Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

"latent" Celiac Disease...?


Lux

Recommended Posts

Lux Explorer

Has anyone heard of/been diagnosed with this? I recently had a biopsy, and it came back negative for bowel damage...but my GI said that because I tested positive for the antibodies, I have Latent Celiac - and thus will require follow-up tests throughout the next ten years. I have decided to continue with the gluten-free diet simply because I feel better on it. What I don't understand, though, is what then accounts for my GI symptoms? I have a number of other sensitivities, including soy, dairy, and I don't tolerate raw foods well (is this normal? I have heard that raw is supposedly easier on the digestive system)...

Sorry for all the questions! I'm so confused...

This board is brilliant, by the way. :-) xo


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



psawyer Proficient

"Latent" simply means hidden. Not everyone with celiac disease presents with visible symptoms, but the fact that you test positive for the antibodies means you have it.

It is possible that the disease is still early and damage is not yet sufficient to be noticeable. It is also possible to have a negative biopsy simply because the damage is is parts of the intestine, and the samples came from undamaged locations.

You should definitely stay on the gluten-free diet.

darlindeb25 Collaborator

I have heard of "latent celiac" before and I truly feel a doctor is doing the patient wrong by telling them not to worry because it's just "latent celiac"! My friend was told her son has latent celiac and not to worry about him yet! Just keep him as gluten free as possible, but that he may not be full blown celiac for maybe 10 yrs. Now to me, that is the worst diagnosis he could have given her. If they can see celiac, then the child has celiac. If they can say the word celiac, then the child should be gluten free, end of discussion. The mother now feels she can decide one way or the other. Yet, the child has downs syndrome and is ill. He has terrible constipation and definitely does need a diet change for his health. Not only that, but the mother herself has health issues and I believe, probably could greatly benefit from a gluten free diet. Her doctors will not even test her for celiac now.

I think you are making the right decision by being gluten free.

AllieB Newbie

You and I are the flip of each other. You have the antibodies but no sign of disease in the gut. I have signs of the disease in the gut, but no antibodies. Go figure.

In my experience, doctors don't like diagnosising celiac disease unless they are 100% positive, mostly because (in my opinion) they can't do anything about it. (aka there is no drug treatment) And (in their opinion) the dietary restrictions are excessive and hard to live with.

With the antibodies present, it's probably only a matter of time until the signs show up in the gut. But does it make sense to go through a couple more upper endoscopes just to be sure? It wouldn't for me. I'm tired of doctors.

Allie

Lux Explorer

Thank-you all for your wonderfully supportive replies. It isn't that I don't realize that no current damage is a good thing (!) but it does make you feel as if your diagnosis isn't taken quite as seriously if you don't have that tangible evidence. I feel that having the antibodies is enough, but they (the medical profession) insist on the biopsy being a "gold star" diagnosis, which is incredibly irritating for those of us who want to be taken seriously when we discuss our symptoms (for years, I have been told over and over again that all I need to do is "change my lifestyle" in order to resolve my GI symptoms. This advice, at a time in my life when I was eating what I had deemed "good" food, was exercising, and practicing yoga on a regular basis).

Grr.

AllieB, what did your doc say to you with regards to diagnosis? Did she/he recommend a strictly gluten diet? I take it you are now on one anyway?

Thanks again!!!

xo

Gwen B Rookie
Has anyone heard of/been diagnosed with this? I recently had a biopsy, and it came back negative for bowel damage...but my GI said that because I tested positive for the antibodies, I have Latent Celiac - and thus will require follow-up tests throughout the next ten years. I have decided to continue with the gluten-free diet simply because I feel better on it. What I don't understand, though, is what then accounts for my GI symptoms? I have a number of other sensitivities, including soy, dairy, and I don't tolerate raw foods well (is this normal? I have heard that raw is supposedly easier on the digestive system)...

Sorry for all the questions! I'm so confused...

This board is brilliant, by the way. :-) xo

I think everyone else has answered well on the diagnoses issue, and I agree gluten-free is a good decision on your part. But I understand the need for black and white on paper, it does make it easier to explain to others that you are 'diagnosed' celiac rather than just trying a new diet! <_< .

As for the raw food, I think it's normal to be sensitive to raw foods at the start of the diet until your gut has healed. Raw foods are more difficult to digest if your gut is already low on enzymes and the right kind of bacteria to digest. Food just isn't being assimilated into the body as normal people do hence the propensity for low vitamin absorption, anemia etc. I know that raw food is supposed to be good in the long run as it contains so many nutrients that are often compromised or eliminated in cooking, but I think it's better to ease into raw foods as you begin to feel better and your gut has time to heal. My yoga school is really keen on raw foodism and some people who have gone raw seem to have cured their illnesses (quite probably undiagnosed celiacs from the sound of their symptoms) after a time. I thought that the raw food diet excludes grains but yesterday my yoga teacher had some lovely looking raw food on the counter after class, walnut crackers and rejuvilac (looked like cream cheese with herbs), which turns out to be made with wheat berries. I'm pretty sure I don't want that and think it could be dangerous to those who think that the raw food diet has cured them if all they really needed was to be gluten-free!

Sorry I've gone on a bit of a tangent. Despite some reservations about raw food on my healing gut. I'm 4 months gluten-free, CF, 2 months soy free and more recently Tapioca & Carageenan free. As a yoga friend pointed out with that list I might as well join the raw food club! I'm still researching this but this week I am trying green smoothies principally as a way to level my energy/blood sugar levels. In the past I was always getting really tired and shakey during and especially after class despite taking vitamins, enzymes and probiotics. I followed the Victoria Boutencko 'Green for Life' book which showed some health successes in people from Roseburg, Oregon who drank a quart of green smoothie for 30 days.

While I am sceptical about some of her suppositions in the book I do think that the idea that combining green foods like Kale, lettuce, spinach etc in a smoothie with fruit does make sense as by having the food "pre-chewed" as she puts it makes it so much easier to digest and assimilate the goodness from the vegetables. Basically you use 60%fruit 40% veg plus some water eg. 1 cup red grapes, 1 orange, banana, 6-8 Romaine leaves, 2 cups water and blend really well.

I really like the smoothies and it kind of fixed a craving I had, for broccoli of all things. I felt more even energy in the yoga class and all day yesterday. I was still hungry for 'real food' and I ate a good lunch and dinner in addition to the smoothie. I probably wouldn't eat that much greens otherwise so at least I feel I had my quota of greens! It's too early to say if this is going to help with my healing but I intend to continue for another couple of weeks to see. I feel really good these past couple of days, with energy I had forgotten what it felt like and I was able to wake up and feel like getting up in the morning :) I can't yet tell whether it was dropping the Tapioca and Carageenan which made me feel better or if the scarey green drinks can make a difference. Hope some of this helps you. Sorry this is way too long. Feel better soon. :rolleyes:

gfp Enthusiast
"Latent" simply means hidden. Not everyone with celiac disease presents with visible symptoms, but the fact that you test positive for the antibodies means you have it.

It is possible that the disease is still early and damage is not yet sufficient to be noticeable. It is also possible to have a negative biopsy simply because the damage is is parts of the intestine, and the samples came from undamaged locations.

You should definitely stay on the gluten-free diet.

Can't fault anything psawer said ...

I would go further though as darlingdeb said

I have heard of "latent celiac" before and I truly feel a doctor is doing the patient wrong by telling them not to worry because it's just "latent celiac"!

This reeks of "Do this until you damage yourself then we will take you seriously"

Its akin to someone seeking help for alcoholism and having a liver biopsy within 'acceptable' norms.

Despite the fact they tell the Dr. they are drinking 3 bottles of hard liquor a day the Dr. turns round and say's but your biopsy is normal .. come back when you have damaged your liver.

I can only presume you went to the doctor for a reason and were tested for a reason....

Antibodies came back positive ... regardless of what we CALL it you're reacting so why wait until the damage is obvious???

Meanwhile you are stressing your thyroid and immune system and possibly doing neurological damage ...

Many of us are happier (less depresssive/reclusive) gluten-free regardless of other symptoms...

This in itself offsets the inconvenience ....


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Lux Explorer

While I am sceptical about some of her suppositions in the book I do think that the idea that combining green foods like Kale, lettuce, spinach etc in a smoothie with fruit does make sense as by having the food "pre-chewed" as she puts it makes it so much easier to digest and assimilate the goodness from the vegetables. Basically you use 60%fruit 40% veg plus some water eg. 1 cup red grapes, 1 orange, banana, 6-8 Romaine leaves, 2 cups water and blend really well.

Hey Gwen,

Thanks so much for your comprehensive reply! I will definitely try this smoothie; will let you know how it turns out!

xo

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,131
    • Most Online (within 30 mins)
      7,748

    Itsabit
    Newest Member
    Itsabit
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Keep us posted and let us know the results of the biopsy. Your case is atypical in a way in that you have this high DGP-IGA but normal TTG-IGA so knowing how it turns out will give us more data for similar situations that may be posted in the future. 
    • Skg414228
      Fair enough! I very easily could have misread somewhere. Celiac is very confusing lol but I should know in a little over a month what the final verdict is. Just thought chatting with people smarter than myself would get me in the right mindset. I just thought that DGP IGA was pretty high compared to some stuff I had seen and figured someone on here would be more willing to say it is more than likely celiac instead of my doctor who is trying to be less direct. She did finally say she believes it is celiac but wanted to confirm with the biopsy. I did figure it wouldn't hurt seeing what other people said too just because not all doctors are the best. I think mine is actually pretty good from what I have seen but I don't know what I don't know lol. Sorry lot of rambling here just trying to get every thought out. Thanks again!
    • Scott Adams
      Yes, these articles may be helpful:    
    • trents
      No, you don't necessarily need multiple testing methods to confirm celiac disease. There is an increasing trend for celiac diagnoses to be made on a single very high tTG-IGA test score. This started in the UK during the COVID pandemic when there was extreme stress on the healthcare system there and it is spreading to the US. A tTG-IGA score of somewhere between 5x and 10x normal is good enough by itself for some physicians to declare celiac disease. And mind you, that is the tTG-IGA, not the DGP-IGA. The tTG-IGA is the centerpiece of celiac antibody testing, the one test most commonly ordered and the one that physicians have the most confidence in. But in the US, many physicians still insist on a biopsy, even in the event of high tTG-IGA scores. Correct, the biopsy is considered "confirmation" of the blood antibody testing. But what is the need for confirmation of a testing methodology if the testing methodology is fool proof? As for the contribution of genetic testing for celiac disease, it cannot be used to diagnose celiac disease since 40% of the general population has the genetic potential to develop celiac disease while only 1% of the general population actually develops celiac disease. But it can be used to rule out celiac disease. That is, if you don't have the genes, you don't have celiac disease but you might have NCGS (Non Celiac Gluten Sensitivity).
    • Skg414228
      Okay yeah that helps! To answer your last bit my understanding was that you need to have multiple tests to confirm celiac. Blood, biopsy, dna, and then I think symptoms is another one. Either way I think everything has to be confirmed with the biopsy because that is the gold standard for testing (Doctors words). You also answered another question I forgot to ask about which is does a high value push to a higher % on those scales. I truly appreciate your answers though and just like hearing what other people think. Digging into forums and google for similar stuff has been tough. So thank you again!
×
×
  • Create New...