Asymptomatic Celiac

[klosmo]

I'm sure this topic has been addressed before, but i could not figure out how/where to find it.

I was diagnosed with Celiac about a year ago. Completely asymptomatic. If you forced me to name a symptom, I'd say I was a bit gassy...but not to the point that i felt it was a problem. Favorite (most consumed) foods were pizza, pasta, cookies etc... Diagnosed due to some "routine" bloodwork related to my hypothyroidism. Have been 20-25 lbs OVERweight my entire adult life. Could not believe the diagnosis, but bloodwork numbers were "off the chart" and endocscopy confirmed severe damage to small intestine. So.... I begin gluten-free diet July 2011. My GI had mentioned that "I might feel better in ways that I didn't know I felt bad" . Well, sadly, he was wrong... Both BEFORE and AFTER gluten-free diet I have fatigue, migraines, joint pain, mild depression, overweight etc... None of these things are debilitating, but they each come-and-go enough and have not lessened since going gluten-free. At the very least I had hoped I'd LOSE a few pounds, but no...i have in fact gained about 5 lbs since going gluten-free 11 months ago. I have been extremely vigilant with my diet, never intentionally consuming gluten. problem is that if i do consume any gluten (via cross contamination) I have no way of knowing. I do not become ill, no GI symptoms etc...

So... my question is...anybody else out there like me? It's so frustrating following this strict diet when i have/had no symptoms. Most annoying is the feeling that I'm so alone b/c I seem to be that "one" Celiac who does not exhibit symptoms. Family has been supportive, but deep down i don't think they "get it". There are times when i question my diagnosis, but my GI is the head of local celiac group in my area (ie- well respected, well informed etc...).

Any advice for the lonely asymptomatic celiac?

[pricklypear1971]

Get your thyroid checked. Tsh, thyroid antibodies and free t3/4.

You may have Celiac and a thyroid problem -meaning whatever you're doing for your thyroid isn't working.

My thyroid problems didn't completely vanish til I went gluten-free. Makes sense it can go the other way too. They do mimic each other.

And there's always the chance you haven't eliminated enough gluten, long enough, to trigger "gluten" symptoms. Sucks but may be true. I know you're trying the best you can...not having an indicator makes it tough (though gluten symptoms are not fun). Have you had your antibody levels checked to see if they are within normal range?

[klosmo]

Get your thyroid checked. Tsh, thyroid antibodies and free t3/4.

You may have Celiac and a thyroid problem -meaning whatever you're doing for your thyroid isn't working.

My thyroid problems didn't completely vanish til I went gluten-free. Makes sense it can go the other way too. They do mimic each other.

And there's always the chance you haven't eliminated enough gluten, long enough, to trigger "gluten" symptoms. Sucks but may be true. I know you're trying the best you can...not having an indicator makes it tough (though gluten symptoms are not fun). Have you had your antibody levels checked to see if they are within normal range?

Thanks, but I already know I'm hypothyroid. Have been for >10 years and have been taking levoxyl ever since diagnosed with that. I get my TSH checked every 6-12 months...as of now it's "normal".

Antibodies have been checked twice in the past nine months...due to have them checked again next month. Not sure exactly what blood test i had but upon diagnosis my "number" was > 800, six months later it was 49 and three months after that it was 26. Hopefully when i get tested next month they will be in the "normal" range.

thanks for the comment.

[pricklypear1971]

You need to read about "normal" thyroid levels and different medications to try. Just my $0.02 since I deal with Hashimotos and Celiac. Many of us do, here. They mimic each other and can drive you up the wall.

Don't dismiss thyroid as what is messing you up, just like you shouldn't dismiss cc.

If the antibody testing you're referring to is Celiac it looks like you have good control in your diet. Look elsewhere.

Thyroid.

[bartfull]

I get psoriasis flares, but no GI symptoms to speak of. I am self-diagnosed so I am not really sure I have Celiac. I just know that when I eat gluten or corn, my psoriasis flares. I also get brain fog and insomnia.

I started the diet almost one year ago and I have lost over 40 pounds. I think it's because of the corn intolerance - it means I can't eat most processed gluten-free foods. gluten-free breads are FATTENING, more so than regular bread. I eat whole foods only - meat, eggs, rice, cheese, and some fruits and veggies. (Oh yeah, it seems I have a problem with nightshades too so I had to give up potatoes.)

I can also eat some ice creams - the ones that are not sweetened with corn syrup. And let me tell you, I eat a LOT of ice cream! Now that I have gotten my weight to where I want it to be I am STILL losing, so I started eating MORE ice cream just to try to maintain my weight. I'd be willing to bet that if you give up the gluten-free processed foods, you too will lose weight.

You might also have other intolerances. Try giving up corn (and soy)for a while and see if your migraines etc. go away.

[beachbirdie]

I'm sure this topic has been addressed before, but i could not figure out how/where to find it.

I was diagnosed with Celiac about a year ago. Completely asymptomatic. If you forced me to name a symptom, I'd say I was a bit gassy...but not to the point that i felt it was a problem. Favorite (most consumed) foods were pizza, pasta, cookies etc... Diagnosed due to some "routine" bloodwork related to my hypothyroidism. Have been 20-25 lbs OVERweight my entire adult life. Could not believe the diagnosis, but bloodwork numbers were "off the chart" and endocscopy confirmed severe damage to small intestine. So.... I begin gluten-free diet July 2011. My GI had mentioned that "I might feel better in ways that I didn't know I felt bad" . Well, sadly, he was wrong... Both BEFORE and AFTER gluten-free diet I have fatigue, migraines, joint pain, mild depression, overweight etc... None of these things are debilitating, but they each come-and-go enough and have not lessened since going gluten-free. At the very least I had hoped I'd LOSE a few pounds, but no...i have in fact gained about 5 lbs since going gluten-free 11 months ago. I have been extremely vigilant with my diet, never intentionally consuming gluten. problem is that if i do consume any gluten (via cross contamination) I have no way of knowing. I do not become ill, no GI symptoms etc...

So... my question is...anybody else out there like me? It's so frustrating following this strict diet when i have/had no symptoms. Most annoying is the feeling that I'm so alone b/c I seem to be that "one" Celiac who does not exhibit symptoms. Family has been supportive, but deep down i don't think they "get it". There are times when i question my diagnosis, but my GI is the head of local celiac group in my area (ie- well respected, well informed etc...).

Any advice for the lonely asymptomatic celiac?

Two things come to mind.

First, if they are basing their judgment of thyroid function on TSH alone, they are not doing you any favors. Do you get copies of your blood work results? That is an important place to start. Doctors will tell you that you are "normal" and you might not be in a place that is normal for YOU. Most thyroid patients who are under treatment with thyroid hormone, don't feel well with a TSH above 1.5, many feel better with it much lower. Make sure they are measuring your levels of free thyroid hormone, Free T3 and Free T4. TSH is NOT a thyroid hormone, and its greatest value is in the initial screening for thyroid problems. Once you are on thyroid hormone, you artificially influence your TSH and your real hormone levels could still be too low for you.

Next, as bartfull asked, are you using gluten free baked goods to substitute for what you've given up from the gluten world? Gluten free baked stuff is much denser in calories than the gluten-filled articles. Also, you feed the insulin-resistance monster with too much starch. If you eat a lot of pizza, cookies, and pasta made with rice flour, you might be affecting your blood sugar/insulin system. Elevated glucose also feeds the inflammation that comes with being autoimmune. All that will make it VERY difficult to lose weight.

I speak as one who also has few symptoms from gluten, has Hashimoto's Thyroiditis, and struggles mightily against my metabolism.

Lots of fresh whole foods...meats, vegetables, fruits.

[klosmo]

Two things come to mind.

First, if they are basing their judgment of thyroid function on TSH alone, they are not doing you any favors. Do you get copies of your blood work results? That is an important place to start. Doctors will tell you that you are "normal" and you might not be in a place that is normal for YOU. Most thyroid patients who are under treatment with thyroid hormone, don't feel well with a TSH above 1.5, many feel better with it much lower. Make sure they are measuring your levels of free thyroid hormone, Free T3 and Free T4. TSH is NOT a thyroid hormone, and its greatest value is in the initial screening for thyroid problems. Once you are on thyroid hormone, you artificially influence your TSH and your real hormone levels could still be too low for you.

Next, as bartfull asked, are you using gluten free baked goods to substitute for what you've given up from the gluten world? Gluten free baked stuff is much denser in calories than the gluten-filled articles. Also, you feed the insulin-resistance monster with too much starch. If you eat a lot of pizza, cookies, and pasta made with rice flour, you might be affecting your blood sugar/insulin system. Elevated glucose also feeds the inflammation that comes with being autoimmune. All that will make it VERY difficult to lose weight.

I speak as one who also has few symptoms from gluten, has Hashimoto's Thyroiditis, and struggles mightily against my metabolism.

Lots of fresh whole foods...meats, vegetables, fruits.

Thanks for the input Beachbirdie... I do get copies of my Thyroid bloodwork, and next time i get it done I'll examine the free T3/T4 closely. Like you, I also have Hashimoto's. I do consume "some" gluten-free cookies and pizza, but not excessively. I realized right away that they have more calories than their Gluten-ful counterparts. For pasta I have found only one that I like (Scharr's corn pasta) and i have that maybe once a week. I am due for an appointment with the endocrinologist... I guess i'll ask for a very thorough blood screening (T3 /T4/ sugar)...anything you can think of that i should ask for specifically? I do eat fresh foods (meats, potatos, raw veggies, dairy, eggs) but i am not a huge fan of cooked vegetables (ok-- i don't eat any) and not a big fruit eater either. I know i should eat more fruits/veggies, i just dont like their taste/texture. At the end of the day, candy is my downfall. I know...not good! Thanks again for your comments. :-)

[1974girl]

I could have written this whole thing for my 11 year old. She has hashimotos and every 3 years, they test her for celiac out of caution. This time, it was positive and biopsy shows blunting. However, her antibodies are not getting better after 5 months of gluten free. I have read that it helps and I have read other studies that it does not help. So...she may be one that gluten free doesn't help. I hate that I have to keep such a strict diet for a child who has zero symptoms. But...my husband is type 1 diabetic and she shares those genes and supposidly gluten free may help that not happen. Who knows? I also don't want her to have fertility problems or increased chance at lymphoma. So I do it. I question the diagnosis all the time but I do it.

[klosmo]

I could have written this whole thing for my 11 year old. She has hashimotos and every 3 years, they test her for celiac out of caution. This time, it was positive and biopsy shows blunting. However, her antibodies are not getting better after 5 months of gluten free. I have read that it helps and I have read other studies that it does not help. So...she may be one that gluten free doesn't help. I hate that I have to keep such a strict diet for a child who has zero symptoms. But...my husband is type 1 diabetic and she shares those genes and supposidly gluten free may help that not happen. Who knows? I also don't want her to have fertility problems or increased chance at lymphoma. So I do it. I question the diagnosis all the time but I do it.

Well my heart goes out to your daughter. I felt sorry for myself being diagnosed (asymptomatic) at age 43.... but for kids it is so much tougher. Until you or a loved one are diagnosed with Celiac you don't realize/think about how just about everything at a party/get-together contains gluten. Always having to habe a "back-up plan" gets old quickly. You're a good mom to be looking out for her long term health despite all the inconvenience/cost. Hope she's okay.

[1974girl]

Thanks... she has done very well so far but has cried twice. Once, people brought Krispy Kreams and she couldn't have one. And other time, we were at Red Robin (gluten free buns!) and our friends' children ordered a dessert she couldn't have. She cried right there in the restaurant. It was tough. The support group leader told me her dad was diagnosed at 98. Hum...if I thought I could get her to 98 without major problems I'd let her eat gluten like a truck driver. But I have no guarantees and I can't risk what might happen. Good luck to you, too! How did your follow up blood tests go? I wonder what her's will show in July. I am doing the best I can but I can't tell if it is good enough.

[1desperateladysaved]

I get psoriasis flares, but no GI symptoms to speak of. I am self-diagnosed so I am not really sure I have Celiac. I just know that when I eat gluten or corn, my psoriasis flares. I also get brain fog and insomnia.

I started the diet almost one year ago and I have lost over 40 pounds. I think it's because of the corn intolerance - it means I can't eat most processed gluten-free foods. gluten-free breads are FATTENING, more so than regular bread. I eat whole foods only - meat, eggs, rice, cheese, and some fruits and veggies. (Oh yeah, it seems I have a problem with nightshades too so I had to give up potatoes.)

I can also eat some ice creams - the ones that are not sweetened with corn syrup. And let me tell you, I eat a LOT of ice cream! Now that I have gotten my weight to where I want it to be I am STILL losing, so I started eating MORE ice cream just to try to maintain my weight. I'd be willing to bet that if you give up the gluten-free processed foods, you too will lose weight.

You might also have other intolerances. Try giving up corn (and soy)for a while and see if your migraines etc. go away.

Maybe you could try a grain free diet. When I did I started losing weight and feeling much better. I use almond meal, coconut flour and bean flour as a substitute.

[JADIII]

HI, I'm in the same situation. I was diagnosed with some routine blood tests and determined that I have Celiac. That being said, I literally have no GI issues and see no change in what I eat or don't eat. I've asked my doctor (GI) why should I adhere to this diet, etc and he says the long term effects could make you sick, give you an increased chance of cancer, mental illness, etc. I got a physical last year and my doctor said, if you're not having any pain, why change? That being said, I'm really at a cross road as to what to do. WHen I eat now I try to east gluten free but I travel for work and its close to impossible to do this 100% of the time. I'm just at the point where I'm saying "OK, I have Celiac and I don't have any side effects" so do I completely change my life for the chance that I will lower a few percentage points the risk of a disease in the future?

ALso, does anyone know if Probiotics are helpful for Celiac or if they'll make your gut "better".

Thanks

[1974girl]

Have you thought of doing a biopsy? I am not sure personally about the blood tests alone BECAUSE my daughter had a ttg of 164 and then 2 weeks later at another place it was 7. We had not changed diet at that point. The second doctor said she would have swore they had the wrong blood if her thryoid test wasn't on there. No one had an explantion. They were different labs but should not have been that far off. But...you'll have to do a gluten challenge before the biopsy. Good luck!