Can You Explain This One?

[Pisqualie]

Hello!! I posted a few weeks ago about taking a trip to Europe (from the US) and I was concerned about eating out for ten days without wheat while traveling. Before I left, eating wheat would result in severe cramping and send me to the restroom within 20 - 80 minutes after. Well, upon arriving in Paris ... I ate some bread in a restaurant the first night - I could resist! But... nothing happened! So I thought hmmm.... and ate more, and by the third meal I didn't even pay attention anymore. I ate pizza at an Italian place in Paris, rolls in London, flour tortillas in Ireland - and was fine. Bloated and constipated ... but no pain.

Then... upon arriving back home, suddenly my bladder began spasming (weird?) and I started to feel that familiar pain again. I had pancakes for breakfast yesterday morning and felt more and more achy through the day, and then today I was feeling some sharp pains. Lactose for breakfast - still achy. But the clincher was lunch - I had bread at lunch and that resulted in a restroom visit after eating it.

This must not be Celiac, right? Why could I eat bread in Europe but not in the US? My suspicion is plain ole stress. Can stress cause Celiac-like issues?? I feel very stressed upon arriving home...

Thanks for your insight. (PS - I have not been able to pinpoint symptoms with anything other than milk, and even that is not as specific/predictable...)

[Mom23boys]

HHmmmm -- it is probably a build up reaction but I would also consider some of the additives we have here

How does a fresh, homemade bread work?

[mushroom]

Why don't you get the testing done first, then ask questions? (I believe the European flour is very different to that in the U.S. - in terms of gluten content, hybridization, etc.)

[benXX]

Bread in France is made without milk

[dani nero]

how were your mood and humor though? were you having any negative feelings or irritability?

[deb445]

Did anyone else read "somewhere" that North American wheat contains

the highest percentage of gluten? Was it 40% more gluten? 60% more?

I remember reading it, and having an "aha" moment, because my sister

had just returned to Canada after living in England for 6 years, and

was SO sick! (MS suspected)

[Carebear]

Were you walking a lot? My GI symptoms are mediated by lots of exercise. Also, depending on your tolerance, it could just be that the flour over there has a lower gluten content and you can handle it better. I second the dairy comment above...

[eatmeat4good]

If you were gluten free for any length of time, the antibodies could have died down.

It is one of the reasons they used to think children outgrew Celiac.

At some point they appeared to be able to eat gluten again.

But then they noticed that these kids are the ones who developed the secondary autoimmune diseases and cancers associated with Celiac.

Don't een know if you are Celiac or not, but that could happen. The antibodies go away when your body doesn't have to fight wheat anymore. Then it takes time to build them up when you do start eating wheat.

It could be the percentage of gluten in the wheat too.

Bladder spasms are one of my symptoms of being glutened.

Many people here get bladder spasms from wheat/gluten.

They resemble a UTI but are not positive for bacteria.

[sandsurfgirl]

Have you been diagnosed with celiac? Have you ever been on the gluten free diet? It seems from your post that you are not diagnosed and you haven't been gluten free but are searching for answers. I'm going to answer you under that assumption so correct me if I'm wrong.

While you are eating gluten, celiac symptoms can wax and wane and they can move around your body. So you have tummy issues for awhile. The tummy issues go away but you start having headaches. Headaches clear up and you get sinus infections. Tummy problems come back mysteriously and you think it's dairy. They go away and you think okay that problem is gone. But the bronchitis starts or the anxiety attacks, or whatever odd symptom.

That is one reason celiac is so hard to diagnose. The textbook example rarely exists. There were so many times my weird stomach issues would go away and I would think I was cured of whatever that odd condition was. Then they would resurface mysteriously.

So it's not weird for a celiac to be able to eat bread and then all of a sudden not be able to.

If you are not diagnosed and have never been gluten free keep eating gluten and get tested. The tests are crap garbage and have way too many false negatives so if it's negative, give gluten free a try anyways.

[Christine0125]

Before I was diagnosed stress always exacerbated my symptoms.

It sure does sound like a delicious trip through Europe but it seems going back to gluten free is the way to go.

[Pisqualie]

You are all so kind, supportive and helpful - thank you so much!!

I have been tested, but just blood and it came back neg. The dr said to expect that considering I have been off wheat. Well, until recently.

Since I posted, I did some research and it does appear to be a common thing that people have more ability to withstand the wheat/gluten in Europe. Go figure.

I have been eating "normal" since my return home. I considered myself to be a hypochondriac but now I think Celiac or at least wheat intolerance has some merit.

Gosh, bladder spasms - brilliant! I hadn't seen that matched up to Celiac yet... makes sense. I have chronic headaches and sinus infections and bladder infections ... have had them all my life.

Question: I am supposed to go get an endoscopy and colonoscopy. My out of pocket is about $150. Would you recommend investing that and looking? Should I just assume I have it and adapt the lifestyle? I am so afraid of them going in and saying everything looks normal (yet still have symptoms). Is it worth that $150 ... or should I just invest that $150 into healthier living? This may belong in the diagnoses forum but you know the backstory now...

Thanks for your help, everyone!!

[Pisqualie]

how were your mood and humor though? were you having any negative feelings or irritability?

No, I was having a wonderful time. I did, however, develop an ear infection and had to rail/ferry to Ireland vs fly there. The pain was excruciating landing in Frankfurt and then London, and I had a dr make a house call and was prescribe Amoxicillin. The flight home 5 days later was absolutely fine (with a lot of decongestant!)

[Pisqualie]

Were you walking a lot? My GI symptoms are mediated by lots of exercise. Also, depending on your tolerance, it could just be that the flour over there has a lower gluten content and you can handle it better. I second the dairy comment above...

Yes, we walked ALL OVER those stinkin' cities from morning to night. I was very bloated but no urgency. I never really even used the restroom in Europe... uncomfortable! Usually upon consuming bread, I am rushing to the bathroom. Maybe I confused lack of urgency with "ok" ....

[Pisqualie]

Before I was diagnosed stress always exacerbated my symptoms.

It sure does sound like a delicious trip through Europe but it seems going back to gluten free is the way to go.

I must admit... I really enjoyed eating the bread. It will be harder to give it up again the second time... I was testing it out since I've gotten home but now, armed with this information, sounds like that is foolish and causing inevitable discomfort. I am very bloated and it is building back up. Stress levels are higher. Bleh.

[sandsurfgirl]

Yes, we walked ALL OVER those stinkin' cities from morning to night. I was very bloated but no urgency. I never really even used the restroom in Europe... uncomfortable! Usually upon consuming bread, I am rushing to the bathroom. Maybe I confused lack of urgency with "ok" ....

Are you saying no bowel movements the entire trip? That's a celiac reaction- constipation instead of D.

[TJSpin]

Search for "deamidated gliadin". My understanding is that the wheat in the US has deamidated gliadin and that Europe doesn't allow for the import of our wheat. I believe Dr. Davis, from Wheat Belly, stated that on an Underground Wellness podcast.

[CoachAng]

Hi! I am new to the forums, but found this one and wanted to post. I recently began experiencing symptoms within the abdominal area (thought it was urinary tract related) and saw my OB/GYN. Long story short, I have now seen several doctors, countless x-rays, bloodwork, and more. I have also been going to therapy for my abdomen (lots of abdominal tension). Still in pain, mainly surrounding my bladder. On my own, I found an Integrative MD. He has me doing several tests including saliva and stool samplings. He thinks my problems stem from the stomach. I was tested for Celiac back in 2009 - tested negative. The reason I was tested in 2009 is because my brother was having immense stomach issues for almost 20 years. He was finally diagnosed with Celiac disease through this same Integrative MD. All the other doctors said his condition was IBS. His celiac is a severe case, too. With that said, I decided to get tested because of my skin issues. Like I said, the tests showed negative, but I have read where there are chances of false negatives. At that time, other than acne, I was non-symptomatic, or so I thought. Probably TMI, but I always thought celiac meant chronic diarrhea and I am on the other end of the spectrum - can go days with no BM. Always thought I was the lucky one with no tummy issues between my bro and I. I am now believing I was SO SO wrong.

With my recent testing, doctors tried to diagnose me with interstitial cystitis but could never prove it to be that. They said it was basically a diagnosis via a process of elimination of other issues. Not once did the specialists say it could be my stomach. My brother and I began to research gluten and the bladder and spasms and found there is a direct link to bladder issues and gluten sensitivity/allergies. I am in the midst of my testing and am trying to find a good support network.

I am very healthy, very active, and take good care of my body. This has come as a devastating shock because I have spent most of my adult life on a mission to be as healthy as possible. I would appreciate any support/guidance you could provide.

Thank you!

Ang

[kareng]

Hi! I am new to the forums, but found this one and wanted to post. I recently began experiencing symptoms within the abdominal area (thought it was urinary tract related) and saw my OB/GYN. Long story short, I have now seen several doctors, countless x-rays, bloodwork, and more. I have also been going to therapy for my abdomen (lots of abdominal tension). Still in pain, mainly surrounding my bladder. On my own, I found an Integrative MD. He has me doing several tests including saliva and stool samplings. He thinks my problems stem from the stomach. I was tested for Celiac back in 2009 - tested negative. The reason I was tested in 2009 is because my brother was having immense stomach issues for almost 20 years. He was finally diagnosed with Celiac disease through this same Integrative MD. All the other doctors said his condition was IBS. His celiac is a severe case, too. With that said, I decided to get tested because of my skin issues. Like I said, the tests showed negative, but I have read where there are chances of false negatives. At that time, other than acne, I was non-symptomatic, or so I thought. Probably TMI, but I always thought celiac meant chronic diarrhea and I am on the other end of the spectrum - can go days with no BM. Always thought I was the lucky one with no tummy issues between my bro and I. I am now believing I was SO SO wrong.

With my recent testing, doctors tried to diagnose me with interstitial cystitis but could never prove it to be that. They said it was basically a diagnosis via a process of elimination of other issues. Not once did the specialists say it could be my stomach. My brother and I began to research gluten and the bladder and spasms and found there is a direct link to bladder issues and gluten sensitivity/allergies. I am in the midst of my testing and am trying to find a good support network.

I am very healthy, very active, and take good care of my body. This has come as a devastating shock because I have spent most of my adult life on a mission to be as healthy as possible. I would appreciate any support/guidance you could provide.

Thank you!

Ang

Why not get the Celiac blood tests before you spend a lot of time and money on other things? Just because they were negative 3 years ago, doesn't mean they will never be positive.

[CoachAng]

Why not get the Celiac blood tests before you spend a lot of time and money on other things? Just because they were negative 3 years ago, doesn't mean they will never be positive.

I tried to get my GP to run the bloodwork panel again. When he ran it 3 years ago, since it was elective on my part, it cost me $1200 out of pocket. Roll forward to two months ago - I was having serious bladder issues, to the point, I could not stand up or walk. Uncontrollable spasms, shock pains, frequency - all symptoms led to bladder issues according to the docs. Honestly, gluten did not even cross my mind at that time. I was sent from my GYN directly to a urologist for testing. It has taken 2 solid months of constant appts with the urologist, GP, physical therapist, and more to get to this point. I was basically told nothing was wrong - all tests showed a healthy being. Ordered to go to physical therapy and come back in 3 months. When you are in pain, waiting is not doable. I began doing LOTS of research on my own when the pain became more intermittent. This is how I stumbled across the connection between gluten and bladder.

[IrishHeart]

I tried to get my GP to run the bloodwork panel again. When he ran it 3 years ago, since it was elective on my part, it cost me $1200 out of pocket. Roll forward to two months ago - I was having serious bladder issues, to the point, I could not stand up or walk. Uncontrollable spasms, shock pains, frequency - all symptoms led to bladder issues according to the docs. Honestly, gluten did not even cross my mind at that time. I was sent from my GYN directly to a urologist for testing. It has taken 2 solid months of constant appts with the urologist, GP, physical therapist, and more to get to this point. I was basically told nothing was wrong - all tests showed a healthy being. Ordered to go to physical therapy and come back in 3 months. When you are in pain, waiting is not doable. I began doing LOTS of research on my own when the pain became more intermittent. This is how I stumbled across the connection between gluten and bladder.

A sibling with celiac disease is enough reason to re-test. It is not "elective" if you have symptoms and a family history.

I had terrible bladder and chronic pelvic pain (so bad I could not walk or sit comfortably for 3 years) from celiac and went through all the same docs (GYN, UROGYN, etc. and PT and endless BS) only to find it resolved off gluten post diagnosis. But by then, I had so much pain and OTHER symptoms and severe muscle wasting and tendon pain that I am STILL in PT 18 months later.

Do not wait until you are this bad.

Tell one of those docs you see to test you!

[CoachAng]

A sibling with celiac disease is enough reason to re-test. It is not "elective" if you have symptoms and a family history.

I had terrible bladder and chronic pelvic pain (so bad I could not walk or sit comfortably for 3 years) from celiac and went through all the same docs (GYN, UROGYN, etc. and PT and endless BS) only to find it resolved off gluten post diagnosis. But by then, I had so much pain and OTHER symptoms and severe muscle wasting and tendon pain that I am STILL in PT 18 months later.

Do not wait until you are this bad.

Tell one of those docs you see to test you!

THANK YOU for your responses!!! The integrative MD has me doing the saliva and stool testing right now (just shipped the vials yesterday). He has ordered up some tests for thyroid - I am calling the office to verify if gluten/celiac is one of the tests they ordered. I think it is.

Did any of you ever have night sweats or heart palpitations when you were consuming gluten? Also, I have been eating gluten intentionally until the blood-draw tomorrow. I ate some in my cereal this AM. If I avoid it the rest of today/tomorrow, it should not alter the tests, should it?

[kareng]

The Celiac test is a blood test.

[MitziG]

As the above poster mentioned, when you have an immediate family member with celiac, the recommendation is to be re-tested every 3-5 years. It is not elective and your insurance should cover it without batting an eye. Chronic constipation is a big celiac flag as well, and you should be tested again because of that. Then, by all means, do the diet! As someone with both celiac and interstitial cystitis, going gluten and dairy free has changed my life! Bladder spasms are hard for those who haven't had them to understand, but they are crippling! I wish more docs knew of the connection to gluten!

[MitziG]

And also, the celiac panel is a blood test- a complete panel of all 6 tests should be done. Most docs only run one or two and call it good, and likely that is all that was done on you before as well.

[CoachAng]

The Celiac test is a blood test.

Okay, I reviewed my lab order for tomorrow. He is testing for vitamin deficiencies as well as thyroid AND he is running a celiac panel (it looks like it includes Gliadin IgA, and Gliadin IgG). Not sure what this all means, but hoping I get answers. Since the tests will be run in the next 24 hours and the fact that I ate some gluten with breakfast, I am hoping I can stop eating gluten now and see if I get relief.

Since Thursday, I have been experiencing lots of pelvic pain (thought it was cervical pain) and now having what feels like the on-set of sinus issues. Lots of mucus and stuffy nose at wake up. I just need to get some relief. I cannot imagine what others have endured as I feel like my symptoms became more prominent only months ago. Questions: Did anyone experience heart palpitations, constipation, and/or night sweats when consuming gluten?

THANK YOU SO SO MUCH!!!!!!