Silent Celiac

[txgal748]

I went to my PCP in April because I was having some diziness every day. She ran blood work which showed I have low vitamin D. She sent me to a neurologist. The nuerologist ran $2,000 worth of blood work which came back low B12 and an IGA of 101. She told me I have pernicious anemia and Celiac disease. I quit ingesting gluten May 21st. I am sure I have had some cross contamination and I have consumed some gluten.

My question is to those who have silent celiac. How do you know if you have been glutened?

The only symptoms I can think I have ever had that may have shown some sign of Celiac disease was eczema when I was 9 through 18, diziness, and heart fluttering.

[RonSchon]

Hi Tex,

I'm newer than you to knowing - I just found out on July 2nd - and I'm super vigilant as I was in super bad shape - I had missed a whole week of work from just not being able to get out of bed, and constipation that hurt with every waking moment.

Flash forward to July 9th - felt great, best in years - by the eve of the 10th I was heading downhill, and on the 11th and 12th the constipation was full force and I could just barely go to work. My foggy head returned and my excellent vision again lost its sharp edge.

This morning I woke up, was able to have a bowel movement - floaties (I know, TMI), but also my mind cleared up and I had some energy and my vision sharpened back up.

I work at a computer M-F, and to fit the applications on my monitors I use a high resolution video driver setting which makes for very small print - I know quickly how well I'm able to see.

[LauraB0927]

Since I am a silent Celiac as well, I understand your concern. I've been glutened on accident a handful of times and the longer that I'm gluten-free, the more sensitive I am when I actually get exposed. Along with stomach pains, nausea, and D, my joints also hurt and my eczema also flares up a bit. Maybe you'll also become more sensitive the longer you are gluten free and you'll be able to tell. I think about this quite often and I wonder what's worse? Having horrible pains and being sick for a week? Or never knowing if you've eaten something that you cant tolerate and continue to be exposed to it...

[GlutenFree-MLDub]

I am able to tell I've gotten glutened because I start out by getting dizzy. Then I get really depressed and fatigued. I also tend to get a little weepy, but that may just be because I feel horrible when it happens and start pouting that I'm going to be sick for the rest of time. However my doc said weepiness goes hand in hand with the gluten. I sometimes feel bloated when it happens, but my celiac has not been as tummy related in years... mine shifted over to silence later and was primarily neuro symptoms. If you have no tummy symptoms, try to be aware of other things like energy, etc. You may start to see things that you always though were just part of who you are. My symptoms are worse for the first few hours after and taper over the next few days provided I don't have anymore accidents. How did they suspect the Celiac? Look at that and go from there would be my suggestion... from my personal experience.

[RonSchon]

It is ironic, because I had the very same thought - since before when I was very ill I was ingesting so much gluten without know it was the cause, now gluten free how would I know if I had a single product with a trace ingredient that is gluten related. The answer for me was loud and clear last week. I might as well had a deep dish pizza and a piece of cake.

[txgal748]

Thank You for your responses. I have read people become more sensitive the longer they are gluten free. The day I found out I have celiac disease I also found out I have low B12. The neurologist gave me a B12 shot. I felt a little strange that evening but the next morning I felt fantastic, the dull headache I have had for months was gone as well as the diziness. Unfortunately I was also itchy all over. It turned out I had a reaction to a carrier in the shot.

So, I know I felt great because of the shot and I still feel pretty good. I have had a couple of dull headaches which I think may be an indication of contamination. The most difficult part of being gluten free is eating out which I do several times a week during lunch. I find it difficult because I do not know about cross contamination. Is a little cross contamination okay or should there be absolutely no contamination. In which case salads would be best.

[eatmeat4good]

That is a very good neurologist!!!

[love2travel]

I was diagnosed 16 months ago and have been strictly gluten free for 15 months. I have absolutely no clue whether I have been glutened or not except for one instance that I know of and that was in the beginning. Though I feel no different, my regularly negative numbers are proof that I am doing well and my body is absorbing better than before (though I did not feel ill from malabsorption). As I have read that the longer a person is gluten free the easier it becomes to tell whether you have been glutened there is no way I will ever take a chance to find out. What worries me more than getting ill is the internal damage. It definitely concerns me every time I have a slight GI upset or whatever - I wonder whether it was gluten or something else. Having no idea can be scary!

[dcns65]

Should a silent Celiac be tested every 6 months? My daughter had no symptoms and is a teenager. She tries to be careful but will be heading off to college in a year. Would it be best to get tested every six months especially the first year?

[love2travel]

My doctor tests me every six months. I do not know whether it is necessary but it gives me presence of mind. My doctor also monitors my vitamin levels at the same time. It may be a good idea for your daughter to be monitored as well.

[1974girl]

My dd goes tomorrow for her 6 month check and she is silent. I don't know if that is the norm but we were told to.

[Mom-of-Two]

I actually am seen every 3 months right now, but I think once my numbers are normal, it will be less frequent. My daughter is what they call latent, she has positive blood but normal biopsy. She has just started the diet and her antibodies will be checked at 6 months.

[T.H.]

I know for myself, there are many symptoms I kind of think of as 'side' symptoms that aren't the initial reaction. I wonder if they might be present even in officially 'silent' celiacs? I don't honestly know.

Some of the ones that I've experienced that I have seen at least a few other celiacs mention are:

-- the urge to pee, all the time. I was tested for Diabetes, kidney and bladder infections, all sorts of stuff. Now I know that this only shows up when I get a low level of gluten. For a couple days, I feel like I have to pee constantly, even if there's hardly anything in my bladder.

-- Water going right through me. This IS actually peeing all the time, LOL. I get extremely thirsty and pee constantly. Also been tested for many things for this, and it only seems to correlate to getting low levels of gluten.

-- Weird sensory changes. Lights are painfully bright at night. Sound is a bit too loud, and tinny or screechy sounds are painful. Taste is more bitter than usual. I've experienced the exact same lighting, same volume, even the same foods when I don't have gluten, and again, this change correlates with gluten. After mentioning this to a few friends with Celiac kids, one of them realized that the last time her daughter was glutened, she'd complained for a few days about how bitter all the food was. Everybody kept track for a few weeks and a few of parents noticed that their kids complained more about sound and taste after getting glutened. That could just be due to discomfort making people less tolerant of annoyance, of course, but even that can be an indication in its own way.

-- Another issue for me is an emotional one, especially anger or anxiety. A big clue for me is when I wake up feeling angry or anxious. There's no reason for it, and no focus, I just wake up and everything is irritating or everything feels overwhelming. It usually lasts for a day or two and then disappears.

Obviously, these aren't exactly easy things to correlate to gluten, nor solely specific to gluten, not by a long shot. And without anything else to go by except a test every 6 months or so, they're also very hard to verify as a gluten reaction. It all seems very individual, IMO.

But if you don't have any obvious symptoms, you don't have anything to lose by playing detective. And if you do notice any times when your body or mind are, well, acting a bit out of whack or weird and it doesn't make sense, that might be worth investigating, you know? :-)

[BethM55]

I know for myself, there are many symptoms I kind of think of as 'side' symptoms that aren't the initial reaction. I wonder if they might be present even in officially 'silent' celiacs? I don't honestly know.

Some of the ones that I've experienced that I have seen at least a few other celiacs mention are:

-- the urge to pee, all the time. I was tested for Diabetes, kidney and bladder infections, all sorts of stuff. Now I know that this only shows up when I get a low level of gluten. For a couple days, I feel like I have to pee constantly, even if there's hardly anything in my bladder.

-- Water going right through me. This IS actually peeing all the time, LOL. I get extremely thirsty and pee constantly. Also been tested for many things for this, and it only seems to correlate to getting low levels of gluten.

-- Weird sensory changes. Lights are painfully bright at night. Sound is a bit too loud, and tinny or screechy sounds are painful. Taste is more bitter than usual. I've experienced the exact same lighting, same volume, even the same foods when I don't have gluten, and again, this change correlates with gluten. After mentioning this to a few friends with Celiac kids, one of them realized that the last time her daughter was glutened, she'd complained for a few days about how bitter all the food was. Everybody kept track for a few weeks and a few of parents noticed that their kids complained more about sound and taste after getting glutened. That could just be due to discomfort making people less tolerant of annoyance, of course, but even that can be an indication in its own way.

-- Another issue for me is an emotional one, especially anger or anxiety. A big clue for me is when I wake up feeling angry or anxious. There's no reason for it, and no focus, I just wake up and everything is irritating or everything feels overwhelming. It usually lasts for a day or two and then disappears.

Obviously, these aren't exactly easy things to correlate to gluten, nor solely specific to gluten, not by a long shot. And without anything else to go by except a test every 6 months or so, they're also very hard to verify as a gluten reaction. It all seems very individual, IMO.

But if you don't have any obvious symptoms, you don't have anything to lose by playing detective. And if you do notice any times when your body or mind are, well, acting a bit out of whack or weird and it doesn't make sense, that might be worth investigating, you know? :-)

I have irritable bladder issues, which I have connected with my fibromyalgia, but I wonder if it's more from gluten CC. (Although fibro and gluten intolerance are inextricably connected, IMHO!) We ate dinner out at BJ's Brewhouse on Sunday, and Monday I had awful brain fog, shaky hands, increased joint and muscle pain, and a very unhappy and irritated bladder, enough so I took Detrol on Monday and Tuesday. I really shouldn't have been at work on Monday. Tuesday was minimally better, today (Wednesday) is pretty good. I did not connect my symptoms to possible CC, but it makes sense.

Thank you for your insight and honesty in your post! You have given me something to think about.

[txgal748]

Thanks for all of the responses. I was just wondering when would be a good time to check my vitamin levels.