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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,188
    • Most Online (within 30 mins)
      7,748

    terencie
    Newest Member
    terencie
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      Hi, @thejayland10, Do you still consume dairy?  Dairy can cause increased tTg IgA levels in some people with celiac disease who react to casein, the protein in dairy, just like to gluten.   You might try cutting out the processed gluten free foods.  Try a whole foods, no carbohydrate Paleo diet instead, like the AIP diet (the Autoimmune Protocol Diet by Dr. Sarah Ballantyne, a Celiac herself). Processed gluten free foods can be full of excess carbohydrates which can alter your microbiome leading to Small Intestinal Bacterial Overgrowth (SIBO).  SIBO is found in some people who are not responding to a gluten free diet.  SIBO can elevate tTg IgA levels.  The AIP diet cuts out sources of carbohydrates like rice, potatoes (nightshades), quinoa, peas, lentils, legumes, which starves out the SIBO bacteria.  Better bacteria can then proliferate.   I followed the AIP diet to get rid of my SIBO.  It's a strict diet, but my digestive tract had time to rest and heal.  I started feeling better within a few days.  Feeling improvement so soon made sticking to the AIP diet much easier. References: Small intestinal bacterial overgrowth among patients with celiac disease unresponsive to a gluten free diet https://pmc.ncbi.nlm.nih.gov/articles/PMC7759221/   Luminal antigliadin antibodies in small intestinal bacterial overgrowth https://pubmed.ncbi.nlm.nih.gov/9260801/#:~:text=Luminal total IgA concentrations (p,response to local bacterial antigens.   Potato glycoalkaloids adversely affect intestinal permeability and aggravate inflammatory bowel disease https://pubmed.ncbi.nlm.nih.gov/12479649/
    • trents
      First, welcome to the forum, @boy-wonder! Second, a little clarification in terminology is in order. Granted, inconsistency is rampant when it comes to the terminology associated with gluten disorders, but it has more or less become settled in this fashion: "Gluten intolerance" is a general term that car refer to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). "Gluten Sensitivity" is the shortened version of NCGS. Third, Celiac disease is not an allergy to gluten. It is an autoimmune disorder characterized by gluten ingestion causing the immunes system to attack the lining of the small bowel, causing damage to it over time due to the constant inflammation that wears down the "villi" (mucosal finger-like projections that make up the lining). Over a significant period of time as gluten continues to be consumed, this generally results in impaired nutrient absorption. There are specific blood antibody tests available to check for celiac disease but the testing will not be valid while on a reduced gluten diet or a gluten free diet. Those already having having begun a gluten free diet must go back to consuming generous amounts of gluten for a period of weeks if they wish to pursue testing for celiac disease. Fourth, NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. Fifth, you state that you are convince you don't have celiac disease by are just "gluten intolerant" (aka, gluten sensitive). How do you know that? It seems to me you are making a dangerous assumption here. I suggest you consider getting formally tested for celiac disease.
    • AllyJR
      Has anyone found a gluten free parakeet seed mix? I can't find a single one! My doctor wants me to make sure all pet food in the house is gluten free but I'm not sure if that's even possible with parakeets. We love our birds so much! I'm wondering if anyone has ever made their own bird seed mix if gluten free ones are not available. 
    • boy-wonder
      Hi, new member. About me, I had been suffering with weight gain, bloating and irregular and extreme bowel habits for a year or so. For example, I went on holiday in 2023, then again I  2024 at the same time of year and every shirt I wore in 2023 didn't fit anymore, couldn't even do the buttons up. Being in my mid 50s I put it down to age and middle aged spread. I'd been lucky all my life having good metabolism and being able to eat anything and as much as I like without putting on any weight, it drove my other half mad. Over a conversation with a friend health and age Related stuff came up and he mentioned someone he knew who had recently found out they were gluten intolerant,  I looked it up and had every one of 8 or so symptoms listed. Bloating,  weight gain,  headaches, brain fog,  constipation, etc etc. I took the decision to give going gluten free a try. Within 1 week I had lost 4 lb, now 7 weeks in I've lost 13 lb. I feel much better in general,  the bloating has severely subsided, it used to keep me awake at night as I felt so uncomfortable.  So pretty much a success story, as everyone here knows,  going gluten free isn't always easy, and eating out can be awkward,  but I consider myself lucky that I appear to have an intolerance rather than an allergy or being celiac.  I can deal with most of the gluten free options at the supermarket but, the big one for me is bread, I love bread, and the gluten free options I've tried are pretty poor. I was at a posh black tie event last night and chose all the food options I thought would be gluten free,  however,  there was bread on the table and I couldn't resist it, I had I small piece of bread,  god it was good, I wanted more but I resisted. Today I feel a bit dodgy, my stomach is churning, and I generally feel a bit urgh.  So here's the question, is that really down to 1 small piece of bread or is it coincidence?  I'd be interested in hearing how other people have reacted to a similar situation,  as I was considering having a day off every now and then and enjoying some lovely fresh bread.
    • ValerieC
      Does anybody know of a guide that ranks reevaluates universities and colleges in terms of their accommodation of celiac disease or food allergies?   Thanks in advance for any leads! Valerie 
×
×
  • Create New...