• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      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 FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Really? Is There New Info?
0

15 posts in this topic

Recommended Posts

1974girl    23

So I get my invite to the Chicago Celiac Center's celiac convention. One of the topics is "Silent and Latent Celiacs: To treat or not to treat" Really? Is there any new info? I have kept my silent celiac child on gluten-free to the point of ocd obsession! I thought it was just standard knowledge in the celiac world that you treat silent celiacs...period. At least it is on this board. :D I did just read an article where a study said celiacs die at a normal rate like other people. (After reading another article that said the opposite) So maybe they are deciding something different?

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Will be interesting to find out. My GI in the UK told me there are ethical questions about treating people with no symptoms. I would think there are ethical issues if we know they may have silent celiac and don't suggest treatment.

Interested to know what others know about this, thanks for raising it.

Share this post


Link to post
Share on other sites
mushroom    1,205

Ermh... aren't most cancers initially silent too? :wacko:

  • Upvote 2

Share this post


Link to post
Share on other sites
love2travel    396

Um...I was diagnosed with silent celiac. I was stunned. My villi were completely flattened so I believe I've had it for ages. Nearly two years after my diagnosis, I accidentally ingested gluten and had a severe reaction for the very first time. This happened about a month ago. My doctor treats me as he treats his other celiac patients. I continue to get regular bloodwork, etc. done. Just because I did not have (obvious at the time) symptoms did not make it different. The damage was still being done. In fact, it is absolutely crucial that those with silent celiac get treatment. All celiacs should be monitored closely and regularly.

Share this post


Link to post
Share on other sites
Takala    413

Wow. :ph34r: I guess the self - described finest medical researchers in the world just don't care if one suddenly dies, as long as there is no diarrhea involved ?

They sure like to push this myth that a gluten free diet is impossible for mere mortals. They almost sound like gluten opioid drug addicts, I am beginning to understand why the "Wheat Belly" author keeps digging at the University of Chicago head of pedi gastro.

I did just read an article where a study said celiacs die at a normal rate like other people.

Only if they are TREATED and sticking to a strict gluten free diet AND have experienced gut healing. Otherwise, eventually, because of leaky gut, and the antibodies reacting to the stray proteins, the auto immune reaction attacks the endocrine system (glands) and then the various side effect of the hormones being messed up causes other disease. If the slow starvation and lack of vitamins and minerals going to the proper places doesn't get you first.

Share this post


Link to post
Share on other sites
Ads by Google:


mushroom    1,205

My recollection is that this article from Sweden was based on those with refractory sprue (not sure how long they had to have had damage to be termed 'refractory') and there seemed to be a very high percentage so classified. I would want to see some replicated studies.

Share this post


Link to post
Share on other sites
1974girl    23

You can read the whole article called "Mortality Rates for Celiacs with Persistent Villous Atrophy Similar to those with Healthy Guts". It is on the Publications and Publicity board...page 2. I don't know how you tell the difference between refractory sprue and someone who just doesn't stick to the diet. Both would have villious atrophy. Nevertheless, I am keeping my silent celiac child on gluten-free until something cures it. My dh is type 1 diabetic and the doctors are hoping in some small way this may prevent it from triggering in her. Plus the whole infertility thing....just playing it safe and keeping her gluten-free.

Share this post


Link to post
Share on other sites


Ads by Google:


KMMO320    6

My Dr diagnosed me with "Latent Celiac" and I had thought it was something she just made up on the spot to pacify me because I wasn't letting it go. Basically, my blood work came back negative because of my deficient IGA, and my biopsy showed nothing that proved Celiac, but there was inflammation that she could also connect to the ulcers I had, but the ulcers could have been a symptom of Celiac Disease. We had already done the whole challenge thing and I was found to feel better off Gluten...so she said that I did have Celiac Disease, but we caught it early on, before much damage had been done, that it was Latent. And the only treatment was a gluten free diet, which she said I needed to start immediately before damage was done, and that I was lucky.

So I don't care what any one says...treat it. ASAP. I have been flip floppy on these boards, I know. I have been in denial, I know. But I understand now. I haven't intentionally had gluten in a while. And I have never felt so good.

Share this post


Link to post
Share on other sites
KMMO320    6

The more I read and learn about the benefits of anyone keeping clear of gluten, the more sure I am that as someone with Celiac Disease, I need to keep far from it. I work with children with Autism and all the kids in my class are gluten and dairy free. It just screams to me that something is WRONG with our food, when it benefits us, people with autism, diabetics and so on, to stay clear of it.

Share this post


Link to post
Share on other sites
kareng    1,992

So I get my invite to the Chicago Celiac Center's celiac convention. One of the topics is "Silent and Latent Celiacs: To treat or not to treat" Really? Is there any new info? I have kept my silent celiac child on gluten-free to the point of ocd obsession! I thought it was just standard knowledge in the celiac world that you treat silent celiacs...period. At least it is on this board. :D I did just read an article where a study said celiacs die at a normal rate like other people. (After reading another article that said the opposite) So maybe they are deciding something different?

Ski Lisa and I are going. We will try to bring back the info if our heads don't explode!

Share this post


Link to post
Share on other sites


Ads by Google:


eers03    20

The silent celiac should absolutely stay gluten free. The atypical patient is becoming the typical. Just because one is not having the classical symptoms does not mean that damage is not being done.

Share this post


Link to post
Share on other sites
frieze    114

You can read the whole article called "Mortality Rates for Celiacs with Persistent Villous Atrophy Similar to those with Healthy Guts". It is on the Publications and Publicity board...page 2. I don't know how you tell the difference between refractory sprue and someone who just doesn't stick to the diet. Both would have villious atrophy. Nevertheless, I am keeping my silent celiac child on gluten-free until something cures it. My dh is type 1 diabetic and the doctors are hoping in some small way this may prevent it from triggering in her. Plus the whole infertility thing....just playing it safe and keeping her gluten-free.

Is the death rate the only thing to think about??? What about quality of life????

Share this post


Link to post
Share on other sites
1974girl    23

Is the death rate the only thing to think about??? What about quality of life????

She will tell you her quality of life was better before. Of course, she has no intestinal symtoms and could eat a loaf of bread with no symptoms. So she would revert back to not taking her own food to sleepovers and potlucks. She'd love to be able to eat anything off the menu at any restaurant. She has broken into tears at the sight of Krispy Kreams. But she is 12 and that's just a tough age to be different anyway. So if I was to go on quality of life.....I'd let her eat gluten. But she really does good. She had the donut meltdown within the first 2 months. It's been a year now and she is doing great. I did have her GI appointment this week. I asked her about that topic at the conference. She said nothing has changed and you treat silent celiacs. She said, "they have to come up with topics to get you there." She said every year she has to go to a pediatric GI conference but there is hardly ever anything new.

Share this post


Link to post
Share on other sites
frieze    114

She will tell you her quality of life was better before. Of course, she has no intestinal symtoms and could eat a loaf of bread with no symptoms. So she would revert back to not taking her own food to sleepovers and potlucks. She'd love to be able to eat anything off the menu at any restaurant. She has broken into tears at the sight of Krispy Kreams. But she is 12 and that's just a tough age to be different anyway. So if I was to go on quality of life.....I'd let her eat gluten. But she really does good. She had the donut meltdown within the first 2 months. It's been a year now and she is doing great. I did have her GI appointment this week. I asked her about that topic at the conference. She said nothing has changed and you treat silent celiacs. She said, "they have to come up with topics to get you there." She said every year she has to go to a pediatric GI conference but there is hardly ever anything new.

But that is only the short term.  I would be thinking growth, fertility etc.

Share this post


Link to post
Share on other sites
txgal748    4

I was diagnosed 5/21/12.  I have silent celiac and I think I was diagnosed at the point during which I was becoming very ill.  I was having dizzy spells every day so my PCP had me go to a neurologist who diagnosed me.  Along with the dizziness I noticed that I could not go very long without water.  If I was walking around I would start to feel bad after a while, I felt like I was going to faint, and I felt clammy.  I don't know if this was because of low vitamin D or low B12.  I do know that these episodes disapeared after going gluten-free and taking supplements. 

Share this post


Link to post
Share on other sites


Ads by Google:


Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      107,912
    • Total Posts
      938,645
  • Member Statistics

    • Total Members
      65,835
    • Most Online
      3,093

    Newest Member
    Shirley Ann
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hello, I have been dealing with a mysterious rash for the past ten years that I am slowly beginning to think is DH.  It comes and goes, is itchy as all get out and shows up in all the areas that DH appears (elbows, back, torso, knees and base of neck).  It comes and goes over the years which has thrown me a little, but from what I can tell it can happen with DH? Anyways I went to an allergist, he was a jerk and told me it was not an allergy and to get a biopsy (which was done ten years ago when it first happened, but okay).  Me being at my wits end I called up a local dermatologist and got an appt for a biopsy.  I went in armed and ready with the info I have read here about the correct biopsy etc.  Well of course the dermatologist wouldn't give me the time of day Would not listen to the past history of the rash or look at photos, was in and out within five minutes and insisted on a scratch biopsy instead of a punch biopsy.  She simply said she would be highly surprised if it was DH.  I try to respect doctors so I pushed but I did not push hard enough.  She did the scratch biopsy against my recommendations.  So that brings us to today when I received a message that the biopsy showed an allergy and that they could either give me an order of prednisone or refer me to an allergist.  Now if you remember my local allergist sent me away and said it wasn't an allergy.  I am so done and I refuse to just keep medicating myself, I need to find the root cause.   So I have a physical tomorrow night with my regular doctor and I am tempted to just insist on a punch biopsy next to the rash for a proper biopsy.  Couple questions for you guys though.  If a scratch biopsy came back as an allergy could that possibly lead to gluten allergy (I know it doesn't prove that, but could it mean it could be gluten?).  Should I keep pushing for a punch biopsy? I am planning to go gluten free after this appointment anyways but I keep eating it to try and get a proper diagnosis.  I feel I should get a proper diagnosis, one to keep me on track, one to make sure that is what it is and also I did try gluten free for 30 days before and it didn't seem to help the rash.  But from what I have read that could have been to short of a time.  I feel I need a proper diagnosis to help me stay with it and keep on the right path.   Lastly, the rash definitely went through stages and is at an end stage, still itches like crazy but isn't as bad looking as when it started.  Does it matter when you take the biopsy as long as there is a rash it will potentially show?  I hope all this makes sense.  I am tired of being told I am crazy from doctors.  If they could find the solution I wouldn't be looking myself.  I would be very happy to be proved wrong but so far that has not happened and I just want an answer! So tired of being itchy!! Thank you very much for your help and listening!!!
    • I'm sorry I don't have much advice for you but I can relate in some ways. I've took generic Zoloft for about 10 years. When I was diagnosed celiac I worried about and researched my medications and am confident that they are safe for me. I have spent many years fighting depression and anxiety and have tried different meds but finally accepted I need the Zoloft and Xanax probably for life. I will say that most of our serotonin is in our stomachs and any time I switched meds or had to withdrawal my stomach issues were the worst. So please be careful with switching or stopping ( never cold turkey) any psychiatric medication. Also you could be sensitive to other grains. Gluten free bread does not like me. Also so far I have not found any one in the medical field that takes celiac seriously. I have been laughed at even and most don't have a clue what problems gluten does to us mentally and physically.
    • When does it matter if its gluten-free? ( likely is)  but she isn't eating it. She isn't 2 and put her fingers and paint brush in her mouth.  Are you or your son going to lick the glass?  Of course not.    Any paint can be be scraped off glass with a razor blade.  Some people use dry erase markers
    • Wow. I'm quite surprised that this is so highly heritable. I mean, I knew there was a genetic component, but most things I've read have said that it isn't very well understood and that other factors play a part.  This gives me a lot to think about.
    • The point is, celiac is mostly genetic, it can be dormant for years then come up. You can have it with no symptoms for years as it slowly eats away at your insides also. So you should have your kids eating gluten and get them tested. This way you know if they have active celiac. They should also be tested every year or so as there is a high chance they will get it.
  • Upcoming Events