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How Long Before Normal?

Karmann

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Karmann Newbie
Karmann
Posted

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.

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Jestgar Rising Star
Jestgar
Posted

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
Darn210
Posted

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
carecare
Posted

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
Karmann
Posted
  • Author

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
Tom2
Posted

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
heidi g.
Posted

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.

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TTNOGluten Explorer
TTNOGluten
Posted

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
T.H.
Posted

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
TTNOGluten
Posted

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
heidi g.
Posted

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

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
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