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

How Long Before Normal?


Karmann

Recommended Posts

Karmann Newbie

What is the average time for a celiac (what I call myself)to begin to reach a consistent "normal" after going gluten-free?

I have been gluten-free for 5 months and there are times where everything gastrointestinal related is fine and there is no diarrhea and then within the week, back to having cramps, diarrhea, and constantly having to "go". It's essentially a roller coaster because sometimes I'm ok for a week or two and others it's every other day that I'm having the same effects as being "glutened" even though I don't think I have judging that everything I have eaten has been gluten-free.

The doctor had said there was a half-life of some kind and that it may take a while for the gluten to work it's way out but, 5 months seems pretty long to still be experiencing issues...

Any help is much appreciated.


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



Celiac.com Sponsor (A8-M):



Jestgar Rising Star

I'm not sure there is an average. Every person is different, and the time to heal also depends somewhat on how young you are when diagnosed, how damaged, how truly gluten-free your diet is, etc.

Darn210 Enthusiast

My daughter got a lot better within about 2 months. However, she had a reoccurring issue that would rear up about every three weeks. I, of course, kept running around in circles trying to figure out what was contaminated or if there was another food intolerance. Then at about the 8 month mark, the every three weeks was four weeks then six weeks then gone. I now attribute it to just taking that long to finally heal.

carecare Enthusiast

Took my husband a good 6 months for his diarrhea to totally clear up. He knew it was less frequent but was still having bouts of it. Every time he'd think maybe he was glutened but he really wasn't. It just took that long for him to heal. His stomach pain/indigestion went away immediately going gluten free so he knew he had improved despite the D. The D not clearing up after a couple months was the reason he decided to end his first trial of a gluten free diet. He was so happy he stuck it out longer the second time.

  • 2 months later...
Karmann Newbie

Well, turns out that the culprit was DAIRY. And I have now been off for 2 months and feel great!

Now the trick is trying a little every now and then to see if I can tolerate it again. Great resource this forum is!

Tom2 Rookie

I have asked that same question. Seems to be different for everyone considering how bad you were before going gluten free. For me its been almost a year and still asking how long, but after reading several of these post I think my problem has been compounded by soy and cross contamination. Don't give up just keep seeking!

heidi g. Contributor

Your body might be flushing out your system. Or you have a certain food you can't tolerate. I just found out i can't tolerate corn :( no more tacos and corn tortillas for me :( I wonder if Gluten can be stored in your fat cells. I read this story where a teenager got poisoned from termites or some type of bug from the gasses they produce and it was stored in his fat. And when he lost weight, the poisons were released and he got deathly ill. He had to pump his system full of calories to stop the poisoning from his fat cells. I wonder if that's possible with gluten... not sure. Usually when you have diarrhea, your body is trying to flush something out.


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



Celiac.com Sponsor (A8-M):



TTNOGluten Explorer

I have asked that same question. Seems to be different for everyone considering how bad you were before going gluten free. For me its been almost a year and still asking how long, but after reading several of these post I think my problem has been compounded by soy and cross contamination. Don't give up just keep seeking!

I have been at this for 2 1/2 months, and my symptoms have actually worsened to some extent with increasing abdominal pain that is constant, and continous back spasms. My bloating, burning, and lump in throat that I started with have improved, but the trade for pain is worse. I ceertainly think I am as consistent as can be with the CC, and am mostly on whole foods with very little processed. did find out this past week that I am also allergic to milk protein through recent allergy testing, so that is out. How frustrating this whole process is, nearly everyday I question if there is something else going on to cause this, or if I just have to be patient. Just doesn't seem right to have this much pain daily

T.H. Community Regular

Congratulations on figuring out that it's dairy!

I have been at this for 2 1/2 months, and my symptoms have actually worsened to some extent with increasing abdominal pain that is constant, and continous back spasms.

Have you ever been checked for the H. pylori bacteria, or gotten the endoscopy? Celiacs are more susceptible to the bacteria, and it can cause ulcers.

Fructose malabsorption might be worth looking at as well, since this seems more prevalent in those with other gut issues, and can cause gut pain and bloating/gas.

Or it might be cc - I get the muscle issues when I get low level cc. Perhaps one of your foods' companies changed a process or something that is making it slightly higher in gluten cc levels? Might be worth while to call them up, see what their testing protocol for gluten is, just to make sure it's not an issue, you know?

TTNOGluten Explorer

Congratulations on figuring out that it's dairy!

Have you ever been checked for the H. pylori bacteria, or gotten the endoscopy? Celiacs are more susceptible to the bacteria, and it can cause ulcers.

Fructose malabsorption might be worth looking at as well, since this seems more prevalent in those with other gut issues, and can cause gut pain and bloating/gas.

Or it might be cc - I get the muscle issues when I get low level cc. Perhaps one of your foods' companies changed a process or something that is making it slightly higher in gluten cc levels? Might be worth while to call them up, see what their testing protocol for gluten is, just to make sure it's not an issue, you know?

T.H.

I actually have had multiple studies, including two endoscopies, H.Pylori, and a number of other labs all of which looked OK, only thing they found on endoscopy were the findings consistent with celiac and some mild gastritis, for which I have been taking Nexium faithfully. NO luck, seeing a surgeon next week to see if maybe they may even try taking out my gallbladder just to see it helps due to the pain in my back as well. All I know at this point is that I am darn near disabled from the pain, and prior to 3 months ago was totally fine, with no issues what-so-ever. That is why I struggle to understand this degree of pain solely on a basis of celiac disease alone, even the GI guys are scratching their heads and cannot understand it???

heidi g. Contributor

gas? I have had gas pain so intense i have had to lay down and it just sits there.

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

      Blood tests low iGA 4 years later digestive issues

    2. - Aretaeus Cappadocia replied to Clear2me's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Gluten free nuts

    3. - trents replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      42

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    5. - Wheatwacked commented on Scott Adams's article in Latest Research
      6

      Study Estimates the Costs of Delayed Celiac Disease Diagnosis (+Video)


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,387
    • Most Online (within 30 mins)
      7,748

    LizzieE
    Newest Member
    LizzieE
    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

    • Mmoc
      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
    • Aretaeus Cappadocia
      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
    • Wheatwacked
      Some backup to my statement about gluten and milk. Some background.  When my son was born in 1976 he was colicky from the beginning.  When he transitioned to formula it got really bad.  That's when we found the only pediactric gastroenterologist (in a population of 6 million that dealt with Celiac Disease (and he only had 14 patients with celiac disease), who dianosed by biopsy and started him on Nutramegen.  Recovery was quick. The portion of gluten that passes through to breastmilk is called gliadin. It is the component of gluten that causes celiac disease or gluten intolerance. What are the Effects of Gluten in Breastmilk? Gliaden, a component of gluten which is typically responsible for the intestinal reaction of gluten, DOES pass through breast milk.  This is because gliaden (as one of many food proteins) passes through the lining of your small intestine into your blood. Can gluten transmit through breast milk?  
×
×
  • 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.