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Newly Dx - How Do I Tell If I've Been Glutened?


Christina.V

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Christina.V Apprentice

I was recently diagnosed thanks to a fluke test ran by my doctor. I have ZERO GI symptoms but definitely have the disease. I don't want to cheat, but I have to admit it's tough to maintain my willpower! I've read over the posts on why not to cheat and so far I'm still motivated to maintain gluten-free. Fortunately my community has many many grocery store options as well as gluten-free restaurants.  :)

 

I have battled acne my entire life, and magically my skin is glowing after just a week gluten-free, so that's pretty awesome. However, if I don't have GI issues how can I tell if I've screwed up? I've been keeping a detailed food diary and will be going over it with a nutritionist but am in need of a little bit more guidance from those of you with experience.

 

Thanks in advance


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mbrookes Community Regular

If you don't have overt symptoms, I don't know how you will know if you get glutened. My advice would be just stay super alert to anything that goes in your mouth. Perhaps your skin's condition could be a signal.

 

I get very nauseated and have diahrrea, so there is no doubt. However, the reaction may not come for a couple of days, so I, like you, never know for certain what the culprit was. Constant vigilance is my only weapon. Sounds like you are doing a good job. Just keep it up.  

LauraTX Rising Star

My diagnosis was similar in circumstance to yours.  My doctor was checking out something else and discovered the Celiac by accident... my small intestinal damage was minimal and she said I am lucky it got caught early.  I don't get GI symptoms from being glutened, either.  Every once in a while I will get questionable GI stuff but I haven't been able to conclusively link it to gluten consumption.  Some people will start to get glutening symptoms long after being away from gluten, but the few times I have verifiably mistakenly eaten something contaminated, I could not tell.  People like us are sometimes called "Silent Celiacs" in the community.   I did have anemia and unexplained peripheral neuropathy that have gone away after being on a gluten-free diet, so I think those were my symptoms after all.

 

Like you have said, the plus side is no sidelining and bathroom trips, but the huge down side is the worry that you could be glutening yourself and not know it.  It makes me go completely nuts about making double sure everything that goes in my mouth is gluten-free, and taking even better caution to prevent cross contamination.  I like to re-verify things as gluten-free each time I buy them if it isn't on the label, and double check at restaurants even if I ordered a dish the previous time.  One thing that is important to do and becomes more important if you don't have outward symptoms is going back to your GI doctor for regular checkups and getting your vitamin levels and antibody levels checked.  If you have a major screw up it is likely to show up there.

 

Overall, I am very grateful my Celiac disease was found by accident early into the disease progression.  There are some nice people on the forum here that suffered through a whole lifetime of problems from being undiagnosed and had a very long healing time after going gluten-free.  Overall I think you are doing great, and as time passes, your anxiety and difficulties will even out to a new normal.  Welcome to the Silly Yak club :)

TGK112 Contributor

I was asymptomatic when diagnosed - I don't count osteoporosis as a noticable symptom. I had a follow up blood test and endoscopy six months after diagnosis - with good results. I then had only a follow up blood test a year following that - also showed normal antibody ranges - and it also showed there was no inflammation going on in the body. I am on schedule to have yearly blood tests. I am so happy to do so - since it's the only way for me to know if I am keeping the diet. 

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    • Aretaeus Cappadocia
      I'm not saying this is what you have, but your description reminds me of Morgellons, which are not very well understood. Here is a review from a reputable source. If it seems similar to your experience, you could raise this question with your Dr.  https://my.clevelandclinic.org/health/diseases/morgellons-disease
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      Hi Trent, no dairy. Other than good quality butter. I have been lactose free for years. No corn, sugar, even seasonings and spices. I don't eat out. I cook my own food.
    • trents
      @nancydrewandtheceliacclue, are you consuming dairy? Not sure if dairy is part of the carnivore diet.
    • nancydrewandtheceliacclue
      Hello Russ! Thank you so much for your reply.  I have not had an antibody test done, ever, relating to gluten. Last year I had an allergy test done via blood draw (as my insurance wouldn't cover the skin test) but this was for pollen and grasses, not food. Even on the blood test I had extremely high levels of reactions to each allergen. Could this seasonal allergy inflammation be contributing to my celiac inflammation? I am so careful, there is no way I could ingest gluten. For example, couple of months ago I tried a cough drop that says it was gluten free. I checked ingredients, it seemed fine. But just taking one of those caused me to have nausea, vomiting, and the same extreme abdominal pain. Have you ever heard of anyone else having symptoms like mine after being diagnosed celiac and strictly gluten free? The last episode I had like this was yesterday, after I ate a certified gluten-free coconut macaroon with a little chocolate on it. I have eaten coconut and chocolate before with no issue,  so I didn't see how I could all of a sudden have such a strong response. 
    • Russ H
      The sensitivity of people with coeliac disease varies greatly between individuals. The generally accepted as safe limit for most people is 10 milligrams per day. This equates to a piece of bread the size of a small pea. Some people report that they are more sensitive than this, but others can very occasionally eat a normal gluten containing meal without reacting. I don't think that touching or throwing bread around would lead to you ingesting enough to cause a reaction. There are case reports of farmers with coeliac disease reacting to the dust from gluten-containing animal feed but they were inhaling large amounts of dust over a long period of time in barns. Perhaps you episodes are caused by a reaction to something other than gluten? Have you had your antibody levels checked to see whether you are still being exposed to gluten?
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