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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
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alib91

5 Weeks But No Improvement...

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I started eating gluten free 5 weeks ago today, and although my doctor told me that I should feel slightly better after a few days gluten-free and then much better about 4 weeks into a gluten-free diet, I am still feeling awful. I have had occasional "not so bad" days, but even then I still have a lingering nausea.

 

The last week or so, I even think it has got worse and I am feeling very nauseous whenever I eat or drink anything, be it a bowl of brown rice with vegetables, or a cup of tea.

 

Is this all part of the healing process or am I doing something wrong? I've also limited my dairy intake and am now only having yogurt in the mornings for breakfast but take soya milk in tea/coffee.

 

Any advice would be much appreciated! Thank you!

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Beware and watch out for hidden gluten.  Check every label.  You could be experiencing withdrawl symptoms or having cross contamination problems.  I had both after going gluten free.  Time will help you decide just what is going on.  Just take steps and keep moving.  It will take some time.  You are on the road and headed in the right direction.

 

Diana

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Try ditching the soy milk - some of us just don't get along with soy - and use a nut milk or coconut milk.  Big learning curve to figure out each person's individual needs, with this.   You might also have to not do dairy completely for a short time until you are well on the road to healing...  this can take anywhere from a few weeks to a few months. 

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Thanks for all your help! But should I not be feeling at least a bit better? I just feel like I'm getting worse! I had a drink of water this morning and felt like I was about to throw up (sorry for tmi!)

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If I were in your shoes I would go back to the doctor. You may have something else wrong with you too.

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I am in the same boat..just over a month of being gluten free but most of the time I still feel sick. Mornings in the bathroom are rough, needless to say...and I have been super careful! What else could I be missing?

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Hi Ali,

 

Try following the tips below for a few months and see if things improve.  It can take quite a while for the gut to heal and anything we can do to help the process along is good.  Personally I wouldn't use soy and there are several other people on the forum who react to it.  If you do some reading on soy and intestine issues it isn't real good for you.  Plus most soy is GMO these days.

 

Some starting the gluten-free diet tips for the first 6 months:

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.

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your doctor should have checked your Vit D, ferritin, and other vitamin levels. You might be malnourished depending on your level of villous atrophy.

 

also, your gut may be in a state of disbiosis, meaning you have an overgrowth of bad bacteria and little of the good bacteria.  A good probiotic is good for that as well as eliminating all the processed gluten-free junk foods out there. 

 

ditto what GFin DC advises.  it took me over a year to start to feel better, and 3 years later I am still dealing with residual problems, though frequent bathroom trips are mostly a thing of the past.

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I agree, GFinDC.

 

Ali, I just wanted to say that I was told the same thing when I was first diagnosed- "lay off on sugar, starches, dairy, processed foods etc." and I didn't listen... If it's gluten free, isn't that enough?! And...I wish I would have listened to that advice sooner! I believe it would have sped up the healing process. I was told I would feel better in 4 weeks, too, but I didn't! So frustrating and very misleading thing. I eat a gluten free diet and am better than I was at first since going gluten free. So, there is some improvement. It makes sense, though...Since our intestines are so inflamed at first, we need foods that are easy on our stomachs, even if that means cutting out to just the basics. Tea and coffee both affect lots of people, including me, so might want to think about cutting that out for a bit? Just a thought. Remember "Nothing tastes better than being healthy feels." I'm still not where I want to be, but after 19 months I am better than when I first started gluten-free. You'll get there. It takes time and discipline. Keep you head up and hang in there!! You WILL get through it. It gets easier with time. 

 

 

 

 

Hi Ali,

 

Try following the tips below for a few months and see if things improve.  It can take quite a while for the gut to heal and anything we can do to help the process along is good.  Personally I wouldn't use soy and there are several other people on the forum who react to it.  If you do some reading on soy and intestine issues it isn't real good for you.  Plus most soy is GMO these days.

 

Some starting the gluten-free diet tips for the first 6 months:

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.

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If you drink herbal teas, give them a Google and be sure they don't have barley malt or something else gluteny included in their "natural flavors."

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Thank you all for the advice! The doctors didn't mention anything about my vitamin levels but have been taking calcium, iron and folic acid tablets after a different doctor recommended them.
I'm trying to eat in as much as possible but I'm on a gap year in Spain at the moment and every social activity seems to revolve around either going out for a meal or out for alcoholic drinks and I'm trying to balance not missing out on everything with improving my health.
Not easy, but I'm optimistic about the future :)

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