Struggling to get into a good pattern

[Rejoicephd]

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! 

[trents]

Welcome to the celiac.com, @Rejoicephd!

1. "Gluten Free" does not equate to "contains no gluten". According to FDA advertising regulations, it means it cannot contain more than 20ppm of gluten. This is a good standard for most in the celiac community but not good enough for those on the sensitive end of the spectrum. If you find the "Certified Gluten Free" symbol on a package that is even better, indicating that there is no more than 10ppm of gluten. 

2. When you are choosing "gluten free" items from a restaurant, realize that it only means gluten is not an intentional ingredient. It does not rule out CC (Cross Contamination) caused by those cooking and preparing the food back in the kitchen who may be cooking it on the same surfaces or in the same pots/pans as they are gluten containing food items and handling it with the same utensils they are handling gluten-containing food.

3. About 8% of celiacs react to the protein avenin in oats as they do the protein gluten in wheat/barley/rye. In addition, some cultivars of oats actually contain the protein gluten. Many celiacs also react to the protein casein in dairy products as they do gluten or they are lactose intolerant. Eggs, soy and corn are also common "cross reactors" in the celiac community but oats and dairy are the most common.

[Rejoicephd]

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!

[knitty kitty]

Welcome to the forum, @Rejoicephd,

I found the Autoimmune Protocol diet (Dr. Sarah Ballantyne) extremely helpful in getting my health back.  The AIP diet is very strict, removing any possibly irritating foods and allowing time for the digestive tract to heal, then other foods are added back in with less risk of reaction.  

Keep us posted on your progress!

[Rejoicephd]

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

[cristiana]

I struggled for a long time.   My TTG levels took an age to come down.  I even gave pure gluten free oats a miss, it took 8 years before I could tolerate them.  Removing dairy temporarily from my diet was hugely helpful.  Check your utensils and the oven you use are scrupulously clean, and don't open roast or bake food uncovered in an oven shared with gluten eaters.  Shared grills must be thoroughly cleaned down, too. Our oven packed up a couple of years after I was diagnosed and after that time the top oven became my family's oven, I use the lower oven.  Also our dishwasher - the old one left a residue, and sharing with gluten eaters I think this was an important factor in my slow recovery.  When the dishwasher packed up I started hand washing the plates and making sure they were really rinsed well.  When we got a new one we bought a Miele does the initial rinse with clean water, not yesterday's old water.   I stopped eating out for a while - that's a biggie.  In recent years, in the UK, thanks to Zoe's Law, caterers are having to really tighten up on catering for people with coeliac disease and allergies so I am now finding eating out much less risky.  But I'd advise being very careful with restaurants where flour is thrown about and is airborne (such as pizzerias) or where harried chefs might cook pasta in glutenous water by mistake, as those are the places I've been glutened in the most.

Edited August 2, 2025 by cristiana

[Rejoicephd]

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

[trents]

Are you taking any vitamin and mineral supplements to address the deficiencies and if so, are they gluten-free?

[Rejoicephd]

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.  

[trents]

Have you had B12 levels checked?

[Rejoicephd]

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).

[cristiana]

I think going back to your GI isn't a bad idea - my visits to the GI did not stop following my diagnosis as I had annoying issues on and off for some time.  Thankfully he is a fantastic GI, with  a great sense of humour, so it wasn't a chore to see him again although I'd rather not have had to, obviously!  But I needed my mind to be put at rest as my symptoms didn't seem to go away overnight as I'd hoped they would.  Initially I recall he recommended I went Dairy Free for three weeks, and he told me it would take that time to see an effect.  At that time, even lactose free milk went straight through me, so it is important, I would say, to even avoid that during a Dairy Free trial.

My ongoing symptoms were bloating which did respond a bit to that trial.   However, within about 18 months there was a return to a very sore stomach, plus various aches and pains.   It turned out some gluten was sneaking in with my iron supplement (I was buying Floradix instead of Floravital), but I also think the dishwasher, the oven and eating out were contributors, too.

Before my numbers normalised (from memory, about eight years!) I had several follow up appointments and a few more tests, but things gradually did get better.  Having read many accounts on this forum over the years, I don't think it is uncommon for symptoms to get a bit worse before getting better, that was certainly the case with me.  Your gut is damaged so you may well have issues digesting other food in the short term. But do try to be as scrupulously gluten free as you can possibly be as a first step, and I'd definitely try a three week Dairy Free trial.   Your villi because they are damaged are not able to create the lactase required to digest dairy at this time so you may well see some improvement if you come off dairy for a while.  Perhaps keeping a food diary of what you eat, where you eat it, whilst a bit onerous to do, will help identify foods that are causing issues. 

For a while, apart from oats, I found peas, lentils and soya products hugely aggravating.  Things should calm down.

Edited August 3, 2025 by cristiana

[Rejoicephd]

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.  

[knitty kitty]

@Rejoicephd,

Would you consider adding a B Complex to your supplements?   I was taking a multivitamin and still became deficient.  There's a question as to how well multivitamins dissolve in the digestive system.  

I found taking a B Complex and Benfotiamine, a form of thiamine shown to promote intestinal healing, very beneficial in my recovery.   Some B Complex supplements use Thiamine Mononitrate which is not well absorbed nor utilized by the body.  Thiamine Hydrochloride is better.  Benfotiamine is easily absorbed.  If not needed, the B vitamins are easily excreted.

High B12 out of the blue could be masking a lack of other vitamins that work with B12, like Folate B 9, Pyridoxine B 6, and Thiamine B 1.

Meats and liver are great sources of B vitamins.  B vitamins are needed to make digestive enzymes that digest protein, fats, and carbohydrates.  

Do keep in mind that most gluten free processed facsimile foods are not required to be enriched with vitamins and minerals lost in processing like their gluten containing counterparts.  The more carbohydrates you eat, the more Thiamine is needed to process them into energy instead of storing them as fat.  

Hope this helps!  Keep us posted on your progress.

[Rejoicephd]

@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!!!

[knitty kitty]

@Rejoicephd,

So glad you checked your multivitamin!

I like Life Extension brand.  Their BioActive Complete B Complex has active forms of the B vitamins.  Note that one serving is two capsules, so you can take one capsule at each of two meals, boosting opportunity for absorption.  

Life Extension also makes Benfotiamine (100 mg).  Take one at each of two meals in addition to the B Complex.  Don't take thiamine and B vitamins close to bedtime, you may be too energized to sleep.  

I like Life Extension's Neuro Mag, a form of magnesium that can get into the brain easily, which helps immensely with improving headaches and muscle tension in the neck.  

I'm so glad you're enjoying the forum!  

Edited August 4, 2025 by knitty kitty
Typo correction

[Rejoicephd]

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

[Rejoicephd]

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!!

[cristiana]

Since I've been a member of this forum,  I've seen some people write that they have not been able to tolerate corn, and others nightshades - tomatoes, potatoes, eggplant, and peppers (including bell peppers, chili peppers, and paprika).   

However, intolerances can be short term, just while you are healing.    So bear this in mind if you start dropping certain foods from your diet - you may well be able to eat them again once you are healed.

[Zuma888]

On 8/14/2025 at 4:50 AM, Rejoicephd said:

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!!

I really recommend you go on AIP to heal your gut first, and then reintroduce foods one by one...

[Rejoicephd]

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.

[cristiana]

The early days are often tricky for the newly diagnosed.   There were times I thought I'd never feel better, but it just takes some people longer than others.   Hang on in there, and keep posting with any questions as they occur or if you need any encouragement.

[Beverage]

Are you exposed to any airborne sources of gluten? We have an older house and constantly fixing something. Cutting into old wall board or plaster can release gluten into the air.

Also, the sickest i ever got was from taking care of my neighbor's chickens, they get excited and kick up everything, air filled with dust. Sure enough, their food contained gluten grain. 

Any pets? If they are eating gluten, they lick themselves, you pet them .... my pets all eat grain free pet food. If I pet someone else's critters, which I am compelled to do, I immediately was hands.

[Rejoicephd]

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!

[knitty kitty]

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.