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Mini Test From A Newbie

kalikohl

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kalikohl Rookie
kalikohl
Posted

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
Karen B.
Posted

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
gfpaperdoll
Posted

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
sneezydiva
Posted
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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    • Scott Adams
      Test interpretations

      By Scott Adams · Posted

      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Test interpretations

      By trents · Posted

      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
    • suek54
      Need advice for some relief!

      By suek54 · Posted

      Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally get a proper diagnosis? Sue  
    • MicG
      Test interpretations

      By MicG · Posted

      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
    • trents
      Test interpretations

      By trents · Posted

      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
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