Jump to content
  • You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

I'm Getting Gluten In Somewhere! Please Help!


LoriG

Recommended Posts

LoriG Contributor

Hi there,

I really need some guidance. I've been gluten-free 5 months and CF 3 months. I see a ND who I saw last week and he confirmed I recently got gluten in (I've been sick so I know it) and it doesn't appear my malabsorption is getting better. I MUST be getting it in somewhere!? I unfortunately don't have immediate, obvious symptoms so I'm not sure. I just feel bad everyday.

I am the only one gluten-free in the house so I am doing my best. I recently bought my own pot/pan/colander/cooking utensils. I have my own toaster and toaster oven.

In the past 5 months I have eaten in restaurants and that may be it?! I also regularly eat Frito's corn chips, so that may be it?! I am now calling all the companies and products and supplements I've been using?!

WHAT AM I MISSING? I feel like I am going crazy and becoming neurotic because I must be getting it in, but I think I'm being careful reading labels. Are there links to safe products or brands? Any advise is appreciated. Thanks.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



mamaw Community Regular

Doesn't that make you mad when you can't pinpoint a source!!!!! Do you take medication? And check-out your HBA products as well.You may want to do an elimination diet to see it you can pinpoint a problem. I find that at times I have no problem with a product but when I add something to it It causes a problem so I can"t do them together.....It sounds weird but I have a strange gastro pattern....

And it could be you are a very sensitive person & if others in the home are still eating & using wheat products that could be enough to make you ill.

Hope you find an answer soon.

blessings

mamaw

kenlove Rising Star

The cross contamination can be a major issue when others are still using bread, flour and other gluten containing items in the house.

Just a few bread crumbs dropped by accident into your salad or on your plate can cause trouble. My wife has had to give up baking anything thats not gluten-free here as i wind up sick for 3 days every time I breath something in the air.

good luck

ken

Hi there,

I really need some guidance. I've been gluten-free 5 months and CF 3 months. I see a ND who I saw last week and he confirmed I recently got gluten in (I've been sick so I know it) and it doesn't appear my malabsorption is getting better. I MUST be getting it in somewhere!? I unfortunately don't have immediate, obvious symptoms so I'm not sure. I just feel bad everyday.

I am the only one gluten-free in the house so I am doing my best. I recently bought my own pot/pan/colander/cooking utensils. I have my own toaster and toaster oven.

In the past 5 months I have eaten in restaurants and that may be it?! I also regularly eat Frito's corn chips, so that may be it?! I am now calling all the companies and products and supplements I've been using?!

WHAT AM I MISSING? I feel like I am going crazy and becoming neurotic because I must be getting it in, but I think I'm being careful reading labels. Are there links to safe products or brands? Any advise is appreciated. Thanks.

Kathe Newbie
Hi there,

I really need some guidance. I've been gluten-free 5 months and CF 3 months. I see a ND who I saw last week and he confirmed I recently got gluten in (I've been sick so I know it) and it doesn't appear my malabsorption is getting better. I MUST be getting it in somewhere!? I unfortunately don't have immediate, obvious symptoms so I'm not sure. I just feel bad everyday.

I am the only one gluten-free in the house so I am doing my best. I recently bought my own pot/pan/colander/cooking utensils. I have my own toaster and toaster oven.

In the past 5 months I have eaten in restaurants and that may be it?! I also regularly eat Frito's corn chips, so that may be it?! I am now calling all the companies and products and supplements I've been using?!

WHAT AM I MISSING? I feel like I am going crazy and becoming neurotic because I must be getting it in, but I think I'm being careful reading labels. Are there links to safe products or brands? Any advise is appreciated. Thanks.

Hi there Lori - Hope you are feeling better by now. Sometimes I think becoming gluten-free is a process, not an event. I've been gluten-free for 23 years and know I was eating things at first that none of us knew contained gluten.

Check your lipstick, vitamins and any prescription meds you are taking. Just because your Dr. prescribes it doesnot mean the med is gluten-free. A newly diagnosed friend of mine was prescribed Prilosec by her gastro. Prilosec has gluten, nexium does not.

Also, last time I checked, Fritos are made in a facility that also processes products containing gluten. You may want to cut them out for a while to see if it makes a difference.

Restaurants are tricky. Assert yourself in a friendly, positive way and be very clear about needing all your food to be gluten free. I like the line, "If I have any gluten, I will be sick in your restaurant." Good luch to you! Hope this helps. Kathe

AliB Enthusiast

Unfortunately things aren't always as easy as just leaving out gluten. Unfortunately many Celiacs are also intolerant of other things. Whilst stopping Gluten will undoubtedly help sometimes there are other triggers that have to be addressed.

Most, if not all, have problems with Candida and Leaky gut. It means that you can develop allergic or intolerance reactions to any foods particularly if the foods are eaten very regularly. Wheat/gluten typically becomes an allergen because it is eaten so regularly. You may find that if you then start eating say, soy, or buckwheat, or corn every day, you could end up becoming allergic or intolerant of that.

Foods need to be cycled on a regular basis so that no two foods are eaten regularly every day or two. I know its a pain in the neck but it is the only way to avoid this.

I have recently started on the Gluten-free diet but I have realised that there are other things that affect me - yeast, tannin (no wine, boo hoo), possibly salicylates (a reaction if I eat too many veg) and am still discovering at the moment what I can and can't eat.

With Leaky Gut, or Intestinal Permeability caused usually by Candida, large food particles are able to get through into the bloodstream and set up toxic reactions. The immune system then forms a barrier which then triggers a reaction every time we eat that same food.

Unfortunately the Candida is beavering away whilst we are happily eating the gluten, and the sugar and the carbs, doing its dirty deed without us being any the wiser until bang! and we are hit with full-blown Celiac or Chronic Fatigue, or Fibromyalgia or Rheumatoid Arthritis or whatever our genetic vulnerability happens to be...........

I so wish much more was dedicated to investigating this and dealing with it before it ever gets out of control. When under control it is part of the normal intestinal flora and quite harmless. Unfortunately we live in a very sweet-toothed and stodge-loving society and are more than happy to give it the foods it feeds on!

LoriG Contributor
Unfortunately things aren't always as easy as just leaving out gluten. Unfortunately many Celiacs are also intolerant of other things. Whilst stopping Gluten will undoubtedly help sometimes there are other triggers that have to be addressed.

Most, if not all, have problems with Candida and Leaky gut. It means that you can develop allergic or intolerance reactions to any foods particularly if the foods are eaten very regularly. Wheat/gluten typically becomes an allergen because it is eaten so regularly. You may find that if you then start eating say, soy, or buckwheat, or corn every day, you could end up becoming allergic or intolerant of that.

Foods need to be cycled on a regular basis so that no two foods are eaten regularly every day or two. I know its a pain in the neck but it is the only way to avoid this.

I have recently started on the Gluten-free diet but I have realised that there are other things that affect me - yeast, tannin (no wine, boo hoo), possibly salicylates (a reaction if I eat too many veg) and am still discovering at the moment what I can and can't eat.

With Leaky Gut, or Intestinal Permeability caused usually by Candida, large food particles are able to get through into the bloodstream and set up toxic reactions. The immune system then forms a barrier which then triggers a reaction every time we eat that same food.

Unfortunately the Candida is beavering away whilst we are happily eating the gluten, and the sugar and the carbs, doing its dirty deed without us being any the wiser until bang! and we are hit with full-blown Celiac or Chronic Fatigue, or Fibromyalgia or Rheumatoid Arthritis or whatever our genetic vulnerability happens to be...........

I so wish much more was dedicated to investigating this and dealing with it before it ever gets out of control. When under control it is part of the normal intestinal flora and quite harmless. Unfortunately we live in a very sweet-toothed and stodge-loving society and are more than happy to give it the foods it feeds on!

Thanks for that info. I am working with a nutritionist who said I need to have a lot of variety and rotation in my diet so we'll see if that helps!

loco-ladi Contributor

I have a problem with frito's if I eat more than half of the 99 cent bag they affect me simular to a CC but this also happens with anything "oily" like reg chips etc so I have cut those to a minimum.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



happygirl Collaborator

If you are a diagnosed Celiac (via bloodwork or biopsy), have you had your Celiac bloodwork re-run to see how your levels are doing?

  • 2 weeks later...
LoriG Contributor
If you are a diagnosed Celiac (via bloodwork or biopsy), have you had your Celiac bloodwork re-run to see how your levels are doing?

I was diagnosed by enterolab.

JNBunnie1 Community Regular
Thanks for that info. I am working with a nutritionist who said I need to have a lot of variety and rotation in my diet so we'll see if that helps!

If whatever test your doctor did showed you'd been having gluten, then your problem is not some other food. Diet variety is a great thing, but you may need to take your diet back to all fresh prep foods, prepared in an area your roommates don't use. Honestly, I ate rice pasta with meat sauce for two out of three meals for three months because I couldn't figure anything else out, it may come to that, however depressing the thought. Fortunately I really like pasta. Check your meds and soaps, then check your roommates cross contamination possibilites.

MySuicidalTurtle Enthusiast

Fritos make me sick.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Aretaeus Cappadocia commented on Scott Adams's article in Summer 2026 Issue
      1

      New Study Finds 1 in 10 Celiac Patients May Have Additional Autoimmune Disorders (+Video)

    2. - Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      1 Year Elimination Diet journey

    3. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      1 Year Elimination Diet journey

    4. - Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      1 Year Elimination Diet journey

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      11

      1 Year Elimination Diet journey

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,058
    • Most Online (within 30 mins)
      10,442

    Sandi Barnes
    Newest Member
    Sandi Barnes
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      makes sense. sometimes you learn one path and never question it until you see someone take a different path
    • xxnonamexx
      Interesting I read that toasted kasha groats have nutty flavor which I thought like oatmeal with banana and yogurt. Yes quinoa I have for dinner looking to switch oatmeal to buckwheat for breakfast. I have to look into amaranth 
    • Aretaeus Cappadocia
      I've never tried bananas or yogurt with kasha. It would probably work but in my mind I think of kasha as being on the savory side so I always add butter, peanut butter, or shredded cheddar cheese. Next time I make it I will try yogurt and banana to see for myself. Amaranth has a touch of sweet and I like to pair it with fruit. Quinoa is more neutral. I eat it plain, like rice, with chicken stock or other savory things, or with coconut milk. Since coconut milk works, I would think yogurt would work (with the quinoa). I went to the link you posted. I really don't know why they rinse the kasha. I've eaten it for decades and never rinsed it. Other than that, her recipe seems fine (that is, add the buckwheat with the water, rather than wait until the water is boiling). She does say something that I forgot: you want to get roasted/toasted buckwheat or you will need to toast it yourself. I've never tried buckwheat flakes. One potential issue with flakes is that there are more processing steps and as a rule of thumb, every processing step is another opportunity for cross-contamination. I have tried something that was a finer grind of the buckwheat than the whole/coarse and I didn't like it as much. But, maybe that was simply because it wasn't "normal" to me, I don't know.
    • xxnonamexx
      The basic seems more like oatmeal. You can also add yogurt banana to it like oatmeal right. I see rinsing as first step in basic recipes like this one https://busycooks.com/how-to-cook-toasted-buckwheat-groats-kasha/ I don't understand why since kasha is toasted and not raw. What about buckwheat flake cereal or is this better to go with. 
    • Scott Adams
      Celiac disease can have neurological associations, but the better-described ones include gluten ataxia, peripheral neuropathy, headaches or migraine, seizures, cognitive symptoms, and, rarely, cerebral calcifications or white-matter changes. Some studies and case reports describe brain white-matter lesions in people with celiac disease, but these are not specific to celiac disease and can have many other explanations. A frontal lobe lesion could mean many different things depending on the exact wording of the report: a white-matter spot, inflammation, demyelination, a small old stroke, migraine-related change, infection, trauma, vascular change, seizure-related change, tumor-like lesion, artifact, or something that resolved on repeat imaging. The word “transient” usually means it changed or disappeared, which can happen with some inflammatory, seizure-related, migraine-related, vascular, or imaging-artifact situations.  Hopefully they will find nothing serious.
×
×
  • Create New...