14 replies to this topic

[1974girl]

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.    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?

[Celiac Mindwarp]

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.

[mushroom]

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

[love2travel]

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.

[Takala]

Wow. 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.

[mushroom]

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.

[1974girl]

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.

[KMMO320]

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.

[KMMO320]

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.

[kareng]

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. 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!

[eers03]

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.

[frieze]

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????

[1974girl]

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.

[frieze]

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.

[txgal748]

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.