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Trouble With Healing - Could It Be Celiacs?


Energy Seeker

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Energy Seeker Newbie

I have been struggling with my energy levels since I was 17. I've been on iron pills on and off since (I don't care for the constipation and try to get iron from broccoli and other veggies). I have always been very active and am currently playing at a high level of ultimate frisbee and thought the low energy levels was a result of my active lifestyle.

In my fourth year of university I was told I have acid-reflux disease. I've taken nexium twice, (2 month stints) it stopped the esophagus scarring heartburn but still have some serious upset stomachs. I have stopped eating spicy/starchy/sugary foods to control my heartburn.

After a meal I would get so fatigued I could fall asleep sitting in my chair before dessert was even served. At first I thought it was the potatoes because they are so high in starch, so I stopped eating them.

Last summer A friend of mine was diagnosed with celiacs and explained her symptoms so I went and got tested but the blood test came back negative. Regardless of the negative results I decided to cut bread out of my diet completely because of the "explosions in my intenstines" after I ate it.

My parents are irish and dutch, my mom (irish) also has trouble eating wheat.

In august I sprained my ankle and the swelling never subsided. My phsio can't explain the inflammation and constant irritation I'm experiencing because normally in a sprain that would have subsided by now. I am worried that if I have celiacs eating gluten is affecting the healing process for my ankle, is this possible?

I have been on a gluten-free diet for 1 week now and have dropped one dress size, at a time where my physical activity is at an all-time low due to my ankle injury.

Since I've already have a negative blood test I don't want to adapt a gluten-free lifestyle unless I know for sure I have celiacs. I also suspect I have other GI problems which would be easier identified if I knew whether or not I had celiacs.

Any advice?


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gfgypsyqueen Enthusiast

Entero Labs might be a lower cost option for getting a celiac test without the scope.

I've tested blood negatve, biopsy positve to Celiacs. Always had shockingly low iron and gastro problems of all sorts. Some celiacs never get an official diagnosis-the blood work is questionable and the biopsy never showed enough damage to call it celiacs. You may be in that group. Stick to the gluten-free diet and see how you feel. After a few months, maybe earlier, you shoudl have a noticable reaction to gluten if you are a celiac.

Good luck

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    • trents
      Let me hasten to add that if you will be undergoing an endoscopy/biopsy, it is critical that you do not begin efforts to reduce gluten beforehand. Doing so will render the results invalid as it will allow the small bowel lining to heal and, therefore, obscure the damage done by celiac disease which is what the biopsy is looking for.
    • Scott Adams
      This article, and the comments below it, may be helpful:    
    • Scott Adams
      That’s a really tough situation. A few key points: as mentioned, a gluten challenge does require daily gluten for several weeks to make blood tests meaningful, but negative tests after limited exposure aren’t reliable. Dermatitis herpetiformis can also be tricky to diagnose unless the biopsy is taken from normal-looking skin next to a lesion. Some people with celiac or DH don’t react every time they’re exposed, so lack of symptoms doesn’t rule it out. Given your history and family cancer risk, this is something I’d strongly discuss with a celiac-experienced gastroenterologist or dermatologist before attempting a challenge on your own, so risks and benefits are clearly weighed.
    • Greymo
      https://celiac.org/glutenexposuremarkers/    yes, two hours after accidents ingesting gluten I am vomiting and then diarrhea- then exhaustion and a headache. see the article above- There is research that shows our reactions.
    • trents
      Concerning the EMA positive result, the EMA was the original blood test developed to detect celiac disease and has largely been replaced by the tTG-IGA which has a similar reliability confidence but is much less expensive to run. Yes, a positive EMA is very strong evidence of celiac disease but not foolproof. In the UK, a tTG-IGA score that is 10x normal or greater will often result in foregoing the endoscopy/biopsy. Weaker positives on the tTG-IGA still trigger the endoscopy/biopsy. That protocol is being considered in the US but is not yet in place.
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