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How Long Can Symptoms Last Even When You Eat Gluten-Free

hsr11

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hsr11 Newbie
hsr11
Posted

I have just been diagnosed with Celiac Disease.  I think I have felt bad off and on for years.  I was tested positive through the TTG antibody.  I have been religiously eating both gluten-free and lactose-free for 12 days now, and I still have diarrhea everyday.  My abdominal pain and bloating is definitely improved, though I still have had a couple issues with that too.  I have asthma as well, and since I have been eating gluten-free, my asthma has definitely improved. In terms of fatigue,   I have a good day, then I have a very tired and fatigued day.  My doctor said it could take 6 months to 1 year to heal.  I am just curious for you experienced Celiacs, when you were diagnosed, how long did your symptoms linger?  Was it a long time? Is this perfectly normal and expected?  Can I expect the diarrhea to go away, or still recur often even when eating gluten-free?  I just want to start feeling normal again!  Thanks!

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1desperateladysaved Proficient
1desperateladysaved
Posted

How long have you experienced symptoms?  What are you doing to nourish yourself?  How committed to and knowledgeable are you to the diet?  The answers to these questions would help decide how quickly you will heal.

 

It is really hard to say how long it took me to feel better.  I am 18 months into gluten free and I do feel better after 30 years of symptoms.  To get here I cut out all sweets, cooked from scratch, and started an organic garden and farm!  I took high quality supplements as recommended by my chiropractor.  I stopped eating other foods I had become intolerant of.  I went on a rotational diet.  All of these things seem "no problem" now that I feel better.

 

You are on the road, keep walking.  You are heading the right direction. 

 

And by the way, GET WELL SOON  ***

 

D

nvsmom Community Regular
nvsmom
Posted

I feel mostly better at one year gluten-free. fatigue still hits on some days, and migraines once or so a month, but it is much better for bloating, GI pain, "C", joint pain and such. I know my antibodies aew still above normal after one year, so I don't think I should expect to feel perfect yet.

notme Experienced
notme
Posted

i feel awesome :)  - but i am really really strict - i pretty much fingerprint all my meals lolz - i eat mostly non-processed foods.  actually, if i have to be honest, the only time i feel puny is when i am experimenting with other foods.  being as i was sick for a very long time, i am still adding things back into my diet.  i am 3 years into this and just started taking a pro-biotic regularly -  in hindsight, i probably would have done much better if i had started taking it everyday from the beginning.  i've not been glutened since february, so no headaches, no joint pain, no fatigue, etc, unless i get glutened and then:  o, boy, do i remember what i used to feel like every day.  keeps me honest and vigilant!  welcome, and good luck!!

cyclinglady Grand Master
cyclinglady
Posted

It took about 6 to 7 weeks before my abdominal symptoms improved (those just developed between my blood panel and my biopsy).  Prior to that I my only symptoms were Hashimoto's Thyroiditis and anemia.  The anemia is improving with iron supplements and I'm taking calcium (broke a back vertebrae four weeks ago).  Getting a bone scan in a few weeks.

 

Give it more time.  You might also have other food intolerances too.  I've known mine for over 15 years, so I was ahead of the "game" on intolerances!  Most folks around here have trouble with dairy, corn, soy, etc.  It helps to keep a food diary or you might want to consider a four day rotational diet (check the internet for advice).  My doctor put me on years ago and it helped identify foods that my body didn't like and to help calm down inflammation.

hsr11 Newbie
hsr11
Posted
  • Author

How long have you experienced symptoms?  What are you doing to nourish yourself?  How committed to and knowledgeable are you to the diet?  The answers to these questions would help decide how quickly you will heal.

 

It is really hard to say how long it took me to feel better.  I am 18 months into gluten free and I do feel better after 30 years of symptoms.  To get here I cut out all sweets, cooked from scratch, and started an organic garden and farm!  I took high quality supplements as recommended by my chiropractor.  I stopped eating other foods I had become intolerant of.  I went on a rotational diet.  All of these things seem "no problem" now that I feel better.

 

You are on the road, keep walking.  You are heading the right direction. 

 

And by the way, GET WELL SOON  ***

 

D

I have experienced all my bad symptoms off and on for about 1.5 years. However, I also had toxic shock syndrome 7 years ago that really screwed me up.  Maybe my symptoms started after that!  My asthma was diagnosed after that too.   My fatigue just recently got really bad over the past 2 months.  I have always taken a daily probiotic, multivitamin, glucosamine, fish oil, B-6, and calcium.  I have checked all those labels, and I changed my multivitamin because it contained gluten.  I just started taking PureEnscapsulations multivitamin.   I am also now taking 2000 mcg of B-12.  I cut out all dairy and gluten almost 2 weeks ago.  I eat a couple hard-boiled eggs for breakfast, a decaf coffee with lactose free milk, homemade chicken salad for lunch and apples, bananas, strawberries, and gluten-free beef jerkey for snacks.  I have chicken or fish with vegetables for dinner - cut out all butter too. I also have made gluten-free pasta with a basic tomato sauce.   I have a glass of red wine at night.  I don't eat any sweets, though I have diet green tea with artificial sweetener.  At this point I am starting to question everything I eat whether I can eat anything!  Thanks for all your guidance!  It's nice to know there's a network I can reach out to!

bartfull Rising Star
bartfull
Posted

Have you read the Newbie 101 thread? It will teach you about sources of cross-contamination you may not have thought of. For example, if you use mayo in that homemade chicken salad, did you know you need a new and dedicated to you alone jar of mayo? (If a knife was dipped into that jar just ONE TIME after it touched gluten bread, the whole jar is contaminated.) Also, check your make-up, especially lipstick,  and your shampoo. Wooden spoons, strainers, cutting boards, and any scratched plastic or teflon can also be a hidden gluten source.

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hsr11 Newbie
hsr11
Posted
  • Author

Have you read the Newbie 101 thread? It will teach you about sources of cross-contamination you may not have thought of. For example, if you use mayo in that homemade chicken salad, did you know you need a new and dedicated to you alone jar of mayo? (If a knife was dipped into that jar just ONE TIME after it touched gluten bread, the whole jar is contaminated.) Also, check your make-up, especially lipstick,  and your shampoo. Wooden spoons, strainers, cutting boards, and any scratched plastic or teflon can also be a hidden gluten source.

Thanks!  I didn't think of the mayo jar - I do use that same jar to make my kids sandwiches.  I will check out the Newbie 101 thread.  Thanks!

dilettantesteph Collaborator
dilettantesteph
Posted

It took about a year for my symptoms to go away, but it also took me that long to figure out my diet because I am sensitive to very small amounts of gluten.  As long as you are improving, I would feel good about it, but if now, I would suspect that some gluten contamination is getting in to your diet.

  • 2 weeks later...
funkflex Rookie
funkflex
Posted

I am 9 months into the diet and things are improving but it never happened overnight as I might have hoped at the beginning.

 

At first I was worse, then gradually I started getting a little more energy. Then constipation started to clear up. Then I started gaining some weight. Still dealing with less energy than most, but not at all bed bound most of the day like I was a year ago. I even work now!

 

For some people things clear up quickly, for others it takes more time. Its hard *I know* but one day you´ll be strutting with energy. Till then, take it easy on yourself.

AlwaysLearning Collaborator
AlwaysLearning
Posted

My diarrhea went away immediately after going gluten free and stayed away. The only time I've had the big D in the past 9 months was likely caused by overdoing a vitamin B12 supplement. I'll never really know, I suppose.

That said, I've heard of plenty of people who seem to take longer to start to feel better and/or have symptoms resolve.

But I would definitely ask your doctor to test you for deficiencies before taking any supplements at all, only supplement the deficiencies you actually have, and then figure out a schedule for retesting because your digestive system healing should help you start to get what you need from food again and/or age could affect your body's ability to absorb.

There have been plenty of studies that have shown negative effects on long-term health from dietary supplements, including one just last week that showed that omega-3 supplements seem to do more harm than good. If your body already has enough, magnesium can cause diarrhea as well. 

Until you have a chance to get current tests, I might back off from everything that you're taking, if nothing else, to rule them out as possible causes. I love a previous thought about the four-day cycle while keeping a food journal in order to help identify culprits. You could do the same with the supplements.

hsr11 Newbie
hsr11
Posted
  • Author

My diarrhea went away immediately after going gluten free and stayed away. The only time I've had the big D in the past 9 months was likely caused by overdoing a vitamin B12 supplement. I'll never really know, I suppose.

That said, I've heard of plenty of people who seem to take longer to start to feel better and/or have symptoms resolve.

But I would definitely ask your doctor to test you for deficiencies before taking any supplements at all, only supplement the deficiencies you actually have, and then figure out a schedule for retesting because your digestive system healing should help you start to get what you need from food again and/or age could affect your body's ability to absorb.

There have been plenty of studies that have shown negative effects on long-term health from dietary supplements, including one just last week that showed that omega-3 supplements seem to do more harm than good. If your body already has enough, magnesium can cause diarrhea as well. 

Until you have a chance to get current tests, I might back off from everything that you're taking, if nothing else, to rule them out as possible causes. I love a previous thought about the four-day cycle while keeping a food journal in order to help identify culprits. You could do the same with the supplements.

Hmm.  Thanks all!  I still have D almost 4 weeks into this now, but I am taking high supplements, particularly B12 - I take a women's over 40 supplement.  I was deficient in B12, magnesium, and vitamin D.  My stomach was doing much better at the beginning, but this week has been horrible.  Horrible bloating and pains.  I eat nothing but bananas, apples, avocados, peanut butter (my own jar), banana chips, chicken salad (which I got my own mayo jar), popcorn, and water.  I even cut out anything wih sugar substitute like propel and diet green tea.  I only drink water now.  No dairy.  My energy is better, my hair is better, but I am really sad about this setback in abdominal pain.  So it could be overdosing on vitamins you think?  Ugh!!  Thank you everyone!  Sometimes I just fee so alone out there because I just feel like I'm crazy.  I just want to feel great again!

cyclinglady Grand Master
cyclinglady
Posted

Did you see today's blog by The Patient Celiac ( aka Jebby,a Pediatric MD)?  It's all about celiac and food intolerances -- including a discussion on histamine.  The foods that you've been eating: bananas, avocados, banana chips, mayo (contains vinegar) may be bothering you.  It's worth reading and it may help you!  You might not have to give this up entirely, just rotate them around in your diet.  Everything in moderation!

 

Also, when I started my gluten-free diet some three months ago, I took nothing in terms of supplements except for my thyroid medication.  I waited one month for my body to start healing despite the fact that I'm anemic (needed iron) and dealing with possible osteoporosis (bone scan next week).  Not one single vitamin!  Then after a month, I started taking them again.

Chrisz1000 Newbie
Chrisz1000
Posted

Yep chances are the gut won't be absorbing the supplements anyways. I started by hammering loads of supplements, doubling the dosage just to give me a better chance of absorbing at least some of those nutrient goodies... suffice to say I didn't realise immediately but they were giving me GI problems.

 

Once I came off the supplments I started to feel more comfortable. I trust you have checked all the ingredients for your supplements, mayo peanut butter etc? Could be you are getting glutened from somewhere?

 

Just checked my diary when I was on week 4... wow I forgot how many physical symptoms I endured. Fast forward to week 7, most had gone. Hopefully with time you will recover nicely - trust me time passes so slowly when you are waiting seemingly for  miracles to happen. They do happen though and in a few months time you will be able to look back with relief that you don't have inexplainable setbacks anymore!

  • 4 weeks later...
1desperateladysaved Proficient
1desperateladysaved
Posted

My healing caused some pain.  I just thought that my body worked really hard to recover.  I hope it will be nothing more than that to you and you will feel better soon.

 

D

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