Rejoicephd

Thank you @JulieRe so much for sharing this extra information. I'm so glad to hear you're feeling better and I hope it keeps moving in that direction.

I feel I'm having so many lightbulb moments on this forum just interacting with others who have this condition.

I also was diagnosed with gastric reflux maybe about 10 years ago. I was prescribed ranitidine for it several years back, which was working to reduce my gastric reflux symptoms but then the FDA took ranitidine off the shelves so I stopped taking it.

I had a lot of ups and downs healthwise in and around that time (I suddenly gained 20 pounds, blood pressure went up, depression got worse, and I was diagnosed with OSA). At the time I attributed my change in symptoms to me taking on a new stressful job and didn't think much else about it. They did give me a replacement gastric reflux drug since ranitidine was off the shelves, but when I went on the CPAP for my OSA, the CPAP seemed to correct the gastric reflux problem so I haven't been on any gastric reflux drug treatment for years although I still do have to use a CPAP for my OSA.

Anyway that's a long story but just to say… I always feel like I've had a sensitive stomach and had migraines my whole life (which I'm now attributing to having celiac and not knowing it) but I feel my health took a turn for much worse around 2019-2020 (and this decline started before I caught covid for the first time). So I am now wondering based on what you said, if that ranitidine i took could have contributed to the yeast overgrowth, and that the problem has just been worsening ever since. I have distinctly felt that I am dealing with something more than just stress and battling a more fundamental disease process here.

I've basically been in and out of different doctor specialties for the past 5 years trying to figure out what's wrong with me. Finally being diagnosed with celiac one year ago, I thought I finally had THE answer but now as I'm still sick, I think it's one of a few answers and that maybe yeast overgrowth is another answer.

For me as well, my vitamin deficiencies have persisted even after I went gluten-free (and my TTG antibody levels came down to measurably below the detectable limit on my last blood test). So this issue of not absorbing vitamins well is also something our cases have in common. I'm now working with a nutritionist and taking lots of vitamins and supplements to try and remedy that issue.

I hope that you continue to see improvements in working with your naturopath on this. Keep us posted!

Hi @JulieRe.  I just found your post.  It seems that I am also experiencing thrush, and my doctor believes that I have fungal overgrowth in my gut, which is most likely candida.  I'm seeing my GI doctor next week, so I'm hoping she can diagnose and confirm this and then give me an antifungal treatment.  In the meantime, I have been working with a functional medicine doctor, doing a candida cleanse and taking vitamins. It's already helping to make me feel better (with some ups and downs, of course), so I do think the yeast is definitely a problem for me on top of my celiac disease and I'm hoping my GI doctor can look into this a bit further.  So, how about you?  Did the candida come back, or is it still gone following your fluconazole treatment?  Also, was it awful to take fluconazole?  I understand that taking an antifungal can cause a reaction that sometimes makes people feel sick while they're taking it.  I hope you're doing better still !

@Scott Adams That's actually exactly what I ended up asking for— vodka tonic with Titos.  I saw on their website that Tito's is certified gluten-free (maybe many of the clear vodkas are, I don't know, I just happened to look up Tito's in advance). I should have actually specified the 'splash' though, because I think with the amount of tonic she put in there, it did still end up fairly sweet.  Anyway, I think I've almost got this drink order down!

That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth.  She said the combination of the alcohol and sugar would be very likely to worsen my candida problem.  She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry.  

So in summary, I am giving ciders a rest.  Whether it's a gluten risk or sugars and yeast overgrowth, its just not worth it.

On 8/19/2025 at 9:55 PM, knitty kitty said:

Allegra is an antihistamine.  Histamine is released by the body as part of the autoimmune and immune responses, so an antihistamine would be helpful.  Following the low histamine version of the AIP diet is helpful as well because there's also histamine in foods.  Sometimes our body has trouble getting rid of the histamine it makes and the histamine from our food.  Sometimes the mast cells that make and release histamine get touchy and release histamine at the slightest provocation.  Thiamine helps mast cells not to release histamine so readily.  Look into Mast Cell Activation Syndrome. 

SIBO, small intestinal bacterial overgrowth, can also cause high histamine levels.  Following the low histamine AIP diet will starve out the bad SIBO bacteria that feed on carbohydrates we eat.  We don't want to take antibiotics because they kill off both the good and bad bacteria.  We don't want to take probiotics yet because the SIBO bacteria will outnumber them.   The AIP diet will allow the good bacteria to flourish.   Some have Candida infections as well as SIBO.  

Lowering histamine levels is important because high histamine levels for a long time can lead to worsening health problems like Crohn's and colitis and other health problems.

You called it @knitty kitty.  I went to another health care provider for another opinion, and based on some tests they did, they suggested I might also be dealing with a fungal issue (candida and/or mold).  I saw that you mentioned before in this chain that some people on this forum also get Candida infections.  So it seems that I am possibly dealing that issue in my gut as well. I think some of the symptoms that I've been not able to understand now make a lot of sense within this context (such as why eating dairy and sugar sometimes causes me to get headaches, joint pain, chills, feel like I have the flu... if these things are making the candida infection worse by feeding the candida, and then my body responds by trying to fight it off, then I basically am fighting off an infection, which is exactly what it feels like).  The flu-like reaction that I get when I eat dairy is a distinct reaction than the one I get from getting glutened (which is also bad, but different: headache, sharp abdominal pains, gas, diarrhea). That's what made me think there was something else at play. 

Oh cool! We have similar stories! I’m a microbiologist with an interest in metabolism. Been getting more and more fascinated by nutrition in recent years. 
 

I will check out your blog . Thanks !

Thanks @knitty kitty for keeping me thinking about the importance of vitamins. And I appreciate you sending those papers (gives me something for my science brain to work through! I’m a PhD in biology so I like reading these sorts of things). It’s been surprising to see how little is understood about the cause of fibromyalgia. My Vit D went low again on my last blood test so I know I’m back to being deficient there (it did go up for a while but back down again). Whomp whomp. So I’ll be both reading about and taking vitamins. Thanks again for your input. Really appreciate it.

Thanks very much for confirming my suspicion @Scott Adams! That helps a lot because I'm really trying to track down and get rid of these sources of cross-contact and so I'm going to just rule out the draft ciders and hope that helps. Also @Rogol72 its nice to hear you haven't had a problem on that side of the pond - draft cider lines being used for cider only certainly sounds like the right way to do it, but I think that must not always be practiced over here! 

Hi everyone

do you know whether when you get a draft cider if there is a chance that it runs through the same tubing as a beer did sometime prior? 

the reason I’m asking is that I’m trying to eliminate a source of hidden gluten that I think hits me about once a month. And I have a suspicion it might be cider from the draft at certain bars. When I am out, if I decide to drink, I usually order a cider brand that I know is gluten free. 
 

what I’ve noticed is that a couple times when I got a draft cider, I got symptoms of being  glutened that night and the day after. This doesn’t seem to happen with all times I drink cider. I had a draft at a very clean brewery and I didn’t react from that, which is what made me start to wonder. Does anyone know if this is a possible source of getting glutened? I am like 99% sure that this is the cause and I think I’ll switch to bottle/can only from here on out, but would be interested if others experienced the same thing (or work in a bar and know how this works). Thanks!

Just giving another update... I was referred to rheumatology, and they suspect that I may also be dealing with fibromyalgia (it has not been formally diagnosed, but just suggested at this point).  So, I am continuing with the anti-inflammatory diet and vitamins and still working to keep getting rid of all these hidden gluten sources, but I also do have another possible explanation for some of the issues that I'm dealing with.

Thanks @Beverage for checking in!  I haven't changed the dogs' food yet.  I'm still working through some of the other issues that I need to remedy (transitioning to an anti-inflammatory diet, being sure to get only gluten-free certified items, and buying some new cookware for my kitchen).  Somewhere after that, I have on my list to try out the dogs on a new dog food, but I haven't gotten there yet.  In the meantime, though, I can definitely see that some of my worst days seem to follow when there's a possibility of gluten cross-contamination (I'm still working to cut waaay down on these instances) OR when I eat anything with dairy/ milk protein in it.  So I think I need to really get a better handle on my day-to-day eating habits to reduce all gluten cross-contamination into my food and also any dairy intake, and then at that point, I think I'll start moving over to the dog food thing.  

Oh I have 2 dogs. And I just looked up the ingredients in their food and it does contain barley as a main ingredient. Maybe some other things too that aren't helpful but barley just caught my eye on a quick look. 

And yes I spend lots of time with them, they're always cuddled up on me. I even have wondered before if I was allergic to them and I take Allegra at night out of some thought that maybe I was allergic to them (but I've never confirmed that). 

Wow. This is very interesting. I could try putting them out on some grain-free food for a month and see if that helps. Thanks for the tip!

Yea ... you're probably right.  I think I have been in a sort of denial about how bad this condition is. I thought it would be easier to deal with it.  It is clearly NOT.  Reading different posts on this forum over the past few weeks has helped me come to terms with that a bit, that this is a tough disease to live with and it takes some very serious steps to manage.  Several people mention AIP and it is helping me to think of myself as a person with an autoimmune disease, rather than a person who can't eat gluten.  That's making me take it more seriously and I think I need to do that if I'm going to get out of this loop I'm in where I just eat / drink foods that make me sick and I just battle through it week after week.  Its easier for my husband to see its damage than for me to see it in myself.  He reminded me the other day when I told him that I thought I ate something again that caused me to have a bad day the next day, and he says "you've been having a lot of bad days lately."  I've got to do something to break out of this pattern and so anyway yea I appreciate the suggestion to heal the gut first.  That makes total sense.

Hey everyone. Thanks again for your suggestions. I wanted to give an update and ask for some follow-up suggestions from you all. 

So I did go through all of my food items and stopped eating things that were “gluten free” and switched over to the “certified gluten free” ones (the ones with the g symbol). I also stayed away from restaurants except once and there I ordered something raw vegan and gluten free hoping for the best. I also stayed away from oats and soy and dairy. I've also been increasing my vitamin B complex. I've been doing this for about 12 days and while I know that's not that long, I'm still getting sick. Sometimes having diarrhea. Sometimes getting headaches and having necklaces. Sometimes waking up feeling horrible brain fog. I did go to my GI doc and they did a blood test and found my TtG-IgA was in the negative range (and a lower number than I'd had before). I also had normal levels of CRP. My stool showed no elevation of calprotectin and no pathogens. My GI doc said the symptoms could be related to a gluten exposure or to IBS. I'm keeping a food diary to see if I can narrow down whats going on. I know I have good days and bad days and Im trying to isolate what makes a good day versus a bad day. Generally so far it looks like if it eat something super cautious like raw vegetables that I chopped myself into a salad and almonds, im fine but if I eat something more complex including, say, chicken and rice (even if packaged and certified gluten free or made by me with gluten free ingredients), it may not go so well. I may end up with either a headache, neck tension, brain fog, and/or diarrhea that day or the morning after. Any other thoughts or suggestions? I am planning to start tracking my foods again but I wanted to do it in more detail this time (maybe down to the ingredient level) so are there any common ingredients that celiacs have issues with that you all know of that I should track? I've got dairy, oats, soy, eggs, corn, peas, lentils on my “watch list”. Other things I should add? I'm hoping if I track for another two weeks I can maybe pin down some sensitivities. Appreciate the help and tips. Thank you so much!!

Thanks so much.  🙏  I see they have them on Amazon. I'm all over it.  I'll let you know how it goes. 

@knitty kitty thank you for this suggestion.  Yes definitely.  Actually, since you brought it up, I just looked to see what amount of B vitamins my multi-vitamin had in it. I just realized that not only am I taking the version of thiamine that you mentioned doesn't absorb well, but also that I inadvertently reduced the amount of thiamine that I'm taking daily over time.  I'm just now looking at the bottles for the last three multi-vitamins that I was taking (including the current one I'm taking now).  I started with thiamine mononitrate at 25mg but that turned out not to be a gluten-free multivitamin, so then I switched to a gluten-free multivitamin with 1.1mg thiamine mononitrate, and then when my GI doc advised me to switch to an independent iron pill, I got a new multi-vitamin gummy that lacked iron. Now I'm realizing that this gummy only has 0.14mg thiamine mononitrate.  So not only are these not the right kind of thiamine but they are waaaay low.  Probably going on a gummy is a bad idea anyway... I will look into a B complex and if you have any suggestions of a specific one that worked for you, I would gladly take the suggestion!  Thanks so much.  this is such an awesome forum!!!

Thank you @cristiana.  Its really helpful to hear your experience, thanks for sharing.  8 years is a long time!  And its also good to know that others have experienced worsening before it gets better.  I've just started doing the food diary recently, and I'll keep that going. It's at least helping me try to get a handle on this, and also helps increase my overall awareness of what I'm putting in my body. I will also message my GI doc in the meantime too.  Thanks, it's really helpful to talk through this.  

Thankfully those are normal. B12 was on the low end of the normal range when I first got diagnosed. When I last got it checked, it had come up a lot (455 last time checked).

For the past few months, I've been taking several supplements (a multi-vitamin, an iron supplement, a vitamin C supplement, and a magnesium supplement), all of which state that they are gluten free on the label.  

Thanks @cristiana I really appreciate hearing all of this... I definitely need to look out better for the shared dishes/pans/ovens thing.  I'm currently not doing a good job of that at all.  But I think I need to make the airfryer a gluten-free only airfryer.  I've been keeping a food diary for these past few days and so far its been interesting.  I think I have 2 issues going on:

1. I get a head/neck/shoulder/jaw ache when I get glutened (as well as feeling fatigued and brain fog).  At least this is what I think are my symptoms from consuming gluten.  I think that the only things I consumed were marked gluten-free, but they were a combination of "certified gluten-free" and "gluten-free", so I think I am definitely worried thinking that the "gluten-free" non-certifieds are not good enough for me.  Also, I feel like the issue of cross-contamination of dishes could be an issue for me too. 
2. But there's also a second issue I'm trying to figure out.  I ate 2 dishes containing chicken this week from gluten-free companies (frozen dish, fully contained and sealed) - one of which had the "certified gluten free" logo on it.  And right after eating, I had bowel movements that I think would be classified as steatorrhea.  I have this type of bowel movement multiple times a week lately, which has become quite miserable. But from my food diary, I can tell that when I don't eat meat or eat fish, I am not experiencing this issue. From my reading, I can see that steatorrhea can result from malabsorption in the gut due to celiac, and I know that I do have issues with malabsorption because I have iron-deficiency anemia (my ferritin was 10 when last tested). I also had low potassium and low Vitamin D when first diagnosed with celiac, but both have come back into the normal range since I started going gluten-free and taking supplements.  

Based on what you all are saying, I am now thinking that my iron-deficiency anemia, my steatorrhea, and my head/neck aches may all still be persisting because I'm still consuming this lingering amount of gluten regularly.  I've really got to do a lot to switch over to ONLY eating certified gluten-free products and also creating a clean space within my kitchen that is just for me to use, and probably just skip restaurants completely for a while... Also maybe in the mean time, I might just keep my foods simple.. no dairy or meats (just fish) which my stomach seems happier with.

Do you all think this is something I should go into my GI doctor about?  Because when I saw her last, I wasn't having steatorrhea.  My GI symptoms were actually kind of mild, which I thought was sort of strange since I had just got diagnosed with celiac disease.  I was dealing with mostly headaches, etc and so I've been mostly working with a neurologist and physical therapist on these symptoms.. but there's only so much they can do when I trigger a brand new headache/stiff neck every week and I'm starting to think that celiac is at the root of all of this... 

Thanks for all your support and insights

Thank you @knitty kitty I really appreciate that suggestion as a way to reset and heal my gut - i will look into it !! 

Thank you very much @trents! This is super helpful. The only time I wasn’t sick after my diagnosis was when I was ordering and eating certified gluten-free meals from a company. I did that for a few months right after being diagnosed and then I started to try to figure it out how to cool and eat gluten-free meals myself. I think I’m probably getting low levels of gluten exposure and maybe that’s what’s making me ill. Possibly other things also not helping the situation (like dairy). Anyway this gives me something to focus on to see if it helps. So thanks for that!

Hi everyone! I was diagnosed with celiac a year ago (they confirmed it on endoscopy following a positive TTG antibody and positive genetic test). I thought the gluten free diet thing wasn’t going to be that hard of an adjustment, but man was I wrong. I’m a year in and still having issues in terms of accidentally glutening myself and getting super sick (I’m starting to think I need to just bring my own food everywhere I go). And also even when I am eating foods that say they are gluten free, I’m still dealing with an upset stomach often. My GI doc said I should avoid dairy as well, and the internal medicine doc said my gut microbiome might be messed up from all of this. I’m just looking for some answers/ideas/tips on what additional things I can do to feel better. Do you all do avoid additional categories of foods beyond just gluten to help alleviate symptoms? Thanks!