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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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    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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