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Grateful I Think?


kledford

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kledford Rookie

Ok, so since May 1st I have been gluten-free...well yesterday I made the mistake of buying the wrong MI-DEL gingersnaps from the Healthfood store and after eating 2 1/2 cookies I happened to glance and ORGANIC NOT gluten-free! So I think ok, well brace yourself and put your day on hold.....reaction time! Well, nothing happened...and still hasn't. None of the awful things that I read about, although I was asymptomatic prior to DX I was thinking that being gluten-free for 8 weeks I would have a reaction. Now I am grateful but fearful at the same time, how will I know if this accidently happens in the future? I am OF COURSE going back and will resume by gluten-free life but I live in fear because my dr told me that for every wheat ingestion I have I set myself back appx 2 months in my recovery! So am I back at square one???? I am SO confused still! and apprehensive that I am not doing this right. I doubt everything that goes into my mouth. BTW I repeated my bloodwork on Monday and I am more anemic than when I started so you can see my fears are valid......Please some good sound advice from someone that has been there!


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Takala Enthusiast

This is why I really do not like my area's newest Whole Foods store, because they scatter- shotted the gluten free items in with the non gluten free items all over the store, deliberately to slow down the shopping speed. And I've seen the two types of gingersnaps right next to each other on the shelf.

No, you haven't set yourself back to "square one," people's reactions vary. Doctors have to scare many people to get them to comply with diet advice, they don't realize that most celiacs and gluten intolerants with bad reactions really don't like cheating because they feel so badly afterwards it is not worth it. It's like built - in aversion therapy.

We've all had accidental glutenings. It happens. Just continue to be as careful as you can.

Re: the anemia, if you are not taking a gluten free B vitamin complex, you should be, as well as a multivitamin, calcium, D, magnesium.... try also taking some blackstrap molasses and cooking in a clean, dedicated cast iron pan, to get more iron. All these nutrients interact.

kareng Grand Master

Thanks for the heads up on that. I didn't know they made gluteny ones too. The gluten-free ones make the best pumpkin pie crust!

I don't think you set yourself back 2 months, maybe 2 weeks, Once you are healed, even if you feel bad, the intestines should heal quickly. The doc may not know or may even be saying that to scare you so you don't cheat every Saturday.

Skylark Collaborator

That happened to me once. I ate a wheat cracker when I got the wrong thing and had no reaction at all. I was shocked since I've reacted to shared fryer CC in the past. My doctor tells me that people's sensitivity to gluten can really change, and you can have more and less sensitive periods.

Don't be so frightened. There are plenty of studies on celiacs healing gluten-free yet EVERYONE on a gluten-free diet makes mistakes. There is no way all the people in the studies who healed did a perfect job on the diet becasue as you're learning it's almost impossible. The ones who don't heal are the ones who admit to cheating regularly.

Sure you might have set yourself back a little but just go back to doing your best and you'll be fine.

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    • Scott Adams
      If your tTg-IgA was 28 and positive is at 3, you are nearly 10x over the positive marker, so the most likely explanation by far would be celiac disease. I also do not understand why your doctor would not want to run the blood test, which is the normal first step in the diagnosis process.
    • 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. 
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