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Re-Blood Test On 4Months Gluten-Free Diet

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Hi there,

I was tested in April 2012 because there was something seriously wrong with me (which happened over night) and my grandfather had been diagnosed in Feb. 2012 with Celiac.

It turned out that I had a giant liver cyst, which had to be removed via liver re-sectioning in July.

However, my test was positive. When I got the positive blood test in on 05/03/2012 I went on a gluten-free diet. I then got a negative biopsy 10 days later and the GI said to go ahead and eat gluten that I did NOT have Celiac. I knew better from reading on-line and maintained a gluten-free diet anyway. Since then I have basically been in the hospital had surgery, sepsis, staff infections, strep in my blood, etc. etc. and I have never felt any better.

My liver situation has been cleared up now (since July), so I made another appointment with my general doctor to find out what going on with me still. He decided that I should get another blood test for Celiac, he also did a full vitamin panel, and also some blood work to test my thyroid. I'm confused though because since I have been gluten-free for over 4 months I should get a negative blood test, right? He also told me to go off of all the vitamins, supplements and medications for the time being (which were all gluten-free).

My symptoms are:

* Extreme hair loss (I have lost about 80% in about 6 weeks)

* I feel sick every time I eat (tummy ache)

* Need to use the restroom immediately after eating

* Have massive stomach cramps that are loud and can be heard from another room after eating

* Intense hunger

* Vertigo (sometimes)

* Extremely tired with rapid on-set(despite sleeping enough 8-10 hours a night)

* Cannot focus on listening to people or read anymore (get to tired)

* Bloating (I lost 30 lbs in May from 2 surgeries and still had to go up in sizes)

* Anemic (according to blood tests in April - June)

* Rashes on my hands and feet (tops only, very specific area)

I think that if I do have Celiac then the liver problem "triggered" it because I used to live on bread and gluten products and never had problems before. I am surprised that despite being gluten-free for over 4 months I am feeling worse than I did when diagnosed. I feel like I am getting worse everyday and the doctors can't come up with a reason why. My blood work makes me out to be as healthy as a horse besides being anemic... I'm only 27 y/o and have never had any problems like this before.

My questions are:

1) After being gluten-free for 4 months should I expect to see a negative or positive blood test?

2) Do people ever report getting sicker after going gluten-free a few months into it?

3) Is it possible that my husband is making me sick by kissing me after he eats gluten all day at work?

4) Do people on their gluten challenge get sick with every meal or just their meals with gluten in them?

5) Are there certain brands I should be avoiding even though they say gluten-free on the packaging? (I was talking about this to somebody in person who has a gluten-free nephew and she asked me if I was eating the gluten-free Chex cereal - I wasn't - and told me that it makes her nephew sick because its made alongside gluten products).

6) Anybody know of a great doctor who truly understands Celiac in the Los Angeles or Southern California area? My doctors don't seem to know much about it.

I do not think that I am ingesting gluten, I do not wear make up and have checked my personal care products, I have cleaned my kitchen to the nth degree... I'm eating fresh fruits and veggies mostly with BBQ or steamed meats or gluten-free labeled deli meats. I check everything to make sure it is gluten free. I am keeping a journal of food and reactions and their is no rhyme or reason to what is going on. Any insight will help.

Thank you!

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1. negative

2. not sure

3. yes

4. i have no knowldege of this

5. Every one is different. Just because your nephew has issues with it doesn't mean you will. I, for one, am perfectly fine with chex.

I had a positive blood test, negative biopsy (done after 4 weeks gluten free), and a positive genetic test (both genes noted). My GI doctor never gave me the final verdict ("well i don't think...") despite the fact that i was having major "D" and vomiting whilst i was on it. I have had two other doctors and a nurse practitioner say yes though.

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It's possible that you haven't been gluten free long enough for your body to heal. It takes many months for some people to see results. But even with symptoms, you will probably have a negative blood test at four months gluten-free (I did).

In my opinion the infections you've had could have been a result of the surgery, and could be unrelated to the celiac symptoms. It would be difficult for your body to heal your intestines from gluten damage if it's also fighting multiple infections, which could be why you don't feel better yet.

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Just some random thoughts

Untreated anemia will make you feel tired.

If you are still consuming lactose, that can cause rumbling stomach and the need to rush to the toilet (if you do have celiac, you have probably temporarily lost the ability to digest lactose)

Your husband needs to brush his teeth and clean his mouth before kissing you.

Many posters have reported a period of feeling worse before they felt better.

You are probably not producing enough enzymes in your pancreas to digest your food properly. A trial of digestive enzymes, and a good probiotic to repopulate your gut with "good guys" flora would probably help your digestion.

A diet of pure, whole foods (not processed from a box) is best for new gluten-free'ers, and no eating out.

I have problems with Chex cereals too.

If you are absolutely gluten free, celiac testing should be negative, or the blood test scores should be significantly lower.

With all that you have been through, it may take a while to note improvements.

Good luck on your journey to good health. :)

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