• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

On And Off Symptoms?
0

2 posts in this topic

Hello -

I'm new and not diagnosed. I've been sick for almost a year now and blood work, MRIs, endiscopy and colonoscopy don't explain any reason why. All came back negative and am getting the "he's crazy" treatment from doctors. I just turned 26. Doctor took a biopsy last month but have yet to get results.

I've only been gluten free for about a week but honestly feel worse so far. Symptoms are heartburn, extreme bloating, and a massive pain in my upper stomach/below my ribs that goes down to about 2 inches above my belly button. Usually an all-around stomach ache and always fatigued. Always a stomach ache. The bloat is massive.

The thing that I find odd is that my symptoms flare up randomly. At least once a day, but sometimes I can go 5 hours feeling fine, then I'll have a bowel movement or maybe just do nothing at all and then suddenly all my symptoms will flare up terribly. Sometimes I'll eat and then suddenly feel 10x worse too - even when I eat gluten free. It seems that I would feel worse like this if I were to eat something contaminated with gluten, but why even when I eat gluten free? Is that normal for the first month or so?

I know it hasn't been long that I've been gluten free, but is it normal to just have your symptoms flare up randomly if you've been feeling ok for a few hours? Seems strange, or like something that would happen if you only consume gluten.

Thank you all for listening.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Hello -

I'm new and not diagnosed. I've been sick for almost a year now and blood work, MRIs, endiscopy and colonoscopy don't explain any reason why. All came back negative and am getting the "he's crazy" treatment from doctors. I just turned 26. Doctor took a biopsy last month but have yet to get results.

I've only been gluten free for about a week but honestly feel worse so far. Symptoms are heartburn, extreme bloating, and a massive pain in my upper stomach/below my ribs that goes down to about 2 inches above my belly button. Usually an all-around stomach ache and always fatigued. Always a stomach ache. The bloat is massive.

The thing that I find odd is that my symptoms flare up randomly. At least once a day, but sometimes I can go 5 hours feeling fine, then I'll have a bowel movement or maybe just do nothing at all and then suddenly all my symptoms will flare up terribly. Sometimes I'll eat and then suddenly feel 10x worse too - even when I eat gluten free. It seems that I would feel worse like this if I were to eat something contaminated with gluten, but why even when I eat gluten free? Is that normal for the first month or so?

I know it hasn't been long that I've been gluten free, but is it normal to just have your symptoms flare up randomly if you've been feeling ok for a few hours? Seems strange, or like something that would happen if you only consume gluten.

Thank you all for listening.

I don't have any answers for this but am also wondering the same thing. I get horrible symptoms after a BM. after feeling fine all the rest of the day.

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
      106,786
    • Total Posts
      932,419
  • Member Statistics

    • Total Members
      64,267
    • Most Online
      3,093

    Newest Member
    Michelle Robinson
    Joined
  • Popular Now

  • Topics

  • Posts

    • People are able to find a very old topic and add to it (bumping it up to current).  We need to remember to check the dates and realize that these people from 10 years ago may not respond.  Also, remember that product info, ma be even medical info, can change in that amount of time.
    • When I was changing doctors due to insurance issues, I got one doc who I told I had celiac, and had been gluten-free for 2 years. He ordered a blood test and said I DID NOT have celiac cause the blood test came back negative....I looked at him like it was crazy, told him course your not going to detect the antibodies in test if I am not eating it. Told him to go back to med school and never went back. Similar experience with another doctor around that time....funny memory glad I found one that knows about the disease to some extent.
    • ÖThe potential celiac or  NCGS  diagnosis is given to me by the Celiac researchEr.  I do not think it's official until after we meet again.  actually I have not heard of that doctors work. I will look it up and see if I can listen to an interview. Thanks for sharing.  some of the symptoms that I continue to have Had on a strict gluten-free diet or similar to what I have now  and some of them disappeared. Of course During that time I was thrown on Xanax and some Protonix even though I don't actually have acid reflux. So there may have been some symptoms that were caused by those medications but I've been off Of Them for months now.  I guess headed pressure would be one of the more prominent symptoms  that I still had on a gluten-free diet although it's much much worse recently well I'm gluten.  it was almost like I can feel a strange sensation in my gut and the head at the same time but it's nothing like what you would think it wasn't cramping it wasn't... I don't know how to describe it. it does not feel anything like sinuses it's a really strange feeling like my brain Is inflamed Or being squeezed.  When I first started getting it it scared the living crap out of me because I thought I was going to end up passing out. I would be afraid to drive alone with my young son. Now admittedly I was diagnosed with inflammation of the small intestine in late August and was gluten free throughout the fall but started eating it again in late December. So I may not have given myself a tremendous amount of time to heal from the August duodenitis.   Currently I have pain in the right rib cage area,  I also get a tremendous amount of pressure in that area mostly when I'm sitting. Kind of like when us pregnant women had a baby's foot stuck up in that area.  I get nausea on and off, some shortness of breath, dizzy,  when my brain gets that  pressure my eyes often feel it as well, and I get some transient numbness and tingling in my hands and oddly in my face.  last summer I had Random episodes of blood pressure drops as well. I would start to really not feel well and noticed that eating actually helped those episodes. I was exercising a lot At the time but ate constantly  and was maintaining my weight. One doctor theorized it might be my blood sugar dropping so I bought a monitor but I never caught that. The only thing that I did catch was when I bought the blood pressure monitor and started taking my blood pressure when these episodes were happening.   for the most part I had pretty good health up until about a year-and-a-half ago and a very strange six months or so about 13 years ago where a lot of neurological stuff happened as well. I had vertigo, visual disturbances, eye floaters, muscles twitching, ants crawling sensation on my scull, some really strange stuff. It lasted about 6 months and over time it just went away.  except for the eye floaters, they stuck around. I'm not particularly concerned about them it's just that they were not there one day and I had some visual disturbances and Bam there they were and they never went away. I have a half-sister with MS but we ruled it out for me at that time and we also ruled it out last summer as well.   I did the whole 12-week thing that they're suggesting for your daughter. We figured the six weeks wasn't long enough.  For the most part other than a few weird things I honestly didn't get strange symptoms until the end of the six weeks so 12 weeks made sense. I think I actually ended up doing 10 weeks before the biopsy This time. Nothing but the increase in IELs.  I know they only biopsy the duodenum and I wonder sometimes if it's not just lower down. But with the negative blood work except for that one random test I don't know if it's really worth pursuing any more testing at this point. I'm so tired.  I know my brother is seronegative but that's pretty rare although I have no idea whether or not they've ever done a study on if that happens to be familial.  I also would really like to know if people who test positive for TTG 6 have any gut damaged. Because if that's the case perhaps there is no seronegative celiac disease  Have you read Dr. Fasano's work?  he writes back both Celiac and ncgs.  How long are you doing your challenge for again?  I know you may be anxious for answers as well but my suggestion just from personal experience would be to go as long as you can. 
    • I should qualify that I'm actually consuming the equivalent of 1-3 slices of bread in the form of vital wheat gluten. Sometimes I have bread, if I'm eating out. But I don't really want all of the carbs and I want to demonstrate that it actually IS the gluten causing the problems and not a Fodmap issue.  My reaction to bread and my reaction to the gluten are the same.  I'm actually shocked at how quickly things have changed. My hair is starting to thin again (boo hoo 😩), and my stools are completely different and it's only been about two weeks. The headache and dizziness and nausea are the worst.  Ennis, you are right. You would think that all of these symptoms would show on blood work. Grrr. I'm hoping that the GI I'm seeing on June 7th will run a preliminary full celiac panel.  It will only be 4 weeks by then.  Will it show something?  My sister has her PhD in immunology and I remember her saying how difficult research in immunology is because you need clearly high antibodies to demonstrate anything. 
    • I am going to have to remember this: "Doctors who fail to notice there are recalls out on their God complex". Brilliant! I'm wondering what symptoms failed to resolve?  All of them?  Some of them?  Neurological ones?  I'm sure you have read Dr. Hadjivassilou's work. I listened to an interview with him and he stated that neurological ones can take a year, and even small amounts of CC set you back. So that is something to consider.  jmg's advice is so sound. Thank you! NCGS - grrr. That one really annoys me. My daughter was first brushed off as Fodmap issues because she also had SIBO.  No one believed me that the SIBO and gluten reactions were not the same.   So she was told it's probably NCGS which is likely really a Fodmap issue.  Resolve the SIBO and she can go back to gluten. No.  Now that she is SIBO free, the neurological symptoms REALLY show through. But she also has terrible stomach pain when accidentally Glutened. Because of the neurological symptoms, now the GI says hmm, she could have celiac but just wasn't far enough along to test for it. Does she want a 12 gluten challenge?  What part of she loses the use of the right side of her body didn't you understand?  No gluten additional challenge for her.  But I have now noticed my reaction and my history of headaches and anemia and unexplained weight loss and hair thinning and stress fractures. So I'm going through the gluten challenge. It's for me, it's for my daughter, it's for  my niece and nephew who all have early symptoms that I recognize but my sister won't take seriously.  And I'm running it as a bit of an experiment.  I have eaten a low Fodmap diet for a year because of my daughter's SIBO. I purposely added high Fodmap foods first to see what happened (no gluten).  All good. I added bread, noted the reaction. I added JUST vital wheat gluten. Exact same reaction as bread.  In fact right now I'm pretty much just doing the gluten that is equivalent to a couple pieces of bread, eating bread or pasta when I occasionally go out. I am NOT going to have them tell me it's not gluten when it clearly is.  It seems that certain celiac research centers have all of their eggs in the NCGS/Fodmap basket at the peril of their patients.   Again, ironic truth, good luck with the Gluten-Free, give yourself time and be patient.  I can tell you that strict gluten-free was more than I initially thought. It took some time before we eliminated all of the CC. I was personally shock at how little it took to cause problems. I would definitely like to know how you are doing. So many people move off of the boards and I wonder how they are doing.   
  • Upcoming Events