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Mini Test From A Newbie


kalikohl

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kalikohl Rookie

Quick Background- I have had Crohn's Colitis since Summer of 2005. Recently I've had a few things that are making me and my doctor think I may have C.D.

So today I decided to do a mini-test. I ate nothing with gluten. Applesauce, celery with hummus, shiska-bobs and brown rice and a tofutti ice cream dessert. And I actually feel human. I'm not super tired, I didn't have a bad headache, and like my stomach isn't super swollen.

Is this normal? Do you really feel better like right away or am I grasping at straws?

thanks for any info you can provide.


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Karen B. Explorer

You might find this interesting:

Celiac Disease Prevalence High in Patients with Crohn's Disease

https://www.celiac.com/st_prod.html?p_prodi...-39107055035.eb

Sounds to me like your body had a day without fighting a gluten reaction and it's letting you know it likes gluten-free. Did you also notice there was no dairy in the foods you mentioned? Gluten may not be your only issue.

If you intend to be tested for Celiac, don't go gluten-free until after the test. Going gluten-free before the test can yield a false negative. If I were you, I'd be on the phone to my doc tomorrow.

Congrats on figuring it out!

gfpaperdoll Rookie

yes, a lot of people feel better after a day or two gluten-free.

Re Crohns: From my support group: There is a lady vet that worked with another vet that had celiac. She started baking gluten-free birthday cakes so that he & his celiac daughter could eat the cake.

She did this for several years, then 5 years ago she went into the gluten-free cake business (& wow is she ever good at it). she built a kitchen in her house completely gluten-free, did a bunch of research & would come to our support meetings to bring samples & pass out her business card.

I was picking up some cakes at her vet office & was talking to her & found out that she had crohns I encourged her to get tested thru enterolab.com She got tested & was positive has a DQ2 & a DQ8. She went gluten-free & guess what she does not have crohns anymore. She thanked me a couple of times for talking her into getting tested. I could not believe how much she knew but never got herself tested. She said on day 4 she felt like a whole new person. & of course she said she is studying a lot more now that it is so personal. Not sure what her family is doing at this time. but she is definitely gluten-free & attending all our meetings. Of course she always gives me extra cake to take home!! :) She is also in the process of tearing out the old gluten kitchen & making one huge gluten-free kitchen.

sneezydiva Apprentice
Is this normal? Do you really feel better like right away or am I grasping at straws?

thanks for any info you can provide.

I have been asking myself this very same question. My blood tests for Celiac Disease were negative even though I ate gluten before the test. But I went 2 days gluten free and felt pretty good. Then I went 4 days gluten free and felt great. Then I went 2 more days, was feeling pretty good and intending to go longer, but was at a party and ate some gluten. Today I woke up achy and have been on the toilet on and off all morning. (Sorry hope that isn't TMI).

Without an official diagnosis, I think I needed to keep testing it to know for sure it wasn't a placebo effect and all in my head. Now I'm committed to really doing it. But suffice it to say, the relief you felt for just one day is very real.

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    • trents
      @cristiana, I'm thinking the intensity of our response to the same amount of gluten can vary from time to time. Our bodies are a dynamic entity. 
    • Scott Adams
      I'm going to try Jersey Mike's soon--we have one nearby. Thanks for sharing!
    • cristiana
      Hi @trents Two things can happen:  1/ For a very small gluten hit, I will get a slightly sore stomach for a few days, maybe a day or two following the glutening, and (TMI warning) maybe slightly loose BMs with mucus  for a couple of days.  2/ For a substantial glutening, and thankfully it's only happened once in recent years,  I get bad chills, followed by vomiting, and my heartbeat is all over the place and I can hardly stand.  It's pretty extreme.  That happens within about 2 hours of eating the gluten.  I might feel slightly dizzy for a couple of days after the glutening episode. Interestingly I've just been out to a cafe which hitherto has made a big thing about how their french fries are cooked in a separate fryer.  I shared some with a friend and they were served with chilli sauce, jalapenos, cheddar cheese and fried onions.  Definitely not health food!  Anyway,  I'd eaten half when I realised I'd not checked the menu to ensure that this dish is still gluten-free - and it turns out it isn't!!!  They've changed the ingredients and the fried onions are now cooked with wheat.   I came home expecting to feel dreadful as I had no idea how much gluten I have consumed but so far if anything I feel just little queasy.  I think I'd have thrown up by now had there been a lot of gluten in the onions.  
    • trents
      It might be wise to start him on small amounts and work up to 10g. Monitor how he reacts. Some people simply cannot complete the gluten challenge because it makes them too ill. By the way, you can buy powdered gluten in health food stores, at least here in the states you can. With a food scale, it would be easy to measure the amount being consumed in a day. I'm not sure what the intensity of reaction to gluten tells you about what's actually going on with regard to celiac disease. I mean there are some celiacs like me who don't seem to react to minor exposure amounts but who get violently ill with larger exposures. Then there are celiacs who get some kind of reaction to even the tiniest amount of exposure but don't necessarily get violently ill. And how the reaction manifests itself is very different for different people. Some, like me, experience emesis and diarrhea. Others just get brain fog. Others get joint pain. It's all over the map.
    • melthebell
      That's interesting - that's a lot of gluten! I'll be very curious to see how my son responds to the gluten. In some ways, I guess having a strong reaction would tell us something? It's tough navigating this as a parent and having it be not so clear cut ;\
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