Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Hello To All/new Guy Questions


nephlim

Recommended Posts

nephlim Rookie

Hey folks.

I'm male, 25 years old, and live in the US. I've had this lower GI condition since May of 06. It started with a slight cramping/nausea feeling while eating. From there, it progressed to these horrible cramping pains along my belt-line. With it came frequent and cramping BMs, and then constipation, then epic, cramping BMs. Now, I've got quite a pain tolerance. I've broken knees, had serious burns, even had things under my fingernails, but this lower cramping beats all. Worst of all, it would seem to come out of the blue, almost like an attack.

I racked my brain trying to figure out what is was. I cut meat, dairy, alcohol, chocolate, and all fatty and processed foods from my diet. Granted vegan diets like this can lead to weight loss, but I have lost over 40lbs since May of 06.

I had an endo and colonosocpy done. The endo showed gastritis (inflamation of the mucosal lining); this was also shown on the GI follow through test, which also suggested some "spasms". They tested for bacteria and viral infections, both neg. They asked me about celiac, but considering that grains and rice and such were staples of my diet, we didn't pay it much thought. Though, despite the diet, the negative findings, prilosec OTC and sucrafate, I was still getting sick.

Then a friend sugested it could be a gluten intolerance. It's been a few days now without any gluten and so far I feel better. I have since made an appointment with my PCP to test for gluten intolerance/celiac disease. No one in my family has any of these symptoms. Prior to this, I could eat anything I wanted. The only triggers I could think of is that I was under HUGE amounts of stress, sleep dep, and probably drank a bit much to compensate.

Does this sound like it could be gluten related? Can an intolerance just "appear" out of the blue like that? Could things set it off? Any info/feedback would be great.

Thanks a bunch,

-Dan


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



codetalker Contributor
Does this sound like it could be gluten related? Can an intolerance just "appear" out of the blue like that? Could things set it off?

That's the way it happened for me. Not as sudden or as severe as it appears you are experiencing. However, there are a lot of similarities.

Symptoms, such as the ones you mention, started in my mid-20's and appeared pretty much out-of-the-blue. Stress and other factors seemed to aggravate the situation. Prior to that time, I could and did eat anything I wanted and any quantity. No one in my family had similar symptoms. As far as I know, none of my relatives have Celiac disease.

Good luck with the tests. Hopefully, you will get a definitive result one way or the other.

Guest cassidy

Stress can certainly trigger things. You may already have your answer since you are feeling better on the diet. If you didn't have a problem with gluten then you shouldn't feel any different on the diet.

If you had an endoscopy and they didn't mention celiac then I would think your blood test would be negative as well. The blood tests aren't accurate which is frustrating, but the way it is. Also, you would also need to keep eating gluten before a blood test so you could have the best possible chance of having a positive blood test. Some people went through testing and other people feel a positive dietary response is all they need, that is a personal choice.

Please realize that it takes a while to find all the hidden gluten and that you may have ups and downs in the beginning. I used to get myself sick all the time in the beginning but it does get easier. I would hate for you to have a couple of good days, get yourself glutened and then think the diet isn't working at all because you don't feel good again. It also takes a while for all the gluten to get out of your system. I find it is 2-3 weeks after I'm glutened until I feel 100% again.

I hope this is the answer for you. This board has some great information. Good luck and glad you are doing better.

GlutenWrangler Contributor

It definitely could be celiac disease or gluten intolerance. It is good that you asked to be tested for it. Kepp in mind, if the tests are far into the future, eating gluten-free before hand will affect the test. Just something to keep in mind. But it definitely might be a sign that you are feeling somewhat better after going gluten-free. Take care, and good luck.

-Brian

mamabear Explorer
Hey folks.

I'm male, 25 years old, and live in the US. I've had this lower GI condition since May of 06. It started with a slight cramping/nausea feeling while eating. From there, it progressed to these horrible cramping pains along my belt-line. With it came frequent and cramping BMs, and then constipation, then epic, cramping BMs. Now, I've got quite a pain tolerance. I've broken knees, had serious burns, even had things under my fingernails, but this lower cramping beats all. Worst of all, it would seem to come out of the blue, almost like an attack.

I racked my brain trying to figure out what is was. I cut meat, dairy, alcohol, chocolate, and all fatty and processed foods from my diet. Granted vegan diets like this can lead to weight loss, but I have lost over 40lbs since May of 06.

I had an endo and colonosocpy done. The endo showed gastritis (inflamation of the mucosal lining); this was also shown on the GI follow through test, which also suggested some "spasms". They tested for bacteria and viral infections, both neg. They asked me about celiac, but considering that grains and rice and such were staples of my diet, we didn't pay it much thought. Though, despite the diet, the negative findings, prilosec OTC and sucrafate, I was still getting sick.

Then a friend sugested it could be a gluten intolerance. It's been a few days now without any gluten and so far I feel better. I have since made an appointment with my PCP to test for gluten intolerance/celiac disease. No one in my family has any of these symptoms. Prior to this, I could eat anything I wanted. The only triggers I could think of is that I was under HUGE amounts of stress, sleep dep, and probably drank a bit much to compensate.

Does this sound like it could be gluten related? Can an intolerance just "appear" out of the blue like that? Could things set it off? Any info/feedback would be great.

Thanks a bunch,

-Dan

Sometimes the GI's just "look" at the duodenum;think it looks normal to them and don't biopsy! Ask if they did a biopsy or not. And since is a patchy disease.....it can potentially miss any areas involved.

I would suggest expediting the PCP appointment and get any blood work done ASAP since you have found gluten free makes you better.....it may be changing your serologies as we speak ! If you have private insurance, it will also still be on this years's deductible !!!By the way, I was the first and only known celiac in my family.and also the only thyroid disease,too.

nephlim Rookie
Sometimes the GI's just "look" at the duodenum;think it looks normal to them and don't biopsy! Ask if they did a biopsy or not. And since is a patchy disease.....it can potentially miss any areas involved.

I would suggest expediting the PCP appointment and get any blood work done ASAP since you have found gluten free makes you better.....it may be changing your serologies as we speak ! If you have private insurance, it will also still be on this years's deductible !!!By the way, I was the first and only known celiac in my family.and also the only thyroid disease,too.

Hey there. Yes they did a biopsy, and looked for H plyori and other bacteria. All came back neg/unremarkable.

Even if the gluten test comes back neg, I'll continue the gluten-free diet because if it makes me feel better, that's all that matters in the long run :)

Nancym Enthusiast

I had those "attacks" too. I'd end up on the toilet almost sobbing with the cramping spasms. Oy, it hurt! I basically had them disappear 2 days into the gluten-free diet. I never looked back. I'd suffered with it for years and years. Looking back I can see now a variety of things that I missed, the autoimmune diseases, the bad gas after eating cookies, all kinds of strange things that have gotten better or gone away.

You might want to check out www.enterolab.com for testing and get a casein (milk products) test done at the same time. I found out the milk products are nearly as bad as the gluten for me.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Looking for answers Contributor

Although my symptoms weren't as severe as yours, my did just appear out of the blue. Like another person noted, looking back I did see many signs over the years but didn't realize how problematic they really were: D, gas, cramps after eating--they just became a way of life. I was never officially diagnosed with Celiac because I went gluten free almost a year before testing (long story). I'll never really know if I have the disease or not, but I do know without a doubt that I'm gluten sensitive/intolerant and feel soooo much better living wihout it.

Good luck to you!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,205
    • Most Online (within 30 mins)
      7,748

    Butch68
    Newest Member
    Butch68
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.