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The ‘Masking’ of Celiac: Do Not Ignore the Smoking Gun

This article originally appeared in the Autumn 2014 edition of Celiac.com's Journal of Gluten-Sensitivity.

Celiac.com 01/02/2015 - What an odd thing to say: “Do not mask the appearance of celiac disease.” Inferring that you keep on eating gluten, despite early signs of celiac disease, until you get enough damage to your intestines that it can be seen under a microscope. I totally disagree with this concept—but this is still a common belief of medical practitioners.

Photo: CC--Dennis JarvisFor instance a dietitian said this recently: “Gluten-free diet as an experiment to see if you (or your children) feel better, can be beneficial, but this approach can mask underlying celiac disease.”

Have you ever heard of a doctor “masking” the diagnosis of heart disease by failing to treat high blood pressure or high cholesterol until the patient has a heart attack? Ridiculous! Have you ever heard of a doctor “masking” the diagnosis of depression so that the person is suicidal before given help? Ridiculous!

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A colleagues writes: “As far as ‘masking’ celiac disease, that would be like saying that a person who is pre-diabetic should continue to eat lots of sugar and carbs so they can destroy enough beta cells to develop full blown diabetes. That eating low carb might mask diabetes. Meanwhile the pre-diabetic blood sugars can continue to damage the body in many insidious ways. Maybe these dietary changes should be looked at as preventive measures that are good.”

So why is the “masking” concept reserved for celiac disease? I regard a slightly raised tTG result as a ‘smoking gun’ (this also goes for EMA and DGP). Yes, the concept of “do not go gluten-free so that you do not mask celiac disease diagnosis” is contentious.

There are many threads to this problem:

  1. Celiac disease is a progressive condition—it slowly gets worse the longer you eat gluten;
  2. In the early stages of CD, it cannot be diagnosed by endoscopy biopsy;
  3. The biopsy test is inaccurate and relies on experts to recognize early disease;
  4. Most people who get gluten-illness do not have celiac disease;
  5. Gluten-related-disorders-without-gut-damage are indistinguishable from early-celiac-without-gut-damaage-yet;
  6. Carrying the HLA DQ2/DQ8 gene cannot be used to make a diagnosis, but if you do not carry the gene, it will be very unlikely that you have celiac disease;
  7. The “masking” concept originated a few decades ago when biopsy was the only way to diagnose celiac disease;
  8. Now, the blood tests for celiac disease (EMA, tTG, DGP) are more accurate than the biopsy, and can turn positive BEFORE there is any histologic evidence of gut damage;
  9. Once celiac disease has become established, you cannot guarantee complete remission;
  10. Gluten challenge is detrimental to your health;
  11. A gluten challenge (to create serious bowel damage) can take years, during which time ongoing body damage (brain, skin and bowel) is ongoing;
  12. Celiac disease and gluten-senitivity often co-exist.

This concept is addressed in my new book “Gluten-related disorder: sick? tired? grumpy?” Available as an ebook at http://www.GlutenRelatedDisorder.com.

Celiac.com welcomes your comments below (registration is NOT required).





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20 Responses:

 
Dru
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said this on
02 Jan 2015 10:56:41 AM PDT
It would be interesting to see a rebuttal of this article by Dr. Green or Dr. Fasano.

 
DedeGonzo

said this on
05 Jan 2015 7:05:50 PM PDT
100% agreed.

 
carolle
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said this on
05 Jan 2015 6:55:26 AM PDT
I went through blood work and it showed up negative for CD...but I had been sick all my life and then one day I was told to look up the symptoms...I had most of them...so I decided to go GF all the way and I have never felt better in my life as I do now. Most of my symptoms have gone away. I have been on this GF diet for 6 years now. If I have anything with wheat, rye, barley, oat or anything modified or anything of the sort...I get really sick. I'm thankful I'm on the GF diet. It is a life changing experience and something I have to stay on for the rest of my life. Some people do not understand but that doesn't matter all that matters is that I am healthy.

 
Michael
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said this on
05 Jan 2015 5:35:01 AM PDT
Dr. Ford has the same ideas that I have, and I am firmly in his camp regarding what we should do and hope for regarding gluten and the goals of society. on October 1, 2012, I had dinner(gluten-free) with Dr. Ford. Here is one of my principles: I follow the gastroenterologist a who are gluten-free. By that I mean doctors Fine and Ford. Dr. Kenneth Fine said many years ago that only 1% of Americans don't have an HLA-DQ gene that confers risk for gluten sensitivity. Dr. Marios Hadjivassiliou says that not only DQ2 and DQ8 confer risk for gluten ataxia, but also DQ5 and DQ6. Some researchers believe DQ7 and DQ9 give some risk for celiac. What's left? Only 2% of all Caucasian American HLA haplotypes, according to information on Wikipedia. This clearly shows how ludicrous it is to pursue drugs and vaccinations for celiac disease. The gastroenterologists who pursue such folly are gluten consumers, and as such are drug crazed addicts in my opinion.

 
Hialry
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said this on
05 Jan 2015 8:33:50 AM PDT
Thank you so much for bringing this to the attention of all of us. I appreciate being able to send dieticians, family and anyone to your references. This really explains a lot of misconceptions and by an expert... Thank you Dr. Ford.

 
Deborah Ross
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said this on
05 Jan 2015 9:24:34 AM PDT
I was heartened to see this critique of what has passed for celiac diagnosis for so long. Just six years ago, after years of eating gluten (because at age 10 my pediatrician told my mother "she's outgrown the condition" the symptoms returned - with a vengeance. Everything I ate passed through me in under an hour. To make a long story short: I wound up putting myself back on a GF diet despite a gastroenterologist poo-pooing (pun intended) my description of childhood symptoms and multiple family members with gluten intolerance. Today I enjoy relatively good health at nearly 67 years. I stay away from wheat, rye, and barley. I eat all other foods with great enjoyment! While I try to watch my salt intake, I use a large grain of this with doctors' advice!

 
Ktb
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said this on
05 Jan 2015 9:57:04 AM PDT
Totally agree!!! I continually find it the height of unethical medicine to suggest that patients need to have such total damage to their intestines that an MD can see it before getting a 'real' celiac diagnosis. Why not have a questionnaire with a matrix of questions etc. and the blood test and HLA testing in order to diagnose the massive numbers of people without a proper diagnosis? The whole process of diagnosis needs an overhaul that works for everyone, not just those with good enough health insurance to guarantee they can afford the biopsy.

 
Sue
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said this on
05 Jan 2015 10:10:46 AM PDT
Please send more info on gluten intolerance and anxiety and depression.

 
Sandy
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said this on
07 Jan 2015 9:16:26 PM PDT
Sue, you can easily do your own research ..... just "ask" Google the following ... "are gluten intolerance and anxiety related to celiac disease" ? You will get many responses to your question. Read many of the numerous responses to get a well-rounded bit of information.

BTW -- People tend to use words that "say" one thing but mean another such as using the word allergy. A wheat allergy is a separate thing and not the same as celiac disease. When you have celiac disease that does not mean you are "allergic" to gluten. The same applies when you've been diagnosed with non-celiac gluten sensitivity. For those of us with a gluten (actually gliaden) intolerance -- the proper terms are those used above. I hope this is helpful to you.
Keep reading and researching .....

 
J M
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said this on
05 Jan 2015 11:08:13 AM PDT
Thank you for posting this article. I was told by 3 GI medical docs to continue eating gluten, despite CD family history and severe symptoms myself for years, because my biopsy and blood tests were negative. I smartly have followed the very simple strict gluten free diet now for years and I am glad I disregarded the bad advice. I have since told my anecdotal experience to many individuals who have shared similar stories of lack of helpfulness, or bad advice really, from their MDs. With all due respect to physicians, I personally wish more doctors would take a more out of the box approach with the complexities of this disease and gluten intolerance in general.

 
Teresa
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said this on
05 Jan 2015 1:46:58 PM PDT
This article doesn't reveal that Dr. Ford believes that no one should eat gluten. "Everyone is at risk from eating gluten: any person, any symptom, any time." See his web site.

 
Eustace
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said this on
05 Jan 2015 2:27:19 PM PDT
I am totally on board with these comments.

 
DonH
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said this on
05 Jan 2015 3:10:04 PM PDT
The problem doctors have with celiac disease is that it is only profitable during the diagnostic stage. Gluten damaged my rectum to such an extent that I required surgery. I had vision disrupting headaches. The moment we discovered the source of my suffering we were going to everything in our power to avoid the cause of my pain. Why would I voluntarily subject myself to the health destroying agent responsible just so the medical services industry can make more money?

 
Margy tuckman
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said this on
05 Jan 2015 4:12:38 PM PDT
Excellent: my daughter was diagnosed by blood test eliminated the gluten and felt better very soon after/ her endoscopy was performed later and no damage found....would not have encouraged her to eat gluten if endo done first

 
DedeGonzo
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said this on
05 Jan 2015 7:53:17 PM PDT
Fourteen year old daughter had many symptoms but negative to blood tests and no family history. Went on gluten challenge and was diagnosed on follow up endoscopy. Yes, I guess we can say that the challenge "caused" damage, however had we not done that, she may still be eating gluten to this day (she would not have gone GF without proof). There are many celiacs who test negative to the blood tests, and even to the endoscopy. Not an easy disease to diagnose. That goes without saying.

 
Danielle
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said this on
06 Jan 2015 7:15:09 AM PDT
Ankylosing Spondylitis is another disease of immunity where doctors(not all) want to see "damage" to the joints(sacroiliac) before they will diagnose it. Fortunately they seem to be moving away from this. I agree that diagnosing through inducing damage is primitive.

 
Brain Robinson
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said this on
07 Jan 2015 5:33:56 AM PDT
I always want to ask people who say don't stop eating gluten until tested, WHY? Would you tell a smoker to keep smoking until they get lung cancer? If a person feels better and healthier on a gluten free diet that they have chosen to eat, then more power to them. Getting diagnosed gets you nothing extra. No one gives you free pills or money or anything for getting diagnosed.

 
said this on
07 Jan 2015 7:12:25 AM PDT
CD/Gluten sensitivity represents in the simplest form antigen-antibody or allergic reactions. The receptors on endothelium and T-cells in an activated state react with the antigen (gluten) and cause the damage to the intestinal lining. When you take gluten away (from the diet) by consuming gluten free diet or even by taking the enzyme (AN-PEP) with the low gluten or "so called" gluten-free diet, you have removed the cause of the disease, pure and simple.

 
Jo Ann
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said this on
13 Jan 2015 12:27:04 AM PDT
Good information. It helped me understand some symptoms that I actually have never had. My Dr. was concerned because I was taking iron pills...more research was done.

 
Sylvia Dellas
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said this on
02 Jan 2017 12:37:01 PM PDT
Is it possible that the processed food industry has an interest in putting down the idea of going gluten free? After all, there are not many processed foods that celiacs would feel safe in consuming. I go down the frozen food cases and toss back one package after another because there is wheat listed in the ingredients. It is nice to be able to pop some enchiladas in the microwave for a quick dinner, but most contain wheat, even though the tortillas are made from corn. I think that wheat is a cheap filler/thickener to use in food, so it appears in most everything.rnAnd wheat is ubiquitous in the snack food aisles. Just think of the drop in snack food consumption if a large percentage of the population went gluten free. rnIt would be interesting to know if the food industry sponsors physician conferences in which there is discussion of going gluten free.




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@cyclinglady thanks for checking in Restricted diet didn't do much. Still had some VA last time they checked. Heath still otherwise fine, so RCD remains unlikely. My sxs kick in lockstep with life stress, so that kind of points to some general IBS stuff on top of celiac disease. Very doubtful I'm getting any gluten in, but fingers crossed my system is just a little hyper-vigilant, as I ponder on this thread.

I have always noticed that the table wine in Europe is pretty damn good! I am a wine lover and so is my husband but he does like his Green's beer.

The reason they set the limit at 20ppms is that through scientific study, they have proven that the vast majority of people with Celiac Disease do not have an autoimmune reaction to amounts below that......it is a safe limit for most. Also, just because that limit is set at 20ppms, does not mean that gluten-free products contain that amount of gluten. Testing for lower levels becomes more expensive with each increment down closer to 0-5ppms, which translates into higher priced products. Unless you eat a lot of processed gluten-free food, which can have a cumulative affect for some, most people do well with the 20ppm limit.

I'm in the Houston area so I'm assuming there are plenty of specialists around, though finding one that accepts my insurance might be hard. This might sound dumb, but do I search for a celiac specialist?? I'm so new to this and want to feel confident in what is/isn't wrong with my daughter. I'm with you on trusting the specialist to know the current research.

Hi VB Thats sounds like a good plan. Would it help to know that a frustrating experience in seeking diagnosis isn't unusual With your IGG result I'm sure a part of you is still wondering if they are right to exclude celiac. I know just how you feel as I too had a negative biopsy, but by then a gluten challenge had already established how severely it affected me. So I was convinced I would be found to be celiac and in a funny way disappointed not to get the 'official' stamp of approval. Testing isnt perfect, you've already learned of the incomplete celiac tests offered by some organisations and the biopsy itself can only see so much. If you react positively to the gluten free diet it may mean you're celiac but not yet showing damage in a place they've checked, or it may be that you're non celiac gluten sensitive, which is a label that for a different but perhaps related condition which has only recently been recognised and for which research is still very much underway. We may not be able to say which but the good news is all of your symptoms: were also mine and they all resolved with the gluten free diet. So don't despair, you may still have found your answer, it just may be a bit wordier than celiac! Keep a journal when you're on the diet, it may help you track down your own answers. Best of luck!