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Aly1

Positive Dq2 Test But I'm Already Gluten-Free. Would You Gluten Challenge Or Not?

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I haven't posted here in a long time! Hello :)

 

Long story short - I had chronic fatigue syndrome for 6 years that completely resolved after going gluten-free. I still have a lot of issues with food sensitivities, feeling lousy pretty much every day, and chronic heartburn etc so something is still going on. While getting a full workup, I asked my doc if she wouldn't mind throwing a celiac gene test into the mix, as I've always wondered (and have a daughter now, so it matters more to me). 

 

So to my surprise I just found out that I am HLA DQ2 positive. My doc says that the result, paired with the fact that I know gluten makes me so ill, she thinks it's likely I have celiac, though there's no way to know for certain. She wants me to see a GI doc to take things further (though that may be for the chronic heartburn rather than the celiac angle, I'm not sure.

 

I am weighing what I think about all this and would love some input. Doing a gluten challenge would be hell and rough on my family too (they'll have to put up with me during that whole time!). I wonder if I'd be doing some real harm, in just chasing this diagnosis, that I'd then have to spend time recovering from, following the challenge. 

 

Anyone have any thoughts they'd care to share on this?

 

Thanks!

 

PS. In my situation, should I try to find a GI doc who's known for working with celiac patients, or will any GI doc do? (And, if I should find one who specializes - what's the best way to find one?)

 

 

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Hi Aly,

You are in a hard place!

I can only offer you advice based on my own personal experience. I was formally diagnosed with celiac disease two years ago. My hubby went gluten-free per the advice of his GP and my allergist 14 years ago. After a year of mis-haps (we all know about the steep learning curve for the gluten-free diet), his symptoms resolved.

He will tell you that I have received more support from medical, family and friends. My GP easily ordered a full celiac disease panel for our kid, ordered a bone scan, etc. Insurance paid for all care related to my celiac disease diagnosis and continues to do so. My one hospital visit went well with regards to maintaining my diet (but that might have just been luck or my constant harping!). My family (just those who were symptom free) were tested and met no resistance from their doctors or insurance. My Aunt and cousin went gluten-free just before my diagnosis. They know that Gluten makes them ill. My cousin did have an endoscopy, but they did not test for celiac disease. She is mad now, but both she and her mother refuse to do the challenge. Who can blame them? Now we are all in agreement that no one goes gluten-free without a complete celiac disease panel since my TTg was negative. The tTG test is typically used as a first screening test.

So, it is a toss up. Will I continue to get better care than my hubby? Who knows?

I would try to find a celiac savvy GI based on all the comments I have read over the years on this forum if you decide to pursue a challenge.

Good luck!

I hope this helps.

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I am in a sort-of similar situation. I cut out MOST gluten several years ago when I started eating a paleo diet for general health reasons. My join pain and canker sores quickly went away. I was not strict and continued to eat wheat maybe once a month. Then I got genetic testing though 23andme and found I had both DQ2.5 and DQ8. This was a surprise, since no I have no diagnosed celiac in my family. I decided to cut gluten out of my diet completely; I had no symptoms to suggest I current had celiac, but I figured if I had no exposure, I couldn't develop celiac.

Several months later, I got sick; lots of stomach and chest discomfort, fatigue, exercise intolerance, and weight loss were my main symptoms. Eventually I had a gastroscopy. I didn't expect any celiac-type results because I was gluten-free, but lo and behold, my biopsies came back as Marsh 1. That's not a definitive result, but the other possibilities were either ruled out with other tests or were very unlikely.

I went to a gastroenterologist who told me she couldn't diagnose me definitively (my blood work was negative, as expected on a gluten-free diet). She told me I could either live as a celiac, or do the full 12-week gluten challenge and re-test. I decided that the risk of triggering a new autoimmune disease was not worth the risk. So I went all out: separated my kitchen stuff, bought new cutting boards, became that annoying person interrogating waitstaff and potluck guests. My symptoms went away. I have done a lot of other things to help my symptoms, though, so it's not totally clear that it's the gluten.

I've only had one gluten exposure that I know of since then (Lay's baked potato chips contain wheat starch!), and it didn't cause any noticeable symptoms. I don't like having to be so strictly gluten-free without knowing for sure that it's necessary, but until there's a test with a considerably shorter gluten challenge, that's what I'm doing. Otherwise it's not worth the risk for me.

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Me personally? Nope. I wouldn't. My testing came back negative because I was so sick that I honestly stopped eating, just a few bites of rice, yogurt, so basically had no gluten in my system. My diagnosis was based on my mother's & grandmother's history and my symptoms which was good enough for me. And I know if I should eat a crumb of gluten how sick I will become. So for me the answer would be no way. But everyone has to make that decision for themselves. My doctor gave me an official diagnosis of celiac in my records so I have had no problems as far as the medical field goes.

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I would go to the GI doc, but not do the gluten challenge.

Some of your issues resolved on a gluten free diet, but you are still having issues that could be symptoms for another disorder. 

My daughter is also DQ2 and DQ8 positive.  A gluten challenge when she was going through Celiac testing at the age of @ 15 months old put her in the hospital for dehydration.  (as did childhood illnesses & accidental glutening- to the point that she was hospitalized yearly until she turned 12)

 

She did very well on a gluten free diet until she was 6.  Then it was severe GERD symptoms with acid reflux vomiting up to 6 times a day.  (we really thought she was getting gluten from somewhere because it was so similar to gluten symptoms before she started the diet)  She was diagnosed with Eosinophilic Esopaghitis after an endoscopy with biopsy.  (because she was on a VERY gluten free diet there was no Celiac damage)

 

It is possible to have another issue going on.

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