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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.

Where In Your Stomach Does It Hurt When You Have Been Glutened?
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7 posts in this topic

I have 20 years of gluten symptoms, have a history of Fibromylagia and CFS. I went to a new doctor, a nurse practitioner actually. She wasn't satisfied with just a Fibro/CFS diagnosis and decided to test me for Celiac and I tested positive on a TTG-IGA antibody test. My NP diagnosed me with Celiacs without any further testing and told me if I want to live, stop eating gluten. I decided to go for another opinion and went to see a GI. I had a negative upper endoscopy and set of negative genetic blood tests. Celiac was ruled out and non-celiac gluten sensitivity was given as my new diagnosis plus Fibromylagia.

I am not 100% convinced gluten is my issue...

During all this testing, the GI found I had Gastritis, inflammation in my stomach and bleeding. I was put on prescription Prilosac. This was found to be caused by years of use of non-steroid anti-inflamitories. I stoped the anti-inflams and started taking the Prilosac. My stomach felt better at first, I am also 100% gluten free now. It's been about 4 weeks and I'm not better. All of the sudden, after eating certain meals, I started having symptoms again. First it's massive upper stomach pain, like a knawing pain, like someone is stabbing my upper stomach with knives. Then I get gas, burping, then a little while later it almost stimulates my constipation and I go to the bathroom. Not diareah but I go and it's loose, normally I never go. I also get a sour taste in my mouth almost every time I eat.

My struggle now is trying to figure out if this stomach pain is from me being so super sensitive to gluten cross contamination (the stomach issues seem to happen every time I eat out or get takeout) or if it's from the gastritis not yet healing. The stomach pains seem to only happen at a later in the day meal like lunch or dinner, possibly the Prilosac is wearing off by the afternoon? So confused and just want to figure this out. I called my GI and he added a second dose of the Prilosac to my daily regimen. I have taken it the last three days. The first day I took the second dose, I still had the stomach issues. Yesterday and today, I had no reaction. Yesterday I ate out at a restaurant and today I got gluten free pizza take out. I was fine. I guess if I can have a week of consecutive non-reactions, I can test my stomach with gluten and then I would know.

I am looking for any opinions about this and also, if you have Celiac or non-Celiac GS, when you get stomach pain, is it in your lower stomach or is it in your upper stomach?

Thanks!

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Restaurant food is usually fatty and saltier than homemade. Perhaps that is your issue? Maybe some of that makes the gastritis worse?

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HI,

 

You might want to read about the side affects of prilosec.

 

What's significant in your story to me is that your symptoms changed when you went gluten-free.  When a person stops eating gluten there shouldn't be any big change in their digestion unless they are having some kind of response to gluten in the first place.   That your symptoms changed means something was going on related to gluten.

 

Going gluten-free doesn't instantly heal the body.  It can take months or even years to heal the digestive system.  In the beginning of the gluten-free diet people often report symptoms getting better and then worse.  While the gut is healing it is in an unsettled state and things may not work out just perfect with digestion.  Over time things tend to get better.  Quickly for some people but slowly for others.  We aren't all the same.

 

Did you get copies of your test results?  You should get paper copies to keep for your records.  Plus some people on the forum have good advice about interpreting results.  Pain can vary from person to person.   I had pain in my stomach but also had pain in my abdomen from gut inflammation.  Some people with celiac have no symptoms at all.  They are called silent celiacs.  So identifying celiac just from symptoms can be difficult since they vary so much between individuals.

 

Acid blockers can cause problems for people.  Stomach acid is there to help digest foods and also kill incoming bad bacteria etc.  So lowering the acid strength can let those bad critters in and get a foothold.  Plus digestion is hurt by the food not being broken down by the acid.

 

Sometimes stomach pain is caused by excessive gassiness.  That can be relieved by avoiding sugars and carbs, taking probiotics, and drinking peppermint tea.  Learning to live with celiac disease can take a while, but it gets much better after you are familiar with the gotchas.

 

Some 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 if it causes symptoms.
Avoid sugars and starchy foods. They can cause bloating.
Avoid alcohol.
Watch out for cross contamination.

Helpful threads:

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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Sorry that you've been unwell.  :(

 

My stomach pain was usually fairly sharp and in the upper part of my belly - well above the belly button but below the ribs. Combined with the bloating, it was sometimes difficult to stand up straight so I spent a lot of time "casually" leaning over counters and chairs to hide my discomfort.   :rolleyes:

 

My symptoms did come and go. Some days were better than others, and some months were worse than others. The only reason I ever figured it out to be celiac disease was because my son, who is suspected of mild aspergers, was having stomach issues and I stumbled across the link between gluten intolerance and autism, and then applied it to myself... Anyway, the point of my ramblings is that symptoms aren't static, they change.

 

I agree with the others that a week or so gluten-free is not enough.  I still had symptoms resolving at over 6 months gluten-free.  You'll need a lot longer before you can be sure.

 

Did they ever decide why you had a positive tTG IgA if it wasn't celiac disease? A weak positive tTG IgA can also be caused by thyroiditis, diabetes, chronic liver disease, crohn's, colitis and a serious infection, but that's only in 5% of positive cases.  As a general rule, if you have symptoms and a positive test, it's celiac disease, even if there is a negative biopsy - false negatives really are not rare.

 

Best wishes. I hope you feel well soon.

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I tend to get a sharp an persistent stabbing pain around my abdomen which starts at the base of my rib cage and later spreads downwards to encompass the whole belly area....

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when you have gluten issues, it is not enough to stop eating gluten. there are other things you need to do, including modifying your diet further, beyond not eating gluten. you have autoimmune issues and very strict diet is a part of healing. what diet would fit you, I cannot say. people usaully start with strick paleo and add.

gut flora is the second thing you may want to think about. rebuilding it with good bacteria with probiotics.

leaky gut is there, too.

the point is that there might be few things that you may want to try. I, personally, would stay away from prilosec because of the side-effects and, as I understand it, it can help you only in the short run.

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when you have gluten issues, it is not enough to stop eating gluten. there are other things you need to do, including modifying your diet further, beyond not eating gluten.

 

I disagree.  This may be true of many people - especially those who have gone a long time without a diagnosis and those who have really crappy diets to begin with.  But stopping eating gluten is the only mandatory action for a Celiac or NCGI person.  Digestive enzymes, probiotics, a whole foods diet - all of that is great and can really speed up the healing process - but you can't say that it is required of everyone.  I don't think that it is accurate to say that "usually" people start with a strict paleo diet either.  Some do, yes - but I highly doubt that it is the majority. 

(I just don't want new folks to read your post and get the wrong idea.)

 

I know for me, all I changed in my diet was to eliminate gluten.  Nothing else changed.  I didn't have to give up dairy or anything else.  I don't tend to eat much processed crap, so I just kept on not eating much processed crap.  And I've taken digestive enzymes and probiotics for years - so I just kept taking them.  And I'm doing great.

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