Gluten Stomach Pain Only After Going gluten-free?

[acousticmom]

My 9-year old daughter had a negative blood test for celiac, but a few other health concerns that make me want to try her on a gluten-free diet to see if it helps.

I've given her a week of transition before going gluten-free, so she can get used to reading labels, spotting gluten-containing foods, etc. Even though I haven't made her be 100% yet, I think she has been for the week after Valentine's day. Then she went to the kids' program at church and ate a Twix bar (the prize when her team won a race), and later that night she had a really painful stomach ache and some D. It looked suspiciously like her celiac brother's horrible stomach aches (pre-gluten-free), but she's never had stomach trouble before, and her blood tests were negative for celiac. And this didn't really look like flu, either. I know after you learn a bunch about gluten intolerance you begin to suspect everything is gluten-related, but this has me scratching my head.

Has anyone developed the gluten stomach aches only AFTER going gluten-free?

Carol

[Carriefaith]

I now get severe stomach pain after going gluten-free. The pain gets so bad that I cannot move and breathing hurts. I don't get the pain all the time after an accient but I will get the pain once in a while after an accident. I never used to get pain like that before the gluten-free diet. Which blood test did she have done?

[Guest nini]

I have heard of quite a few people that didn't really have any "noticeable" symptoms prior to their dx, and were dx'ed because of a family member that had it and they were being screened... and then after going gluten-free, even after only a week, getting severe bloating, gas, stomach pain and even diarrhea. Then, after being completely gluten free for a while they start to notice that all the other little odd things that they just chalked up to minor inconveniences, were actually symptoms, and the longer they are gluten free, the more symptoms dissappear.

With first degree relatives, the odds of having celiac increase over the rest of the population. I forget what the actual percentage is, but with the increased risk, I think all first degree relatives of dx'ed celiacs need to be gluten free. If they go gluten free BEFORE developing full blown celiac, it could help prevent serious health complications that so many of us have to live with because we went undiagnosed for so long... the body has an incredible ability to heal, but not if we've damaged it beyond the point of no return.

I am still angry at the health problems that I continue to deal with because I went undiagnosed (WITH OBVIOUS SYMPTOMS) for 33 years. I was a CLASSIC celiac as a child, very skinny with bloated belly, projectile vomiting and chronic diarrhea and an obviously compromised immune system.

IF I had been correctly dx'ed when I was little, and my sister had been screened, would my sister NOW be dealing with digestive issues, severe excema and depression, and would her kids be dealing with asthma and hives and being sickly all the time? Don't know, never will know now. Now that my sister is older and set in her ways, she refuses to be tested, or even consider testing her kids... I'm willing to bet that they all are at the very least gluten intolerant and that their health issues will go away if they went gluten-free.

[Rusla]

My burning stomach and other pains before going gluten-free were there just I had gotten used to them. Now if I get glutened by accident they feel worse than they were before.

[jerseyangel]

Yes--I get stomach pain now when I have a gluten reaction. It's an actual pain right across the stomach area. Now, I can tell if it's gluten if I get the pain. Before being gluten-free, I had cramping and nausea, but not the pain. Now, I get all 3

[elfkin]

Ditto here for my six year old who is now gluten-free. She got a BAD stomach ache after eating out with her Grandma the other day. (She thought she ordered gluten-free, but I don't even let her brother eat out anymore because of how sick he gets all the time!) We assumed that she had gluten contamination. It was classic gluten symptoms like her brother gets when he gets glutened. She has only been gluten-free since Jan.

I heard somewhere that once you are gluten-free that your tolerance for it changes and you feel it more when you are glutened. I don't know why or how or where I read that?

[jenvan]

Yes! I developed a new kind of abdominal pain post gluten-free. It lasted for the first 5 mos or so. I was investigate for gall bladder, pancreas issues etc. My doctor thought I might have spincter of oddi dysfunction, but I said I would hold out on the procedure to investigate it and see if the pain diminished. It did eventually, and we never figured out the cause. I even kept a food/pain journal and found no real correlation to a food. Pain from inflammation, adjusting to diet, my system-pancreas kicking back into gear, new food allergies revealing themselves? Maybe I'll know one day....

[acousticmom]

Which blood test did she have done?

She had ttG (<3), IgA (<3), and immunoglobulin A (low-normal). I wish the tests were more specific. If "<3" means 2, for example, wouldn't that still be a problem? Oh well. I have the distinct impression that whenever I ask the doctors for more specifics, they think I'm overreacting and being paranoid. So we'll see what happens with the diet and go from there.

Carol

[DingoGirl]

It is odd.....I never had stomach pain at all, just intestinal issues I attributed to nerves and medication. Now, five weeks gluten-free and 3 times, after accidentally ingesting, I am in SEVERE distress for a couple of days, with major D and really pronounced abdominal pain. It's no fun at all!

[skinnyasparagus]

Oh! This actually correlates to my sort of pain. I suffered from discomfort before going gluten free but then when I encountered cross contaimination, the pain literally floored me and I was in tears. After an hour or so it subsided..

I think it makes sense: once your my body becomes accustomed to a gluten free diet that once reintroduced, like elfkin said, it triggers a major reaction.

It's kind of similar to being vegetarian and then trying to start eating meat again; your body becomes used to only digesting vegetables and the more gentle food items that if you attempt to digest harsher proteins, like chicken or fish, your body will reject it.

[Becci]

I just got glutenized for the first time really bad. I have had a few accidental crumbs and such, but I got my first real bought of it.

It was three days ago.

Today is the worst day yet.

And I am getting a horrible pain across my stomach all of a sudden. I can barely walk (from weakness, and dizziness) and now I am getting this pain...

I never had it before going gluten-free, and I had symptoms for two years.

I guess it is from not eating it, and once you do, the symptoms take a multiple effect.

I am glad to know its normal, terrible to know it might happen again though.

This forum has helped me so much!

((Has anyone ever had symptoms get worse on the third day? Is this normal??? Usually the first and second days are the worst for me. But, like I said... this is the first bad bought of it I have had. So, is it getting worse for a few days normal?)) Please send me a message and let me know.

THANKS!

[AshleyL]

I have only been gluten free for a week now and this morning I ate some licorice without thinking (contains wheat flour apparently) Well, within a half hour I was in terrible pain and in the washroom sweating. Definitely a quick response to gluten!

[whataride]

Yes! I developed a new kind of abdominal pain post gluten-free. It lasted for the first 5 mos or so. I was investigate for gall bladder, pancreas issues etc. My doctor thought I might have spincter of oddi dysfunction, but I said I would hold out on the procedure to investigate it and see if the pain diminished. It did eventually, and we never figured out the cause. I even kept a food/pain journal and found no real correlation to a food. Pain from inflammation, adjusting to diet, my system-pancreas kicking back into gear, new food allergies revealing themselves? Maybe I'll know one day....

Did you ever figure out what caused the abdominal pain post gluten-free? After only two weeks of being gluten free and feeling great, my wife started to get really bad pain in her abdomen, sides and back. She's had the pain now for two months and she's been tested for gallstones, kidney stones and more.

[Dixiebell]

Someone with more experience can probably give you more information on why this happens.

It is possible your wife is getting cross contaimination either from processed foods, plastic or wood cutting boards and utensils, toaster, old nonstick cookware and if you are not gluten free also, she could get it from kissing you if you haven't brushed and rinsed well. Does she have her own peanut butter, mayo, jams or are they shared with gluten eaters?

[glutenfreemamax2]

Someone with more experience can probably give you more information on why this happens.

It is possible your wife is getting cross contaimination either from processed foods, plastic or wood cutting boards and utensils, toaster, old nonstick cookware and if you are not gluten free also, she could get it from kissing you if you haven't brushed and rinsed well. Does she have her own peanut butter, mayo, jams or are they shared with gluten eaters?

I had this exact same thing. Turns out it was dairy. I was eating gluten-free cheese and stuff. I stay away from cheese and dairy, and i'm fine. Today I had ice cream. I was doubled over. Maybe it's dairy? I read a couple places that a lot of people who have a problem with gluten have a problem with dairy.

[T.H.]

That happened to my 12 year old, who was diagnosed via blood test. She had no stomach issues before going gluten free. After a few months, she started to develop stomach reactions to gluten that have persisted since then.

We know it is a gluten reaction because I am a celiac too and we've both had reactions to the same foods at times.

[weluvgators]

I was asymptomatic when I went gluten free, as was my oldest child. We went gluten free for my second child, and we now have significant and serious symptoms with gluten exposure. Hindsight gives it a slightly different perspective, as I had spent my whole life "normalizing" my symptoms . . . I mean, you have to do something to cope with life, right? My second child had lived with a belly ache her entire life. I don't even think that she knew her belly hurt until she experienced a day *without* the pain - kwim? I certainly didn't realize that I was continuously bloated until I experienced a day without bloating . . . actually, it was the sudden onset of bloating after being bloat free for months that really helped me understand that I had felt that way my whole life . . .but had learned to "ignore" it as part of "me".

University of Chicago highlights awesome statistics that came from Dr. Fasano's 2003 study IIRC - 60% of children and 41% of adults with biopsy proveable celiac are asymptomatic. I posted that link here before, but I can dig it up again if needed.

[Chuck3195]

I recently (4 weeks ago) was diagnosed with Celiac and never had any pain or aches until I started a Gluten Free diet. For about 3 weeks now I have had what feels like side aches in the same area as the discomfort (bloating?) feeling I had before. I guess it's good to hear that this is not uncommon. From what I'm reading it sounds like it will go away eventually (I'm hoping).

I'm wondering if anyone else with aches or pains are having it in any general area (like the sides).

Thanks for any responses.

[T.H.]

Oh, I would love to see it the link, if you have it easily available!

I was asymptomatic when I went gluten free, as was my oldest child. We went gluten free for my second child, and we now have significant and serious symptoms with gluten exposure. Hindsight gives it a slightly different perspective, as I had spent my whole life "normalizing" my symptoms . . . I mean, you have to do something to cope with life, right? My second child had lived with a belly ache her entire life. I don't even think that she knew her belly hurt until she experienced a day *without* the pain - kwim? I certainly didn't realize that I was continuously bloated until I experienced a day without bloating . . . actually, it was the sudden onset of bloating after being bloat free for months that really helped me understand that I had felt that way my whole life . . .but had learned to "ignore" it as part of "me".

University of Chicago highlights awesome statistics that came from Dr. Fasano's 2003 study IIRC - 60% of children and 41% of adults with biopsy proveable celiac are asymptomatic. I posted that link here before, but I can dig it up again if needed.

[elg1716]

Yes this is exactly what happens to me, I read that alot of people who have problems with gluten also do with dairy (at least for awhile), because the little hairs in your intestine that would usually digest the lactose have been damaged by the gluten which makes us lactose intollerant. The positive news is that it is supposed to get better with time, the longer you are off gluten. For now I have found that staying away from gluten and dairy is the best bet. Good luck!

I had this exact same thing. Turns out it was dairy. I was eating gluten-free cheese and stuff. I stay away from cheese and dairy, and i'm fine. Today I had ice cream. I was doubled over. Maybe it's dairy? I read a couple places that a lot of people who have a problem with gluten have a problem with dairy.

[PatrickK68]

On 11/11/2010 at 9:08 PM, Chuck3195 said:

I recently (4 weeks ago) was diagnosed with Celiac and never had any pain or aches until I started a Gluten Free diet. For about 3 weeks now I have had what feels like side aches in the same area as the discomfort (bloating?) feeling I had before. I guess it's good to hear that this is not uncommon. From what I'm reading it sounds like it will go away eventually (I'm hoping).

 

I'm wondering if anyone else with aches or pains are having it in any general area (like the sides).

 

Thanks for any responses.

I was diagnosed 6 weeks ago and immediately stopped eating gluten.  I have almost constant discomfort in my abdomen, especially along the sides.  It's a dull ache and there is definitely bloating, but the bloat is different from when I ate gluten  It happens even when I know I have not had any gluten.  I'm going back to my GI doctor for answers.

[GFinDC]

10 minutes ago, PatrickK68 said:

I was diagnosed 6 weeks ago and immediately stopped eating gluten.  I have almost constant discomfort in my abdomen, especially along the sides.  It's a dull ache and there is definitely bloating, but the bloat is different from when I ate gluten  It happens even when I know I have not had any gluten.  I'm going back to my GI doctor for answers.

Hi Patrick,

Welcome to  the forum!

What you are describing is not unusual for celiacs new to the gluten-free diet IMHO.  The problem with celiac disease is it is an immune response by the body.  The immune system does not stop making antibodies instantly when we stop eating gluten.  That would be nice, but it doesn't work that way.  Instead the immune system slowly winds down and tapers off the immune response, as long we are not consuming any gluten.  That tapering off process could take weeks, months, or more.  Generally it seems like people have a rough time for the first couple months and tend to slowly get better after that.  But, during this recovery, even a small amount of gluten kicks off a renewed autoimmune attack.  So it's very important to remove any possible gluten to heal the gut.

The best way to recover quickly IMHO is to eat mostly whole foods for 6 months.  That means meats, veggies, nuts, and eggs.  Also it can help to avoid all dairy for a month or two.  If you have bloating that is often a sign of poor digestion.

Poor digestion can happen for many reasons, but for newly gluten-free celiacs it is often due to damage to the gut and a bad mix of bacteria in the gut.  Those bad bacteria can multiply because the gut environment is not healthy.  They (bacteria) love poorly digested carbs and sugar, and produce lots of gas (bacteria farts?).  Avoiding sugar and carbs like starches (plain white rice, white potatoes etc) can help starve the bad bacteria and prevent the over multiplying and causing symptoms.

People often call this initial gluten-free period of symptoms gluten withdrawal.  While it can take a year or more to to get fully recovered, many people make slow steady progress over that time.

 

[PatrickK68]

5 minutes ago, GFinDC said:

Hi Patrick,

Welcome to  the forum!

What you are describing is not unusual for celiacs new to the gluten-free diet IMHO.  The problem with celiac disease is it is an immune response by the body.  The immune system does not stop making antibodies instantly when we stop eating gluten.  That would be nice, but it doesn't work that way.  Instead the immune system slowly winds down and tapers off the immune response, as long we are not consuming any gluten.  That tapering off process could take weeks, months, or more.  Generally it seems like people have a rough time for the first couple months and tend to slowly get better after that.  But, during this recovery, even a small amount of gluten kicks off a renewed autoimmune attack.  So it's very important to remove any possible gluten to heal the gut.

The best way to recover quickly IMHO is to eat mostly whole foods for 6 months.  That means meats, veggies, nuts, and eggs.  Also it can help to avoid all dairy for a month or two.  If you have bloating that is often a sign of poor digestion.

Poor digestion can happen for many reasons, but for newly gluten-free celiacs it is often due to damage to the gut and a bad mix of bacteria in the gut.  Those bad bacteria can multiply because the gut environment is not healthy.  They (bacteria) love poorly digested carbs and sugar, and produce lots of gas (bacteria farts?).  Avoiding sugar and carbs like starches (plain white rice, white potatoes etc) can help starve the bad bacteria and prevent the over multiplying and causing symptoms.

People often call this initial gluten-free period of symptoms gluten withdrawal.  While it can take a year or more to to get fully recovered, many people make slow steady progress over that time.

 

Wow!  Great information.  Thank you so much for the quick reply.  I was hoping what you described is the case.  I just need to be patient and stay focused on keeping gluten out.

Thanks again.

[Col from Mich]

Only did Whole Foods, watched salt, drank my daily water intake, walked off n on, slept great, lost 14 lbs in less than 6 weeks. 
Started adding in breads   potato chips, potatoes, and some sugary things. 
My gut aches so badly across the top! I bloat bad even from some good food now. 
I felt good eating Whole Foods etc. and losing weight I wanted to lose. I started gaining back very slowly as soon as I stated bad foods too. I’d much rather eat Whole Foods rest of my life now than suffer trying to reintroduce bad carbs! 
 

 

Edited February 22, 2020 by Col from Mich
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