Silent Celiac

[BreadBaker]

Hi there. My son is a silent celiac. A little back story. He’s 17, he’s also a type 1 diabetic since he was 7. Throughout the last 5 years we were told he had some positive markers for celiac. Not enough to warrant a dx. In September they had went up, enough for a dx. But my son has no symptoms. So he refused to believe it. He wanted the endoscopy and biopsy. We had it done and while there wasn’t very much damage there was some inflammation and he was also dx with H. Pylori. (Also with no symptoms) his doctor told him that he could eat gluten 1 day a month. This confuses me. I see some people who can’t even eat food that was near other gluten, but she’s saying it’s ok for him to actually eat it? So now he gets all excited for his 1 day of gluten eating (without experiencing consequences) is this  normal? Will he eventually have symptoms? The doctor says 1 month is enough time for the gluten not to cause permanent damage. Just curious if anyone else has heard of this or dealt with being a silent celiac. 

[trents]

Actually, many are of the silent type. I was one of them. A recent study showed that almost 50% of the first degree relatives (parents, siblings, offspring) of those diagnosed with celiac disease had celiac disease themselves when tested but half of them had no symptoms. Symptoms begin to set in eventually as damage to the small bowel villous lining increases and becomes more serious. At 17, he is in the prime of his life and his body is strong. It is fighting well against the damage at this point. I cannot endorse the physician's advice to allow him to eat gluten once a month.

Can you be more specific about "the positive markers for celiac"? Are you referring to antibody testing? Can you post the numbers along with reference ranges?

What is being done for the H. Pylori?

There is a genetic association between type 1 diabetes and celiac disease.

Referring back to my first paragraph and those stats, you and the child's father and his siblings should be tested, even if you have no symptoms.

Edited December 24, 2022 by trents

[Wheatwacked]

  On 12/24/2022 at 3:01 PM, BreadBaker said:

his doctor told him that he could eat gluten 1 day a month.

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Sort of like telling a recovering alcoholic he can drink once a month. Gluten is addictive. Try to come up with a diet that is gluten free, but not a gluten free reproduction of a SAD diet. His tastes will change. At the same time it would be wonderful if the whole family switched. Just pretend you've moved to a country where Wheat is not available.

When my infant son was diagnosed, his doctor recommended it. Not having any symptoms associated with Celiac, we denied. Only real regret and one that would have changed the course of our lives. There are many other symptoms you may have that you have been assured is normal, but it is only normal as long as you consume gluten. My oldest one is a constantly stuffed nose my entire life. (often see that kid on TV) 42 years after my son was born, at 63, I started GFD and now breath easily with closed mouth.

[BreadBaker]

  On 12/24/2022 at 3:16 PM, trents said:

From what I understand in the early years they said he had a couple of positive markers. I’m not sure what that means. I will definitely ask for the results next week when the offices open back up and post here.

He is on a 30 day therapy for the H. Pylori. He’s almost done and is taking two antibiotics, a PPI, and a stomach ulcer med, not sure why because they didn’t see any stomach ulcers. But from what I read it’s a stomach protectant and I assume the doc knows what she’s doing to I’m just following the directions. 

[trents]

H. Pylori is the leading cause of stomach ulcers.

The veteran celiacs on this forum will tell you that we cannot trust physicians to know much about our disease. Things are improving slowly in that regard but many physicians are operating on very outdated information and a lot of misinformation. We have learned we have to advocate for our family members and ourselves by going to appointments armed with information and being prepared to be respectfully assertive to even get proper testing done.

Here is a primer for celiac antibody tests, which I assume is what your term "markers" refers to: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

[Summers]

  On 12/24/2022 at 3:01 PM, BreadBaker said:

Hi there. My son is a silent celiac. A little back story. He’s 17, he’s also a type 1 diabetic since he was 7. Throughout the last 5 years we were told he had some positive markers for celiac. Not enough to warrant a dx. In September they had went up, enough for a dx. But my son has no symptoms. So he refused to believe it. He wanted the endoscopy and biopsy. We had it done and while there wasn’t very much damage there was some inflammation and he was also dx with H. Pylori. (Also with no symptoms) his doctor told him that he could eat gluten 1 day a month. This confuses me. I see some people who can’t even eat food that was near other gluten, but she’s saying it’s ok for him to actually eat it? So now he gets all excited for his 1 day of gluten eating (without experiencing consequences) is this  normal? Will he eventually have symptoms? The doctor says 1 month is enough time for the gluten not to cause permanent damage. Just curious if anyone else has heard of this or dealt with being a silent celiac. 

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I was told the same back in 2007, I continue to eat gluten in “moderation”but because I had no symptoms,  I may have had more at times than I should have. Now fast forward to 2017, I was told my colon was damaged and to get off it completely. Once I removed gluten completely from my diet I discovered I did have symptoms, I mistakenly ate gluten one day and immediately got a really bad headache, I was so exhausted I could not think straight and my stomach felt very nervous but not painful then I realized for years I have been going to so many Dr because I will get so exhausted it took a lot out of me just to talk, I saw a neurologist for my headaches and memory loss not able to concentrate and discover it was from eating gluten all that time. So be careful with your son like me he may not have severe symptoms or no symptoms but it  may still damage his colon over time. Granted mines was a 10yr span. 

[trents]

  On 12/28/2022 at 6:32 PM, Summers said:

So be careful with your son like me he may not have severe symptoms or no symptoms but it  may still damage his colon over time. Granted mines was a 10yr span. 

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Celiac disease damages the villi that line the small bowel but not the colon. The small bowel is at the other end of the intestines.

[Summers]

  On 12/28/2022 at 10:15 PM, trents said:

Celiac disease damages the villi that line the small bowel but not the colon. The small bowel is at the other end of the intestines.

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That’s what I meant. Thanks for the correction. 

[teresaburris]

  On 12/24/2022 at 3:01 PM, BreadBaker said:

Hi there. My son is a silent celiac. A little back story. He’s 17, he’s also a type 1 diabetic since he was 7. Throughout the last 5 years we were told he had some positive markers for celiac. Not enough to warrant a dx. In September they had went up, enough for a dx. But my son has no symptoms. So he refused to believe it. He wanted the endoscopy and biopsy. We had it done and while there wasn’t very much damage there was some inflammation and he was also dx with H. Pylori. (Also with no symptoms) his doctor told him that he could eat gluten 1 day a month. This confuses me. I see some people who can’t even eat food that was near other gluten, but she’s saying it’s ok for him to actually eat it? So now he gets all excited for his 1 day of gluten eating (without experiencing consequences) is this  normal? Will he eventually have symptoms? The doctor says 1 month is enough time for the gluten not to cause permanent damage. Just curious if anyone else has heard of this or dealt with being a silent celiac. 

Expand Quote  

No sir that really sounds crazy. Get a 2nd opponent. Anyway go have him checked out by another phy.

[MiriamB70]

  On 12/24/2022 at 3:01 PM, BreadBaker said:

Hi there. My son is a silent celiac. A little back story. He’s 17, he’s also a type 1 diabetic since he was 7. Throughout the last 5 years we were told he had some positive markers for celiac. Not enough to warrant a dx. In September they had went up, enough for a dx. But my son has no symptoms. So he refused to believe it. He wanted the endoscopy and biopsy. We had it done and while there wasn’t very much damage there was some inflammation and he was also dx with H. Pylori. (Also with no symptoms) his doctor told him that he could eat gluten 1 day a month. This confuses me. I see some people who can’t even eat food that was near other gluten, but she’s saying it’s ok for him to actually eat it? So now he gets all excited for his 1 day of gluten eating (without experiencing consequences) is this normal? Will he eventually have symptoms? The doctor says 1 month is enough time for the gluten not to cause permanent damage. Just curious if anyone else has heard of this or dealt with being a silent celiac. 

Expand Quote  

I am 52 and live in the UK. I was diagnosed with silent celiac disease in 2015.  I am also a type 1 diabetic (T1D).  When I was living in Germany prior to the UK, they started testing all T1Ds for celiac.  I had a positive serology but the biopsy was negative.  I was told to continue a normal diet and get retested after a few years, which I did.  Then 2 years later the serology was apparently the highest they had ever seen and the biopsy was positive.  I was told to go on a gluten-free diet and had a follow-up biopsy which showed that the gut had recovered.  I was also told that if I were to eat gluten, my gut would take six months to recover.  I was also told I would probably develop sensitivity and symptoms to gluten with time (when dietary mistakes happen), but this has not been the case.  When mistakes happen I don't feel any different.  Also when I switched to a gluten-free diet after the diagnosis, I did not feel and better than before. 

My dietician, whom I see a couple of times a year, is very strict and she says I should not even be eating in restaurants and not eating anything that says "may contain traces of gluten".  I once asked if it would be ok to travel to Asia and just consume soy sauce for a week of my life.  She said "absolutely not!".  I must admit that I find this approach too strict and I don't follow these orders.  I get a blood test every time I see her and the blood tests always come back negative, even when mistakes have happened. 

I have started to wonder if this is all a bit overdone. I read in some medical research recently that they tracked two groups of celiacs, one who stuck to their diet at all times and one who cheated about once every one to two weeks. They found no significant difference in the guts of people in both groups.  This would align with the advice your son's doctor is giving. 

I also remember reading about a person diagnosed with silent celiac disease who was then years later told by another doctor that she would not have diagnosed her with celiac disease based on the biopsy results that had caused the previous doctor to diagnose her with celiac.  She went on with life as normal and no longer considered herself celiac. 

This just goes to show that different doctors have different opinions. I have also gotten different information from different doctors, which makes me think that doctors are also not that knowledgeable or maybe they are not keeping up with the latest research.  I heard it takes seven year for new research to trickle down into standard medical protocol. 

I realize you posted this last year, but I thought I would reply anyway and hope that my experiences are useful in some way.

[trents]

  On 6/22/2023 at 3:59 PM, MiriamB70 said:

Then 2 years later the serology was apparently the highest they had ever seen and the biopsy was positive.  I was told to go on a gluten-free diet and had a follow-up biopsy which showed that the gut had recovered.  I was also told that if I were to eat gluten, my gut would take six months to recover.  I was also told I would probably develop sensitivity and symptoms to gluten with time (when dietary mistakes happen), but this has not been the case.

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You were told that if you were to eat gluten your gut would take six months to recover? Are you referring to one slip up here and there or steady consumption of gluten? Occasional exposure to gluten should not require six months for the gut to heal. If you were told that it was false. But after diagnosis and being compliant with gluten free eating it often takes 2 years or longer for full healing of the gut. Less time for children and young people.

Edited June 22, 2023 by trents

[trents]

  On 6/22/2023 at 3:59 PM, MiriamB70 said:

I was also told I would probably develop sensitivity and symptoms to gluten with time (when dietary mistakes happen), but this has not been the case.  When mistakes happen I don't feel any different.  Also when I switched to a gluten-free diet after the diagnosis, I did not feel and better than before.

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This has not been my experience. Before diagnosis I was almost silent. Now, after years of gluten free eating, I become violently ill if I get a significant gluten exposure. And I think my experience is more typical, judging by years of reading about other's experience on this forum.

[trents]

  On 6/22/2023 at 3:59 PM, MiriamB70 said:

When mistakes happen I don't feel any different.  Also when I switched to a gluten-free diet after the diagnosis, I did not feel and better than before.

I have started to wonder if this is all a bit overdone.

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Of course you would not feel better than before. You were a silent celiac to begin with.

And I think you need to be careful in advocating for more laxity in gluten free eating for celiacs in general. Your experience is not necessarily typical. And referencing an isolated study here and there or anecdotal accounts does not necessarily constitute proof of your position.

Edited June 22, 2023 by trents

[trents]

  On 6/22/2023 at 3:59 PM, MiriamB70 said:

 I have also gotten different information from different doctors, which makes me think that doctors are also not that knowledgeable or maybe they are not keeping up with the latest research. 

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I would certainly agree with this. Some doctors have this negative attitude toward gluten disorders and consider it all to be a fad diagnosis and "gluten-free" to be the latest fad diet. Many celiacs, including myself, have experienced irreversible damage to body systems because uninformed doctors operating on outdated information misdiagnosed us for many years.