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Recently Started gluten-free Diet And Having More Symptoms Now Than Before
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I was tested for celiac 5 or so years ago and do not have the disease, but am definitely gluten intolerant.  I now believe I have been for 20 plus years.  At that time, the symptom that sent me to doctors was daily vomiting and losing lots of weight.  When I finally found a doctor that paid any attention to me, they did all sorts of testing, but I don't think much at all was known about celiac and so was never tested for that and the wheat connection was never made.  The doctor finally put me on ludiomil to see what would happen.  The vomiting stopped and so I thought I was good!  When I went through the celiac testing 5 yrs ago it was discovered that I was negative for it (no intestional damage,etc.), so again I thought the medicine was all I needed.  Now I am finding out that my thyroid problems, lack of energy, and other issues I am having is all related to the intolerance.  All that to say that I am now one-week gluten free and off the meds (for another long story).  My problem is that the symptoms of crampy gas pains, low energy and nausea, low grade headaches are worse now than before.  I am wondering if anyone else experienced this right after cutting out the gluten and how long before the good health effects started happening.

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Yup!!!! I definitely got worse before I got better. Some people call it 'gluten withdrawal,' I don't know what it was in my case, but it took a few months. Others start to feel better in a few days or weeks.

 

I didn't realize at first that I had also developed lactose intolerance and probably temporary intolerance to all kinds of other things. So you might also try laying off dairy and keep a food journal to see if other stuff bothers you.

 

I took longer than some (6-7 months) to start to feel better, maybe because of getting accidentally glutened along the way. It can take a while to learn all the sneaky places gluten hides! Eating out can cause lots of problems, even if you are careful.

 

Also please don't be discouraged by my experience. Although it took a while to feel better, I would never, ever go back! Besides my GI symptoms healing, my middle-aged joint pain is almost entirely gone! Wouldn't trade that feeling for all the pasta in the world.

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Yup!!!! I definitely got worse before I got better. Some people call it 'gluten withdrawal,' I don't know what it was in my case, but it took a few months. Others start to feel better in a few days or weeks.

 

I didn't realize at first that I had also developed lactose intolerance and probably temporary intolerance to all kinds of other things. So you might also try laying off dairy and keep a food journal to see if other stuff bothers you.

 

I took longer than some (6-7 months) to start to feel better, maybe because of getting accidentally glutened along the way. It can take a while to learn all the sneaky places gluten hides! Eating out can cause lots of problems, even if you are careful.

 

Also please don't be discouraged by my experience. Although it took a while to feel better, I would never, ever go back! Besides my GI symptoms healing, my middle-aged joint pain is almost entirely gone! Wouldn't trade that feeling for all the pasta in the world.

Thanks for the response.  Good to know that it is not all in my head, especially the extra lack of energy part!  When I first heard about celiac/intolerance and before I was tested I went off my medicine and wheat for 7-8 days to see what would happen.  It was the first time ever that I could go without the medicine and not throw up by the 3rd day.  Just to test myself, on day 8 I ate some pizza....I was in the bathroom 10 minutes later hugging the porceline god!!  That is when I got tested.  Having said all that, I think part of the problem now is that for the last 3 months I was/am having a hard time getting my Rx filled because Walmart's distribution warehouse has been out of it.  Until a week ago when I stopped the gluten, I was taking the meds just every 3 days and continuing to eat gluten.  It worked for a while but caught up to me recently and I am now feeling the full effects of having gluten in my system.  I am so ready and excited to see the positive changes to my health!!

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Hi Kcorcoran,

 

Yep, it can take some time for our guts to heal and start behaving normally.  Symptoms and reactions can be kind of variable for a while.

 

Here are  few tips for getting started (first 6 months or so)

 

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

 

If you haven't seen them yet, these threads are full of goof info also:

 

FAQ Celiac com
http://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

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Do you have any of your old testing results?  Some GI docs hand over pictures of the endoscopy right after the procedure.  If you have any info post it.

 

If you are going to be tested, you need TO EAT gluten.

 

Keep a food journal to help determine hidden gluten or find another food intolerance.

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I have only been gluten free since November, and I felt better right away. I was noticing nausea here and there though, turned out I am also allergic to dairy and soy. so you might try eliminating suspicious foods one at a time and see how you do.

 

I eat only whole foods that I make myself, it's totally not worth it to eat any other way for me.

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    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
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