Jump to content
  • Welcome to Celiac.com!

    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):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Do you react to "gluten free" as in less than 20 mg/kg?


Lex-

Recommended Posts

Lex- Explorer

I am new to the gluten free world, and still learning. I have kept a food diary, avoided gluten religiously, and yet had a reaction without knowing the source - until I l realised the tuna fish I was using under the guise of "gluten free" actually contained a little gluten (<20 mg/kg). Could this have been the culprit? Any thoughts? 


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



Celiac.com Sponsor (A8-M):



kareng Grand Master
57 minutes ago, Lex_ said:

I am new to the gluten free world, and still learning. I have kept a food diary, avoided gluten religiously, and yet had a reaction without knowing the source - until I l realised the tuna fish I was using under the guise of "gluten free" actually contained a little gluten (<20 mg/kg). Could this have been the culprit? Any thoughts? 

Just curious- how do you know it had Gluten?  And the measurements seem odd to me.  In the US we measure Gluten in parts Per Millon (ppm)

Lex- Explorer
13 minutes ago, kareng said:

Just curious- how do you know it had Gluten?  And the measurements seem odd to me.  In the US we measure Gluten in parts Per Millon (ppm)

I looked up the product on their website. And milligram per kilogram is the equivalent way of saying parts per million. They are the same.

Victoria1234 Experienced
1 hour ago, Lex_ said:

I am new to the gluten free world, and still learning. I have kept a food diary, avoided gluten religiously, and yet had a reaction without knowing the source - until I l realised the tuna fish I was using under the guise of "gluten free" actually contained a little gluten (<20 mg/kg). Could this have been the culprit? Any thoughts? 

I used to. Not anymore, though. But for the first, I don't know, say 2 years I couldn't have the gluten-free cookies, breads, etc at all without starting to itch (dh).

Lex- Explorer
9 minutes ago, Victoria1234 said:

I used to. Not anymore, though. But for the first, I don't know, say 2 years I couldn't have the gluten-free cookies, breads, etc at all without starting to itch (dh).

Ah yes, my immediate symptom is the itching too.

kareng Grand Master
20 minutes ago, Lex_ said:

I looked up the product on their website. And milligram per kilogram is the equivalent way of saying parts per million. They are the same.

 So....it says they test at less than 20 per million?  What I want to know is how do you know that number isn't 0?  That doesn't mean the item has 19 ppm of gluten...or that's they add gluten until it reaches 19.

Ennis-TX Grand Master

I reacted to "Gluten Free" hemp protein....I ate it for a few weeks til I started having symptoms ramp up and sent it off to be tested after my Nima Gluten tester flagged it for positive....came back like I think they said 16ppm.....took awhile but I did have a reaction....been 4 weeks off the stuff and still coming down, so many other issues came back and D just stopped daily after 3 weeks....still got a random cow pie this morning but I tried to reintroduce Mexican spices too soon it seems and my gut is still picky.


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

It might not be gluten in canned tuna hat is causing your issues.    You could be reacting to other ingredients like soy.  

Lex- Explorer
2 hours ago, cyclinglady said:

It might not be gluten in canned tuna hat is causing your issues.    You could be reacting to other ingredients like soy.  

It could be something else, of course, but I have not reacted to soy before. As far as I can tell, soy agrees with me.

ravenwoodglass Mentor

Unfortunately our reactions can be delayed by up to 3 or 4 days. That can make it hard to figure out what got us. In addition after we have been gluten free for a bit other intolerances can rear their ugly head. I thought I was reacting to gluten in items that were not only gluten free but made in dedicated facitities. In my case it did turn out to be soy but it took me awhile to figure that out. Was the tuna plain tuna? If so what did you have with the tuna?  I have only been able to find one or two tunas without soy. I have to read the full labels because even many that say 'packed in water' are actually packed in a water based broth with soy. I hope you can figure out what got you soon. One last note. Do you have DH? If so even the low levels of iodine in the tuna may be too much for you till the antibodies leave the skin.

Ennis-TX Grand Master

I also developed a intolerance to olive oil at one point....came back recently...... anyway check this article out on intolerance and other issues. You can get rolling intolerance issues with this disease where something will just up and start bothering you one day and maybe go away in a few weeks or months. Open Original Shared Link

Lex- Explorer
19 hours ago, kareng said:

 So....it says they test at less than 20 per million?  What I want to know is how do you know that number isn't 0?  That doesn't mean the item has 19 ppm of gluten...or that's they add gluten until it reaches 19.

I am aware what "less than 20" means. It could be zero or 19.99999. Can you be certain it's zero?

Lex- Explorer
8 hours ago, ravenwoodglass said:

Unfortunately our reactions can be delayed by up to 3 or 4 days. That can make it hard to figure out what got us. In addition after we have been gluten free for a bit other intolerances can rear their ugly head. I thought I was reacting to gluten in items that were not only gluten free but made in dedicated facitities. In my case it did turn out to be soy but it took me awhile to figure that out. Was the tuna plain tuna? If so what did you have with the tuna?  I have only been able to find one or two tunas without soy. I have to read the full labels because even many that say 'packed in water' are actually packed in a water based broth with soy. I hope you can figure out what got you soon. One last note. Do you have DH? If so even the low levels of iodine in the tuna may be too much for you till the antibodies leave the skin.

Thanks for your response, ravenwoodglass,

 

I do have DH. Apparently DH is my most immediate symptom, setting in before the rest of the symptoms appear. The tuna I consumed is not plain. It's packed in olive oil and garlic. Is iodine something I should worry about too? If so, does it include iodine added to salt as well?

Lex- Explorer
8 hours ago, Ennis_TX said:

I also developed a intolerance to olive oil at one point....came back recently...... anyway check this article out on intolerance and other issues. You can get rolling intolerance issues with this disease where something will just up and start bothering you one day and maybe go away in a few weeks or months. Open Original Shared Link

Thank you for the response and the link, Ennis_TX.

 

It seems I have an arduous journey ahead of me.

ravenwoodglass Mentor
1 hour ago, Lex_ said:

Thanks for your response, ravenwoodglass,

 

I do have DH. Apparently DH is my most immediate symptom, setting in before the rest of the symptoms appear. The tuna I consumed is not plain. It's packed in olive oil and garlic. Is iodine something I should worry about too? If so, does it include iodine added to salt as well?

Iodine can keep the antibodies active in the skin.  I just had to drop iodized salt and got vitamins without iodine. Some need to avoid high iodine foods like seaweed and some seafood as well.  It is important to add iodine back in after you haven't had any new breakout for a couple months or so. I also made sure any topicals like shampoos, soaps etc were gluten free. Gluten can't be absorbed into the bloodstream through intact skin but skin with DH lesions is not intact. I felt better safe than sorry as DH is sooooo very miserable with which to deal. I hope you heal quickly. 

jfhinoh Rookie
On 1/2/2018 at 5:18 AM, Ennis_TX said:

I also developed a intolerance to olive oil at one point....came back recently...... anyway check this article out on intolerance and other issues. You can get rolling intolerance issues with this disease where something will just up and start bothering you one day and maybe go away in a few weeks or months. Open Original Shared Link

 

On 1/2/2018 at 1:41 PM, Lex_ said:

Thanks for your response, ravenwoodglass,

 

I do have DH. Apparently DH is my most immediate symptom, setting in before the rest of the symptoms appear. The tuna I consumed is not plain. It's packed in olive oil and garlic. Is iodine something I should worry about too? If so, does it include iodine added to salt as well?

A lot of the olive oil sold in the United States is diluted with less expensive oils or other ingredients.  It may not actually be a reaction to olive oil, but to one of the other questionable ingredients. 

60 Minutes did a story on this awhile ago: Open Original Shared Link

 

Ennis-TX Grand Master
3 hours ago, jfhinoh said:

 

A lot of the olive oil sold in the United States is diluted with less expensive oils or other ingredients.  It may not actually be a reaction to olive oil, but to one of the other questionable ingredients. 

60 Minutes did a story on this awhile ago: Open Original Shared Link

 

Well if they cut it with sunflower it would have some effect on me but I have to eat a decent amount to trigger a reaction. Peanuts are the only other thing that can make me projectile vomit as bad as olives currently do again. But I doubt they would risk that allergy. Though you point does bring out a interesting facts...there is one product that contains olive oil in it way down on the ingredients I had just this morning and it did not bother me. -_- The pasta sauce I had 2 days ago with only a tbsp over my eggs had me praying to the porcelain god for a good half hour. Back to making my own, or using miracle noodle pasta sauce (they use coconut instead of olive). -_- I miss that for awhile I was able to have Thrive Market Marinara sauce in small amounts til the intolerance came back.

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. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

    2. - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

    3. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

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

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.