Advice Needed - Intolerant To So Many Foods And Have Malabsorption Problems

[spirit-walk]

"may be"..

 

and this must be major breaking news... b/c I saw him in April and he said what i just told you..

 

I'm probably misinterpreting what my doctor was saying. When I asked about the genetic testing done at Mayo, I was told that it doesn't necessarily mean that I'm not Celiac and she said they are discovering more and more information about genetic pathways and had heard this in a recent conference. I took that to mean that it didn't necessarily mean that it didn't have to be tested through those two genes, but that is probably a misunderstanding on my part. Again Irish, I'm not trying to argue as much as I'm trying to understand the information you're giving me.

[IrishHeart]

I'm probably misinterpreting what my doctor was saying. When I asked about the genetic testing done at Mayo, I was told that it doesn't necessarily mean that I'm not Celiac and she said they are discovering more and more information about genetic pathways and had heard this in a recent conference. I took that to mean that it didn't necessarily mean that it didn't have to be tested through those two genes, but that is probably a misunderstanding on my part. Again Irish, I'm not trying to argue as much as I'm trying to understand the information you're giving me.

 

It is my understanding that Dr.Fasano et al are looking at genetic factors at work in autoimmune disease. He is researching biomarkers

for AI disease and possibly NCGS. 

I have not read anything where he says anything about other genes and celiac 

[IrishHeart]

 

Fasano uses the term "leaky gut" or intestinal permeability throughout this presentation.

 

Irish, what am I missing here? Honest question?

 

 

You're not missing anything. I may have not made myself clear. Sorry about that. 

Let me try again.

 

I said he uses the term to discuss how the intestinal barrier can become permeable in some people and allow for the development of autoimmune diseases. He discusses zonulin in particular. 

 

But if someone does not have celiac or other AI diseases, then this concept does not apply. (I am not talking about you here. ok. I have no idea what's going on with you, hon, sorry. I wish I knew as you are suffering, I know)

 

He says many people have perfectly functioning guts that do not react to these "invaders" and environmental triggers..

 

Listen carefully to what he says. A  "leaky gut" may be necessary, but not sufficient to develop an immune response.

 

If you have an immune system that works just fine, it fights off the invaders and  then this assault will not occur. 

 

I am talking about the  widespread use of the term "leaky gut syndrome" that is used by any and all practitioners when they are "diagnosing" people

and selling supplements, food intolerances testing and promoting the idea of a gluten free diet in the absence of a medical necessity.

 

I do not think he is sure how he feels about that really. It sounds as if he thinks that initially they were on to something with the concept of a gut that is" leaky", but that it is just not applicable to anything and everything that ails people. This in IMO, based on what I have read and hearing him speak last month. 

 

I know his people are working constantly on understanding the microbiome and what makes some of us susceptible to AI diseases. It's all very fascinating, actually!

 

Here, read this interview and see what you think 

 

 Open Original Shared Link

[IrishHeart]

 

I wish I were someone who could simply stop eating gluten and my problems go away like so many people I've read about with Celiac. Unfortunately, I have a lot of problems with other foods though. Do you have intolerances as well and do you still have problems with foods even though you are gluten free?

 

Honestly,  I have not met a single celiac who simply stopped eating gluten and all their problems went away. Not one.

 

On the contrary. Just about every one I know has had multiple related health issues, other AI diseases, a slow recovery and other food intolerances.

(which resolve for the most part after a while)

 

When I hear that someone gave up gluten and everything resolved in a week (and they do not have a celiac DX), I think ncgs, not celiac.

 

And when I hear people say "I gave up gluten but 3 years later I still feel awful", then I think...time to go back and figure out what it really is, then that's causing so much havoc still.

 

It's not ever a "gluten out/ turn off the illness" thing. I wish it were.

[kareng]

Here's another thing to think about..... Or not....

When a person eats such small amounts of food everyday, it can be hard when they start to eat any food again. Sometimes you have to eat small amounts of food every 2 hours for a while....then build up to more food/ calories. This is what they do with eating disorders, people who haven't eaten for other medical reasons, people who have been starved, etc. they might feel bad eating the food for a few weeks, until they can get their body back to working correctly.

[IrishHeart]

Karen makes an excellent point.

for so long, I could barely choke food down or retain it. My GI tract burned and I was forcing myself to eat after DX.

 

As things progressed, I could eat more and a wider variety of foods.

It took 15 months before I was turning a corner, then I put on weight....and then, I was eating all kinds of foods I had not had in

5 years--even the dreaded egg which had given me nausea since childhood.

 

So, it could be a time thing. It could also be a food aversion thing. I was not eager to eat foods that had been making me sick

for so long.

 

Just something to consider.

[cahill]

As usually I am late to the conversation

 

Wondering what you guy think of this article ::

 

 

 

 

 

 

 

Brush border enzymes are embedded in the tiny microvilli of the small intestine.

The small intestine, with a surface area of roughly 250 square meters (think, tennis court), is where much of the digestive action in your gut takes place. On the absorptive surface, small villi or mucosal finger-like projections protrude into the lumen of the small intestine.

These villi are made of epithelial cells that are covered with microvilli and make up a fuzzy fringe, known as brush border cells. Brush border enzymes are the enzymes found on the brush border of the small intestine. These are:

• Amylase
• Cellulase
• Invertase (Sucrase)
• Peptidase
• Malt Diastase (Maltase)

Brush border enzymes can be effective in digesting carbohydrates, proteins, and fats without causing irritation of the intestinal walls. The intestinal walls are often irritated in those with intestinal permeability.

The space in between the epithelial cells of the small intestine is called a tight junction.

When a large protein like gliadin from wheat gluten or an antigen passes through a broken tight junction, the immune system goes into action, and the gut becomes inflamed. This is one way that a permeable gut develops. When the epithelial cells themselves are damaged, large molecules will also pass through the gut lining transcellularly, or through the cell itself. This is another form of what is known as permeable gut.

Whether the gut becomes permeable from Candida that has set down roots through the small intestines or from damaged epithelial cells, oftentimes pathogenic bacteria can overpopulate the area, causing gut dysbiosis.

• Bacterial overgrowth can actually lead to even more damage of the protective endothelial lining of the gut.
• Bacteria produce their own enzymes: bacterial mucinase destroys the protective mucus coat of the intestinal lining while protease degrades pancreatic and brush border enzymes.
• Bacterial overgrowth in the small intestine can also lead to malnutrition. Malnutrition in the gut can slow down or even prevent the lining of the gut from healing. This can lead to further loss of brush border enzymes and damaged epithelial cells.

Intestinal inflammation and impaired digestive function is in part related to loss of brush border enzymes.

Bacterial overgrowth in the gut can cause malnutrition! It is critical to repair gut permeability by avoiding foods that cause inflammation.

Studies have shown that villous atrophy, or damage to the villi and microvilli in the small intestine, is associated with decreased activity of digestive enzymes. Likewise, overgrowth of pathogenic bacteria will negatively affect brush border enzyme activity, decrease the brush border itself, and damage this very delicate and important "fuzzy fringe."

Under normal conditions, intestinal epithelium cells have one of the fastest rates of reproduction of any tissue in the body.

New epithelium is generated every 3-6 days. Therefore, providing proper nourishment to the cells of the small intestine is essential when healing the lining of the gut.

Glutamine is the most important nutrient that you can give to your body to support the repair of the intestinal lining. It is the preferred fuel and nitrogen source for the small intestine. Studies have shown that glutamine supports the regeneration and repair of the intestinal epithelia.

Repairing intestinal permeability is about avoiding foods that create inflammation and making sure that your gut epithelial cells have what they need to restore balance.

[IrishHeart]

Hey Chilly!

 

May I ask where this article came from?  Whenever I read something like this:

 

Whether the gut becomes permeable from Candida that has set down roots through the small intestines or from damaged epithelial cells, oftentimes pathogenic bacteria can overpopulate the area, causing gut dysbiosis.

 

 

I look for citations.

[greenbeanie]

1. I rarely eat anything from a box. I just don't have a lot of additives in my diet. I wouldn't think sulfites would be an issue, but I will check into it.

 

I thought that too - I have almost nothing in my house with any preservatives added, and make about 90% of my food from scratch. Added sulfites weren't listed on the labels of anything I was eating regularly. However, I was eating vinegar almost every day (in salad dressing), and sometimes dried coconut or the occasional fruit/nut bar, and sometimes home-baked muffins with potato starch in the flour. Organic onions in homemade chicken-vegetable soup are even enough to cause a problem for me. So is the tiny amount of corn starch in a vitamin I was taking, or the small amount of vinegar in mustard or other condiments. I know most people aren't nearly as sensitive to sulfites as this, but it really is worth looking into if all the other likely causes are eliminated. While my malabsorption symptoms had been slowly improving after about 7 months strictly gluten-free (following the diet as if I had celiac, though I have no official diagnosis), when I also eliminated sulfites there was a huge jump in the rate of improvement. Now that I've eliminated sulfites from my daily diet, when I have even a single serving of salad dressing it's totally obvious that it's a problem, much to my dismay. The hard thing about identifying sulfite problems is that it's generally impossible to tell where they're found unless you know where to look - but once you know where to look it becomes very clear very quickly whether that's the problem. The reason my allergist never thought of it is that, like you, I ate almost no processed foods, but the naturally-occurring sulfite in things like vinegar or fermented probiotics can be more than enough to cause problems for some people. Anyhow, maybe sulfites aren't a problem for you, but they are in tons and tons of foods where you wouldn't expect them.

[IrishHeart]

I am interested in the work of Fasano et al RE: the microbiome.

 

I see that other researchers are working on finding out WHY gut dysbiosis occurs and how to treat it.

 

Open Original Shared Link

May, 2014 article that concludes:

 

"This research has broad implications for future therapies that go beyond the introduction of a single organism to induce health. We propose that identifying mechanisms to re-establish a healthy complex microbiota after dysbiosis has occurred, a process we will refer to as rebiosis, will be fundamental to treating complex immune diseases."

[dilettantesteph]

Brush border enzyme production is reduced with active celiac disease and can cause lactose intolerance and malabsorption: Open Original Shared Link

Open Original Shared Link

 

Lots of us take digestive enzymes, but I have heard that GI doctors think that any benefits are due to placebo effect.  It would sure be nice to see some studies and a formulation developed based on solid science.  I must say that the ones I'm taking have made a huge difference.  Placebo or not, I'm pleased.

[1desperateladysaved]

I am doing a stool test which checks for digestive enzymes to see if I need them anymore.  I had to be off for 4 days, so far so good.  It will be interesting to see what comes from it.

[spirit-walk]

Checking in... Neck is the problem this morning. Turning my head to the left and right feels tight, and my neck pops here and there. Ugh..

 

Irish, I listened to some of the Fasano podcast you linked. My 3 year old is keeping me busy though. I will try to work my way through it. Sometimes I have to read or listen to him several times to really understand what he's saying.

 

I've started taking a glutamine supplement and thought chill's post was interesting.

 

My major focus is on healing the gut and finding ways to get much needed nutrition to my body while I maneuver through a lot of trigger foods. Yeah, I know this is probably everyone's goal reading this. I bought some potato starch this morning to make some banana bread (Haven't baked in a while), and green beanie has me thinking about sulfites now. I don't eat much vinegar anymore. Salads wreck my stomach, so they're out. Maybe it's the vinegar in the dressing and not the salad itself?

 

Irish, have you read Esposito's book? Just curious, and if you have, I'd love to hear your thoughts (especially pages 154-158). Anyone else in here who has read her book? I'd love to hear thoughts. The reason I ask is because the nutritionist I am seeing this week has a lot of similar opinions to her doctor and how to heal the gut.

[IrishHeart]

 

Irish, have you read Esposito's book? Just curious, and if you have, I'd love to hear your thoughts (especially pages 154-158). Anyone else in here who has read her book? I'd love to hear thoughts. The reason I ask is because the nutritionist I am seeing this week has a lot of similar opinions to her doctor and how to heal the gut.

 

I did read her book, hon and I passed it forward to Lisa (gottaski) to read, so I can't look at those particular pages, sorry.

 

Is it the doctor she went to and he did the testing, said she had more food intolerances and then gave her a bunch of supplements to take?

 

I think you already know my opinion on those tests, but if she says it works for her, who am I to argue with that? I respect whatever anyone does to get well. I just do not agree with the use of testing based on no science or peer-reviews. This is my opinion, okay?

 

I suspect however, it is more likely the elimination of dairy and the vitamins she received for the deficiencies as the more likely reason for why she feels better. Dairy can cause villous atrophy too, in some people.

 

She was exhausted and had anemia. The anemia was treated. Make sense?

 

There are just too many variables to the equation to say what "worked" to make her improve.

I think like a scientist when I look at these things.

 

I just do not agree with any kind of thinking by some practitioners that "everyone needs to do this"

to get well. It's not a one-size-fits-all thing we deal with here.

[jiggles]

Hello spirit-walk ,

just wanted to say that I too had an issue with popping joints too , and also terrible muscle stiffness ,

I found through a process of elimination that too much fruit and vegetables were the problem for me ,

thanks to IrishHeart histamine foods list ,

It dawned on me that it was histamine related ,

and maybe oxalate related too, I don't know for sure ,

but once I removed fruit and veg the joint pain, popping and muscle stiffness all started to subside ,

I was slow to connect the two as the popping pain and stiffness built up very slowly ,

and fruit and veg was the very last thing I thought of ,

I am adding back a few veggies and a few fruits now to find my tolerance level ,

hope that made sense

Here is a link I found that may help too

Open Original Shared Link

[IrishHeart]

Hello spirit-walk ,

just wanted to say that I too had an issue with popping joints too , and also terrible muscle stiffness ,

I found through a process of elimination that too much fruit and vegetables were the problem for me ,

thanks to IrishHeart histamine foods list ,

It dawned on me that it was histamine related ,

and maybe oxalate related too, I don't know for sure ,

but once I removed fruit and veg the joint pain, popping and muscle stiffness all started to subside ,

I was slow to connect the two as the popping pain and stiffness built up very slowly ,

and fruit and veg was the very last thing I thought of ,

I am adding back a few veggies and a few fruits now to find my tolerance level ,

hope that made sense

Here is a link I found that may help too

Open Original Shared Link

 

 

Fascinating article and further evidence by  what I mean by people have to find what makes them feel pain in their muscles and joints.

 

The "fibro" word is a dead-end diagnosis Don't buy into it. 

 

Who would think that some fruits and vegs were causing her pain? Crazy.

 

High histamine foods sure caused me trouble. 

[spirit-walk]

Thanks jiggles. I'm currently not eating many veggies (mostly french beans and okra). But I eat apples, bananas, pears, blueberries, and dates all the time. Not sure what I would eat without them, and the thought of giving them up makes me want to go crawl in bed and sleep. 

 

Maybe I should just eat rice for a week and see if I feel better?

[IrishHeart]

Thanks jiggles. I'm currently not eating many veggies (mostly french beans and okra). But I eat apples, bananas, pears, blueberries, and dates all the time. Not sure what I would eat without them, and the thought of giving them up makes me want to go crawl in bed and sleep. 

 

Maybe I should just eat rice for a week and see if I feel better?

NO!! You need to eat, hon. 

 

Bear with me everyone. I am answering SW on Pms and on threads and I want to say a few more things. You can all disregard if you wish.

 

Did you all read  the evidence based info I gave you?

 

Did you all read what these professional people also said about IgG. food testing?

 

Open Original Shared Link

 

Open Original Shared Link

 

You may well be  suffering massive nutritional deficiencies by following a diet based on invalid testing.

 

Let's get real here: If this were working---you would feel better by now! 

 

 

Re: JenE's treatment plan:

JE was exhausted. He gave her vitamin B infusions. That helps

JE had continuing bowel issues. She took out dairy. That helps.

 

My take on that? Dairy was a big culprit. AND She was B-12 and folate deficient. 

 

I look at things individually. Each step  was part of the solution.

Not "I did ALL THIS" and I am better--that makes no sense and is an illogical conclusion.

 

 

I have had to take out high histamine foods, soy, MSG, food additives. I eat very little processed items.

. 

This is not something every celiac has to do.

It helped me, but I STILL have problems. 

I have inflammation and some neuropathy. NOTHING shows on blood work. 

Rheumies, neuros, spine specialists all look at me with sadness and say

"we can't say what is happening, we only know it's not X,Y,Z. and you may never get out of that pain."

 

That's bulls$#&!! . I am getting out of pain big time! 

 

This has been my life for as long as I can recall. No one able to give me answers.

 

I have OA, celiac, some osteopenia (which has improved) and some undefined collagen/connective tissue disorder.

I do NOT have all the other s$#& they said I had (fibro, hypothryoid, kidney malfunction, A Fib, AS, etc....)

 

But I went from feeling as s$#&ty as you do to functioning at 85% speed.I am getting better every year.

It took time. It took patience.

It took physical therapy, massage therapy, assisted stretching, walking only 5 steps to now walking a mile 2X a day.

Walking in the pool, etc. helped. I could not tie my own shoes at one point or stand clothing on my body because it hurt.

 

I know you are fed up with doctors. Me too. I only trust my one GI doc right now.

We spent $30K out of pocket before DX. I get it! I do!! 

 

I am trying to tell you all: do not fall for too much alternative testing and treatments and supplements.

 

You are so thin because you are not eating enough!!

Take probiotics, digestive enzymes for the fat malabsorption and eat.

That is my best advice. 

Peace out! hugs, IH

[spirit-walk]

Thanks Irish. I've read your links. I'm going to put it to the test. I am going to try one food at a time on my list, starting with items that aren't normally high allergy types.

 

Carrots, tomatoes, asparagus, peanut butter, pineapple, and sesame were a few examples. Pineapple and sesame were the two highest markers on my test. I ate a lot of pineapple at the time but didn't make any effort to eat sesame although I could have gotten it on hamburger buns, cereal bars, etc.

 

Placebo effect be damned, I think I'll try this this evening. Just hope I'm not feeling far worse tomorrow.

[1desperateladysaved]

I think that I didn't feel a problem when I added one food at a time.  However, over time I noticed that I was bloating and swelling more.  I am currently thinking that if you are eating one thing you don't tolerate, your body may not give you a decisive reaction.

 

I do really feel that we all should eat as large diversity of food groups as we can.  What came out good on your test are not the only things you can eat according to my functional medicine nurse it is perfectly good to eat items not tested.  Personally, I would avoid any you had frequently consumed while suffering from leaky gut.  Also,  You can eat different meats, vegetables, and fruits.  Anything you didn't eat regularly while you were suffering from leaky gut.  When you are more healed (Perhaps for you, you gained weight) and are well on the road to recovery you could try foods you had antibodies to.

 

Sorry Spirit_Walk if some of this repeated my personal note.  I thought other people may want to know how to have more foods.

 

Dee

[dilettantesteph]

Elimination dieting can be very difficult.  This is especially true when you are already sick.  Remember to revisit foods later when you are feeling better and your digestive enzyme producing systems have healed.  There can be many reasons why something seems to give you a gluten reaction.  There can be coincidence with another gluten exposure that you were not aware of.  There can be problems with digestion due to high fat, high protein, lactose, histamine etc.  It can be really hard to tell what is crap alternative medicine and what actually works.  Remind yourself that correlation does not equal causation.   Also remember that not all celiacs have the same level of sensitivity.  Although the amount of trace gluten allowed in processed food is safe for the vast majority of celiacs, that is not 100% of celiacs.  Just because someone else eats something safely does not mean that you will necessarily be able to eat it safely yourself.  When you have gotten very sick from this condition it can take a long time to heal.  Good luck and I hope that you feel better soon.

[IrishHeart]

Steph said:   It can be really hard to tell what is crap alternative medicine and what actually works.  Remind yourself that correlation does not equal causation.

 

Agree!

Even SW will tell you all that he found a naturopath who debunks the IgG food testing.

 

 

I do not discuss this often (because people will say "oh you're just biased, IH"--and maybe I am but it's based on truth) but I consulted

a naturopath and an "integrative doctor" too when i was very ill (before diagnosis) and no doctor could help me figure out what was causing it.

 

That doctor used the IgG4 food intolerance test and it did not even indicate that wheat, barley rye or malt was a problem for me.

it only said "soy".

 

I do not even eat soy--so, based on the testing theory why would I have "severe range antibodies" to them? makes no sense..

 

But going on that doctor's  word that those tests are accurate and to do a 4-day rotation diet--including gluten--I went downhill for another 10 months. i repeatedly asked him are you sure about this?  oh yes. I lost another 20 lbs and my brain was fried from gluten ataxia. I could barely walk and I could have died. It was that bad.

 

I have the test results right here and when I look at them now, i see how naive I was to trust these people and their "tests".

 

So, yeah...you bet i am going to speak out about them. 

[spirit-walk]

Thanks dilettantesteph. I beginning to think the popping I am experiencing may be induced by stress/anxiety. I think and worry far too much about my health, the pain, and just living life in a productive manner. I see a lot of stuff online about anxiety and popping in joints.

 

 

 

Irish, I had a veggie stew with carrots and celery for the first time in a very long time last night. So far, no difference in symptoms.

[spirit-walk]

Irish, I'm canceling my visit this week. You probably saved me $300-400 this week.

[IrishHeart]

Thanks dilettantesteph. I beginning to think the popping I am experiencing may be induced by stress/anxiety. I think and worry far too much about my health, the pain, and just living life in a productive manner. I see a lot of stuff online about anxiety and popping in joints.

 

 

 

Irish, I had a veggie stew with carrots and celery for the first time in a very long time last night. So far, no difference in symptoms.

 

I think the popping in your joints is very real. Your muscles and joints are probably fatigued and you may have OA like I do. osteoarthritis can be  painful but manageable. Keep moving!  

 

I am glad you are eating something different and i hope you enjoyed it!.

 

just remember--ONE food reintroduction at a time. Wait a few days.