Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Where In Your Stomach Does It Hurt When You Have Been Glutened?
0

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!

0

Share this post


Link to post
Share on other sites


Ads by Google:

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

0

Share this post


Link to post
Share on other sites

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/

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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....

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,374
    • Total Posts
      920,569
  • Topics

  • Posts

    • Today was the big day when I went to the GI and this is the first time I have felt heard about and well taken care of.  I told him about the two celiac blood tests  (in my first post) normal, he said that often happens, even with people who do have celiac and he needed to see the report and pictures from my endoscope.    I had filled out the appropriate Kaiser paperwork for Sutter to send all my medical records, but they ended up sending a celiac disease to me with the records, which Sutter said they could not use.  We also talked about gluten sensitivity v. celiac, and he said a lot of people are sensitive to gluten even if they don't have celiac. He said that my symptoms sound like classic IBS, which can be caused by any number of things.  He asked if I would try the FODMAP diet, which limits certain foods and requires no gluten due to what being He said my symptoms sound like classic IBS, which he said can be caused by any number of things, including gluten sensitivity.  He has asked if I would try the FODMAP diet, which has restricted foods as well as no gluten because most gluten products have wheat in them.  So, since I am planning on going gluten free anyway, and I don't want another endoscope or blood tests if absolutely necessary, I am going to try the FODMAP diet and see what happens. I filled a consent form at the GI office today to have all my records sent to him so he can view the endoscope pathology report and photos.  I have an appointment with a Registered Dietician on September 30, and follow up appointment the GI in 4 months. 
    • gluten-free andee, according to an article on celiac.com  that talks about this subject see this link http://www.celiac.com/articles/24406/1/Celiac-Diease-and-Other-Autoimmune-Diseases-Equals-Low-Inflammatory-Diet/Page1.html Quoting the author "In the author's personal experience, a gluten-free diet has many limitations. The reactivity between alpha gliadin and corn, millet, oats, rice and dairy has been denounced as invalid by gastroenterologists and celiac disease researchers. While at a medical school in Missouri, biopsies did not show improvement in villous atropy until all alpha gliadin sources and corn, millet, rice and oats were removed from the diet."  Note this research is two years old but hilites the problem with non-gluten rice protein that you are having. It is the alpha gliadin sources that it causing the cross reactivity you are experiencing when you eat rice protein's. She says quoting "Celiac disease has gotten the most attention in antibody research, but the current data on cross-reactivity of antibodies is allowing a better understanding of gluten sensitivity. Antigen reactivity to alpha-gliadin can trigger immune attacks on many individuals beyond those with positive DQ 2, DQ 8 and TTG test results. She goes on to say "A low inflammatory diet customized to each person through testing for cross-reactivity or elimination diet protocols is needed to restore a state of health and well-being."  which sounds exactly like what you are doing. If you are still having problems after elminating rice a 30 day elimination of all the alpha gliadin proteins might be in order.  Corn is a common reactivity problem I hear with a gluten allergy from my friends as well as the obvious lactose problems that can be common among celiacs.  But rarely do you hear Rice allergy's brought up in context of a gluten allergy. I am glad you are making progress on finding your triggers. Read the whole article for yourself to see if there are nuggets of truth I did not highlight in my response. I hope this is helpful. Good luck on your journey to health. Posterboy,
    • One other thing - you might be able to tolerate some dairy if it's only the FODMAPs problem. I discovered that many cheese such as cheddar have effectively no lactose. And my wife sometimes makes 24 hour yoghurt, which also has effectively no lactose. Those have been fine for my tummy.
    • I'm new to the forum, so this topic may already have been covered....please forgive me, if that's the case.  I am in the beginning stages of guiding the development of a 504 plan to file for my 6th-grade daughter who was diagnosed with Celiac Disease 2 weeks ago. The diagnosis was made with a biopsy. My first question...A 504 is what's necessary....not just the IHCP, correct or no? I have the Physician's Statement & the Medical Evaluation report from our GI specialist. What else do I need to have at the ready? The team has requested we go ahead and write the IHCP & then include it with the 504.  And my second question...What accommodations have others found relevant to include on the IHCP  & 504? I just watched a 504-Plan webinar I found on this forum & it recommends the following: -access to gluten-free food in classroom & cafeteria - excused absence from activities that use gluten-containing foods or materials -  prevent cross-contamination in school food service - use of microwave to heat personal meals -  bathroom priveleges Is there anything I need to consider adding? My daughter does prefer eating school meals rather than packing a lunch from home & I am concerned about special events, overnight field trips etc. My learning curve is steep. What am I missing? Teach me, please & thanks so much! This forum has already helped me tremendously these past few weeks.
    • SIBO, microscopic colitis, probably celiac here (celiac's a self diagnosis, was gluten-free before getting tested). Now my doctor is suspecting hashimoto's due to low heart rate, so getting tested for that probably tomorrow. Anyway, I feel your pain... Low FODMAPs on top of gluten-free is tough. One thing that has helped me a lot is betaine HCl with meals. I can actually eat some onions, garlic, and fruit again with much less trouble. Make sure you get a safely gluten-free brand. Country Life is certified gfco, so is tested to less than 5ppm and is what I take. Good luck!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,450
    • Most Online
      1,763

    Newest Member
    Chellygirl
    Joined