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

Close To 2 Years Gluten Free And Still Bad Weeks?


LolaB

Recommended Posts

LolaB Apprentice

Hi all my Celiac friends .......... I need you all!  Ive been close to 2 years strick gluten free diet, after being diagnosed finally after well most of my life, lets say 25 plus years..For my 1year colonoscopy my Gastro told me my Villi was completely healed....I was so happy!!!! ...anyways, I was also told I have IBS and my intestines spaz a lot, causing my D or urgency to go.  For close to a month now, Ive had good days and well bad days, lots of D, stomach pain, achy legs, feeling run down ...... and the cycle continues ......... this week has been hell, cramping with anything I eat, D, water D as well,  achy legs, and a dull fever ......... I have been driving myself crazy thinking if I have been glutened, stress causing my ibs to be real annoying and feeling that maybe a gluten free diet wont help, to be honest I am scared. I did figure out my cat's food has Brewers yeast (GLUTEN) could I be that sensitive?  and no I am not eating it!!  :P  Having Celiac disease for me at times feels very lonley ... so many questions and not a lot of answers ......... Please help!! :unsure:


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



Celiac.com Sponsor (A8-M):



NatureChick Rookie

So sorry to hear that you're feeling lousy but good to hear that you're not eating the cat's food.   :D  I haven't had a pet since going gluten free so I don't have any personal experience with how much contamination pet food can add to your home.

 

I'll admit that I occasionally worry about what the long-term effects of gluten damage might be because I went undiagnosed for decades as well. I know I still have thyroid disease but worry what else might be going on or how aging will exaggerate issues.

I personally feel that a diagnosis of IBS isn't actually a diagnosis at all. I know I used a food diary to help figure out additional intolerances but my IBS turned out to be a B12 deficiency.

B12 deficiencies can cause abdominal pain and diarrhea. Symptoms can arise if levels drop below 400 (according to the lab that ran my tests) but the U.S. range for normal dips down to 200. (Japan's low end of the normal range is 500.) Because vitamins and minerals play a role in so many of our digestive processes, if you haven't in a while, I'd get tested for vitamin deficiencies in general and get the results in hand so that you can see how far you might be from ideal levels. Exercise and stress (as well as being vegetarian or vegan) can sap our B12 stores.

Have you changed the way you eat because of the seasons? Are you eating more raw foods or more produce in general as they become more-available in summer? The cellulose in fruits and veggies is difficult to digest, especially as we get older. Cooking does help break down cellulose. And there is some compound in fruits and veggies that disappears as foods ripen that many people are hypersensitive or allergic to. I forget the name of it, but it starts with an S. It didn't used to be a problem back when people were picking ripe food out of their own yards or gardens, but has become more of an issue these days when food is shipped halfway around the world and picked long before ripening. And some people have an intolerance to melons that might also be a seasonal problem. (The chemical they react to is near the surface and in the skins, so watermelon that you only eat the center of might not be a problem, but an unpeeled cucumber might be.)

If not a food intolerance from a food itself, artificial colors also cause some pretty varied symptoms and can cause damage to the digestive system.

The way your symptoms present themselves might help you figure out the causes. Some food intolerances don't cause pain right away, but when the food makes it to the large intestine without being fully digested, it can cause cramping first and possibly D. Then it would be more likely to be a problem of lack of enzymes to help digestion.

Hormone imbalances can also cause digestive symptoms. Or have you taken antibiotics recently or have you tried probiotics to affect glut flora?

Of course, there are plenty of other things that can cause pain or D, but those are some simpler ones that are pretty common.

I hope that helps get you started on researching some topics you might not have already. I'm sorry that we can't really do much other than proffer ideas.
 

beth01 Enthusiast

I have two cats who love to drink out of water glasses, been glutened from them.  I now drink my water out of a covered container.  I also am trying to switch my kitties to gluten free cat food.  They have been really happy with it, they don't really like the gluteny food anymore.  I also don't feed my cats, my boyfriend does along with the fish.  There is just too much risk for cross contamination and a case of OCD trying to get my hands washed after handling all the gluten.

 

For the rest of it, I agree with NatureChick.  Do you still have your gallbladder?  Doesn't explain the leg stuff going on but maybe it is referred pain?  I would also check all labels again.  Some get in the habit of thinking since it was gluten-free once it will be gluten-free whenever it's bought.  Maybe a company started sharing lines, or snuck that nasty gluten in there somewhere.

 

Hope you figure out the cause of all your discomfort and start feeling better soon.

GF Lover Rising Star

Hi Lola.

 

To see the villi you need an endoscopy procedure not a colonoscopy.  Keep in mind that your issues may be separate from Celiac Disease.  Has your GP run any tests on you.  Are you taking any medications that may be effecting you?  You said you have a fever, do you have an infection/virus?  Has your Thyroid been checked?  

 

Colleen

user001 Contributor

There are many other foods that can cause issues in that department! I always feel like IBS is a symptom not a diagnosis. I would suggest looking into working with a nutritionist to figure out what is causing the problem. Or doing alot of research on your own to create an elimination diet to see what is bothering you. I think my biggest help has been keeping a food diary and tracking how i feel.

skullgrl Rookie

If you are the one pouring the dry kibble and there is a big dust cloud, you can breathe it in then it would have to go down your throat (remember they're connected). Or if the dust is getting on your clothes and you touch your mouth... etc. etc. If its wet food is it possible that you're washing the cat food dishes with your regular ones? A dishwasher should be able to wash both and get it off but I don't trust the terrible dishwasher in our apartment. If you leave the dishes in your sink together that might be an issue, if you don't hand wash them well enough.

 

It doesn't hurt to rule out the kitty food whilst taking a look at other things. 

kareng Grand Master

Like Colleen said, a colonoscopy isn't the best way to see if you have Celiac damage. It is possible to get to the far end of the small intestines that way but , it seems that the damage is more likely found at the top end ( endoscopy). Are your yearly Celiac blood tests good? That might help to see if you are getting some gluten accidentally.

Have they tested your thyroid recently? Iron, ferritin, B12, vitamin D?

But this just started up a month ago? That sounds like something else? Maybe a virus? Appendicitis? Etc. I would go to your doctor and see what you can find out.


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



Celiac.com Sponsor (A8-M):



LolaB Apprentice

sorry everyone, but yes it was an endoscopy not the colonoscopy.  I must have been in a brain fog!  All my vitamin levels are great!  I seem to be back on track this week, must have been a bad run!  I know if I am under some stress, it reflects in my stomach.  Thanks for the advice :rolleyes: 

GF Lover Rising Star

Glad your feeling better.  

 

Colleen

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      High TTG-IgG and Normal TTG-IgA

    2. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      High TTG-IgG and Normal TTG-IgA

    3. - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    4. - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

    5. - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,869
    • Most Online (within 30 mins)
      7,748

    LMGarrison
    Newest Member
    LMGarrison
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
×
×
  • 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.