Symptoms Are Worse Than Pre Diagnosis

[idlmr]

Hello everyone, 

 

I was diagnosed in early January and adopted a 100% gluten free diet, as well as trying to eat primarily whole foods. I felt pretty much completely better and my main symptom, persistent nauseation, was alleviated. I was doing very well for several weeks, when I consumed a large amount of black rice and had diarrhea for about a week (featuring undigested black rice - ew).

 

Since then, I have had increasingly intense symptoms, and a wider variety of symptoms than I was suffering pre diagnosis. I usually experience a few days where I feel almost back to normal, and then I will feel terrible as though I have been glutened for many days. I have extreme lower abdominal pain that lasts 2 - 3 minutes (worst pain I have ever experienced, I double over and want to cry out), fatigue, I feel nauseated, indigestion, passing partially digested food, diarrhea, burning in the stomach, anxiety (and anxiety driven nightmares), and heartburn. 

 

Has anyone else experienced this? What should I try? I am considering attempting to cut out fibre, or trying the SCD diet.

 

Any advice or support would be very, very appreciated. I am beginning to feel very discouraged

 

Isabella

[kareng]

You might want to keep a food log & see if you can find a different food or pattern that bothers you.

[w8in4dave]

Was the Black rice gluten-free rice? I found I can ONLY eat gluten-free rice.

[MycasMommy]

SCD worked for me.  I was still so sick even after I erased gluten from my life. I was doing mostly whole foods too!  I was still having pain and vomiting and it turns out that Besides gluten, I cannot tolerate corn.. nor ANY grains with the except of white rice (brown and black do not feel good either!). I have since then began eating int the "primal" style of Paleo. I can still make bread etc... just not with grains.

[cristiana]

I'm just wondering - might it be worth having a stool sample analysed in case there is some sort of stomach bug causing this?

 

Also - anxiety - have your iron/B12 levels been checked?  If these levels are low, it can really have an impact.

[jddh]

How were you diagnosed? How long were you feeling symptoms prior?

 

Besides a primarily whole foods diet, you might consider looking for packaged items (ie. rice) that explicitly state "gluten-free" on the package. It's likely overkill in the long-run, but in theory anything that isn't in itself a whole, unprocessed food may be subject to gluten cross-contamination. Grains such as rice are especially a candidate for that.

 

Depending on the state of your gut prior to going gluten-free, you may find that it will take some time to consistently feel better. Most folks take longer than 2 months, which I believe is where you're at now. For most people, symptoms like yours are a consequence of inflammation (as opposed to being indicative, necessarily, that you are being damaged directly by what you're eating). So while a whole-foods diet may ultimately be the right thing for you, some things that are more difficult to digest (raw vegetables, some grains) may irritate your gut for a while as you continue to heal. You might consider researching easy-to-digest foods (that are gluten-free), and try those for a while as you give your gut time to heal.

 

Hang in there! It can be frustrating to not find immediate relief. Keep in mind that your body might not give you the best response about what diet works for you in the long term until your gut is healed. 

[idlmr]

Thank you all for the responses! I am starting a food diary and sticking to legal items on the SCD list until my symptoms subside. Thank you for pointing out the rice contamination issue - definitely could be a source of the problem. I will have my vitamin levels checked when I can, for now I'll be consistent with supplements. I also found out today that NSAIDs are detrimental to celiacs and i was previously using them often for back pain. I was diagnosed by blood test and previous to that my primary symptom was nausea.

[jddh]

You’ll read this often in this forum, but it’s worth keeping in mind that the “gold standard” for diagnosing celiac disease is with an endoscopy/biopsy. A positive blood test without a biopsy doesn’t always mean 100% guaranteed celiac disease (though if your TTG numbers are especially high, it’s quite likely).

 

If the months go by and you’re still not feeling better, you might want to keep this in mind, in case celiac disease isn’t in fact your problem. HOWEVER: you need to go back to eating gluten for several weeks prior to the endoscopy. They need to see what you look like with gluten in your diet. I know that’s a dreadful thought to resume eating gluten, but there are huge benefits from getting a confirmed diagnosis. Getting biopsied now also gives you a “baseline” for later, ie. they’ll see current damage from eating gluten, and 12 months later, after sticking to a gluten-free diet, they can look again and confirm that you’re healing. This is really important for recovery and avoiding complications later.

 

My primary symptom is nausea too, and I’ve been dealing with that for months and months after discovering my diet wasn’t as 100% gluten free as I thought. So I can certainly empathize. Feeling sick all the time is the pits. I have a different thread going for nausea relief if you’re interested.

[Cara in Boston]

It is not uncommon for people's symptoms to change over time and for them to be more intense after being gluten free.  The longer you are gluten free, the more sensitive you become and the more intense your symptoms become.  My son had ZERO symptoms (except for a behavior change) when he was diagnosed three years ago.  Now he gets stomach pain and vomits right away . . generally feeling unwell for about a week and then joint pain and fatigue for about a month.  It's like he has a bad case of the flu and it takes his body weeks to recover.

 

I used to have all the classic symptoms.  Now I get a brief upset stomach followed by weeks of fatigue, insomnia, anxiety, brain fog, and joint pain.  

 

It is weird how your immune system works.

 

I wouldn't cut anything else out of your diet.  I would focus on making sure you were actually 100% gluten free.  Take into account cross contamination, things like that.

[blueshades]

Definitely cut the fibre! I got addicted to brown riceonce ... 2 small serves a day and after a few days i noticed bloating and all related issues and i felt awful! After i realised i was taking too much fibre and stopped i felt much better. 

I have learnt to cook fresh produce myself and never buy any packaged items not labeled gluten free! When i let things slide i always feel sick. It's such a hard life to be so careful

Cross contamination is really bad for me. I get headaches nausea and bloating. Also check vitamins. I took a vitamin recently and assumed no wheat involved although it didn't state no gluten on the bottle. I felt so sick after a few days of taking. I contacted the brand who told me they grew the bacteria stuff on gluten... so yeah read labels like no tomorrow! don't buy anything not labeled gluten free!

I just hoarded a bunch of black rice and am now concerned about it too! Oh no