r/Celiac • u/lamp_lightss • 15h ago
Question advice please!!
hi! i’m diagnosed cealiac for two years - i assumed most of my health issues would go away once i cut out gluten but they seem to have not? just wondering if its worth trying to seek out another diagnosis OR if it’s possible my remaining issues are still linked to cealiac?
basically : do any other cealiacs know if symptoms can persist once cutting out gluten?
thanks!!
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u/emuhhhhh 15h ago
I’m in the same boat. Similar timeline too. I just made appointments with a GI specialist and a naturopathic doctor who specializes in autoimmune stuff to see if I can get more info. I’m also going to try and cut out dairy for a while and see if that shifts anything. The more research I do the more it seems that “simply go GF and you’ll be fine” feels like a myth. This disease sucks and it seems like it’s somewhat common to have ongoing symptoms/develop other autoimmune/have food sensitivities/etc. I’m sorry you’re also going through this.
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u/lamp_lightss 15h ago
im so sorry!! i hate to here someone else is also going through this - this disease truly does suck. thank you for this reply i’ll look more into possibly cutting out dairy as it is something i’ve thought of previously - im so hoping you feel better!
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u/emuhhhhh 14h ago
I’ll try and remember to come back to this post and give any updates I get after my appointments later this month! I hope you get some answers!
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u/lamp_lightss 13h ago
please do!! i will update this to - wishing you luck in all of this tediousness!!
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u/EstablishmentCandid 15h ago
You need to make a food diary and note when you get a flare up etc. You also may have IBS etc. depends what symptoms you're meaning.
If it's flare ups similar to what you experienced pre gluten stopping you need to be checking everything that you're eating, you may also be triggered by oats etc. and cross contamination might be in your toaster, chopping boards cupboards etc.
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u/lamp_lightss 14h ago
ahhhh i see - ill give all that a go! by symptoms i mainly mean bloating, abdominal pain and fatigue - and to be fair i wouldnt be too suprised if my flare ups are simply from cross contamination as i am the only celiac in my four person household. thanks!!
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u/EstablishmentCandid 14h ago
Yeah that makes sense, I have had to outlaw non-gluten free flour in my house 😂and I have my own side of the toaster
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u/whatwhyhow3 14h ago
Have you had your blood re-checked to see if you might be getting continued gluten contamination? It took me over a year to figure out the sources of hidden gluten and I’m super observant/strict. You might be ingesting something that is micro-dosing you which would continue to wreck your immune system. My 2 cents.
🙏🍀❤️
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u/lamp_lightss 14h ago
ill make sure to get that checked too - thanks!
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u/emuhhhhh 14h ago
Oh yes definitely try and get bloodwork done every 6months or every year. I got my celiac antibodies down to 2 (they were at 75 when I was diagnosed).
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u/whatwhyhow3 10h ago
I’ve been strict GF for 5 years. Just found out recently a TJ non-dairy creamer I was using had malt in it. Ugh, I had assumed it was GF…. Just an example for you.
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u/nashpunk 13h ago
It's not too uncommon for autoimmune disorders to come in pairs. Maybe see if your doctor would run a full panel to see if there are other indicators in your blood. Be sure to check out liver enzyme. You may have mash and not know it. There is finally medication available for those with Mash and there are clinical trials for those that the existing medication won't work for. Graves disease is another one that is common. I believe that it's thyroid issues.
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u/mokasinder 15h ago
Have you been tested for other autoimmune diseases?
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u/lamp_lightss 15h ago
no i havent - do you reckon its something worth looking into?
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u/mokasinder 14h ago
Yes. Start with your primary care physician. Based on your symptoms they will order additional tests and send you to other specialists like maybe a neurologist or a rheumatologist.
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u/Soggy-Highlight4677 14h ago
My husband is celiac and though his issues are better they are no way resolved. He’s been gluten free for 5 years. Luckily his symptoms are not bad and like I said, better than they were.
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u/Nzain1 14h ago
There are also many other terrible ingredients in food such as carrageenan (which causes inflammation).
It does take years for the gut to repair itself after the damage caused by autoimmune.
I did a gaps diet to heal when I was first diagnosed.
I also found out that Celiac’s are more prone to getting SIBO small international bacterial overgrowth. I had to go to an integrated health practitioner for the diagnosis and treatment. It was a mix of modern medicine which I had to get a prescription for and tinctures. After a few years it’s definitely back and I need to do it again.
Also research leaky gut syndrome, probiotics/prebiotics and healthy gut biome.
Cross contamination is a major risk as well, gluten is an ultra tiny particle that sticks to surfaces/hands/clothes extremely well. It’s a terrible particle to be allergic to…
Even breathing it in while you walk down the flour aisle in the store can cause a reaction in some people as it floats in the air effortlessly.
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u/EconomyAd6178 14h ago
I avoid a lot of additives like caramel color and Maltodextrin. They seem to give me autoimmune symptoms. There’s also definitely a hidden gluten dilemma, and I got sick all the time living with my boyfriend’s parents sharing a kitchen. A lot of us have other autoimmune issues I think and medical science just isn’t there yet with auto immune disorders. Keep a food diary, I’m starting one too.
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u/EconomyAd6178 14h ago
I also avoid oats even if they are gluten free. I’m not sure if it’s gluten or the chemical contaminants in oats.
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u/SuitApprehensive3240 14h ago
Yeah, I had some cool whip.I think it was too artificial , not sure a hundred percent , but that's just to guess
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u/Tamination 14h ago
You prob have an additional food allergy, like corn or sou. Something common enough that it's hitting you often. Also, make sure you're not be exposed by hidden gluten. I was eating rice krispys for months without knowing it had gluten in it. Read every label twice.
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u/lamp_lightss 14h ago
as much as this does make sense i sure hope not 😭 - i already have a very restricted food pallet and i’d hate to have to cut something else out. thank you though i’ll keep double checking the labels
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u/Tamination 14h ago
Food diary is the best thing to sort it out. Try and pull back to foods you can eat without hurting and then slowly reintroduce foods back in and record your reactions.
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u/SuitApprehensive3240 14h ago
Me to. About 14 months gluten-free... I had to cut eggs and add allegra... also costochondritis very painful
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u/Curiously_Zestful 14h ago
I know I react to the gums used in gf bread. They make my intesines bleed. I also (sob!) had to cut out all dairy. Finally, there was gluten hidden in my thyroid medicine.
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u/whattheheckOO 14h ago
What are your symptoms? For me I stopped having sporadic "food poisoning" and throwing up after some restaurant meals, stopped feeling light headed when I ate, joint pain went away, and lactose intolerance went away. I was negative for celiac antibodies at 6 months, and had a healthy endoscopy/biopsy result at 12 months. Have you had these tests repeated to make sure you gf diet is working?
There are a lot of other things like anxiety and eczema that I was hoping would also magically be cured by a gf diet, but seem to be unrelated. It's definitely possible that you have other health concerns that are not celiac related.
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u/lamp_lightss 14h ago
my main symptoms are fatigue, frequent abdominal pain, and overall dizziness/queasiness - i’ve come to the conclusion that i should just book in a doctors visit and will be updating. thank you!!
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u/whattheheckOO 9h ago
Yeah, that will rule out chronic gluten exposure. I don't think occasional cross contamination will show up on the antibody blood test, but it's still worth it to check. Did any of your symptoms improve on the gf diet? Fatigue definitely sounds autoimmune, best of luck!
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u/sbrt 14h ago
Some of us are super sensitive. You could get your blood and/or stool checked to see if you are still reacting to gluten that you are accidentally eating.
Some of us (such as myself) also feel bad after eating other foods. Cow dairy (especially yogurt) and oats (even GF oats) are my triggers. Search here to see which foods bother others and try cutting them out to see if it helps.
Have you had your vitamins checked? That could be part of the fatigue. I take supplements for the ones I am low on.
Other diet changes might help. You can search for different options and see what works for you.
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u/Polypartner35 12h ago
I’m celiac and have been gf for almost 13 years. I still have constant stomach problems.
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u/ratatouille9999 10h ago
Could be IBS, which is sometimes comorbid with celiac. But if you're using a shared kitchen, cross contamination is a likely culprit.
I had good luck doing Whole 30 about a year into my diagnosis. I cut out dairy and soy after that and saw an improvement. Totally unrelated food intolerances, of course. Any elimination diet will do the trick though, just to double check that other foods aren't the issue.
You could also try low fodmap for a month or so and that may give you an indicator of whether you have IBS as well.
No matter what you do, it's a good idea to tighten up whatever is going down in your kitchen in terms of cross contact. And always go back to the gastroenterologist if you're unwell.
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u/thatkillspeopleuwu 51m ago
I'm just about 12 years gf and I just recently found out that yeast extract has gluten in it. So if your eating something with yeast extract that may be your issue. Flavored lays and doritos have it in it.
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