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

This Ain't Easy...


super-sally888

Recommended Posts

super-sally888 Contributor

Hi -

After one week of gluten free (I got some soya sauce one day which did have an itch response)... I ate a brownie today.... kind of accidentally... I usually have a brownie at this coffee place I go to... asked for one and was two bites down before I remembered I shouldn't have this... then considered what the heck!!!! And finished it...

Thought I had gotten away with it - and was even doubting my self-diagnosis - for several hours... but now I am itching to high heaven and coming out in lumps... I don't know what else it could be - nothing else different today from all week..

Geez! Gotta be on the ball all the time... Can't just not think and eat! This is going to be a challenge. At least I am being convinced that this really could be gluten..

It seems that when one starts avoiding gluten, one actually gets more sensitive to it when one eats it...

Emptied my cupboard today. Gave away a heap of really great pasta (I am a packrat). Haven't checked all the cans yet...

Am experimenting with rice... have a great combination: brown rice, red rice, black rice - mixed together. Is kind of nutty. Delicious and very filling. Highly recommend it. And gotta be more nutritious than the white stuff.

Any comments on oats. Are they ok or not. Some references say yes. Others say no. Guess I could try the "Itch" test... still have an open packet that can't be given away..

Hope you all had a great weekend.

Sally


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



Celiac.com Sponsor (A8-M):



Guest cassidy

I wouldn't do the itch test anymore. I think you have figured out that gluten is what is causing your problems. I don't know how itchy you get or if you have any other symptoms, but gluten makes me feel so crappy I would never, ever eat it.

I think the biggest issue with oats is cc. During the manufacturing process they often come in contact with gluten. I wouldn't recommend trying them, especially not in the beginning.

It is good that you are cleaning out some food. It does take a while to get the hang of this, but hopefully you will stop itching. You may find you have other symptoms that you don't even realize are due to gluten. I used to have to pee all the time and it went away when I went gluten-free. I didn't even realize it was odd to pee all the time, until I stopped doing it. Gluten does strange things to our bodies.

tarnalberry Community Regular

the fact that you react by itching makes me worry that you have a true allergy, which you should *not* test. allergies can, and do, get worse with exposure occasionally, and it's not worth the risk.

as for oats and celiac...

1) all commercial oats are contaminated at levels higher than the CODEX standard of 200ppm, even McCanns. there are at least three brands of specialty oats you can buy grown, processed, and transported to be gluten free, but they are expensive and difficult to get ahold of.

2) according to lab studies, aproximately 10% of celiacs react to PURE oats (the protein in oats itself, avenin) with intestinal damage equivalent to that caused by wheat. there is no test to take that will tell you ahead of time if you are one of these celiacs.

mamaw Community Regular

My suggestion is to go slowly for a few months & become a gluten spy, adding a few new things at a time that you know for sure is gluten-free.....I think we all have done some dumb things when first getting started on this diet.....

It does get better & easier as time rolls along.....I eat the gluten-free oats several times a week. With the oats you need to go very slowly !/4 cup at first....and I wouldn't try only the gluten-free brands....I also agree that maybe that isn't a good idea to try them at this point. Let your body heal alittle first... I waited for two years before taking the big step. We all respond differently to foods as our bodies are so unique so I think everyone must use common sense . I don't react as violently as some do... I free lucky in that regard....

blessings

mamaw

super-sally888 Contributor

Thanks everyone. Your input is really useful. Will give away the oats... :)

Actually, I didn't realise that itching was an issue, until I saw this forum a week ago, and went for the past week without being as itchy as usual.. though today am still VERY itchy and scratching ...

Have been extra itchy for the past months - I just put it down to pollution / seasonal allergies (and I know I am allergic to dustmites, and dogs and cats and I have two of each - I seem able to tolerate my own pets for some reason (though I keep them very clean and don't handle the cats too much) but not other people's)... it started off with just feet being crazy itchy (someone here mentioned wanting to grind them into the roughest carpet she could find), then moved to low back and now is everywhere, particularly trunk, face,....

I guess this is something I should mention to my Dr when I see him in two weeks time... I didn't actually think of it as a symptom of something... maybe need to rule out other causes as well...

Not fair that I can go this far in life (36 years) and now start having all these problems.. Trigger? Emotional stress??? Been having enough of that. But am dealing with it! Maybe too late!

Thanks again! Am really glad I found this forum.

Have a nice day.

Sally

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. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      30

      My journey is it gluten or fiber?

    2. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    4. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

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

    • Total Members
      132,823
    • Most Online (within 30 mins)
      7,748

    Kayaker
    Newest Member
    Kayaker
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
×
×
  • 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.