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

Contamination Somewhere-Can't Figure Out The Source


gfbakingmom

Recommended Posts

gfbakingmom Newbie

My son and I were diagnosed with gluten intolerance about a year ago. His symptom is eczema; mine is intestinal trouble. I have been very strict since that time, rarely eating out, preparing all our meals at home, eating only foods that I have checked and made sure were gluten free. Our symptoms cleared up and we have been great, until . . . about six weeks ago. My son has developed his tell-tale eczema (and bad behavior) and my intestines are problematic again. This happens to coincide with my adding a new element to our diet: Baking gluten-free bread and muffins with flours other than almond flour, which I used exclusively until about mid-March. The flours I buy come from companies that claim certified gluten free: Bob's Red Mill, Nuts Online, and Arrowhead Mills. The "new" flours I had never used until the symptoms began are sorghum, millet, sweet rice, and tapioca starch. I use xanthan gum in the bread but not the muffins.

I am wondering if someone can give me some clues as to what might be causing our symptoms. We have not eaten out in at least three weeks. I cook with mainly whole foods, and the brands of canned goods/etc. are all things I have been using since we went gluten-free a year ago--they didn't trouble us before. Help!

Thank you.


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



Celiac.com Sponsor (A8-M):



quincy Contributor

My son and I were diagnosed with gluten intolerance about a year ago. His symptom is eczema; mine is intestinal trouble. I have been very strict since that time, rarely eating out, preparing all our meals at home, eating only foods that I have checked and made sure were gluten free. Our symptoms cleared up and we have been great, until . . . about six weeks ago. My son has developed his tell-tale eczema (and bad behavior) and my intestines are problematic again. This happens to coincide with my adding a new element to our diet: Baking gluten-free bread and muffins with flours other than almond flour, which I used exclusively until about mid-March. The flours I buy come from companies that claim certified gluten free: Bob's Red Mill, Nuts Online, and Arrowhead Mills. The "new" flours I had never used until the symptoms began are sorghum, millet, sweet rice, and tapioca starch. I use xanthan gum in the bread but not the muffins.

I am wondering if someone can give me some clues as to what might be causing our symptoms. We have not eaten out in at least three weeks. I cook with mainly whole foods, and the brands of canned goods/etc. are all things I have been using since we went gluten-free a year ago--they didn't trouble us before. Help!

Thank you.

Despite the gluten free nature of flours you can still react to them. are you using oats as well? some celiacs/gluten sensitive people cannot tolerate gluten-free oats or gluten-free oat flour.

GlutenFreeManna Rising Star

Do you know if you are sensitive to oats at all? I will tell you I cannot use anything by Bob's Red Mill because they process "gluten free" oats in their gluten free facility with all the other gluten free flours they make. A small percentage of celiacs cannot handle any type of oats at all. For some sensitive people cc from even gluten-free oats can make them sick.

Takala Enthusiast

Well, that's a bummer. :(

I reacted recently to a bag of a certain kind of marked gluten free corn flour from Bob's, and it was a single grain type of deal with the quickbread, and it had to be that from what else I ate that day. I eat other forms of corn, so I was very annoyed. I do not know exactly what this is cc'd with, however.

It could also be the Arrowhead Mills. They use paper instead of plastic bags, and I've seen some displays with lots of flour dust residue on the bags, and the regular flours mixed in with the gluten free in the store displays, even in a venue where the store has the aisle marked gluten free. I also have seen several references here and elsewhere with people having cross contamination trouble with certain flavors, such as the millet. Other people swear by it and claim to not have problems. The other likely culprit would be the sorghum. Read here for a study done last year on cross contamination: Open Original Shared Link

The only way to tell for sure, is to just add one new gluten free flour at a time to the repertoire.

Rice is less likely to be grown near other wheat crops and tapioca is a root crop. You might try coconut flour, which is another nut flour. I grind my own almonds and buckwheat.

Whenever I do make something, I make sure if I'm dipping into a bag to always use a clean spoon, otherwise I pour it out into the mixing cup or bowl, so I don't spread residue.

gfbakingmom Newbie

We do not eat oats in any form (I know I react to them), so that isn't the problem. The flours I buy come from (Company Name Removed - They Spammed This Forum and are Banned) or other online sources--the millet flour came in a plastic-wrapped carton, with the paper sacks inside.

About the sorghum -- the company I bought it from tests everything to ensure that it is not contaminated, so they say.

kareng Grand Master

I seen several people on here say that they react to tapioca. If you hadn't been using it before, maybe that got you? Could be one of the other flours. Maybe go a week or so back to what you were doing. Feel better. Then try using 1 new flour/ starch at a time. If they have to be mixed, maybe you could do 2 at a time.

rdunbar Explorer

i just eat meat, vegetables and fruit. i'm trying to avoid anything that can have a chance of being contaminated.

for me, it's not 'is it contaminated ?', it's 'is it possible that it's contaminated.?"

if theres a chance, i don't take it if i don't have to. and it seems like there is always a risk.

w/ gluten free flours, and other processed foods, you don't know what else was put through the mill, or what it was stored around.

i'm sure certain complanies are fine, and diligent about protecting their customers. then be aware that you are going on trust, and letting you guard down when your consuming these products.


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



Celiac.com Sponsor (A8-M):



GlutenFreeManna Rising Star

We do not eat oats in any form (I know I react to them), so that isn't the problem. The flours I buy come from (Company Name Removed - They Spammed This Forum and are Banned) or other online sources--the millet flour came in a plastic-wrapped carton, with the paper sacks inside.

About the sorghum -- the company I bought it from tests everything to ensure that it is not contaminated, so they say.

What I was trying to explain is that if you react to oats there is a chance you will react to ALL Bob's Red Mill products because they are processed with oats. That is the case for me as well as for at least one other member here. We cannot use any BRM products becasue of the oat cc.

quincy Contributor

What I was trying to explain is that if you react to oats there is a chance you will react to ALL Bob's Red Mill products because they are processed with oats. That is the case for me as well as for at least one other member here. We cannot use any BRM products becasue of the oat cc.

Hi GFM. I didn't know that all BRM flours are processed where the oats are processed. Good to know; I thought for some reason their oat processing was completely separate. I will have to remember that. I used BRM corn meal to make muffins and YUCK, what a bad response I had.

I also remember that right after going gluten-free I reacted to ALL processed foods, so the best thing was to stick with rice, veggies, meat and chicken. very simple....

gfbakingmom Newbie

Wow, now that is very interesting. All Bob's Red Mill products are processed with oats . . . and I have been using them in earnest, especially the Hot and Tasty Cereal. I just started that about six weeks ago too. WOW, that is good to know. Now I am a bit miffed because I just ordered a TON of that stuff and it is not cheap at all. I will now cut out all the Bob's Red Mill products for two weeks and then see what happens. Hmmmm . . .

psawyer Proficient

Bob's Red Mill has a dedicated facility for their gluten-free products. The oats that come into that facility are "the purest gluten free oats grown by over 200 farmers on clean, dedicated oat-growing fields." [per their web site}

If you are one of the minority of celiacs who can not tolerate even pure oats, this may be an issue. But for most of us the concern with oats is that, unless special precautions are taken at every stage of the production process, oats are always contaminated with wheat.

gfbakingmom Newbie

Bob's Red Mill has a dedicated facility for their gluten-free products. The oats that come into that facility are "the purest gluten free oats grown by over 200 farmers on clean, dedicated oat-growing fields." [per their web site}

If you are one of the minority of celiacs who can not tolerate even pure oats, this may be an issue. But for most of us the concern with oats is that, unless special precautions are taken at every stage of the production process, oats are always contaminated with wheat.

Yes, this is true. However, I know that I react badly to Bob's Red Mill certified gluten free oats, specifically. When I was diagnosed, I went on a very strict, completely gluten and oat free for six months, and was completely healthy. Then, to test whether I could tolerate oats, I added Bob's Red Mill gluten-free oats into one meal. I had a horrible reaction. Most celiacs can tolerate pure oats, and clearly I am not one of them. So, now I must learn if the other gluten-free products processed by Bob's Red Mill could be contaminated with oats.

GlutenFreeManna Rising Star

Wow, now that is very interesting. All Bob's Red Mill products are processed with oats . . . and I have been using them in earnest, especially the Hot and Tasty Cereal. I just started that about six weeks ago too. WOW, that is good to know. Now I am a bit miffed because I just ordered a TON of that stuff and it is not cheap at all. I will now cut out all the Bob's Red Mill products for two weeks and then see what happens. Hmmmm . . .

Yes I think that's a good way to figure it out. Drop the Bob's Red Mill products and see if you improve. Good Luck!

dilettantesteph Collaborator

What you need to do is use each flour separately for a period of at least a week before you try another one. That way you can figure out which ones bother you and which ones you can eat. In general it is a good idea to keep track of new food items and symptoms in a food diary.

I react to gluten free oats and Bob's products. Lots of gluten free food companies use gluten free oats. Those of us sensitive to gluten free oats have to be very careful.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    2. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    4. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?

    5. - Scott Adams replied to ElenaM's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      I think I am gluten intolerant


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,905
    • Most Online (within 30 mins)
      7,748

    Croissantl0v3r
    Newest Member
    Croissantl0v3r
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.