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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.

Okay. Gluten Withdrawal? Insight And Shared Experiences Welcome!
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Kamma    21

Morning everyone. Any insight or experience that you have would be welcome. Need a good shot of hope to keep my spirits up on this journey.

Stopped eating gluten at the end of December just prior to testing. Felt good for about two weeks then started to have nausea (new symptom for me), huge vertigo/ataxia problems again, sound hyperacuity and exhaustion. Did anyone else experience this after the first few weeks going gluten free?

Also been diligent to remove dairy and soy from everything I eat. Dairy was the easy one but soy is in everything! Everything! Totally just eating fruit, vegetables and meat now so cross contamination isn't an issue.

How long do the anitbodies stay in the system in the absence of gluten?

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ciamarie    23

After about the first 2-3 weeks, I started getting minor headaches. They weren't really bad, it was almost like the ones I've had after having a fever. I suspect it was from reduced inflammation. And they only lasted about a week or so, I think. And for a few days somewhere around that time, I would get very tired in the late afternoon. That also didn't last more than a few days. I think there may have been a few times where I did feel a bit of nausea too, which is actually unusual for me.

I'd say it's probably just the healing process. I've been at it a little over 3 months now, and I see definite improvement in my hair (getting thicker, not falling out so much...) and improvements in skin rashes, etc. so I know I'm healing even though I don't feel great all the time. I do feel much better though! Hang in there and if you're being careful with the diet you should get over this 'hump' pretty soon. If not, let us know! :)

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chi1968    1

What were the results of your testing? :)

Lisa -- that's an interesting question. I've seen posts before of people experiencing withdrawal symptoms. Some people are having things like headaches and feeling generally blah, but other say that's crazy and you should only feel better.

I, my son, and my husband (who, incidentally, doesn't have Celiac but decided to go gluten free since we had to), all felt tired and had headaches, almost like migraines, for a few days after stopping gluten. But, even though we had a confirmed positive diagnosis, finding out about our Celiac was purely by accident. We weren't feeling "sick" and didn't have any "typical" GI symptoms.

So -- my theory was that maybe those who only felt better, not experiencing withdrawal, were the ones that had pretty bad GI or other symptoms before. So, after they stopped eating gluten, they could only feel better than what they were feeling before. And, maybe those without as severe symptoms before stopping gluten were just more aware of their bodies experiencing a withdrawal from gluten because they didn't really feel bad before?

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lucia    54

I felt like a heroin addict in withdrawal after I stopped eating gluten (my first week was good, then the withdrawal hit me the second week). It was awful. I felt alternatively feverish and chilled, I sweated tremendously, I had debilitating headaches, I was emotionally distressed, I couldn't sleep. I couldn't function in a basic way. I wrapped myself up in a mountaineer sleeping bag and barely left the house. Of course, it was worth it to finally have gluten out of my system.

I'd like to suggest this detoxifying Ayurvedic bath to you. Perhaps it will help.

Fill the tub with water as hot as you can stand. Add 2 cups epsom salts & 1 cup baking soda. Sit in the bath for thirty minutes. Upon getting out, dry off, then rub your skin and especially your feet with body oil. Put on socks and clothes. You will continue to sweat after your bath (for up to a couple of hours). You may want to lie down or go to sleep.

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haylez    1

I'm in my second week of going gluten-free, it's hard to say what is still a lingering symptom of celiac, gluten withdrawal or just your body adjusting. I had a terrible splitting headache yesterday, find I am extremely tired in the afternoon (with joint and muscle pain worsening around this time and then hanging around all night) and my GI symptoms seem to be doing a one day off one day on type of thing. I'm trying not to analyse it too much and hope for small improvements over time. Most of the posters on here seem to suggest that it will take a good 3 months before you really improve. I hope you feel better soon!

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Kamma    21

Thanks, everyone. The words from you guys really helps me come back from the wilderness and find the path again.

It's interesting how the symtpoms appear in the afternoon for those experiencing the withdrawal. I can have a good two hours in the morning and then the vertigo/ataxia/exhaustion starts up. I wonder if thats when the body has depleted its hard won 'healthiness' and then it's reserves are taxed. Im assuming that as the body heals more and more, those symptoms will come later and later in the day.

Lisa, you asked what the results were. The neurologist only did ttg IGA and it came back 'inconclusive'.

I did a bit more poking around and found out that the antibodies that are created in response to gluten last from six months to twelve months in the body. Their half life is three months. Which totally fits with what you said, Haylez, about it taking a good three months before people start seeing the improvements.

Onwards and upwards for us all. I hope we all feel better soon!

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