"latent" Celiac Disease...?

[Lux]

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

[psawyer]

"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]

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]

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]

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]

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.

[gfp]

"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 ....

[Lux]

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