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

If You React To Oats What's It Like?


megsybeth

Recommended Posts

megsybeth Enthusiast

I know about 5% of celiacs can't have oats, even when not contaminated. I've had a couple cases of stomach cramping after eating oats but I don't want to be in that 5%! I've only been on the gluten-free diet for about a month so there have been lots of pains and issues here and there along the way. But last week I made some delicious raspberry oat bars and had cramping and D. Today I just had a bowl of oatmeal for breakfast and had cramping and a feeling that worse might be to come. Both times it was BRM oats.

So is the reaction to oats quick, like to lactose? Or is it something that would be delayed? Also, is this something I might get over?


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



Celiac.com Sponsor (A8-M):



dilettantesteph Collaborator

With me, the reaction is very much like my reaction to wheat gluten. It isn't something you get over. It is genetic just like celiac disease. You can substitute sorghum, millet, rice, etc. It's not so bad.

Chaff Explorer

Everyone will have different reactions. Oats hit my gut hard, I feel like cement is slowly moving through me, I get dizzy and stupid and feel terrible for hours. Gluten affects me differently, but then again I may have an additional oat allergy--no idea. Theoretically it should affect you the same way gluten does, or not at all.

I assume you're eating safe oatmeal, from somewhere like Bob's Red Mill; otherwise cc can be a problem, too, and then you're reacting to oats AND gluten.

cahill Collaborator

My reaction to gluten-free oats is : pain across my shoulder blades ( upper back) much like a gallbladder attack and burning in my gut and later lower abdominal pain,

GFinDC Veteran

Same as gluten for me. C for 2 or 3 days with pain and then D. You could try eliminating oats for 6 months and then trial them again. Give your gut some time to heal and then see if they work for you.

Lady Eowyn Apprentice

Very similar to gluten - go down and form a great big brick of a lump. Bloated up, headache, constipation and depression - in fact, may have mentioned on here before that I think they make me cry (I know that sounds stupid) but they make me miserable and teary :unsure: !

The gluten free version has the same effect - maybe not quite as bad, but no good.

Won't be bothering to try them in the future.

cavernio Enthusiast

My specialist told me to avoid all oats.

Where did you get the 5% number from? Not accusing at all, I just want to know where you get your info. When I looked into it it seemed like 1 study would show most celiacs have oat issues, while another study showed that nearly all of them didn't.


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



Celiac.com Sponsor (A8-M):



Metoo Enthusiast

I had stomach cramps!!! But then I read you are supposed to avoid even gluten-free oats for the first 3-6 months of being gluten-free then reintroduce them.

I reintroduced them 4 months after being gluten-free and I have not had a problem with gluten-free oats since.

lovegrov Collaborator

Similar to gluten reaction. Can't imagine it's something you'll get over. In fact, it might get worse.

richard

jerseyangel Proficient

I get intestinal symptoms from oats--diarrhea, cramping.

megsybeth Enthusiast

Thanks, everyone. I'll definitely avoid them. Cavernio, I think I've seen 5% a few places. I'm pretty sure Peter Green's book was one of them, the most recent edition. I guess it's not so important. If it's 80% and I have issues or it's 1% and I have issues, it's better to avoid. I'll also have my son avoid

pain*in*my*gut Apprentice

I am one of the unlucky few who cannot tolerate even gluten-free oats. They make me sick the same way gluten does. Bummer!

  • 6 months later...
LenoreK Newbie

Hi,

I am having a gluten reaction I cannot track down, so am visiting gluten-free oats to see if maybe I am having trouble with them. I read the posts here and really must tell you that some of you are giving up too easily. Some foods will give you symptoms the first few times you eat them after not eating them for a while. Oats, beans, apples, nuts you all have your lists. But if you consistently eat them, and are sure they are not contaminated, often you get used to them and the bloating, serious gas issues, diminish or go away completely. Just plan ahead so maybe not plan on being in Church or a meeting right after eating them! 

But I am having the rash problem, too. I am so used to stomach problems, sometimes I don't know if I was glutened, but boy, the rash is a sure sign! Can't even sleep! FYI Along that line, I was reading up on mangoes, since I love them so much, and found people get terrible allergic reactions to the skins, trees, and they are related to poison oak or ivy, and cashews. One lady had to go to the hospital and besides Benadryl, they put her on Pepcid. I can't take that because of heart issues, but there is another prescription I take as needed for reflux, and it did help the gluten rash...it took the edge off so I could focus on something else. It was not a brain killer like Benadryl. I don't know that Benadryl even helps, but I think the reflux med did. So, if you all have a reflux medication, you might try it for the gluten reaction. Try it at least twice and see what you think. I stayed on it for about 5 days.

One more tip I discovered for cross contamination that I have not seen elsewhere: pet food! My son was feeding his cat and not where I told him too...he had dry cat food crumbs all over the place! And he used to have Cheerios until my last serious attack. Discovered his cereal dust all over, too. So, cat food goes out and we no longer bring any gluten food into the house ever again! It has taken me 4 months to get better and I am still not sure which discovery may have been the culprit. The rash is better, but I am still not back. I discovered the Gluten factor when I was 55 after contracting pneumonia and couldn't eat! I actually felt better! Well, hope these tips help someone. You all have helped me for a long time.

cahill Collaborator

. I read the posts here and really must tell you that some of you are giving up too easily. .

I can assure you (that for me) that is not the case .

cahill Collaborator

Hi,

I am having a gluten reaction I cannot track down, so am visiting gluten-free oats to see if maybe I am having trouble with them. I read the posts here and really must tell you that some of you are giving up too easily. Some foods will give you symptoms the first few times you eat them after not eating them for a while. Oats, beans, apples, nuts you all have your lists. But if you consistently eat them, and are sure they are not contaminated, often you get used to them and the bloating, serious gas issues, diminish or go away completely. Just plan ahead so maybe not plan on being in Church or a meeting right after eating them! 

But I am having the rash problem, too. I am so used to stomach problems, sometimes I don't know if I was glutened, but boy, the rash is a sure sign! Can't even sleep! FYI Along that line, I was reading up on mangoes, since I love them so much, and found people get terrible allergic reactions to the skins, trees, and they are related to poison oak or ivy, and cashews. One lady had to go to the hospital and besides Benadryl, they put her on Pepcid. I can't take that because of heart issues, but there is another prescription I take as needed for reflux, and it did help the gluten rash...it took the edge off so I could focus on something else. It was not a brain killer like Benadryl. I don't know that Benadryl even helps, but I think the reflux med did. So, if you all have a reflux medication, you might try it for the gluten reaction. Try it at least twice and see what you think. I stayed on it for about 5 days.

One more tip I discovered for cross contamination that I have not seen elsewhere: pet food! My son was feeding his cat and not where I told him too...he had dry cat food crumbs all over the place! And he used to have Cheerios until my last serious attack. Discovered his cereal dust all over, too. So, cat food goes out and we no longer bring any gluten food into the house ever again! It has taken me 4 months to get better and I am still not sure which discovery may have been the culprit. The rash is better, but I am still not back. I discovered the Gluten factor when I was 55 after contracting pneumonia and couldn't eat! I actually felt better! Well, hope these tips help someone. You all have helped me for a long time.

I have seen threads  addressing  pet food as a CC issue ,, that is why many of us feed our pets gluten free food.

VeggieGal Contributor

I was also told by my dietician to keep off them for 6 months and then reintroduce them slowly which I will be trying this week :)

Mr. GF in Indiana Newbie

I react to all prolamins except rice:  sorghum, corn, oatmeal included.  My reaction is most of the usual symptoms plus strong neuropathy returns and burns in my legs, it's quite an exacting indicator.   You can look at the research of "oats AND celiac" on pubmed.com.  I do know corn comes in hundreds...thousands....of wildly different seed genetic mixes of proteins, so it may be that some types of oats are ok for most of us, and that others aren't.  The labs running the experiments on oats, buy their oats from a special medical/scientific supply house, and it may be those oats are fine for celiacs, as a lucky coincidence, while every other oat variety and new crossbreeds...like goes into our cereals...are never tested but are toxic. 

GFinDC Veteran

Hi Lenore,

 

Welcome to the forum! (qouth the raven) :)

 

Yep, pet food can be a problem.  Them cats like to eat and then lick their fur all over so they basically are gluten coated fur bombs.  Have you read up on dermatitis herpetiformis (DH)?  That is a rash some people with celiac disease get.

 

Anyhow, good to have you here, we can use the company! :)

 

Hi,

I am having a gluten reaction I cannot track down, so am visiting gluten-free oats to see if maybe I am having trouble with them. I read the posts here and really must tell you that some of you are giving up too easily. Some foods will give you symptoms the first few times you eat them after not eating them for a while. Oats, beans, apples, nuts you all have your lists. But if you consistently eat them, and are sure they are not contaminated, often you get used to them and the bloating, serious gas issues, diminish or go away completely. Just plan ahead so maybe not plan on being in Church or a meeting right after eating them! 

But I am having the rash problem, too. I am so used to stomach problems, sometimes I don't know if I was glutened, but boy, the rash is a sure sign! Can't even sleep! FYI Along that line, I was reading up on mangoes, since I love them so much, and found people get terrible allergic reactions to the skins, trees, and they are related to poison oak or ivy, and cashews. One lady had to go to the hospital and besides Benadryl, they put her on Pepcid. I can't take that because of heart issues, but there is another prescription I take as needed for reflux, and it did help the gluten rash...it took the edge off so I could focus on something else. It was not a brain killer like Benadryl. I don't know that Benadryl even helps, but I think the reflux med did. So, if you all have a reflux medication, you might try it for the gluten reaction. Try it at least twice and see what you think. I stayed on it for about 5 days.

One more tip I discovered for cross contamination that I have not seen elsewhere: pet food! My son was feeding his cat and not where I told him too...he had dry cat food crumbs all over the place! And he used to have Cheerios until my last serious attack. Discovered his cereal dust all over, too. So, cat food goes out and we no longer bring any gluten food into the house ever again! It has taken me 4 months to get better and I am still not sure which discovery may have been the culprit. The rash is better, but I am still not back. I discovered the Gluten factor when I was 55 after contracting pneumonia and couldn't eat! I actually felt better! Well, hope these tips help someone. You all have helped me for a long time.

 

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748

    Patty6133
    Newest Member
    Patty6133
    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

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.