropathy and tropical sprue are the most common causes of villous atrophy apart from celiac disease. Radiation may cause a similar picture as well as autoimmune enteropathy. Other food intolerances have been reported though are exceptionally rare; they include a single case report of fish and chicken intolerance [18]."

(18) The reference is very old:

Baker AL, Rosenberg IH. Refractory sprue: recovery after removal of nongluten dietary proteins. Ann Intern Med 1978; 89:505-8.

Not sure if there is anything more recent....?

Agree with FF---- the biopsy is considered the gold standard because the changes in the intestine is pretty darn specific to Celiac.

http://www.celiacdiseasecenter.columbia.ed.../C04-Biopsy.htm

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Let me just clarify, I made that post about Enterolab a year ago. I have been evaluated and diagnosed after the Enterolab diagnosis. While it is true that I don't have the "main" celiac genes, I did have flattened villi, and I definitely have celiac disease. There really is no question at all about it. More than one of my doctors believes I have refractory sprue, and I have been tested for basically everything else, with the exception of eosinophilic disorders.

-Brian

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Hi, Brian, I am not questioning your diagnosis at all here, just wondering if they ruled out Lyme Disease and mercury toxicity? Any possibility one or both of those could actually CAUSE refractory sprue in the absence of the so-called celiac genes? Or maybe act as catalyst, or prevent celiac from healing in the absence of gluten?

Sorry if you already ruled that out, it's been a while since I had time to check out the OMG thread, and I can't remember if I saw you on there or not!

Either way, I hope you find answers and feel better soon!

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    Oh yes, it could, although to be honest I never got myself so wet with sweat that it would have been a serious situation.  However, I can remember one time when I got caught in a cloudburst while going to my car in a large parking lot, though, and got soaked to the skin, and of course had to wear those soaking-wet clothes while I drove the 45 minutes it took me to get home --- I will NEVER forgot the misery and agony of that drive!  I could just barely keep the car under control, in fact.
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Water?! That's… unreasonably inconvenient. Did it happen with sweat?
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