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Does Celiac Come With Any Symptoms That gluten-free Won't Resolve?


AzizaRivers

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AzizaRivers Apprentice

This is mostly me being curious. When I started getting sick and no one knew what was wrong, I became highly in tune with everything about my body that didn't seem normal. I'm the same way now that I'm gluten-free and healing; I'm very aware of different parts of my body and what they're doing.

I'm not sick anymore, except when I make a mistake, and I few myself getting stronger again. But I still have a few funny little things that I have started to wonder about. There's always the possibility that my body is still taking awhile to fully heal from nutrient deprivation and everything, I know that. But what I'm wondering is, have any of you found that Celiac has effects on your body that a completely gluten-free diet does not resolve? Not things caused by unknown CC or tiny amounts of gluten, not lasting effects of damage...just like, things that maybe have absolutely nothing to do with gluten at all-they just come with the genetic abnormality, or whatever.

Thoughts? Experiences?


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cassP Contributor

not sure what u mean by genetic abnormality- but whilst reading your post, i cant stop thinking about my own issues with additional food intolerances.. is that what you're maybe thinking of???

ive had a LOT of ANNOYING & sometimes Dehabilitating Abdominal pain & gas lately-> and i know i have not been glutened- because i usually get itchy where ive had DH in the past. this pain has been more Fructose/Fructan in nature. & perhaps Dairy & Coffee. oh, and soy. it's just so hard for me to take all those additional things out of my diet- its one thing to take out the gluten, but any more restrictions and i start feeling like "Whoa is me :( "

also, i think some of my pain is muscular spasms.

its very much annoying that i cant fix all my pain by removing gluten.

is this what you're talkin about???

also, have u had other testing done? vitamin deficiencies? thyroid? because i had many issues get better after going gluten free.... but it wasnt till they dx me with Hashimoto's and put me on meds, that i began to feel even better. i had no idea that my constipation & depression/anxiety and fatigue were mostly due to my thyroid!!!! i just assumed that was all Celiac.

alrighty, good luck

WheatChef Apprentice

Celiac disease in general puts you at a greater risk for bacterial imbalances in your intestine. This imbalance is pretty much one of the hallmarks of people with a gluten intolerance. Such imbalances can cause all sorts of additional digestive issues as well as increased risk to infections that will continue until specifically treated and addressed.

AzizaRivers Apprentice

^ Thanks. That's exactly along the lines of what I was talking about...things that just seem to happen regardless of whether we are 100% glutened or 100% gluten-free. I have a lot of issues with candida that just keeps coming back and I know overgrowth is often caused by a lack of the good bacteria that keep the yeast in check.

rosetapper23 Explorer

I didn't know I had celiac until I was 47, and I'd had "issues" all my life that worsened when I was 11. Even though I went completely gluten free at 47, there are a number of symptoms that have never been relieved: numbness in my toes, night blindness, and difficulty clotting. Since it's been seven years since I went gluten free and these symptoms still linger, I assume that I will have them for the rest of my life. However, the migraines, arthritis, anemia, decalcified teeth, digestive problems, and numerous other ailments did resolve over time. As for the digestive problems, it took 18 months of gluten-free eating to get past it. Even so, sometimes something triggers a temporary regression. I think we're always a work in progress.

Lori2 Contributor

I have been wondering about some of these things too. Vitiligo and neuropathy in my feet. But I see in Rosetapper's posting that the numbness of the toes has not improved in seven years, so I guess I should just accept them as things I'm stuck with.

mushroom Proficient

My arthritis and psoriasis have been unaffected by the diet.


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T.H. Community Regular

I have read that some of the neurological damage from gluten can definitely be permanent - crud, huh? But I was wondering how gluten free you have made your diet? Quite a few people I've spoken to with neurological symptoms are more sensitive to gluten than average (need less than 10ppm gluten, as an example), and many cannot have most gluten-free products without still suffering from the effects of gluten.

I get sick (with neurological problems, too, yes) from crazy small amounts of gluten. I've had to hunt down safe oils, salt, produce (due to gluten in wax coatings and pesticides, for example), etc....

If you haven't dropped processed foods like crackers and such, it might be at least worth your while to give it a shot, just to see. Won't hurt much but give you a REALLY healthy diet for a while as you check, ya know?

cassP Contributor

^ Thanks. That's exactly along the lines of what I was talking about...things that just seem to happen regardless of whether we are 100% glutened or 100% gluten-free. I have a lot of issues with candida that just keeps coming back and I know overgrowth is often caused by a lack of the good bacteria that keep the yeast in check.

i read somewhere weeks ago- that Candida had a similar structure to gluten and that it could trigger Celiac/ or the reaction in your small intestine that damages your villi... so MAYBE when any of us have Candida- maybe it awakens the antibodies & pain??

Skylark Collaborator

It takes much longer to really recover from celiac than most folks think, especially since it takes a long time to master the diet. After five and a half years gluten-free, the only thing that has not resolved is my Hashimoto's thyroid disease. It took me over two years to get back to more normal levels of energy and shed the lingering depression and mood issues.

cap6 Enthusiast

Thank you AzizaRivers for this question and all of the responses as I have wondered this myself. I am 10 months into this and while some things are 100% better some are not and the C is definitely worse. I'll just keep looking forward!

shezatrip Apprentice

I'm new here and still not officially diagnosed- However, when i tried to

omit gluten, i realized that there were a lot of gluten free processed foods.

So, if someone is not eating 80% whole foods (fruits, veggies, nuts, etc...)

and replaces with Gluten free processed..they can still have problems with nutrition. It is still processed either way and lacking nutrition if not balanced correctly with other foods.

Just my take on it ;-)

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    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
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    • Scott Adams
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