Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Really? Is There New Info?
0

15 posts in this topic

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?

0

Share this post


Link to post
Share on other sites


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.

0

Share this post


Link to post
Share on other sites

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

2

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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????
0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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. 

0

Share this post


Link to post
Share on other sites

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
      104,688
    • Total Posts
      921,756
  • Topics

  • Posts

    • Do you mean something like a protein powder you could mix up?  A lot of them in the US seem to be gluten free.  Maybe just go to your local store and read all the labels?
    • Yeah I ended up allergic to corn, olives, sesame, whey, and peanuts and intolerant to dairy, soy, yeast, enzyme issues with breaking down meats, and egg yolks, along with extreme bloat with any kind of carbs/sugars in moderate amounts. And very adverse reactions to certain artificial sweeteners. So your not alone in all the other issues cropping up, it happens as our bodies adjust.  I eat a bunch of stir frys with veggies, egg whites, plenty of  avocados, and toasted and raw forms of almonds, coconut, cashews, walnuts, hemp seeds, pumpkin seeds, flax seeds, sancha inchi seeds, chia seeds, and sunflower seeds in all forms including making them into butters, spreads, and incorporating them into sauces.   Most meals are forms of soups, omelettes, and stir frys. I do the seeds and nuts on rotation same with my veggies and snack on fruits in small amounts along with some homemade baked goods I make for markets. I do suggest a rotation of foods, my dietician said I need to rotate my foods to prevent more issues, making sure I am off one one for at least 7-14 days at a time completely. I find changing up the spices and rotating my cuisine base works well. I also make puddings, and protein shakes along with nut/seed milks, and different bases and extract flavorings to get my random cravings Taken care of. Guess take what you can from this and and see how it can help you,    As to the tinging, I ended up with both B vitamin and magnesium deficiency issues, the magnesium one caused a fire like tingling in my arms, legs and back, along with muscle pain. Ended up on a doctors best powder form of it so I can dose it out right, and found epsom salt bathes helped.  
    • Hi, I've gained so much knowledge on this forum over the past few months, which I am so thankful for. I can see how much hell people are going through with this disease and it's so lovely to see how much support and advice people give to others on here. I'd like a little bit of reassurance and advice myself from anyone that can help. I've been gluten free for six months. Two weeks after going gluten free I realised I also had a problem with corn so cut out processed food. Over the following weeks and months I continually had problems with food; fruit, dairy, a lot of vegetables, nuts, soya....it's basically dwindled down to just eating potatoes (not white potatoes), cucumber, lettuce, small amounts of red onion, spring onion, sprouts and beetroot. There may be more things I could be okay with but to be honest I'm too scared to try.  Is this all normal? Am I an extreme case? I've been taking some digestive enzymes and probiotics for about six weeks, my acid reflux has dramatically decreased but I always have a lot of loud noises going on in my guts, I'm guessing this is the probiotics working.  I've lost nearly 3st in weight since this started - which I'm not complaining about as I was overweight due to thyroid problems. I've had loads of blood tests done recently, all organs are working 'great' according to my doctor, the only thing they've picked up on is ketones, I seem to be having a glucose problem, which might explain my exhaustion and weight loss. I also have permanent numbness and sometimes tingling in one of my legs and sometimes hands and one shoulder, I thought it could have vitamin B12 deficiency but that's okay according to blood tests. I would be greatful for any replies. Thanks for reading.
    • Hi everyone, I am doing job in restaurant at evening 5 to 12 during working hours no time to do a dinner. I'm thinking to make a shake but don't know the gluten free vitamin or supplement brand which one is good for me and easily available in Berlin Germany to make me fit cause last one week i feel weak. I'm 28 year old. Sincerely
    • Hey there just wanted to warn anyone that has other allergies- these crackers may not be a good choice! I'm mildly sensitive to MSG- I only react if there's a giant amount like in Chinese food or Ramen noodles, etc.  I literally have a to eat TONS of a the offending food before reacting.  Anyway, I was excited to try these Trader Joes pumpkin crackers, kept hearing about them on the radio .... and they're gluten free!  (I have Hashi's).  I ate about 3/4 of the box last night. Woke up this morning with a red itchy face and nasal congestion, headache, anxiety. Hallmark symptoms for me of high MSG intake. (It does say yeast extract on the side but it's pretty far down the list). So if you're sensitive.... stay away! Apparently these particular crackers are loaded with it. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,690
    • Most Online
      3,093

    Newest Member
    lastcowgirl26
    Joined