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      Frequently Asked Questions About Celiac Disease   04/07/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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BlessedMommy

I Like Our Doctor For Other Reasons And Don't Want To Switch....

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but our doctor really doesn't know a lot in this area and I really don't think that he will be very helpful. After I had my gluten induced TIA, he told me to stay away from gluten, but that "a little bit probably won't bother you."  :wacko:

 

I would like to work towards pursuing a DX for my 7 year old daughter because there's not a chance in the world that she will stick to a gluten free diet without a formal DX. She will pretty much go find gluten and eat it and really doesn't care about the rash that develops as a result. I bought gluten free granola bars for us and regular granola bars for my husband and youngest daughter as a treat. I figured that it was pre-packaged, so if they kept it and ate it outside or took it on a trip it shouldn't contaminate my gluten-free house.

 

So after eating 3 of the gluten free bars, she went outside and snuck into the van and found her dad's bars and ate one as well. Her face is already rashy and raw from the last couple of cheats that she's done. She consistently gets the same symptom from being glutened and I know that it's not placebo effect, because there were some times when I didn't expect it and then it flared up and I realized that she had either snuck some behind my back or gotten some accidently at a restaurant. (i.e. when Taco Bell subbed out a wheat tostada for the corn)

 

Is it possible to go to some sort of specialist without a referral from your primary care doctor? Or should we find a lab that can order us a celiac panel first without having to try to convince our doctor first?

 

If we do a gluten challenge, how can I make it safe for her? In my gluten challenge, I overdid it and wound up with severe headaches, but then again I went cold turkey to eating the same type of meals as my husband. Is it fairly safe to feed a kid say, 1 PBJ sandwich on whole wheat bread per day when gluten challenging?

 

 

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My insurance allows us to go to whatever type of doctor we need. Not sure what yours allows.

Is this doc teachable? My main doc lets me show her stuff from places like the Univ of

Chicago and then she will go with it.

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Hi Ruth,

I can relate to your situation, with a almost 6 yr old daughter showing signs and being non-Dx myself, unfortunately.

I was afraid of the brush off from my daughter's doc, but to my delight, I succeeded in getting a requisition (she does not see my doc).

n your shoes, I would go to doc and push for requisition.

Here is what we did:

For my daughter, once my suspicions reached a new level, I broached the subject with her dentist. The dentist said her enamel issues could be systemic, but they were not diagnositic. Yes, proceed to discussing with doc.  So, I made a list of points, including "dentist said" and asked for a requisition. I put the whole story on the table, and doc agreed to issue requ.  I also wanted B12 check, but she did not give that saying, it is rare for a problem (I have had this and my daughter gets similar signs). 

Gluten challenge: My daughter's doc, to her credit, looked up some info and came back and said, now recommending 8 to 12 week gluten challenge (as my daughter had been gluten light for 10 months). Two bread slices, we were told.

Meanwhile, my husband and I had decided to pursue lab testing for her. Partly, because we wanted to be sure we wouldn't get a "false negative" blood test and have the door permanently shut.

We went to EnteroLab and now have results for her which all are v. positive, including the auto-immune tTG test.

I find the stool tests have given me the info to know that we're likely ready for serological testing, without risking false negative.

It is a bit expensive but that was where we landed given my non-Dx and the challenges of Dx generally. 

best wishes and good luck.

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It also occurred to me...there is a very celiac knowledgeable doctor not very far away from this. This doctor will sometimes diagnose celiac without the normal tests, in certain situations of extreme symptoms, etc. (probably genetic testing too, I'm guessing)

 

I wonder if I should go to this doctor and see if I can get a celiac diagnosis from her and then present to my doctor that hey, celiac is genetic, I need my kids tested. Or I could get gene tested as well to see if I'm carrying the gene.

 

This is so complicated! Knowing what I know now, I would NEVER have taken my kids off gluten without proper testing, but my primary care doctor advised dietary trials when they were having skin issues. I unfortunately asked for allergy testing, not celiac testing, because I didn't know any better. Eeek!

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Do you think your doc will deny your daughter the test if you go now?

If so, your suggestion is a good one. Or, if you want to fork out the money, you could try the fecal tests and gene tests.

I think the gene testing is worth it, particularly if you struggle with the frustration of lack of diagnosis, as I do. On the other hand, as it is not diagnostic, it has its limitations and in the end, does not really help if the doc does not want to listen.

This is what happened for us: I went through similar thought processes, so I actually pursued gene testing. The results were that my daughter and I both have DQ 3, 3 (subtypes 7,9), as reported via mouth swab test. These are not on the conventional lists of "main celiac" genes, but again this phrase is misleading. It turns out that "main" simply means "most common",  and research suggests DQ 9 (DQ 3, sub 9) may indeed be a celiac predisposing gene, as well as DQ7.

However, I now realize that I can't really present this to the docs and say "see"? because they might not know about the research and they will fall back on the most frequently cited headline, which is DQ 2 or DQ8. So, you could try that route, but in the end, it depends on the open-mindedness of the doc to consider the case.

I find it silly that it is so hard to screen a child with symptoms who has a parent with a history.

Be sure your daughter is getting that gluten and then insist on a requisition. I am keeping my fingers crossed for you.

 We've found it hard here and I am really eager to get this over with as a 2 to 3 month trial  drags.

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 if you want to fork out the money, you could try the fecal tests and gene tests.

 

Neither of those tests are going to be use for a dx so I wouldn't waste my time or money on them.

 

As for a referral, that is going to depend 100% on your insurance. Some you need to get the OK from your primary Dr. Some you can go to whoever you want in whatever specialty you need.

 

I'm confused, is she or is she not gluten free? I saw she was sneaking things but they were gluten-free then you said you won't have taken them off gluten.  

 

If you have a DX, I would take that to the Dr. and get the kid the genetic test. Based on those two plus resolution of symptoms, some Dr's will give a DX but it'll depend on the Dr.

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They are not gluten free in the sense of being 100% free from contamination or sneaking things on the side and also they eat things that should be gluten-free but  that haven't been verified as gluten-free. So they are probably closer to "gluten light."

 

But even being 95% gluten free isn't going to work for blood testing, since you have to eat gluten consistently in order to avoid false negatives. I'm just frustrated and wish that I would have never even attempted to take them off gluten. It's so easy to be strict about what I put in my own mouth, but kids really need a real DX.

 

I don't have an actual DX, but I treat my condition like celiac. (see sig below for history)

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The results were that my daughter and I both have DQ 3, 3 (subtypes 7,9), as reported via mouth swab test. These are not on the conventional lists of "main celiac" genes, but again this phrase is misleading. It turns out that "main" simply means "most common",  and research suggests DQ 9 (DQ 3, sub 9) may indeed be a celiac predisposing gene, as well as DQ7.

However, I now realize that I can't really present this to the docs and say "see"? because they might not know about the research and they will fall back on the most frequently cited headline, which is DQ 2 or DQ8. 

 

But, it's not a headline, it's not misleading and it's not "just most common"  it's what the research says. .

 

This is what the leading celiac researchers say: HLA DQ2 and HLA DQ8 are the genes associated with celiac disease.

 

Read any valid source and this is what you will find. 

 

http://www.uchospitals.edu/pdf/uch_007936.pdf

 

My guess is you did the cheek swab test from Enterolab, based on your description. Enterolabs uses the phrase "gluten sensitivity genes" when reporting the 'subtypes" like that, but Enterolabs has never published their research or been peer-reviewed. There is no evidence that those other genes are associated with celiac.

 

One study --was published as far as I know showing the possibility of the DQ9 variant.

 

Except in extremely rare cases, celiacs have the DQ2 or DQ8 gene.. 

 

"Each case of celiac disease has been found to show these so-called “haplotypes”; therefore, a negative gene test indicates that celiac disease cannot develop in that individual.
 There are two main reasons for using the genetic test when evaluating an individual for celiac disease. The first case is to “rule out” celiac disease, which is a medical term that indicates an individual does not possess a necessary risk factor for the development of celiac disease, 
genetic predisposition. Without this factor, it is impossible that the individual with a negative gene test will develop celiac disease in the future"
 
 
My GI doctor said he biopsied a man with villous atrophy, but neither gene. As is turns out, several other medical conditions may cause villous atrophy, so he eventually ruled out celiac which was wise as the man was avoiding gluten for no good reason. His condition was treated and he is fine. 
 
Can you have celiac disease without having the genes for it?

This topic raises much debate. The current thought shared by the many physicians and scientists is that 1-2% of celiacs may not possess the celiac-specific genes HLA-DQ2 and/or DQ8. Our Dr. Guandalini and Dr. Bob Anderson, chief scientific officer of ImmusanT, believe the genes are necessary to initiate the immunologic response of celiac disease, hence you cannot have celiac disease without them.

Dr. Anderson retrospectively reviewed hundreds of celiac patients, 2% who did not have the genes, and with each he was able to conclude that the celiac diagnosis was actually wrong: some had Crohn’s disease, some Giardia infection, and some had immune deficiencies.

 

source: http://www.cureceliacdisease.org/archives/faq/can-you-have-celiac-disease-without-having-the-genes-for-it

 
Have we heard of someone with a different gene having celiac?
 
yes, a member on here has reported she has celiac and does not have either gene.
According to Dr. Fasano's research and so many other celiac specialists, she is extremely rare.  
 
also, 

 

"If I have a gene for celiac disease, does that I mean I have it?

Genetics don’t diagnose celiac disease. They do, however, clarify whether an individual is “at-risk” for it. If this is the case, you should closely monitor your symptoms and submit to blood tests every 2-3 years or immediately upon the sight of symptoms. When the genetic predisposition for celiac disease was detected (on Chromosome 6) researchers noted that the genes were a necessary but not sufficient condition for the disease to develop. In fact, up to 1/3 of the U.S. population has the genes for celiac disease. Meaning, those who have the DQ2 or DQ8 gene can develop celiac disease at any time, but only about 5% of those people actually will."

--same source as above--U of Chicago, a leading celiac research center.

 
And I agree with Stephanie, fecal tests and gene tests are not diagnostic tools for celiac. 
 
Hope this helps! best wishes.

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I agree that gene tests are not diagnostic, but it sounds like they might be a "rule out" tool?

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Looks like according to University of Chicago, celiac can't develop without the D2 or D8 genes. So it does sound like they could be used as a rule out tool.

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Looks like according to University of Chicago, celiac can't develop without the D2 or D8 genes. So it does sound like they could be used as a rule out tool.

 

 

in many cases, that's exactly  why they are used. 

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So, IrishHeart, did you go the blood test and endoscopy route or did you pair your symptoms with your double D2 genes and then try the gluten-free diet? (Just wondering, based on your sig?)

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I just explained my odyssey towards obtaining a DX on another thread. I'll see if i can find it. I post often, so it may take me a second or two. lol

 

I figured out it was celiac making me so ill for 3+ years and brought it back to my PCP doctor & former GI doctor, yes but I did not " diagnose myself", if that's what you're asking.

 

And the gene test was done well after the fact by blood test that my new, celiac-savvy GI doc ordered. . 

 

I was not diagnosed in the "conventional way" at all. Some people have blood work, the biopsy and they know right away. ( If I had been, it would have spared me and my family a whole lot of grief. )

 

This is why I try so hard to point people in the right direction and get them tested right away, if possible. 

 

http://www.celiac.com/gluten-free/topic/107347-severity-of-symptoms-linked-to-genetic-profile/

Edited by IrishHeart

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Interesting discussion!

A question for IrishHeart to round out the discussion on the utility of gene tests....and the slight chance of having celiac with non DQ2 or DQ8 (RE the "rare" person who could have celiac without DQ 2 or DQ 8....)

What I had come across was some primary research published in Oxford Journals, April  2000 International Immunology  ("The structure of Celiac Disease...epitopes"). and some primary research in 2012 (from Norway, I'd have to look it up again and I still haven't figured out the cut and paste function!), both suggesting DQ9 could potentially be celiac pre-disposing. I realize these were not definitive, but still worth keeping an open mind about IMO.

So I'm trying to understand. My take had been: if you have celiac, you most likely have Beta DQ2 or DQ8 or both, but there is a chance (albeit small, if 1% is small - hey, that's about the same rate as celiac occurs in the general population!), you could have other genes such as DQ 9 and maybe even DQ7, or that perhaps your Alpha typing should have been reported (?). It seems plausible to me that  there is still some more to the genetic story and that possibly DQ9 could play a role, given how similar the structure  seems to be to DQ8.

I'm not pretending this to be my area. But, I raise it because as soon as it is said "impossible without DQ 2 or DQ8, the rest of the conversation gets dropped.

 

I also wonder: how reliable are the swab tests? Are these highly observer dependent?

Nothing is ever a perfect answer, but personally, I'm not ruling it out based on a DQ7, DQ9 typing in either my daughter or myself.

 

For our part, my daughter will go for blood tests soon once she completes the gluten challenge, and a scope if required. It will be interesting to see what transpires even tho' she is said to have DQ7 and DQ9. 

 

Curious what course Ruth pursues.

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I'm probably going to have a conversation with my doctor about reintroducing gluten or doing gene tests. *sighs* Really not looking forward to this one....my doctor is a real minimalist, which is good in some senses, but I strongly doubt that he will want to order celiac testing, especially with kids who are basically healthy, other than eczema. (my daughter also has vitiligo and had some tooth issues on her front teeth)

 

I think that I will possibly mention to him the fact that when people have gluten issues, celiac needs to be *at least* ruled out.

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Interesting discussion!

A question for IrishHeart to round out the discussion on the utility of gene tests....and the slight chance of having celiac with non DQ2 or DQ8 (RE the "rare" person who could have celiac without DQ 2 or DQ 8....)

What I had come across was some primary research published in Oxford Journals, April 2000 International Immunology ("The structure of Celiac Disease...epitopes"). and some primary research in 2012 (from Norway, I'd have to look it up again and I still haven't figured out the cut and paste function!), both suggesting DQ9 could potentially be celiac pre-disposing. I realize these were not definitive, but still worth keeping an open mind about IMO.

So I'm trying to understand. My take had been: if you have celiac, you most likely have Beta DQ2 or DQ8 or both, but there is a chance (albeit small, if 1% is small - hey, that's about the same rate as celiac occurs in the general population!), you could have other genes such as DQ 9 and maybe even DQ7, or that perhaps your Alpha typing should have been reported (?). It seems plausible to me that there is still some more to the genetic story and that possibly DQ9 could play a role, given how similar the structure seems to be to DQ8.

I'm not pretending this to be my area. But, I raise it because as soon as it is said "impossible without DQ 2 or DQ8, the rest of the conversation gets dropped.

I also wonder: how reliable are the swab tests? Are these highly observer dependent?

Nothing is ever a perfect answer, but personally, I'm not ruling it out based on a DQ7, DQ9 typing in either my daughter or myself.

For our part, my daughter will go for blood tests soon once she completes the gluten challenge, and a scope if required. It will be interesting to see what transpires even tho' she is said to have DQ7 and DQ9.

Curious what course Ruth pursues.

Maybe that is an argument you could take up with the Univ of Chicago, Dr. Fasano and some of the other researchers? IH didn't make the discovery. She & I just report the current info from reputable Celiac centers and researchers. :)

As for the swab tests - are you asking if you would miss some of the DNA by not swabbing properly? I don't see how that is possible? My gene test was a blood test.

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tri-gal

It was once suspected that I had ankylosing spondyloarthropy, based on my symptoms. (this was before my celiac diagnosis when I was in agonizing pain from the unDXed celiac disease). The rheumatologist, to his credit, ran the HLA-B27 test and told me that if I did not carry that gene, it was unlikely I had SA. It was negative. And I thanked the heavens because that is not an autoimmune disease that is treatable. It is a painful condition. The OA I have is painful enough, but I was grateful to exclude the SA.

 

If the genetic test for celiac--which is considered by the leading celiac researchers to be about as foolproof as it gets--is negative, I am not sure

that I would put myself (or my child)  through a gluten challenge for months--or worse, an invasive procedure based on that extremely slim possibility. This IMHO, okay?

 

I mean how sick is this child eating all that gluten? Maybe she has NCGS--which is treatable with a gluten-free diet. It seems to me as if you are actually hoping it is celiac and looking for a "loophole" in the genetic testing. 

I am perplexed by this because I wouldn't wish this disease on anyone and if i were told I did not have a life-treatening AI disease, I'd be thrilled.  :)

 

This is your life and you can do what you think is best, of course!

But I will reiterate once more that Enterolab testing for IgG4 antibodies to foods --is NOT a diagnostic tool and I will be interested to hear if a pediatric gastroenterologist will be willing to do that procedure based on those tests if the celiac panel is negative.

 

If the celiac panel comes back positive, I hope this doctor follows through and rules out OTHER reasons why the TtG may be elevated. Several other AI conditions may cause this, including liver and thyroid disease.

 
In the absence of DQ2 and DQ8, he darn well better do more checking or he may be overlooking other AI conditions that require treatment. 

 

And if the biopsy is positive for villous blunting, he had better make sure it is not because of 10+ other autoimmune conditions reasons why that occurs too. 

 

Causes of Villous Atrophy Other Than Celiac Disease

  • Giardiasis
  • Collagenous sprue
  • Common-variable immunodeficiency
  • Autoimmune enteropathy
  • Radiation enteritis
  • Whipple’s disease
  • Tuberculosis
  • Tropical sprue
  • Eosinophilic gastroenteritis
  • Human immunodeficiency virus enteropathy
  • Intestinal lymphoma
  • Zollinger–Ellison syndrome
  • Crohn’s disease
  • Intolerance of foods other than gluten (e.g., milk, soy, chicken, tuna)

So a combo of the "positive blood test" and "a positive biopsy" still may not mean celiac.

 

The genetic test would be the tie breaker, so to speak.

 

If he decides it truly is celiac,  then your daughter's case should be referred to Dr. Fasano or Dr. Murray or Dr. Guandalini, because it is truly rare. 

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My decision at this point is that we're going to order genetic testing. If my daughter doesn't have the genes for celiac, we're not going to bother with the whole discussion with the doctor. If the leading celiac researchers say that it's not possible to have or develop celiac without the D2 or D8 genes, then I'm going to consider that a "rule out" tool. 

 

If she does have one or both of the genes, then we'll pursue further testing. If she ends up having celiac, we'll probably pursue testing for my younger child as well. 

 

Which gene testing is inexpensive but still reliable?

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My decision at this point is that we're going to order genetic testing. If my daughter doesn't have the genes for celiac, we're not going to bother with the whole discussion with the doctor. If the leading celiac researchers say that it's not possible to have or develop celiac without the D2 or D8 genes, then I'm going to consider that a "rule out" tool. 

 

If she does have one or both of the genes, then we'll pursue further testing. If she ends up having celiac, we'll probably pursue testing for my younger child as well. 

 

Which gene testing is inexpensive but still reliable?

 

 

Ruth, 

Why didn't your doctor order the genetic test for you in the first place? just curious because I think he should have, IMHO

 

There are blood tests that your doctor can order. I paid out of pocket for the saliva test, but later, my GI doc insisted we go with the blood work genetic test. My insurance covered that test so i am not sure what it cost, but I know the co-pay was $80. He thought it was more accurate, It rendered the same result.. 

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My decision at this point is that we're going to order genetic testing. If my daughter doesn't have the genes for celiac, we're not going to bother with the whole discussion with the doctor. If the leading celiac researchers say that it's not possible to have or develop celiac without the D2 or D8 genes, then I'm going to consider that a "rule out" tool. 

 

If she does have one or both of the genes, then we'll pursue further testing. If she ends up having celiac, we'll probably pursue testing for my younger child as well. 

 

Which gene testing is inexpensive but still reliable?

 

 

I used Quest diagnostics for the blood test.  You can call them and ask how much.  I would pick a reputable lab like Quest.  I think it was $260? Quest filed it with  my insurance and they actually paid for all but $25!

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Ruth, 

Why didn't your doctor order the genetic test for you in the first place? just curious because I think he should have, IMHO

 

There are blood tests that your doctor can order. I paid out of pocket for the saliva test, but later, my GI doc insisted we go with the blood work genetic test. My insurance covered that test so i am not sure what it cost, but I know the co-pay was $80. He thought it was more accurate, It rendered the same result.. 

 

 After my hospitalization, he just said, "Stay away from gluten, but small amounts probably won't bother you." :wacko:  (as if, a person who has just had a TIA and been unable to speak correctly really wants to see what threshold of gluten could cause that again  :ph34r: )I'm not sure how much he really knows about things, although when I first brought in my photos of my skin rash, he said that wheat commonly causes that symptom. 

I'm guessing that his knowledge on celiac and NCGI is a bit below where it could be, although I really like him for other reasons.

I really wish that I had more of a DX and I think that genetic testing isn't a bad idea.

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Can you order lab work from Quest without your doctor's referral? (for self pay patients, not for insurance covered stuff)

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My daughter is on the gluten challenge because her symptoms are vague and to the outside world she seems "fine". However, she has enamel issues and intestinal issues, and other vague symptoms that cause me to want to seek a diagnosis now rather than wait. (It all sounds  a little like BlessedMommy's situation, I think).  For myself, I had terrible onset of symptoms post-partum which resolved gluten free (I also had missing enamel from childhood, late menses and other signs from then). I went gluten free to help my nursing toddler who showed very obvious problems with gluten. thus, I am now on high alert for my kids.

I don't want my daughter to have celiac disease, but I do want the correct diagnosis, if I'm going to be worrying about every crumb in her diet and setting her up gluten free for life. 

As for my query on swab gene tests, I was  wondering if swab tests are as accurate as blood tests? in terms of being able to see the genetic structure as readily (not a question of missing a gene, per se).  I don't know how they are done, but presumably, the cells are examined under a microscope.

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Can you order lab work from Quest without your doctor's referral? (for self pay patients, not for insurance covered stuff)

 

 

You might call them and ask.  I think in some places you can.  Not up to date on these laws any longer.  When I had mine done, I made sure they sent a copy of the results to me and to the doctor.  If you need a doc to order them, and you don't want to ask this doc, your OB/GYN could order it, too - if you have an agreeable one.  I just told my doc I wanted to do one & knew I might have to pay for it.  She wrote an order.

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I don't want my daughter to have celiac disease, but I do want the correct diagnosis, if I'm going to be worrying about every crumb in her diet and setting her up gluten free for life. 

This is true for me as well, except for in my case it's virtually impossible to set her up totally gluten-free without a celiac DX, because of her and others' lack of compliance. 

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    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

    Jefferson Adams
    Celiac.com 04/20/2018 - A digital media company and a label data company are teaming up to help major manufacturers target, reach and convert their desired shoppers based on dietary needs, such as gluten-free diet. The deal could bring synergy in emerging markets such as the gluten-free and allergen-free markets, which represent major growth sectors in the global food industry. 
    Under the deal, personalized digital media company Catalina will be joining forces with Label Insight. Catalina uses consumer purchases data to target shoppers on a personal base, while Label Insight works with major companies like Kellogg, Betty Crocker, and Pepsi to provide insight on food label data to government, retailers, manufacturers and app developers.
    "Brands with very specific product benefits, gluten-free for example, require precise targeting to efficiently reach and convert their desired shoppers,” says Todd Morris, President of Catalina's Go-to-Market organization, adding that “Catalina offers the only purchase-based targeting solution with this capability.” 
    Label Insight’s clients include food and beverage giants such as Unilever, Ben & Jerry's, Lipton and Hellman’s. Label Insight technology has helped the Food and Drug Administration (FDA) build the sector’s very first scientifically accurate database of food ingredients, health attributes and claims.
    Morris says the joint partnership will allow Catalina to “enhance our dataset and further increase our ability to target shoppers who are currently buying - or have shown intent to buy - in these emerging categories,” including gluten-free, allergen-free, and other free-from foods.
    The deal will likely make for easier, more precise targeting of goods to consumers, and thus provide benefits for manufacturers and retailers looking to better serve their retail food customers, especially in specialty areas like gluten-free and allergen-free foods.
    Source:
    fdfworld.com

    Jefferson Adams
    Celiac.com 04/19/2018 - Previous genome and linkage studies indicate the existence of a new disease triggering mechanism that involves amino acid metabolism and nutrient sensing signaling pathways. In an effort to determine if amino acids might play a role in the development of celiac disease, a team of researchers recently set out to investigate if plasma amino acid levels differed among children with celiac disease compared with a control group.
     
    The research team included Åsa Torinsson Naluai, Ladan Saadat Vafa, Audur H. Gudjonsdottir, Henrik Arnell, Lars Browaldh, and Daniel Agardh. They are variously affiliated with the Institute of Biomedicine, Department of Microbiology & Immunology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; the Institute of Clinical Sciences, Sahlgrenska Academy at the University of Gothenburg, Gothenburg, Sweden; the Department of Pediatric Gastroenterology, Hepatology and Nutrition, Karolinska University Hospital and Division of Pediatrics, CLINTEC, Karolinska Institute, Stockholm, Sweden; the Department of Clinical Science and Education, Karolinska Institute, Sodersjukhuset, Stockholm, Sweden; the Department of Mathematical Sciences, Chalmers University of Technology, Gothenburg, Sweden; the Diabetes & Celiac Disease Unit, Department of Clinical Sciences, Lund University, Malmö, Sweden; and with the Nathan S Kline Institute in the U.S.A.
    First, the team used liquid chromatography-tandem mass spectrometry (LC/MS) to analyze amino acid levels in fasting plasma samples from 141 children with celiac disease and 129 non-celiac disease controls. They then crafted a general linear model using age and experimental effects as covariates to compare amino acid levels between children with celiac disease and non-celiac control subjects.
    Compared with the control group, seven out of twenty-three children with celiac disease showed elevated levels of the the following amino acids: tryptophan; taurine; glutamic acid; proline; ornithine; alanine; and methionine.
    The significance of the individual amino acids do not survive multiple correction, however, multivariate analyses of the amino acid profile showed significantly altered amino acid levels in children with celiac disease overall and after correction for age, sex and experimental effects.
    This study shows that amino acids can influence inflammation and may play a role in the development of celiac disease.
    Source:
    PLoS One. 2018; 13(3): e0193764. doi: & 10.1371/journal.pone.0193764

    Jefferson Adams
    Celiac.com 04/18/2018 - To the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service animals.
    If you’ve flown anywhere lately, you may have seen them. People flying with their designated “emotional support” animals. We’re not talking genuine service animals, like seeing eye dogs, or hearing ear dogs, or even the Belgian Malinois that alerts its owner when there is gluten in food that may trigger her celiac disease.
    Now, to be honest, some of those animals in question do perform a genuine service for those who need emotional support dogs, like veterans with PTSD.
    However, many of these animals are not service animals at all. Many of these animals perform no actual service to their owners, and are nothing more than thinly disguised pets. Many lack proper training, and some have caused serious problems for the airlines and for other passengers.
    Now the major airlines are taking note and introducing stringent requirements for service animals.
    Delta was the first to strike. As reported by the New York Times on January 19: “Effective March 1, Delta, the second largest US airline by passenger traffic, said it will require passengers seeking to fly with pets to present additional documents outlining the passenger’s need for the animal and proof of its training and vaccinations, 48 hours prior to the flight.… This comes in response to what the carrier said was a 150 percent increase in service and support animals — pets, often dogs, that accompany people with disabilities — carried onboard since 2015.… Delta said that it flies some 700 service animals a day. Among them, customers have attempted to fly with comfort turkeys, gliding possums, snakes, spiders, and other unusual pets.”
    Fresh from an unsavory incident with an “emotional support” peacock incident, United Airlines has followed Delta’s lead and set stricter rules for emotional support animals. United’s rules also took effect March 1, 2018.
    So, to the relief of many bewildered passengers and crew, no more comfort turkeys, geese, possums or other questionable pets will be flying on Delta or United without meeting the airlines' strict new requirements for service and emotional support animals.
    Source:
    cnbc.com

    admin
    WHAT IS CELIAC DISEASE?
    Celiac disease is an autoimmune condition that affects around 1% of the population. People with celiac disease suffer an autoimmune reaction when they consume wheat, rye or barley. The immune reaction is triggered by certain proteins in the wheat, rye, or barley, and, left untreated, causes damage to the small, finger-like structures, called villi, that line the gut. The damage occurs as shortening and villous flattening in the lamina propria and crypt regions of the intestines. The damage to these villi then leads to numerous other issues that commonly plague people with untreated celiac disease, including poor nutritional uptake, fatigue, and myriad other problems.
    Celiac disease mostly affects people of Northern European descent, but recent studies show that it also affects large numbers of people in Italy, China, Iran, India, and numerous other places thought to have few or no cases.
    Celiac disease is most often uncovered because people experience symptoms that lead them to get tests for antibodies to gluten. If these tests are positive, then the people usually get biopsy confirmation of their celiac disease. Once they adopt a gluten-free diet, they usually see gut healing, and major improvements in their symptoms. 
    CLASSIC CELIAC DISEASE SYMPTOMS
    Symptoms of celiac disease can range from the classic features, such as diarrhea, upset stomach, bloating, gas, weight loss, and malnutrition, among others.
    LESS OBVIOUS SYMPTOMS
    Celiac disease can often less obvious symptoms, such fatigue, vitamin and nutrient deficiencies, anemia, to name a few. Often, these symptoms are regarded as less obvious because they are not gastrointestinal in nature. You got that right, it is not uncommon for people with celiac disease to have few or no gastrointestinal symptoms. That makes spotting and connecting these seemingly unrelated and unclear celiac symptoms so important.
    NO SYMPTOMS
    Currently, most people diagnosed with celiac disease do not show symptoms, but are diagnosed on the basis of referral for elevated risk factors. 

    CELIAC DISEASE VS. GLUTEN INTOLERANCE
    Gluten intolerance is a generic term for people who have some sort of sensitivity to gluten. These people may or may not have celiac disease. Researchers generally agree that there is a condition called non-celiac gluten sensitivity. That term has largely replaced the term gluten-intolerance. What’s the difference between celiac disease and non-celiac gluten-sensitivity? 
    CELIAC DISEASE VS. NON-CELIAC GLUTEN SENSITIVITY (NCGS)
    Gluten triggers symptoms and immune reactions in people with celiac disease. Gluten can also trigger symptoms in some people with NCGS, but the similarities largely end there.

    There are four main differences between celiac disease and non-celiac gluten sensitivity:
    No Hereditary Link in NCGS
    Researchers know for certain that genetic heredity plays a major role in celiac disease. If a first-degree relative has celiac disease, then you have a statistically higher risk of carrying genetic markers DQ2 and/or DQ8, and of developing celiac disease yourself. NCGS is not known to be hereditary. Some research has shown certain genetic associations, such as some NCGS patients, but there is no proof that NCGS is hereditary. No Connection with Celiac-related Disorders
    Unlike celiac disease, NCGS is so far not associated with malabsorption, nutritional deficiencies, or a higher risk of autoimmune disorders or intestinal malignancies. No Immunological or Serological Markers
    People with celiac disease nearly always test positive for antibodies to gluten proteins. Researchers have, as yet, identified no such antobodies or serologic markers for NCGS. That means that, unlike with celiac disease, there are no telltale screening tests that can point to NCGS. Absence of Celiac Disease or Wheat Allergy
    Doctors diagnose NCGS only by excluding both celiac disease, an IgE-mediated allergy to wheat, and by the noting ongoing adverse symptoms associated with gluten consumption. WHAT ABOUT IRRITABLE BOWEL SYNDROME (IBS) AND IRRITABLE BOWEL DISEASE (IBD)?
    IBS and IBD are usually diagnosed in part by ruling out celiac disease. Many patients with irritable bowel syndrome are sensitive to gluten. Many experience celiac disease-like symptoms in reaction to wheat. However, patients with IBS generally show no gut damage, and do not test positive for antibodies to gliadin and other proteins as do people with celiac disease. Some IBS patients also suffer from NCGS.

    To add more confusion, many cases of IBS are, in fact, celiac disease in disguise.

    That said, people with IBS generally react to more than just wheat. People with NCGS generally react to wheat and not to other things, but that’s not always the case. Doctors generally try to rule out celiac disease before making a diagnosis of IBS or NCGS. 
    Crohn’s Disease and celiac disease share many common symptoms, though causes are different.  In Crohn’s disease, the immune system can cause disruption anywhere along the gastrointestinal tract, and a diagnosis of Crohn’s disease typically requires more diagnostic testing than does a celiac diagnosis.  
    Crohn’s treatment consists of changes to diet and possible surgery.  Up to 10% of Crohn's patients can have both of conditions, which suggests a genetic connection, and researchers continue to examine that connection.
    Is There a Connection Between Celiac Disease, Non-Celiac Gluten Sensitivity and Irritable Bowel Syndrome? Large Number of Irritable Bowel Syndrome Patients Sensitive To Gluten Some IBD Patients also Suffer from Non-Celiac Gluten Sensitivity Many Cases of IBS and Fibromyalgia Actually Celiac Disease in Disguise CELIAC DISEASE DIAGNOSIS
    Diagnosis of celiac disease can be difficult. 

    Perhaps because celiac disease presents clinically in such a variety of ways, proper diagnosis often takes years. A positive serological test for antibodies against tissue transglutaminase is considered a very strong diagnostic indicator, and a duodenal biopsy revealing villous atrophy is still considered by many to be the diagnostic gold standard. 
    But this idea is being questioned; some think the biopsy is unnecessary in the face of clear serological tests and obvious symptoms. Also, researchers are developing accurate and reliable ways to test for celiac disease even when patients are already avoiding wheat. In the past, patients needed to be consuming wheat to get an accurate test result. 
    Celiac disease can have numerous vague, or confusing symptoms that can make diagnosis difficult.  Celiac disease is commonly misdiagnosed by doctors. Read a Personal Story About Celiac Disease Diagnosis from the Founder of Celiac.com Currently, testing and biopsy still form the cornerstone of celiac diagnosis.
    TESTING
    There are several serologic (blood) tests available that screen for celiac disease antibodies, but the most commonly used is called a tTG-IgA test. If blood test results suggest celiac disease, your physician will recommend a biopsy of your small intestine to confirm the diagnosis.
    Testing is fairly simple and involves screening the patients blood for antigliadin (AGA) and endomysium antibodies (EmA), and/or doing a biopsy on the areas of the intestines mentioned above, which is still the standard for a formal diagnosis. Also, it is now possible to test people for celiac disease without making them concume wheat products.

    BIOPSY
    Until recently, biopsy confirmation of a positive gluten antibody test was the gold standard for celiac diagnosis. It still is, but things are changing fairly quickly. Children can now be accurately diagnosed for celiac disease without biopsy. Diagnosis based on level of TGA-IgA 10-fold or more the ULN, a positive result from the EMA tests in a second blood sample, and the presence of at least 1 symptom could avoid risks and costs of endoscopy for more than half the children with celiac disease worldwide.

    WHY A GLUTEN-FREE DIET?
    Currently the only effective, medically approved treatment for celiac disease is a strict gluten-free diet. Following a gluten-free diet relieves symptoms, promotes gut healing, and prevents nearly all celiac-related complications. 
    A gluten-free diet means avoiding all products that contain wheat, rye and barley, or any of their derivatives. This is a difficult task as there are many hidden sources of gluten found in the ingredients of many processed foods. Still, with effort, most people with celiac disease manage to make the transition. The vast majority of celiac disease patients who follow a gluten-free diet see symptom relief and experience gut healing within two years.
    For these reasons, a gluten-free diet remains the only effective, medically proven treatment for celiac disease.
    WHAT ABOUT ENZYMES, VACCINES, ETC.?
    There is currently no enzyme or vaccine that can replace a gluten-free diet for people with celiac disease.
    There are enzyme supplements currently available, such as AN-PEP, Latiglutetenase, GluteGuard, and KumaMax, which may help to mitigate accidental gluten ingestion by celiacs. KumaMax, has been shown to survive the stomach, and to break down gluten in the small intestine. Latiglutenase, formerly known as ALV003, is an enzyme therapy designed to be taken with meals. GluteGuard has been shown to significantly protect celiac patients from the serious symptoms they would normally experience after gluten ingestion. There are other enzymes, including those based on papaya enzymes.

    Additionally, there are many celiac disease drugs, enzymes, and therapies in various stages of development by pharmaceutical companies, including at least one vaccine that has received financial backing. At some point in the not too distant future there will likely be new treatments available for those who seek an alternative to a lifelong gluten-free diet. 

    For now though, there are no products on the market that can take the place of a gluten-free diet. Any enzyme or other treatment for celiac disease is intended to be used in conjunction with a gluten-free diet, not as a replacement.

    ASSOCIATED DISEASES
    The most common disorders associated with celiac disease are thyroid disease and Type 1 Diabetes, however, celiac disease is associated with many other conditions, including but not limited to the following autoimmune conditions:
    Type 1 Diabetes Mellitus: 2.4-16.4% Multiple Sclerosis (MS): 11% Hashimoto’s thyroiditis: 4-6% Autoimmune hepatitis: 6-15% Addison disease: 6% Arthritis: 1.5-7.5% Sjögren’s syndrome: 2-15% Idiopathic dilated cardiomyopathy: 5.7% IgA Nephropathy (Berger’s Disease): 3.6% Other celiac co-morditities include:
    Crohn’s Disease; Inflammatory Bowel Disease Chronic Pancreatitis Down Syndrome Irritable Bowel Syndrome (IBS) Lupus Multiple Sclerosis Primary Biliary Cirrhosis Primary Sclerosing Cholangitis Psoriasis Rheumatoid Arthritis Scleroderma Turner Syndrome Ulcerative Colitis; Inflammatory Bowel Disease Williams Syndrome Cancers:
    Non-Hodgkin lymphoma (intestinal and extra-intestinal, T- and B-cell types) Small intestinal adenocarcinoma Esophageal carcinoma Papillary thyroid cancer Melanoma CELIAC DISEASE REFERENCES:
    Celiac Disease Center, Columbia University
    Gluten Intolerance Group
    National Institutes of Health
    U.S. National Library of Medicine
    Mayo Clinic
    University of Chicago Celiac Disease Center

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    • I just ate a bite or two of bread this morning. is that good enough for my test which is in 5 days? should I eat more gluten?  my understanding (from what I have been reading) is that the blood test is pretty accurate if it comes positive tho.  it's less accurate if it is negative.  is the endoscopy for biopsy or checking for damages or both? will it take a long time for Villi to heal back? 
    • Read the newbie 101 make sure your doing everything right, removing diary and oats is normally suggested for the first few months. Also make sure you threw out contaminated scratched pots, crumbed condiment jars, cutting boards etc.
      https://www.celiac.com/forums/topic/91878-newbie-info-101/

      To help with the fog try this combo, Liquid Health Stress & Energy, and Liquid Health Neurological Support 1 tbsp each 3 times a day. Also to help with fatigue and brain issues you need to take magnesium which is a common issue with this disease, here depending on your bowl habits depends on what you need. If you have constipation then Natural Vitality Calm, take 1/4tsp (1-2g) at first and up it every day 1/4tsp (1-2g) to the full dose or til you get loose stools then back it back down dosing to tolerance. If you have normal daily bowl movements get Doctors Best Magnesium powder and take as suggested, night works best.
      Iron, to help absorption you have to take it with vitamin C other wise your going to have more issues, topped with damaged gut and body constantly healing you need the help. I use Vegan Protein Powders like Jarrow Pumpkin, Naked Pea, Growing naturals pea, Julian Bakery Pegan (both plain which is sancha inchi, and the cinnamon twist which is pumpkin), MRM Veggie elite etc all of which are high iron, magnesium, etc and great for working out, recovery. It took the first 2 years of healing before I started being able to step up my work out regime....I am now body building and working out most of the week. I personally follow a Paleo/Keto diet to manage other conditions and it keeps a lean and muscular build sustainable due to the higher protein, fats, and iron intakes and this disease.

      Zinc might also be needed, which you can get in lozenges...if the lozenges taste like metal then your good, your body lets you know by the taste if it needs it or not.
    • And there’s that brain fog. I went gluten-free the day of my biopsy. The doctor said to keep eating gluten up until then even though we knew it was damaging based on the blood work.
    • If you have waited a whole year to go gluten-free - being diagnosed last May- it is going to take longer than a month to feel better.  You spent a whole year knowingly hurting yourself.
    • Hi again everyone. I’ve been gluten free for 27 days now, and was officially dx late March with celiac. I received the diagnosis from a nurse over the phone, and my follow up isn’t til late June. I’ve been doing pretty well with everything but have so many questions.  When I got my blood work back in December, I upped my gluten intake quite a bit— last time having all my favorite Christmas cookies, special holiday beers etc. I developed a really itchy rash around my mouth and nose bilaterally, which is still kicking around. Should I have this checked by a dermatologist or give it some more time to potentially respond to the gluten-free diet? At the same time in December, I really relaxed my workout regimen. I have felt for a few years now that I’ve been making less progress than the effort I was putting in. My iron has been an issue since early childhood, and I’ve been on supplements but it doesn’t make much difference. Now that I’m on the diet, I am trying to get back into a workout routine, but I’m left feeling very achy and fatigued after. So I’m wondering if I should just keep taking it easy and hold off on higher intensity workouts?  The last thing I’ve really been struggling with is brain fog. I have an intellectually demanding job, and even the most basic words can be tough for me to recall. My focus has been terrible. Outside of work, I find myself starting different projects and never completing them, jumping from one hobby to the next in quick succession. On top of that, I’ve been pretty emotional and feeling like I just do not know how to properly care for myself. I feel like a complete space case. Are there supplements I could take to remedy this? sorry in advance for the long post. It is so nice to have this forum to seek advice. My family has been supportive, but they usually just say “it’ll get better, you’re doing your best..” etc without really knowing how to help. And I’m really eager to get back to my doctor, but he is a gastroenterologist and really only seemed interested in my GI symptoms the first time around.
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