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

Creeping Celiac

ERR

By ERR
in Coping with Celiac Disease

Recommended Posts

ERR Apprentice
ERR
Posted

I got diagnosed three years ago. I went on a raw foods kick and felt great. But over the past few years I have gotten less and less conservative. I would eat a salad dressing without checking. Maybe eat a chicken breast with an unidentified marinade. Now I never got the GI symptoms of Celiac. But slowly, inch by inch, I regressed. Recently I realized I was tired all the time. I was going to bed at 9 pm again. I was seeing the world through an angry haze. And I realized that I had slipped all the way back to where I was before my diagnosis.

Has anyone else had a similar experience? I am wondering about the experiences of others who do not get the stomach signs of glutening. I am realizing how insidious this disease can be when its symptoms are not clear.

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

I suppose it is harder to follow a celiac diet when you have no overt evidence of harm when you stray. Nonetheless, you will be harming your body and risking the same consequences (minus the GI symptoms) as the rest of us have. You really must be strict with the diet - I think you know this - it will just take a little more willpower than for those who know immediately they have been glutened. In fact, it is even more important for you to check the ingredients, as you have found out, because no buzzer will sound or warning lights go off if you consume gluten. I know you didn't want and probably don't need a lecture :P but consider it just a little reinforcement :D

ERR Apprentice
ERR
Posted
  • Author

No I probably need the lecture. For me, the question is, "just how sensitive am I?" I've been telling people for the past few years that I was one of the lucky ones who just has to avoid bread, or flour, but cross contamination is no big deal. I'm re-thinking that now. Vigilance.

RacerX35 Rookie
RacerX35
Posted

Hello,

I'm new here and not celiac, just gluten sensitive.I've been going gluten free for about a year now and unfortunately find out the hard way if I have strayed or accidently eaten something with gluten in it. I have siezures usually within about 1.5 to 2 hours after. Not good if I'm driving. I do always read labels and warnings. My wife helps out by making all our pastas and the sort gluten free. This last few days I was out of town on business and she was telling me the joy of her and our kids eating all gluten. I believe that we all get more senistive over time. Of course I've omly been gluten free for almost a year now. It used to be that I could eat the cheese off the pizza and not notice anything. Now I tried to eat a pepperoni off the top of the cheese one night and was having siezures the first part of the following day. Could've been having them in my sleep too, since I had that one pepperoni just before going to sleep. When I go get burgers, I go to In-N-Out burgers. The only thing they fry in french fries made from the whole potato and "protien" style burger (Lettuce wrap). Vigilance is best I suppose. :)

Later,

Ray

GFinDC Veteran
GFinDC
Posted

You could get your antibodie levels rechecked to see if they are elevated. IF they are you will know you have a problem. Symptoms or not. Kind of an expensive way to monitor your diet tho.

TexasJenn Newbie
TexasJenn
Posted

No I probably need the lecture. For me, the question is, "just how sensitive am I?" I've been telling people for the past few years that I was one of the lucky ones who just has to avoid bread, or flour, but cross contamination is no big deal. I'm re-thinking that now. Vigilance.

My mother could have written this (as well as your original post), as I've heard her make these exact comments many times. She is one of the "lucky ones" (as am I) who don't have the GI symptoms so she thinks she is less sensitive and doesn't have to be as careful about cross contamination. After being diagnosed four years ago, she has reverted back to being tired and sore all of the time. After seeing her be less viligent, it would be easy for me to follow in her footsteps (I was just diagnosed with celiac last month), but I don't want to make light of it only to feel terrible again like she is. I am going to take her with me to the intro GIG meeting so I can learn more and she can have the refresher. The one thing that I keep reminding myself is that even if I don't FEEL the effects of being glutened, it is still wreaking havoc on my body, and increasing my risks for other certain autoimmune diseases, cancers, etc, and I not only want to feel good, but I want to truly be healthy, too. I have a husband and kids that I want to be around for for a long, long time! :)

I hope you start feeling better again soon!

Jenn

domesticactivist Collaborator
domesticactivist
Posted

There is no such thing as "less sensitive" with celiac. If your body is making antibodies against itself, there is damage being done whether you perceive it at the time or not!

It's easy to let things slide. It's good you've realized that there are consequences, even if they are more subtle.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,977
    • Most Online (within 30 mins)
      7,748
    P Jackman
    Newest Member
    P Jackman
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Soleihey
      Long Story Of Neurological Symptoms And Lowish Ferritin- Could It Be Celiacs?

      By Soleihey · Posted

      How are you now?
    • Scott Adams
      Conflicting results

      By Scott Adams · Posted

      It's possible he's in the early stages of celiac disease, and it has been caught before villi damage. The blood test results so far do indicate possible celiac disease, as well as his strong family history of celiac disease. If his symptoms get better on a gluten-free diet this would be another strong indication. Personally I think it's definitely better to proceed on the safe side and go gluten-free, rather than to risk severe villi damage and all that comes with it.
    • Dora77
      Permanent Floating & Undigested Stools for a Year

      By Dora77 · Posted

      For some context: I have type 1 diabetes (T1D) (since 11 years) and celiac disease(since 4 years) For about a year now, I’ve been experiencing permanent floating and undigested stools. I’ve had a pancreas elastase test done. The first result was extremely low at 44, but a second test came back at 236. My doctor said that since one result is normal, it rules out pancreatic insufficiency because, according to them, elastase levels would always stay low if that were the issue. However, could the 236 have been a false result? My doctor also thinks I don’t have pancreatic insufficiency because I’m able to gain weight. I also get hgh injections as my bone age is younger than my real age, this also contributes to weight gain, so I dont know if weight gain can rule out malabsorption. But maybe if I had real malabsorption I wouldnt gain any weight even with hgh? For celiac, I’m on a gluten-free diet, but there might b small cross-contamination from things like pepper labeled as “may contain gluten.” or sausages which dont have gluten ingredient but say may contain. My doctor said that small amounts like this wouldn’t harm me and even mentioned that an occasional small exposure to gluten may not do much damage (which seems questionable since I thought even tiny amounts could be harmful). She also said that when Im older (Im m17) I could try eating small amounts of gluten and do antibody blood tests to see if I can tolerate small amounts or not. For reference, I’m asymptomatic when it comes to celiac, so I have no idea if I’ve been “glutened” or not. My first concerning celiac blood test was semi high IgA, then 3 months later we did a check up and my IgA was high so it was confirmed celiac. Since than I’ve had celiac antibody tests done yearly to see how my diet is going, and they’ve been negative, but I’ve heard those aren’t always reliable. I’ve never had a follow-up endoscopy to confirm healing. I also always kept eating „may contain gluten“ food. (I live in Germany so I dont know if „may contain gluten“ is as risky as in the usa but I suppose both are as risky) These stool issues started around the same time I was doing excessive heavy lifting at the gym. Could stress or lifting have triggered this, or is that less likely since the symptoms persist even after I stopped lifting? Occasionally, I’ll feel very mild stomach discomfort, but it’s rare and not severe. My doctor (also a dietist) said floating, undigested stools could still be “normal,” but that doesn’t seem realistic to me. Could this be impacting my vitamin or protein absorption? I also did a fructose intolerance breath test and had a high baseline of 20 ppm, but it never increased—only decreased over time. I fasted for 12 hours and didn’t eat fructose beforehand, but my stomach didn’t feel completely empty during the test. Could this mean the test was inaccurate? For lactose intolerance, I did the breath test but only fasted 10 hours and had eaten lactose prior because I wasn’t aware of the proper diet restrictions. My results were: 14, 12, 15, 25, 35, 40, 40 ppm—which would be considered positive. But given that I didn’t fast long enough or follow the right diet, could this result be unreliable? Has anyone else dealt with similar symptoms? What ended up being the cause for you? And sorry for the long text!
    • TerryinCO
      Status Update...

      By TerryinCO · Posted

      The Docs' and NP haven't committed to Celiac determination yet but say go gluten-free diet because...  And I have with improved physical results - feeling better; overall functions better, and more energy.  Still 10 pounds down in weight but I still have BMI of ~23.  It's been just over a month now gluten-free diet.  I'm fortunate I get along with diary/milk well and most other foods. I wanted ask about this site's sponsor, gliadin X.  If this is legit, seems like a good product to keep on hand. Though it says it's only a safety for incidental gluten contact - not a substitue for gluten-free diet. What's your input on this? This may be sensitive subject since they're a sponsor. I've used resources here and other sites for information, gluten-free food/product lists. So thank you for all that support. That's it for now - Stay warm...  -2F this morning in Colorado!
    • cristiana
      Increasing symptoms after going gluten free

      By cristiana · Posted

      I did suffer with gastric symptoms before diagnosis, but got all sorts of weird and wacky symptoms after going gluten free.   Things got much better once my antibodies fell to normal levels, but it took years (please don't panic, many people's go to normal levels relatively quickly when following a gluten-free diet). Causes of the symptoms you mention that I also experienced were iron supplements, a temporary dairy intolerance (this is common in coeliacs and should pass when your gut heals properly), and eating oats, as mentioned above.  Other symptoms I got were musculoskeletal pain after diagnosis, but again, once my coeliac blood tests were normal, I had no more pain. I did notice patterns emerging in foods that I reacted to and learned to steer clear of them, then gradually reintroduced them when my gut healed, such as soya, pure oats and dairy products.    You might like to keep a food diary. Cristiana
×
×
  • Create New...