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

New To All Of This


LyndaK

Recommended Posts

LyndaK Rookie

:( Ugh. This all seems overwhelming right now for me. I have been told that I have allergies to wheat and rice (but not oat). I have had the celiac sprue blood test last week but don't know yet but am also going in for a colonoscopy this Thursday.

If I test negative, can I have oat?

What are my best bets for gluten-free and rice free?

Thanks a bunch!!!!


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



Celiac.com Sponsor (A8-M):



Rikki Tikki Explorer

Welcome Lynda:

For me gluten free also means oat free as I have gotten quite sick eating oats. If your test comes back positive I would stay away from the oats. I am not sure on the rice. It can be very overwhelming, just take it slow and be sure to read labes carefully. If you do not have celiac and are allergic to rice and wheat those are fairly easy to watch for on the labels.

Anyway, just wanted to say welcome.......

LyndaK Rookie

This is all new to me. I have just been told that I have allergies to wheat and rice (but not oat). I have had the celiac sprue blood test... don't know yet. But I am also going in for a colonoscopy this Thursday.

If my test comes back negative, can I have oat?

What are my best bets for gluten-free and rice free?

Thanks a bunch!!!!!

GreySaber Apprentice

There's better people here then me to answer your questions, but I'll toss out a few things until they show up to tide you over. ;)

With oats, we don't really know if oats would be alright, the trouble is that oats are almost always testing positive for gluten, but that's due to cross contamination with other things. They might be ok if you could get safe organic oats, but even if you could, we wouldn't be sure.

flagbabyds Collaborator

Oats make me violently ill, no matter what, even if they say they are gluten-free.

JUst read labels, I have no idea about rice I basically live on it...

sorry

Ursa Major Collaborator

Why are you having a colonoscopy? It is not a useful tool for diagnosing celiac disease, you would need an endoscopy for that, with biopsies taken from about six sites.

Also, gluten free doesn't just mean wheat free, but you'd have to stop eating rye and barley as well, and yes, oats, and everything that is made with those grains.

ladyx Newbie
:( Ugh. This all seems overwhelming right now for me. I have been told that I have allergies to wheat and rice (but not oat). I have had the celiac sprue blood test last week but don't know yet but am also going in for a colonoscopy this Thursday.

If I test negative, can I have oat?

What are my best bets for gluten-free and rice free?

Thanks a bunch!!!!

colonoscopy is for crons or colon polops in your lower gi tract... biopsys should be take from your upper gi through your stomach... I too think oats are bad...when I read that some oats were ok I was excited. I gave my son who is supper sensetive to gluten, some gluten-free oat cookies that stated no cross contamination...he threw up for two days...couldn't even keep water down.....even when nothing was in his stomach he threw up his own gastric juices...my mom who is a nurse asked what in the world I was thinking...that oats is one of the highest sources of gluten you can find so I am not sure I believe all this hipe about oats beeing ok. As far as flours go there are a couple dozen kinds of flours you can try that are wheat and rice free...potato, tapioca, millet, buckwheat, arrowroot, dare I say soy around here, garbonzo bean, corn ect.

Well, good luck with all your tests and if they all come back negitive you might want to get a second opinion from a doctor who actually knows which in to stick the scope in in order to do your tests lol.


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



Celiac.com Sponsor (A8-M):



Guest schmenge
This is all new to me. I have just been told that I have allergies to wheat and rice (but not oat). I have had the celiac sprue blood test... don't know yet. But I am also going in for a colonoscopy this Thursday.

If my test comes back negative, can I have oat?

What are my best bets for gluten-free and rice free?

Thanks a bunch!!!!!

I'm not sure I have any exact answers, but at least my response will push this post back to the top of the list. :)

From what I have read you can have a wheat allergy, be gluten intolerent or have Celiac. These are three seperate things. A blood test can not conclusively tell you that you do not have Celiac. I don't think the colonocopy will tell you this either, that would take an upper GI.

Oats are typically cross contaminated by wheat (the oats themselves are not bad) and hence most people avoid them. You can find oats that are processed in plants that do not process wheats. If it turns out that you do not have Celiac, only the wheat/rice allergy you will not need to avoid foods with gluten, only the foods with wheat and rice. You'll still need to to a lot of label reading!

darlindeb25 Collaborator

Lynda, you must also realize that even doctors mis-speak. Some call gluten intolerance a wheat allergy and it's not the same thing. An intolerance is nothing like an allergy. The reactions are completely different. I saw a new doctor at the office I go to and was telling him I have celiacs and he says to me, "So does my son, he can't have barley, it makes him so ill." I knew at that moment that this doctor had no idea what he was talking about. His son may have a reaction to barley that is different then wheat and rye, but he still can't have any of them. I didn't use to react to barley, but I still couldn't have it. Unfortunately, we can't trust the medical community to truly understand gluten intolerance or celiacs as of yet. The best info you will get will be in these forums from the people who actually have this disease, the ones who deal with it on a daily basis, not the doctors or even many dieticians, they don't always understand either. Celiacs and gluten intolerance is a very sneaky disease--try going gluten free and see how you feel. Deb

LyndaK Rookie

Thanks for all your input. I called my doctor today and asked if a colonoscopy was the correct thing to do or an endoscopy (I told her the patient of hers even recommended it- along with this site). But she still wanted it done. And of course, I forgot to ask why- I was at work at the time.

I'll let you all know what the results are. Thanks!!!!

JKJ Newbie

Hi -- I also have been sent for a colonoscopy to rule out Celiacs . (that's what the order said)

Then the specialist had me have a "celiac Screening" blood test . What tests that amounted to I don't know - it simply said on the order "Celiac Screening" -

I am beginning to suspect that it was just a good reason for my Family Dr. to get me in for a colonoscopy which she has been trying to do. It is being done after just 8 weeks back on Gluten . The specialist claims he will be able to see if I have celiac damage in that time ??? the blood testing came back negative after being on wheat/gluten for just 4 weeks.

Now I'm thinking I don't like my GI dr any better than I have been liking my family Dr. :)

How come He is the only one who thinks he can diagnose Celiac with a colonoscopy??

Also - I have not had the terrible repercussions that I had for 7 weeks last summer (D!) since being on wheat again . I wonder - does that mean I don't have Celiac D.?

Oh such a complex thing this is - for sure!

JKJ

ladyx Newbie
Thanks for all your input. I called my doctor today and asked if a colonoscopy was the correct thing to do or an endoscopy (I told her the patient of hers even recommended it- along with this site). But she still wanted it done. And of course, I forgot to ask why- I was at work at the time.

I'll let you all know what the results are. Thanks!!!!

I had a colonoscopy before I was diagnosed for celiac because they thought I had crons. My Gi told me that everything was fine and that I only had IBS...if celiac could be diagnosed that way I think she could find it...since she is in the same group as my sons pediatic GI who is the leading celiac GI in my area. When I asked him if I needed an endoscopy since I just had a colonoscopy he said yes and that you can't tell if you have celiac from a colonoscopy and I beleive him becasue around here they call him the celiac doctor...when we went to the lab at the children's hospital to get our family blood drawen after Leo was diagnosed they practically rolled there eyes and said oh, Dr. Devoid sent you didn't he. I think you should really find a doctor who knows which test to give you...and good luck!

LyndaK Rookie

So today was the day. I went in for my colonoscopy and while I was there I convinced the doctor to do an endoscopy on me too considering that there was a chance my blood test could come back with a false reading. He agreed with my logic and did it!!! Plus I figured I didn't want to go through all the prep again and pay for the "rent of the room" expenses again.

My blood test came back negative. The doctor could not see anything obviously wrong during the endo. or the colonoscopy. But he took stuff from both ends to get bio-oped to rule out celiac or colitis. Those results will take 3 weeks. Until then, my doctor said to continue on my gluten-free diet or at least wheat free.

Thanks for all your help, encouragement and prayers. No matter the outcome, I will for sure use this site to help me with my new diet.

Lynda

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. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    2. - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      48

      Supplements for those Diagnosed with Celiac Disease

    3. - nanny marley replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      20

      Insomnia help

    4. - David Blake commented on Scott Adams's article in Product Labeling Regulations
      1

      FDA Moves to Improve Gluten Labeling—What It Means for People With Celiac Disease

    5. - nanny marley replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      nothing has changed

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

    • Total Members
      133,343
    • Most Online (within 30 mins)
      7,748

    emoryprose
    Newest Member
    emoryprose
    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

    • asaT
      plant sources of calcium, such as spinach, have calcium bound to oxalates, which is not good. best source of calcium is unfortunately dairy, do you tolerate dairy? fermented dairy like kefir is good and or a little hard cheese. i do eat dairy, i can only take so much dietary restriction and gluten is hard enough! but i guess some people do have bad reactions to it, so different for everyone.  
    • asaT
      i take b12, folate, b2, b6, glycine, Nac, zinc, vk2 mk4, magnesium, coq10, pqq, tmg, creatine, omega 3, molybdnem (sp) and just started vit d. quite a list i know.  I have high homocysteine (last checked it was 19, but is always high and i finally decided to do something about it) and very low vitamin d, 10. have been opposed to this supp in the past, but going to try it at 5k units a day. having a pth test on friday, which is suspect will be high. my homocysteine has come down to around 9 with 3 weeks of these supplements and expect it to go down further. i also started on estrogen/progesterone. I have osteoporosis too, so that is why the hormones.  anyway, i think all celiacs should have homocysteine checked and treated if needed (easy enough with b vit, tmg). homocysteine very bad thing to be high for a whole host of reasons. all the bad ones, heart attack , stroke, alzi, cancer..... one of the most annoying things about celiacs (and there are so many!) is the weight gain. i guess i stayed thin all those years being undiagnosed because i was under absorbing everything including calories. going gluten-free and the weight gain has been terrible, 30#, but i'm sure a lot more went into that (hip replacement - and years of hip pain leading to inactivity when i was previously very active, probably all related to celiacs, menopause) yada yada. i seemed to lose appetite control, like there was low glp, or leptin or whatever all those hormones are that tell you that you are full and to stop eating. my appetite is immense and i'm never full. i guess decades or more ( i think i have had celiacs since at least my teens - was hospitalized for abdominal pain and diarrhea for which spastic colon was eventually diagnosed and had many episodes of diarrhea/abdominal pain through my 20's. but that symptom seemed to go away and i related it to dairy much more so than gluten. Also my growth was stunted, i'm the only shorty in my family. anyway, decades of malabsorption and maldigestion led to constant hunger, at least thats my theory. then when i started absorbing normally, wham!! FAT!!!    
    • nanny marley
      Great advise there I agree with the aniexty part, and the aura migraine has I suffer both, I've also read some great books that have helped I'm going too look the one you mentioned up too thankyou for that, I find a camomile tea just a small one and a gentle wind down before bed has helped me too, I suffer from restless leg syndrome and nerve pain hence I don't always sleep well at the best of times , racing mind catches up I have decorated my whole house in one night in my mind before 🤣 diet changes mindset really help , although I have to say it never just disappears, I find once I came to terms with who I am I managed a lot better  , a misconception is for many to change , that means to heal but that's not always the case , understanding and finding your coping mechanisms are vital tools , it's more productive to find that because there is no failure then no pressure to become something else , it's ok to be sad it's ok to not sleep , it's ok to worry , just try to see it has a journey not a task 🤗
    • nanny marley
      I agree there I've tryed this myself to prove I can't eat gluten or lactose and it sets me back for about a month till I have to go back to being very strict to settle again 
    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
×
×
  • 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.