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.

  • 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. - cristiana replied to Scatterbrain's topic in Sports and Fitness
      5

      Feel like I’m starting over

    2. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

    3. - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

    4. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,297
    • Most Online (within 30 mins)
      7,748

    Pam PA
    Newest Member
    Pam PA
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
×
×
  • 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.