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

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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    2. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,030
    • Most Online (within 30 mins)
      7,748

    Virgini Brewsaugh
    Newest Member
    Virgini Brewsaugh
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • 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.