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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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

I Need Some Advice
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16 posts in this topic

I started eating gluten free 3 weeks ago. I have not been diagnosed with celiac, but have felt so sick (tired, nauseous, anxious, brain fog, depressed and weak) for so long that I decided to cut out gluten for a bit to see if it helped. My sister and I started at the same time and she is feeling great, even though she has cheated a few times and I am feeling worse then ever. I went out for breakfast today for my husband's birthday and before we even ate, I felt like I was going to pass out. Looking at the toast on the table it was the only thing I could think of eating and felt it would have made me feel better. I could barely eat my omelette. I want to cry all of the time and really have no energy and want to sleep. My stomach is also a little weird. I am very discouraged as everyone I have talked to who cut out or even cut down on gluten has said they have felt amazing. I am tempted to start eating gluten again, because maybe this diet just isn't the answer for me. Should I stick it out a little longer or give up?

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Yeah... the thing about gluten is that it is like a drug. It is addicting. It took me about two months to get to get over that.

Stick to it.

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As wolfie says, for some of us gluten is highly addictive, acting like an opioid to the body and when we stop eating it we go through withdrawal, as we do with any addictive substance. Think of gluten as your particular heroin (or nicotine, or oxycontin). Your body is craving it right now, begging for it, and you are being strong and saying NO, NO, NO!!! Notice that it was the toast on your plate that you wanted to eat, not the nutritious egg. It was the siren temptress calling to you, I am gluten, eat me!!! :D Think of the agonies of withdrawal others go through and that is what you are going through. I went through withdrawal from a pain medication cold turkey and I had crying jags and the shakes and felt like hell. I went through withdrawal from nicotine and thought my muscles would break every bone in my body, they were so tight and painful. :unsure:

Do not give up, because you are almost over the hump. Hang in there a little while longer and the siren song will stop and you will start feeling better, I promise you. :)

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Hang in there. I usually feel my absolute worse just before the sun comes through the storm clouds. I say any reaction (good or bad feelings) is a good one. Something is happening. I hate to have to see anyone have to go through the hard part, but it is the way for you it seems.

I had one week of bliss after beginning gluten free, so it is possible to have that too. After that week of bliss I suffered tummy noise, bloating, and aching feet. Not to mention fatigue and dizziness.

Keep checking everything you are eating and getting better at that. Some of my suffering came from mistakes which could have been prevented if I read every label. Did you know to read the label on bottled water? I found one with gluten once! I just left it by the pop machine.

Diana

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I started eating gluten free 3 weeks ago. I have not been diagnosed with celiac, but have felt so sick (tired, nauseous, anxious, brain fog, depressed and weak) for so long that I decided to cut out gluten for a bit to see if it helped. My sister and I started at the same time and she is feeling great, even though she has cheated a few times and I am feeling worse then ever. I went out for breakfast today for my husband's birthday and before we even ate, I felt like I was going to pass out. Looking at the toast on the table it was the only thing I could think of eating and felt it would have made me feel better. I could barely eat my omelette. I want to cry all of the time and really have no energy and want to sleep. My stomach is also a little weird. I am very discouraged as everyone I have talked to who cut out or even cut down on gluten has said they have felt amazing. I am tempted to start eating gluten again, because maybe this diet just isn't the answer for me. Should I stick it out a little longer or give up?

I am sorry you feel so tired and ill. You may want to have your iron levels checked, you may be anemic or deficient in vitamins.

It sounds like you really need to see a doctor. Before I was diagnosed, I had similar symptoms but with severe stomach pain.

I had 2 negative blood tests, a negative stomach biopsy and finally a positive biopsy. It is very difficult to diagnose.

Try to stick with the diet, but I would avoid eating out at restaurants. I have found it very difficult to eat out without getting cross contaminated. The omelette you ate was probably prepared on a grill previously used to cook gluten containing foods, or the seasoning added could have been contaminated (I don't know for sure) but I do know that I have gotten sick from a crumb of wheat.

I hope you pursue your health issues with a doctor. Sometimes you really need to push. Best of luck!

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Those first couple of weeks were hard on me too. I felt really poorly, tired and cranky, and I had a migraine that lasted over a week. Hang in there and you'll probably feel better soon.

Good luck!

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I wanted to add - you should check on the omlettes if you're eating at a restaurant. Some places (IHOP is known for this, but it's not super uncommon) put pancake batter in the omlettes.

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I could use some advice too.  Flat feet?  Anyone hear of flat feet associated with celiac or gluten problems?  Its not me this time, one of my sons

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For the first couple months, I felt very fatigued.  I stopped exercising because I didn't have the energy. Once I tried to go to yoga and push through the fatigue, ...I ended up injuring myself.  This went on for months.  The closest thing I have felt to it was when I had a partially collapsed lung.  So I deducted that my body was in repair-mode and it was taking literally all of my energy.  Perhaps the same is true for you?  I wasn't sleepy, but I was weary- if that makes sense.  That's when I started searching this forum because I thought you were supposed to feel better right away!  I am just now (after 9 months) getting to a place where my energy is more substantial most of the time.  Some days I think: "This is what people feel like all the time?  The things I could do with this energy!"

 

Definitely see a doctor and make sure nothing else is wrong as others have suggested.  But, I would also suggest not eating that piece of toast!  Eating it could potentially hurt you, assuming your self diagnosis is correct.  Not eating it isn't gonna kill ya.   :D

Best of Luck-

Shellie

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I'm going to agree that you should see a doctor and get blood work to make sure nothing else is wrong. Giving up gluten isn't a cure-all for everything and everyone and you don't want to miss something else going on. Also, if you decide you want to be tested for celiac, you will need to go back to eating gluten for the tests to be more accurate.

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I could use some advice too.  Flat feet?  Anyone hear of flat feet associated with celiac or gluten problems?  Its not me this time, one of my sons

I don't know much about it but it seems like mine have become somewhat flatter.  I was running 3-6 miles about 3-4 times per week.  It seems like my feet did get flatter, I've noticed some fat deposits in my heel below the surface of my skin and my recovery times from running take longer.

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@ Diana : You found gluten it water?! That scares the crap out of me!!! What brand was it?!

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I could use some advice too.  Flat feet?  Anyone hear of flat feet associated with celiac or gluten problems?  Its not me this time, one of my sons

I don't know about celiac, but flat feet can be seen in hypothyroidism.... and during pregnancy but nevermind that.  ;)  lol

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Just curious, this son, has a behavior issue with gluten, and when I researched Flat Feet, I came up with a few causes, but one that stood out to me was diseases of the nervous system, could that be inflammation of the nervous system?  I know it doesn't really matter, it is what it is, he has Flat Feet and needs good shoes and an orthotic, but just to help anyone else with questions, I wanted to pose my question and what I thought.

 

When I had to take away gluten last year, he was one of my children that I saw how it impacted, he went from a borderline ADHD to slightly high spirited and very helpful and thoughtful, so I see some connection.

 

And there is juvenile arthritis.  He has no other signs of arthritis, but he also has no other nervous system issues, take your pick either way I blame the evil Gluten.

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@ Diana : You found gluten it water?! That scares the crap out of me!!! What brand was it?!

I have never seen a plain bottled water with gluten. It's just water. Might be a slight chance a flavored water has it, but I have looked at many brands and never seen gluten in it.

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@ Diana : You found gluten it water?! That scares the crap out of me!!! What brand was it?!

A name brand from the vending machine.  I am sorry I didn't memorize the brand.  I know it wasn't Evian.

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