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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Why Don't I Feel Better?
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5 posts in this topic

Two years ago when I started college (extremely stressful time, plus huge dietary change, went from extremely healthy food to crappy dining hall food) I began having extreme stomach issues and I lost 15 pounds. Around the same time I started anti-depressants, a couple months later I was put on ADD meds. About a year ago I finally went to a doctor who tested me for thyroid issues and celiacs. The blood test came back negative but he told me to try gluten free anyway. I tried halfheartedly and never made it more than a day without forgetting and eating something with gluten. I ended up gaining the weight back plus a little more over several months. As my symptoms got worse I went off my anti-depressant (celexa) and birth control (depo shot) and reduced my ADD meds (adderal) thinking maybe I was having a reaction to my medication. My symptoms got worse. Two weeks ago I finally went completely gluten free. My stomach problems have completely gone away but I am still so tired. Shouldn't the extreme fatigue have eased a little bit? I still have the vast majority of my symptoms except the stomach issues. I'm not sure I have celiacs because the blood test came back negative and because the symptoms aren't going away or easing. Could it be something else? Does anyone have suggestions on getting energy back? 

 

List of Symptoms: 

  • liquid diarrhea every day
  • nausea  
  • stomach pain
  • extreme fatigue, I can sleep 18 hours and still feel like I haven't slept in weeks, drink a double espresso and fall right asleep
  • depression/irritability/anxiety
  • low sex drive, got a little better off the medications
  • brain fog (hence the ADD meds)
  • headaches 
  • my long thick hair is now brittle and thin
  • when I exercise, even just walking fast my bones in my legs ache
  • I look like complete shit, bags under my eyes, my skin is tired looking
  • Puffy bloated stomach that never seems to flatten 
  • I also haven't had my period in two years, about a year and a half because of the depo but it's been like three months since I should have gotten my next shot and I still haven't gotten my period back (I'm not pregnant though, I've taken like ten tests and continue to test every couple weeks)

I'm 20 years old (female), I've always been thin. I was 5'6' and 120 for several years then I went down to 105 in like two months, Now I'm 128. I was athletic as a child but not so much since then. Right before all the symptoms I was working out and going to boot camp and in the best shape of my life and then KABOOM! 

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I am sorry that you've been feeling so poorly. Those are symptoms of gluten intolerance (or celiac disease - they have pretty much the same symptoms) so hopefully you'll feel better soon.

Many people find they go through a withdrawal when they cut gluten out of their diets. I felt extra tired, headachey, and grumpy during the first three weeks. My intestinal issues improved during that time but overall, I would say that I felt worse.

Give the diet more time. Some improvements can take a few weeks or even months to happen. I would give the gluten-free diet the whole summer before you discount it.

Best wishes.

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chatoyance,  

as you may have read here, many people do a Celiac panel of about 3 tests and they come back positive only to one test.

Some doctors only give the tTG test but it comes back negative but others test positive for the DGP tests.

So I don't know if you'd remember what your Celiac test was.

I hope I'm not confusing you.

 

When I went gluten free, my pains came back in the next months. 

At first I thought it was caused by hidden gluten but I later realized I had other food sensitivities which were confirmed when I did a food intolerance blood test.

So you may intolerant to proteins in Milk and beans and eggs as well as wheat or gluten.

Note too that there is gluten added to lots of foods like hot dogs.

 

Good luck.

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Two years ago when I started college (extremely stressful time, plus huge dietary change, went from extremely healthy food to crappy dining hall food) I began having extreme stomach issues and I lost 15 pounds. Around the same time I started anti-depressants, a couple months later I was put on ADD meds. About a year ago I finally went to a doctor who tested me for thyroid issues and celiacs. The blood test came back negative but he told me to try gluten free anyway. I tried halfheartedly and never made it more than a day without forgetting and eating something with gluten. I ended up gaining the weight back plus a little more over several months. As my symptoms got worse I went off my anti-depressant (celexa) and birth control (depo shot) and reduced my ADD meds (adderal) thinking maybe I was having a reaction to my medication. My symptoms got worse. Two weeks ago I finally went completely gluten free. My stomach problems have completely gone away but I am still so tired. Shouldn't the extreme fatigue have eased a little bit? I still have the vast majority of my symptoms except the stomach issues. I'm not sure I have celiacs because the blood test came back negative and because the symptoms aren't going away or easing. Could it be something else? Does anyone have suggestions on getting energy back? 

 

List of Symptoms: 

  • liquid diarrhea every day
  • nausea  
  • stomach pain
  • extreme fatigue, I can sleep 18 hours and still feel like I haven't slept in weeks, drink a double espresso and fall right asleep
  • depression/irritability/anxiety
  • low sex drive, got a little better off the medications
  • brain fog (hence the ADD meds)
  • headaches 
  • my long thick hair is now brittle and thin
  • when I exercise, even just walking fast my bones in my legs ache
  • I look like complete shit, bags under my eyes, my skin is tired looking
  • Puffy bloated stomach that never seems to flatten 
  • I also haven't had my period in two years, about a year and a half because of the depo but it's been like three months since I should have gotten my next shot and I still haven't gotten my period back (I'm not pregnant though, I've taken like ten tests and continue to test every couple weeks)

I'm 20 years old (female), I've always been thin. I was 5'6' and 120 for several years then I went down to 105 in like two months, Now I'm 128. I was athletic as a child but not so much since then. Right before all the symptoms I was working out and going to boot camp and in the best shape of my life and then KABOOM! 

Time, not something I would have wanted to hear at 20.  But that is the only thing to help.  Perhaps some yoga, to take the best care of yourself that you can.  remember that many of your symptoms are likely from being malnourished, the healing of your gut will help with that, but not immediately.  Get tested for def. and supplement accordingly.

And...patience....Good luck.

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If you can have your nutrient levels checked and get on some good supplements it may help.  Low B12 or iron can give you fatigue.

 

Diana

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