Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Silent Celiac
0

15 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

0

Share this post


Link to post
Share on other sites

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...

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

That is a very good neurologist!!!

0

Share this post


Link to post
Share on other sites

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. :angry: 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!

0

Share this post


Link to post
Share on other sites

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?

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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? :-)

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,641
    • Total Posts
      918,437
  • Topics

  • Posts

    • Anxiously waiting
      Thanks heaps. I will def be going private if the wait is too long. I have done a little research but i thought a gluten intolerance and coeliac was the same lol. My iron levels are just below average apparently but she said not bad enough for me to be this tired.
    • Celiac.com: Traveling While Gluten-Free? What To Consider From Someone with Celiac Disease
      There are a few definite truths about living gluten-free: You miss bagels every day. Curious friends regularly badger you with questions like “is ... View the full article
    • How effective is HD skin biopsy after being gluten free for a year
      DH is celiac disease that appears on the skin (gluten triggered).  It does not appear when you are consuming dairy, which sounds like a separate issue for you.   A DH biopsy requires active lesions (new/fresh) from consuming gluten.  So, if you want to be tested via a skin biopsy you must go back on gluten.  Finding a dermatologist who knows exactly how to biopsy for DH is often difficult.  Be sure your Derm is knowledable and has biopsied for DH before. Why no endoscopy for now?  I bet your GI  knows that your insurance will deny the endoscopy.  After all, you tested negative to the blood panel.  Your GI should not even ordered the blood panel knowing that you had been gluten free for months.  You have to be consuming gluten daily for 8 to 12 weeks for the blood test to be accurate.   Did you ever test positive?  Why did your primary diagnose you?  Having the gene just means you can develop celiac disease.  Some 30% of the population carries the genes.  The gene test should only be used to help rule out celiac disease.  
    • How effective is HD skin biopsy after being gluten free for a year
      No one can say exactly how long you might be able to get a positive dh biopsy after having been gluten free as long as you have been. The Chicago Celiac Disease Center says this: http://www.cureceliacdisease.org/faq/im-scheduled-to-have-a-skin-biopsy-to-screen-for-celiac-disease-should-i-maintain-a-gluten-containing-diet-similar-to-those-who-are-being-screened-via-blood-or-intestinal-biopsy/ http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ You said you had a flare of the plaque psoriasis -- that is NOT dh so why do you think the dh biopsy will show positive? Testing positive for the celiac genes does not mean you have celiac disease. 30+% of the population have the celiac genes but only very, very small fraction of those people do or will present with celiac disease. The gene tests are only used to rule OUT celiac NOT to diagnose it. Frankly, I can understand why your GI does not put any stock in your Primary doc's thinking you have celiac disease. A positive celiac gene and the boils in your armpits which the GI never saw and were never biopsied for dh but they resolved on a gluten free diet and so did your plaque psoriasis. That's all the GI has to go on. I don't know why you are pushing an endoscopy. If you've been eating strictly gluten free then an endoscopic biopsy for celiac will be negative.  Your PCP should have done a celiac blood panel on you back when you were still eating gluten rather than dx you based on the celiac gene you tested positive for.
    • How effective is HD skin biopsy after being gluten free for a year
      I've been gluten free for a year now and my gastro wants to wait for the endocopy until I'm eligible for the colonoscopy when I turn 50 later this year. I don't think she believes I have celiac, even though I tested positive for one of the genes associated with celiac and my primary has diagnosed me as having celiac. The gluten sensitivity blood tests came back negative, of course, since I was gluten free for 9 months at that time. Why is she waiting? At any rate, My digestive system has improved greatly, but when I reintroduced non fat Greek yogurt in my diet, the plaques psoriasis returned on my elbows. My primary believes it is dermatitis herpetiformis (as well as I, since before going gluten free, I used to get boils in my armpits) and I'm scheduled for a skin biopsy in 3 weeks. However, I eliminated dairy from my diet 4 weeks ago and the plaques psoriasis is healing like it did when I eliminated gluten from my diet a year ago. If the scar is reduced to eczema, does that mean there still are IGA deposits in my skin? I don't want to resume dairy since I experienced a cross reaction to the casein in cheese and found lactose was on that same list. So my question is, how long do the granular IGA deposits remain in the skin in order to have a valid skin biopsy test performed for dermatitis herpetiformis? Since it takes 1-2 years for dermatitis herpetiformis to heal on a gluten free diet and I just had a recent flare up, can I continue on my dairy free diet or should I resume eating non fat Greek yogurt for the next 3 weeks just for this skin biopsy?
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,735
    • Most Online
      1,763

    Newest Member
    Hayley86
    Joined