Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Recovered After 5 Years


Flor

Recommended Posts

Flor Apprentice

Dear friends,

I spent a lot of time on these boards for a couple of years and got some very helpful information along the way.

I wanted to offer back a quick report since I seem to have largely recovered from the leaky gut I had -- in case any of this is helpful.

I developed chronic and severe gut problems (followed by joint and mental health problems) after two rounds of intestinal viruses and post-partum exhaustion. I thought at first it was celiac but going gluten free only helped a little. Stopping soy, corn, dairy, nightshades, yeasty foods, high oxalate foods, etc etc only helped a little more. Taking buckets of supplements helped a little more. But the joint pain got worse and there were still way too many bad days even eating very strictly.

I recently learned from a rheumatologist that some people develop long-term post-viral syndromes after gut viruses and that five years is a fairly common long-term recovery time. I am just short of five years now.

After all my experimenting around my road to recovery looked like this:

1. Avoiding all foods that potentially cause inflammation. This would include: caffeine (green tea okay, also oolong), artificial sweeteners and thickeners (carageenen), corn, potatoes (and eggplant and tomatoes), wheat, pork and beef, soy, dairy and high residue foods like nuts and berries and raw vegetables, alcohol, citrus, sugar, garlic, onions. This is still the diet I mostly stick to though there's now room for some violations for me. It's basically chicken and fish and cooked veggies and rice and quinoa and avocado and coconut.

2. Supplements to support gut healing. Top of my list would be: glutamine, acetylcysteine, arginine, anti-oxidants (D, E, C. CoQ10), and some anti-inflammatories like tumeric, along with other generally supportive supplements (Bs, cal/mag, multi, niacin, etc). I can walk through what each of these is for and dosages for those interested. Of these N-acetylcysteine (NAC) has by far made the biggest immediate difference -- almost entirely eliminating my joint pain (I tried going off and coming back on the NAC and the joint pain correlates exactly).

3. Probiotics. Three times a day. I tried many very expensive probiotics with no consistent effect (VSL3, Threelac, Culturelle, etc). But the most recent probiotic I've been taking has made a HUGE difference. It's Dr. Ohira's Probiotic12. You can buy it online. It has changed the ecology of my gut in a way that nothing else has. Really nothing short of miraculous. My digestion is happier than it's ever been at any prior time in my life, going all the way back to childhood.

Side note: lots of people recommend digestive enzymes to help people with gut problems get all the food digested. In my case, it led directly to acid reflux. I have enough stomach acid and that wasn't my problem. Also, a lot of people recommend herbal anti-fungals (grapefruit seed extract, garlic, black walnut, olive leaf extract, etc). I would NOT recommend any of those, especially at the beginning. They are a kind of chemotherapy really and are hard on the body. In retrospect I think they did more damage than good for me. I think the above stuff to support gut ecology will go a long way to dealing with yeast and bacterial overgrowth. The main idea to start with should be to do no harm; put nothing into the gut that isn't soothing and good for it.

I'd be happy to share any more details with anyone who thinks my road to getting better might be helpful for theirs.

Best to you all.


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



Celiac.com Sponsor (A8-M):



gcarey Newbie

Thank you for sharing this information. This sounds very familiar with what I have been going through. Your post was very helpful. Thank you.

Dear friends,

I spent a lot of time on these boards for a couple of years and got some very helpful information along the way.

I wanted to offer back a quick report since I seem to have largely recovered from the leaky gut I had -- in case any of this is helpful.

I developed chronic and severe gut problems (followed by joint and mental health problems) after two rounds of intestinal viruses and post-partum exhaustion. I thought at first it was celiac but going gluten free only helped a little. Stopping soy, corn, dairy, nightshades, yeasty foods, high oxalate foods, etc etc only helped a little more. Taking buckets of supplements helped a little more. But the joint pain got worse and there were still way too many bad days even eating very strictly.

I recently learned from a rheumatologist that some people develop long-term post-viral syndromes after gut viruses and that five years is a fairly common long-term recovery time. I am just short of five years now.

After all my experimenting around my road to recovery looked like this:

1. Avoiding all foods that potentially cause inflammation. This would include: caffeine (green tea okay, also oolong), artificial sweeteners and thickeners (carageenen), corn, potatoes (and eggplant and tomatoes), wheat, pork and beef, soy, dairy and high residue foods like nuts and berries and raw vegetables, alcohol, citrus, sugar, garlic, onions. This is still the diet I mostly stick to though there's now room for some violations for me. It's basically chicken and fish and cooked veggies and rice and quinoa and avocado and coconut.

2. Supplements to support gut healing. Top of my list would be: glutamine, acetylcysteine, arginine, anti-oxidants (D, E, C. CoQ10), and some anti-inflammatories like tumeric, along with other generally supportive supplements (Bs, cal/mag, multi, niacin, etc). I can walk through what each of these is for and dosages for those interested. Of these N-acetylcysteine (NAC) has by far made the biggest immediate difference -- almost entirely eliminating my joint pain (I tried going off and coming back on the NAC and the joint pain correlates exactly).

3. Probiotics. Three times a day. I tried many very expensive probiotics with no consistent effect (VSL3, Threelac, Culturelle, etc). But the most recent probiotic I've been taking has made a HUGE difference. It's Dr. Ohira's Probiotic12. You can buy it online. It has changed the ecology of my gut in a way that nothing else has. Really nothing short of miraculous. My digestion is happier than it's ever been at any prior time in my life, going all the way back to childhood.

Side note: lots of people recommend digestive enzymes to help people with gut problems get all the food digested. In my case, it led directly to acid reflux. I have enough stomach acid and that wasn't my problem. Also, a lot of people recommend herbal anti-fungals (grapefruit seed extract, garlic, black walnut, olive leaf extract, etc). I would NOT recommend any of those, especially at the beginning. They are a kind of chemotherapy really and are hard on the body. In retrospect I think they did more damage than good for me. I think the above stuff to support gut ecology will go a long way to dealing with yeast and bacterial overgrowth. The main idea to start with should be to do no harm; put nothing into the gut that isn't soothing and good for it.

I'd be happy to share any more details with anyone who thinks my road to getting better might be helpful for theirs.

Best to you all.

Laura Wesson Apprentice

lots of people recommend digestive enzymes to help people with gut problems get all the food digested.

I read a story once where somebody said she was given digestive enzymes by alternative-medicine practitioners for her food intolerances, and, she said, they "stripped the lining of her gut" and made the problem much worse!

It was a cautionary tale about alternative medicine - their treatments can actually be harmful.

Unless you've been diagnosed with a digestive enzyme deficiency by an MD, I don't think taking extra enzymes is to the point.

I've been recovering on a carefully gluten-free (and many other foods-free) diet for 7 years. I still have food intolerances last I checked, but my reactions are much less intense than they used to be. So maybe eventually I can quit this miserable business of avoiding almost all common foods.

Laura

  • 4 months later...
MommyL Rookie

THANK YOU!

Skylark Collaborator

Dear friends,

3. Probiotics. Three times a day. I tried many very expensive probiotics with no consistent effect (VSL3, Threelac, Culturelle, etc). But the most recent probiotic I've been taking has made a HUGE difference. It's Dr. Ohira's Probiotic12. You can buy it online. It has changed the ecology of my gut in a way that nothing else has. Really nothing short of miraculous. My digestion is happier than it's ever been at any prior time in my life, going all the way back to childhood.

Isn't it funny how different people seem to respond to different probiotics? Threelac worked wonders for me. I wonder if people are missing different sets of bacteria.

whitebeach Newbie

Hi Flor,

Can I get some more info on your supps?

Whitebeach

jonathan@stormbay.com.au

hoot Rookie

I read a story once where somebody said she was given digestive enzymes by alternative-medicine practitioners for her food intolerances, and, she said, they "stripped the lining of her gut" and made the problem much worse!

It was a cautionary tale about alternative medicine - their treatments can actually be harmful.

Unless you've been diagnosed with a digestive enzyme deficiency by an MD, I don't think taking extra enzymes is to the point.

I've been recovering on a carefully gluten-free (and many other foods-free) diet for 7 years. I still have food intolerances last I checked, but my reactions are much less intense than they used to be. So maybe eventually I can quit this miserable business of avoiding almost all common foods.

Laura

For me digestive enzymes, specifically pancreatin (lipase, amylase, protease), have helped tremendously. They have cut down my gas and bloating, helped my digestion, more energy etc. Had acid reflux long before them, and the enzymes haven't really affected it. Only negative is that occasionally they seem to contribute if I have constipation.

I have not been diagnosed with an enzyme deficiency, but I know for a fact that they help. So I would not say that people shouldn't use them unless they've been diagnosed with an enzyme deficiency. We're all much the same but still very different. Try the enzymes out for a week or two, if you feel better, they are probably helping, if not, stop using them. Simple as that.


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



Celiac.com Sponsor (A8-M):



  • 2 weeks later...
Glamour Explorer

Isn't it funny how different people seem to respond to different probiotics? Threelac worked wonders for me. I wonder if people are missing different sets of bacteria.

From what I have been reading people respond well and some respond poorly to different probiotics and enzymes, depending on what enzymes they might be missing, what food gives them trouble, and what supplement ingredients they react to. It also seems to greatly depend on how sick you are, as well as other digestive issues.

Lisa79 Enthusiast

Thanks, good to know. Some days you do start to feel like your getting no where but then when you look back where you were a year ago, you know have improved. Nice to know it doesnt always happen overnight, I was so sick of people with celiac disease say how fantastic they felt in a few weeks, I was so worried something else was wrong with me.

I must admit the digestive Enzymes help me too and I have not been diagnosed, my naturopath recommended them.

I also find the L-Glutamine which is the major ingredient in my Pre-boitic mix does wonders (I use Panaxea) I ran out last week and all of a sudden I am feeling crappy and bloated, off to pick up some more from my naturopath tomorrow.

Did anyone have problems with their Menstrual cycle?

Thanks

Lisa

Lisa79 Enthusiast

I would also love some info on your foods, rather than what you avoided, what did you eat?

Thanks

Lisa

francos@westnet.com.au

  • 1 month later...
sweeeeet Rookie

Glad to read your story, it was a success and congratulations! Question, so what's there left to eat if I avoided all the same foods you did? wanna be in your shoes someday,cured. What foods would I eat? I am just intolerant to basically everything it seems, from all dairy, all wheat and gluten, deli meat, certain vegetables, and certain fruits. Even certain nuts don't work for me anymore, especially pistachios and cashews, they give me stomach cramps. I am now even worrying about enzymes and vitamins, I take them every day but they might be irritating the lining of my stomach then, right? My stomach has not felt right in years.

Just a basic list of foods that are helpful to a person with stomach problems similar to yours.

sweeeeet Rookie

I should have mentioned that in 1995 I had a bad case of roto virus and was sick for over a week, uncontrollable vomiting, etc. a month later all my various symptoms started to make their appearances, digestive issues, IBS, brain fog, swollen calves, fibromyalgia, etc. I always had a feeling many of my symptoms were related to that virus.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

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

      Postponing seeking a diagnosis?

    2. - kim-d posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Postponing seeking a diagnosis?

    3. - Scott Adams replied to 20021979's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Orgain Protein Powder

    4. - Scott Adams replied to Celiacandme's topic in Related Issues & Disorders
      1

      Perimenopause/menopause

    5. - Erain replied to 20021979's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Orgain Protein Powder


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,110
    • Most Online (within 30 mins)
      7,748

    Merib
    Newest Member
    Merib
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      69.9k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @kim-d! Recently revised guidelines or the "gluten challenge" recommends the daily consumption of at least 10g of gluten for at least two weeks up until the day of the antibody test blood draw. 10g of gluten is the amount found in about 4-6 slices of wheat bread. IMO, I would wait until you have time to do it right so as to remove all doubt as to whether or not your gluten consumption was adequate for long enough to ensure valid testing. In the meantime, focus on removing gluten from your diet and see how your symptoms improve (or not) as one piece of the diagnostic puzzle.
    • kim-d
      Hello. I'm a 22 year old college student and I've had constant stomach problems since I was 14. Recently I noticed that my problems get worse when I eat more wheat. I tried to follow a gluten free diet, which didn't end up entirely gluten free, but I still had reduced my gluten consumption very much, and I felt a lot better. I also have fatigue, inability to gain any weight, iron deficiency, possible vitamin deficiencies, really bad memory and brain fog that increases by time, unexplainable muscle aches and tachycardia which all can possibly explained by celiac/NCGS.  I wasn't able to continue a completely gluten free diet as I am eating from my school and dorm's cafeteria and almost all food there have gluten so I was going very hungry. They do offer a gluten free menu with a report though. So I decided I should try getting a diagnosis if I can, especially after reading how it was much harder to do gluten challenge after quitting gluten for a while. I was able to get an appointment for next week, and started eating around 150gr of bread per day to be sure.  First 24 hours I didn't feel any worse so I was starting to doubt myself, but then bloating hit hard. It wasn't anything unbearable, but the problem is I have finals soon and I'm now realizing this is a really bad time to do this. I can't begin studying from pain distracting me. I'm thinking of cancelling the appointment and eat low gluten until exams are over.  I worry about one thing. Before I went low gluten, I was eating a lot of bread already for over a month, which is what clued me into gluten, and I only went low gluten for around 10 days before going high gluten again. I wasn't that worried about a false negative. But if I eat low gluten until my exams are over, it means over a month of low gluten, and I would need a lot more time eating high gluten later to get a correct result.  I'm not sure which one should I do, bear it until my appointment or cancel it and try again when I'm free later. And If I choose the second one, how long would I need to do the gluten challenge for a blood test?
    • Scott Adams
      I've not tried the product, but it is definitely possible that it contains barley and wheat grass, and is gluten-free. I would imagine that they are regularly testing their product for gluten content, since they are making the claim that their product is gluten-free. I personally avoid these ingredients, but some celiacs do consume them without issues. PS - my daughter uses this product regularly, and she is very sensitive and has DH as well. She does not have issues with it.
    • Scott Adams
      Welcome back! Many celiac patients navigating perimenopause or menopause consider estrogen therapy, and there’s growing research highlighting its potential benefits. Estrogen has been shown to reduce certain health risks associated with menopause, such as cardiovascular disease, particularly in post-menopausal women. This is significant since studies suggest that women with celiac disease may already face an elevated risk of heart disease due to chronic inflammation or malabsorption issues prior to diagnosis. Estrogen therapy, whether through pills, patches, or other methods, can also help alleviate menopausal symptoms like hot flashes, mood swings, and bone loss, all of which can be exacerbated by nutrient deficiencies common in celiac patients before going gluten-free. Of course, the decision to use estrogen therapy is highly individual and depends on your health history, risk factors, and how well your body is responding to a gluten-free diet. If you're considering this route, it's a great idea to discuss it with your doctor. They can tailor a plan that aligns with your needs and monitor how the therapy affects your overall health. Hearing about others' experiences can also be helpful, so it's great you're reaching out to connect with others in the community!
    • Erain
      https://nationalceliac.org/celiac-disease-questions/do-wheat-grass-and-barley-grass-contain-gluten/ I find this helpful. I will update you on what the company says but most likely will choose one of their products without the wheat and barley grass. Overall, I think the other powders should be safe and I will try them.
×
×
  • Create New...