Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,346
    • Most Online (within 30 mins)
      7,748

    Thomas D Cosgrove
    Newest Member
    Thomas D Cosgrove
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Given your severe symptoms it sounds like you would be much better off going 100% gluten-free!
    • Ginger38
      Thank you for your kind words and encouragement. This has been the most difficult and confusing journey to date for me, and it has been going on since 2015/2016. The last dietitian I met with works with a lot of celiac patients, so I was excited, but she just thought I should be able to eat gluten free (whatever that may be) stay in a carb count and my diabetes would not be affected. WRONG. I have tried this several times since I crossed over to full blown diabetes, because I get so sick eating gluten that I end up getting frustrated and go back to gluten free to get some relief. I have a continuous glucose monitor so it is easy to see how my body and glucose are reacting to foods. Unfortunately my suspicions are correct. When I eat gluten-free foods -like Schar breads or rolls, or the crackers, including when I stay in my carb limit,  my sugar spikes and just sits there.. .it won;t even come back down for hours. So in the end it drives my overall glucose and A1C up. I can't really even eat oats or things like that. Cereal is very iffy. Gluten free pizzas, gluten free nuggets, and things like that majorly spike my sugar as well, again, even when staying in my carb limits. I already feel so limited on foods because of the diabetes so of course, when medical people and family and friends are like just go eat gluten, I have been like oh okay - maybe it is all in my head and hey its way cheaper to eat gluten and tastes wayyy better...and then I end up right back where I am today,. MISERABLE, just laying around in pain, spending all day in the bathroom, having accidents related to diarrhea, constant tremors, heart rate issues, chest pain etc. and I forgot about these terrible painful canker sores in my mouth right now, I can't even hardly eat or drink or swallow they hurt so bad.  Not being able to feel like I can eat gluten free is extremely frustrating. I had some great recipes and substitutes for things, and was at a decent place with all that, until the diabetes went crazy out of control, so gluten-free living seems to not be an option for me. However, eating gluten when I truly still believe I am celiac -just misdiagnosed- does NOT seem like a wise idea. I am honestly scared  I am going to get deathly ill from all this or something. I even asked my GI doctor, more like begged, if he would please just label me as celiac and tell me I was for sure (like he did before) so I could get the support I truly need. No such luck. He just keeps saying but your tests were okay 🙄 My family went to an arcade and pizza/pasta buffet yesterday - obviously I didn't want to miss out spending time with my family and my mom spent money paying for my meal/buffet - and I was hungry, so of course I ended up eating pizza and pasta that was not gluten-free, because they don't offer any gluten-free options, and then my brother and others want to ask can you eat that or are you supposed to, and I am like well no, and I will definitely pay for it. They think it is hilarious when I say things and then make comments, like how it is so fun to go out with me especially places like that because I am not supposed to eat but I just do it anyway and say I will pay for it 😥 just seems everywhere I turn it is pointless and I have no support 
    • Wheatwacked
      Just like you cannot be a little pregnant, you cannot be a little Celiac.  Here is an article I found that explains what the numbers mean. Are You Confused About Your Celiac Disease Lab Results? Here is another article about the non traditional symptoms of Celiac Disease. What Are the Symptoms of Celiac Disease? I've been taking 10,000 IU vitamin D3 since 2015.  My blood tests every 3 months for 25(OH)D have never gone above 93 ng/ml, even in the Florida summer.  70 - 100 is the body's natural homeostasis level. Surge of information on benefits of vitamin D "“When combined with supplemental magnesium, vitamin D repletion has dramatically changed my practice,” said McCarthy ... “There are now very few patients with infections, and asthmatics who are coming off medications are staying off of them. ... A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects; ... Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;
    • somethinglikeolivia
      Interesting! Recent labs I had done did show that I was low in Vitamin D so I just began supplementing, it’s hard to tell so soon but it does seem to have a positive affect! Thanks for the input!
    • Scott Adams
      Your frustration and exhaustion are completely valid, and many in the celiac and gluten-sensitive community can relate to the overwhelming confusion you're experiencing. You’re being pulled in different directions by medical advice that seems contradictory, and it’s heartbreaking that your efforts to feel better are met with so many setbacks. Positive TTG IgA antibodies are not something to brush off, especially when combined with your long list of debilitating symptoms that clearly worsen with gluten exposure. A negative biopsy does not necessarily mean you don’t have celiac disease—it’s entirely possible that damage was missed, especially since biopsy results can vary depending on where the samples are taken and how many are collected. It’s also true that celiac disease exists on a spectrum, and many people have serious symptoms and immune responses without yet showing classic biopsy damage. Managing diabetes alongside suspected or confirmed celiac disease is incredibly tricky, especially when healthcare providers don’t work as a team to support your whole health. You shouldn’t be forced to choose between controlling your blood sugar or protecting your gut and immune system. A well-planned gluten-free diet can be both nourishing and diabetes-friendly, especially with guidance from a knowledgeable dietitian who understands both conditions. It’s also deeply concerning that your symptoms—neurological issues, severe fatigue, GI distress, rashes, and more—are being dismissed. You’re not just describing discomfort; you’re describing a level of illness that’s life-altering, and your instincts that something is seriously wrong are absolutely worth trusting. You know your body better than anyone. You deserve a team that listens, believes you, and helps you build a realistic, sustainable path to healing. Whether it’s celiac disease, non-celiac gluten sensitivity, or something else, you have every right to go gluten-free permanently if that’s what makes you feel functional. Many people never get a “perfect” diagnosis but reclaim their health by honoring their own experience and choosing a path of least harm. You are not crazy, you are not weak, and you are not alone. Keep advocating for yourself—you and your daughter both deserve a healthier, more stable life.
×
×
  • Create New...