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

[spirit-walk]

I'm 40, male, and have had Celiac symptoms that I didn't recognize until I started having major joint problems 2 years ago. I've been thin my entire life (couldn't gain weight), had a lot of stomach aches/diarrhea growing up (went away for the most part during my college years and through my 20's and early 30's), delayed puberty, chronic canker sores, sore throats, slight anemia, and other symptoms that now lead me to believe I likely have Celiac's disease.

 

My gastroenterologist has told me I'm not absorbing fat and my pancreas has been checked through a CT scan. It appears my pancreas looks fine, but for whatever reason, my body is not absorbing fat. I told my doctor I think this has been a lifelong issue, b/c I used to eat loads of carbs, fats, and calories and never really gained weight. I've had a six pack since I was about 8 years old. No matter how much beer I drank or how many fast food meals I ate, I've never been able to gain weight. But I could at least maintain weight. Two years ago, after coming down with severe joint pain, I was told (through a blood test) that I'm intolerant to at least 31 different foods (all the majors: wheat, egg, dairy, tomatoes, and a bunch of others). A year later my stomach could no longer tolerate salads, and beans do a number on me. I went from 155 pounds to now 128, and I can't put weight on. Since that joint pain started 2 years ago, I've had just about every test imaginable done to rule out RA, Lupus, parasites, MS, gout, diabetes, Crohns, UC, and many others. I went to the Mayo Clinic last summer for many of those tests. The problem with ruling out Celiac was that I stopped eating gluten several months before I had an endoscopy and colonoscopy done. Everything checked out ok except that my stomach was reddish inside.

 

So I've posted in the past on this site. My joint pain is much better now that I'm off gluten and the other problem foods. However, my joints began popping a few months after the initial pain started, and it continues to progress throughout my body. My neck is now starting to pop which really concerns me. My hips are also popping/moving, and it is painful. I went through a period where I thought I was getting better, but now it's coming back again with a vengeance.

 

My GI doc said that he wants to move forward under the notion that I have Celiac. I am having more stomach issues and I can't gain weight. Basically, I have major absorption problems, and I am thinking I am likely not getting some important vitamins/minerals to support my joints. My doctor wants me to swallow the camera pill next to have a look at my small intestine. She also wants me to get another food intolerance blood test to see what new foods my body is reacting to. I'm having it done this week and fear that everything I am now eating will be on the new list of trigger foods. Right now, I eat a lot of rice, chicken, almond butter, avocados, bananas, apples, sun butter, fish, quinoa, buckwheat, and certified gluten-free oats. I also eat a lot of Lara bars for snacks along with fruit.

 

I thought eating these foods all the time along with my daily probiotic and digestive enzymes would be fine. But now my doctor is telling me that eating any particular food more than once every three days puts that food at risk for becoming a trigger food. This is all based on the "leaky gut" problem that my body is turning on foods that I eat a lot of.

 

So, where do I go from here? Were any of you intolerant to almost everything, and how were you able to battle this problem or the malabsorption problem that I seem to be having? 

 

Do any of you have popping in the JOINTS?! I would love to know what is causing this, b/c no doctor has been able to explain it. But, this isn't harmless popping. This is getting worse by the week. I've seen a couple of nutritionists who believe it stems from malabsorption problems and possibly a shortage of a particular protein or something. 

 

What kind of supplements should I be taking to heal the gut and fix the malabsorption problem? Do any of you use Chelation therapy or IV Vitamin drips?

 

Any advice would be helpful and appreciated. Thanks.

[NatureChick]

If you haven't been tested for vitamin deficiencies, I'd do that right away. Malabsorption seems highly likely.

Also, don't forget to look at chemicals that are known to cause digestive problems. There was some doctor who tested artificial food colorings and found that all seven that he tested caused digestive damage. And some people have had allergic reactions to pesticide or herbicide residues so buying organic might help.

One of the symptoms of fluoride toxicity is digestive upset and it is really difficult to reduce fluoride levels in your body once it has built up. If you've ever used a mouthwash that contains fluoride, I'd consider this as a potential problem.

My joints used to pop all of the time, from head to toe, either on their own or with very little effort. The popping went away around the time that I removed all fluoride from my life ... after a fluoride mouthwash caused the worst hip pain I have ever experienced, else I'd probably still be ingesting it and not even realize that it was poisoning me.

I personally am not a fan of probiotics though I will take just one here and there. They seem to upset my stomach more than they help. And be careful about "leaky gut" diagnosis. Though disrupted gut flora and food intolerances can fall in line with a portion of how leaky gut it described, there have been repeated studies that have shown that food is not passing through a more-porous intestine and is not entering the bloodstream. It just doesn't happen the way they hypothesized. And yeast also doesn't grow out of control the way they describe without also producing additional symptoms that are easy to notice.

If I were you, I'd stop probiotics and raw foods temporarily in order to rule out their bacterial properties as the cause of your problems, but reintroduce lots of other foods again while keeping a diary to help see what foods seem to be the most problematic.

[greenbeanie]

Have you tried eliminating sulfites? Your list of unproblematic foods is similar to mine, and I found myself reacting to more and more foods over time. It actually got worse for a while after I eliminated gluten, because many gluten-free flours contain lots of sulfites (in potato starch and other bleached starches). In retrospect I can trace the sulfite problem back to childhood, with severe breathing trouble after eating dried fruit, but I only figured out the cause recently. My joints do swell and pop, and RA (as well as MS and a bunch of other stuff) was ruled out in my case, though the main problem sulfites cause for me is tongue and lymph node swelling. I also had tons of symptoms of celiac and malabsorption for decades, and celiac in my family, but my celiac tests were negative. I saw three different allergists who all told me the long list of foods I was reacting to had nothing in common, and then I came across literature on the sulfite connection. It turns out that every single food I've ever had a problem with (aside from gluten) contains sulfites. When I went back to the allergist with this info, she immediately recognized that I was correct and went back through my health history to confirm that my health history was indeed consistent with a sulfite allergy/intolerance. She said it's not well-understood and there's no blood or scratch test for it, so it hadn't been on her radar.

Anyhow, once I drastically reduced my sulfite intake basically all the problems that hadn't improved after eliminating gluten immediately started to get better. I am very intolerant of even tiny amounts, though - not just to added sulfites that appear on labels. I also can't eat anything fermented at all, or garlic or onions (which are naturally high in sulfur) - no vinegar, hard cheese, yogurt, etc. No pectin or gelatin, no spice mixes of any kind, nothing with tomato paste/sauce or lemon juice from concentrate. Giving up salad dressing was the hardest, as I used to eat salad every day. Many brands of probiotics actually make it much worse - from the fermentation, I guess. For a long time I thought that the constant gurgling after taking probiotics meant they were doing good things in there (even though the gurgling didn't stop after the first few days on a new dose/brand, as happens for most people), but now I know that wasn't the case for me.

Here is a fairly good brochure with the basics, though I believe the labeling regulations in Canada may be different than other places. My reaction to sulfites is dose-related, so I'm hoping I'll be able to tolerate more after eliminating them for a while. Who knows. Maybe sulfites aren't an issue for you, but it's worth a try if you're reacting to tons of different foods. They cause a very different reaction for me than gluten does (more like classic allergies), but I'm sure they may cause different symptoms in different people who are sensitive to them. Good luck!

Open Original Shared Link

[powerofpositivethinking]

hi spiritwalk,

 

Get those vit/min levels checked!  I was deficient in vitamins D and K despite massive supplementation.  They would barely move up at all.  My GI doctor tested me for fat malabsorption and pancreatic insufficiency, and I was diagnosed with both.  There are a few things that can cause pancreatic insufficiency, and celiac is one of them.  To rule out other causes, I had a progression of tests done this spring: small bowel follow through, MRIs of MRCP, abdomen and pelvis and the pill cam.  After all of those tests, it was determined that my severe pancreatic insufficiency is celiac related.  I have been put on the prescription enzyme called Creon.  In a few months I will be rechecked and hopefully things will improve!  Since my GI thinks this is all celiac related, I should have to take the enzymes for a few months and that should train my pancreas to work correctly again, and then I can stop taking them.  

 

Unlike you, I am slightly overweight, so my doctor was surprised at my results.  I was stool tested by LabCorp for the fat malabsorption and pancreatic insufficiency.  The specific test for pancreatic insufficiency is called fecal elastase.  Here is a link to more info on EPI: https://www.celiac.com/forums/topic/105648-exocrine-pancreatic-insufficiency/

 

Good luck!

[dilettantesteph]

Something like 10% of celiacs also have problems with oats, even gluten free ones.  The protein structure is similar to gluten such that for some of us, it reacts the same way.  It might a good idea to try eliminating them for awhile to see if you notice an improvement.

 

I hope you feel better soon.

[1desperateladysaved]

I am going through similar issues.  My current tactic is to stop eating everything I had an antibody too, and not tested items that I had eaten frequently.  I am trying to eat all "New Foods."  My meats include lamb, bison, elk,  and yak.  My vegetables include jicama, watercress, kohlrabi, and spinach.  One could make a 4 day rotation with the new foods to minimize risks.  For now I am not, but to some degree am trying to avoid repetition.  Foods I ate a lot, but had no antibodies to I am eating freely.  I lost all nuts but macademia.

 

Buckwheat threw me for a loop.  I know everyone does not experience this.  Buckwheat is a fruit and not a wheat.  I had used it to sub for wheat a lot in my sickening past.  One also has to watch it for cross contamination issues.  Have you tried SCD (A special diet to help heal gut) or paleo diet?

 

I feel I made the most progress when I didn't eat foods that I had antibodies to.  I have just gone back to that.  I haven't had an "intolerance episode since" and my tummy continues to go down.

 

My natural care doctor recommended Digestive enzymes, vitamin A 10-25,000 a day New Zealand Cholostrum, wholeimmune (that eats yeast) probiotic, glutamine, and 2 Tbsp coconut oil.

 

Dee

[spirit-walk]

If you haven't been tested for vitamin deficiencies, I'd do that right away. Malabsorption seems highly likely.

Also, don't forget to look at chemicals that are known to cause digestive problems. There was some doctor who tested artificial food colorings and found that all seven that he tested caused digestive damage. And some people have had allergic reactions to pesticide or herbicide residues so buying organic might help.

One of the symptoms of fluoride toxicity is digestive upset and it is really difficult to reduce fluoride levels in your body once it has built up. If you've ever used a mouthwash that contains fluoride, I'd consider this as a potential problem.

My joints used to pop all of the time, from head to toe, either on their own or with very little effort. The popping went away around the time that I removed all fluoride from my life ... after a fluoride mouthwash caused the worst hip pain I have ever experienced, else I'd probably still be ingesting it and not even realize that it was poisoning me.

I personally am not a fan of probiotics though I will take just one here and there. They seem to upset my stomach more than they help. And be careful about "leaky gut" diagnosis. Though disrupted gut flora and food intolerances can fall in line with a portion of how leaky gut it described, there have been repeated studies that have shown that food is not passing through a more-porous intestine and is not entering the bloodstream. It just doesn't happen the way they hypothesized. And yeast also doesn't grow out of control the way they describe without also producing additional symptoms that are easy to notice.

If I were you, I'd stop probiotics and raw foods temporarily in order to rule out their bacterial properties as the cause of your problems, but reintroduce lots of other foods again while keeping a diary to help see what foods seem to be the most problematic.

 

Thanks for the response. I was told that "leaky gut" does not exist at the Mayo Clinic last summer as well. However, Dr. Alessio Fasano speaks of leaky gut all the time, and his new book just released does as well. I just read Jennifer Esposito's new book on her journey with Celiac Disease, and her doctor(s) (Dr. Fratallone) in New York have based her entire recovery on it. This is what's so confusing about trying to recover from this mess. There seems to be so many different "professional" opinions on how Celiac damages the body and how to recover.

 

I was taking a probiotic that seemed to upset my stomach, so I changed to a different one that doesn't seem to bother me. I was told by others that sometimes some strains are just not right for some people. I don't even know if they are working or not.

 

Did your popping occur in your hips and neck. My shoulders and wrist pop ALL THE TIME. They don't really hurt, but the hips and neck are very bothersome. Right now, this is my ultimate concern with my health. Sometimes I can barely walk all day when it moves to my knees and hips.

 

A few points that I'd like to add to respond to some of the other posts.

 

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.

2. I don't use mouth wash, and only use Sensodyne Pronamel toothpaste which supposedly does not contain gluten. I don't really ever drink tea anymore which contains a lot of fluoride. I drink a lot of bottled water. So I'm not really sure where I'd be getting high levels of fluoride.

3. When I went to Mayo, the vitamin levels they checked fell into normal levels. But they may be different now after another year has gone by. I've had some doctors tell me that my Vitamin D levels are normal and some that have told me they are low. Again, confusing.

 

 

Thanks for all the responses. I am listening. I would love to know more from anyone who has corrected joint popping or malabsorption problems with limited food options.

 

Btw, does anyone take UltraInflamX by Metagenics or Inflammacore by Ortho Molecular Products? These were two supplements Esposito referred to in her book?

[IrishHeart]

Spirit walk

 

You and I have talked before and I am sorry to hear you are still struggling.

 

The joints popping is an issue for an orthopedic doctor, IMO

 

I have no idea why you would ever entertain the idea of chelation therapy. This is not a good idea at all. It is an unproven theory that "chelation therapy can effectively treat problems" other than proven heavy metal poisoning. If you have heavy metal poisoning, you'd know it.

 

I do not know how many times I have posted this information, but I will try again.

 

There are no valid tests for "food intolerances". It is shameful that practitioners continue to sell this idea to people so they eliminate foods from their diets without cause.

 

"There is no IgG testing of value," said Robert Wood, a professor of pediatrics and chief of pediatric allergy and immunology at Johns Hopkins University in Maryland. "All of us make IgG to the foods we eat, and they are not related to disease, including food intolerance."

 

Open Original Shared Link

 

Read the science, please.

 

From the American Academy of Allergy, Asthma and Immunology & American College of Allergy, Asthma and Immunology: Open Original Shared Link:

IgG and IgG subclass antibody tests for food allergy

 do not have clinical relevance, are not validated, lack sufficient quality control, and should not be performed

.

And from the the American Academy of Allergy, Asthma and Immunology (AAAAI) Practice Paper, Current approach to the diagnosis and management of adverse reactions to foods [Open Original Shared Link]:

Some tests are considered unproven in regard to the diagnosis of specific food allergies. Those for which there is no evidence of validity include provocation-neutralization, cytotoxic tests, muscle response testing (applied kinesiology), electrodermal testing, the “reaginic” pulse test, and chemical analysis of body tissues.

Measurement of specific IgG antibodies to foods is also unproven as a diagnostic tool.

[IrishHeart]

Dr. Fasano uses the term "leaky gut" in "quotations" like that in the book and he does air quotes when he uses "that phrase" when he presents at conferences.

 

I saw him do it. I met him. In the context of explaining gut permeability, he meant it in terms of a process, not a condition that all people suffer from as some alternative med types will have us believe.

 

This does not mean this is a clinical entity and that everyone suffers from it. He meant it as a way to explain how zonulin works and how gut permeability relates to autoimmunity and disease. 

 

Do a celiac's guts "leak"? sort of,yes because tight junctures are opened, but once the gluten is removed and the inflammatory response dies down, that is halted. 

 

The term "leaky gut" is thrown around a lot, but it's not something you're going to find as a clinical

diagnosis. 

[spirit-walk]

I am going through similar issues.  My current tactic is to stop eating everything I had an antibody too, and not tested items that I had eaten frequently.  I am trying to eat all "New Foods."  My meats include lamb, bison, elk,  and yak.  My vegetables include jicama, watercress, kohlrabi, and spinach.  One could make a 4 day rotation with the new foods to minimize risks.  For now I am not, but to some degree am trying to avoid repetition.  Foods I ate a lot, but had no antibodies to I am eating freely.  I lost all nuts but macademia.

 

Buckwheat threw me for a loop.  I know everyone does not experience this.  Buckwheat is a fruit and not a wheat.  I had used it to sub for wheat a lot in my sickening past.  One also has to watch it for cross contamination issues.  Have you tried SCD (A special diet to help heal gut) or paleo diet?

 

I feel I made the most progress when I didn't eat foods that I had antibodies to.  I have just gone back to that.  I haven't had an "intolerance episode since" and my tummy continues to go down.

 

My natural care doctor recommended Digestive enzymes, vitamin A 10-25,000 a day New Zealand Cholostrum, wholeimmune (that eats yeast) probiotic, glutamine, and 2 Tbsp coconut oil.

 

Dee

 

When I was first tested for food intolerances, it eliminated nearly my entire diet. I didn't really know what to do. I ate TERRIBLE for my entire adult life. A lot of fast food, Starbucks, candy, chips/dips, soft drinks (never drank water). Then all of a sudden, the joints went crazy. The doctors ruled out everything and said my tests were all normal. Then I saw the nutritionist who did the food intolerance test, and suddenly I was being told I had to eat a bunch of food I'd never heard of. I didn't believe it at first, but I was in so much pain that I would try anything. I gradually started removing identified foods, and I was gradually feeling a little better all the time. But the whole time I was losing weight. It got to the point that I was starving myself, b/c I'd notice that every time I ate, I'd feel worse. I was told by the same nutritionist that I needed to alternate the new foods (rotation diet) to minimize the possibility of losing those foods. I tried it, but it was nearly impossible for me. I teach 4th grade, and I would have to cook EVERY night to have something to eat after work and then the next day at work. I still do this. It's exhausting. But, I stopped worrying so much about rotating my foods. Even took advice from people on this board about that. I was feeling pretty good for a while, and I felt like my health was getting back on track. But the popping has come back and it is the major problem. My hips fell like the tendons/ligaments are moving under my clothes when I bend over or sometimes when I'm walking. My neck is now starting to pop and it gets tight. I feel like I need to look right or left constantly to ease the tension (which makes it pop too sometimes).

 

My GI Doc knows I'm not absorbing fat through a series of stool tests. I thought that might be the issue causing the popping, and I've taken collagen supplements as well. Now I'm just thinking it may be whatever gut inflammation that is triggering the popping. Or a lack of a certain nutrient needed.

 

I am getting the new food test this week. I barely have enough foods to eat now to survive my outrageous appetite, and I'm worried that they're about to tell me even more are a problem. Meanwhile, everyone I know asks me if I ever eat b/c of how thin I am.

 

I used to think that removing gluten would be a nightmare. Now I'd love to live in a world where I only had to worry about gluten. It seems I can't eat anything.

[IrishHeart]

I know you are suffering, hon, and I feel for you, but I do not see how removing even more foods and nutrients based on invalid testing is going to help you gain weight at this point.

[spirit-walk]

 

Spirit walk

 

You and I have talked before and I am sorry to hear you are still struggling.

 

The joints popping is an issue for an orthopedic doctor, IMO

 

I have no idea why you would ever entertain the idea of chelation therapy. This is not a good idea at all. It is an unproven theory that "chelation therapy can effectively treat problems" other than proven heavy metal poisoning. If you have heavy metal poisoning, you'd know it.

 

I do not know how many times I have posted this information, but I will try again.

 

There are no valid tests for "food intolerances". It is shameful that practitioners continue to sell this idea to people so they eliminate foods from their diets without cause.

 

"There is no IgG testing of value," said Robert Wood, a professor of pediatrics and chief of pediatric allergy and immunology at Johns Hopkins University in Maryland. "All of us make IgG to the foods we eat, and they are not related to disease, including food intolerance."

 

Open Original Shared Link

 

Read the science, please.

 

From the American Academy of Allergy, Asthma and Immunology & American College of Allergy, Asthma and Immunology: Open Original Shared Link:

IgG and IgG subclass antibody tests for food allergy

 do not have clinical relevance, are not validated, lack sufficient quality control, and should not be performed

.

And from the the American Academy of Allergy, Asthma and Immunology (AAAAI) Practice Paper, Current approach to the diagnosis and management of adverse reactions to foods [Open Original Shared Link]:

Some tests are considered unproven in regard to the diagnosis of specific food allergies. Those for which there is no evidence of validity include provocation-neutralization, cytotoxic tests, muscle response testing (applied kinesiology), electrodermal testing, the “reaginic” pulse test, and chemical analysis of body tissues.

Measurement of specific IgG antibodies to foods is also unproven as a diagnostic tool.

 

Hi Irish.

 

I've seen an orthopedic surgeon. I've seen a lot of different doctors. They all pretty much act like they've never heard of anyone with popping joints. They say it's air bubbles, and that I shouldn't be concerned about it. They ask me to stretch my arms over my head, behind my back, etc and tell me that my flexibility and strength are good. Then I shell out more money and am back to square one.

 

I've pretty much narrowed down my list of doctors to one, my GI doctor. He and his medical assistant take the approach that there's still very little they understand about the gut and autoimmunity. This was the same approach the Mayo Clinic Internist (who was a highly respected doctor at the clinic) had when discussing me and my symptoms. I saw several of their doctors, and he said medicine just hasn't caught up to the gut at this point. He said they were turning away many patients 15 years ago with gut issues and telling them there was nothing wrong with them. Now they know about this thing called Celiac, he said. My GI doctor has told me to get the test, b/c their clinic can't offer those kinds of tests at this time. Possibly in the future... My problem with the medical system is that they don't really care to help much unless they can prescribe you a pill. I've had too many doctors give me the, "everything is normal, there's not really anything else we can do for you" line. Some I'm doing everything I can to research this on my own. I'm highly skeptical of holistic types as well, but I've seen some people who have had amazing results from a varied few. 

 

I'm just looking to solve this puzzle.

 

On the chelation issue, I don't want to do any of those things. I just don't understand why my conditions are progressively getting worse, and I've had 3 different nutritionists types tell me that I have an absorption problem that is probably causing it. I realize that's not a diagnosis, but it makes sense since I know that I'm not absorbing fat.

 

Eating a clean diet of water, fruit, green beans, okra, chicken, salmon, tilapia, organic brown rice, quinoa, almond butter, and Udi Bread (my only processed supplement) isn't cutting it as far as healing me. I need something else to heal my gut!!! I've tried L-glutamine, but I admit I never took it for more than a few weeks at a time. I just want to fix the popping problem, heal my intestines, eat clean from now on, and live a life where I don't feel miserable 80 percent all the time. I've accepted that I'll never get to eat pizza, hamburgers, soft drinks, mexican food, or out at 99 percent of restaurants. At this point, I'll take that future. But I want avoid the wheelchair. 

 

Irish, I read and take in everything you tell. Please don't think I don't. You've been a major help to me in the past.

[kareng]

Something like 10% of celiacs also have problems with oats, even gluten free ones. The protein structure is similar to gluten such that for some of us, it reacts the same way. It might a good idea to try eliminating them for awhile to see if you notice an improvement.

I hope you feel better soon.

I agree with this first. It's an easy thing to do for a couple of weeks.

I am also a bit unclear - are you currently eating gluten-free? It sounds like you are.

I can't believe a GI doctor said not to eat the same foods - that it would make you intolerant. That doesn't make sense. That is how we were designed to eat long ago. People ate a bunch of meat if they caught something, they ate lots of berries while they were in season, etc.

As for the joint thing - when I am not active, things pop and hurt. You have been feeling bad for so long, I bet you aren't getting much exercise & stretching.

[1desperateladysaved]

I had been doing rotational for a long time. I just cook supper and use left-overs for lunch the next day.  As I understand it, one can eat each food for 24 hours and then go on.  Having leftovers for lunch helps to make it easier.  I also have a 30 day plan on the refrigerator.  All I need to do is to look and I know what will be made that day.  It took me a few hours to make it, but once in place I really like it.  Infact, although I am not eating rotational just now.  I still have my family doing it.

 

You tried IgG?  I used it for the 3 month time and my bloating was subsiding.  After that I was "done".  But some people take longer to heal (I was sick a really long time).  I am taking cholustrum instead just now, but may try both or alternating if my caregivers concur.

 

Dee

[IrishHeart]

SW

Remember when I told you that my joints also popped like mad when I was very ill, thin and my muscles were compromised? As I have become stronger, I am putting on weight, I have been able to use light weights, walk, go to the gym and the popping is less.  A lot less.

Everyone's joints pop.

 

I know you have gone to a gazillion doctors but honestly,maybe it is time to stop going to them.

If your CMP and CBC have ruled out conditions that are life-threatening, then try to move forward.

 

You need to eat more variety in your food,IMHO. You can't possibly get proper nutrition from that small list of foods and a nutritionist who tells you otherwise is not very good at her job. IMHO

Take probiotics. Try Florajen3. It helps heal the gut by reducing inflammation. That's based on evidence.

 

I would never suggest something that I haven't vetted 10 different ways. 

 

If you have pancreatic insufficiency, then digestive enzymes should help.

 

L-glutamine has mixed reviews.I have read some Pub Med articles and they say it helps with mucosal recovery in cancer patients. If you are going to use it, get a quality brand and take it for 3 months and see if it helps.

[IrishHeart]

• If the doctors have ruled out structural & mucosal reasons for why you have fat malabsorption, maybe you should look at causes outside the gut. They include:
•  
• Open Original Shared Link.
• Open Original Shared Link.
• Addison's disease.
• Open Original Shared Link.
• Open Original Shared Link.
• Open Original Shared Link.
• Open Original Shared Link.
• Widespread skin disease (rapid cell turnover may also affect gut mucosa).
• Malnutrition.
• Collagen diseases.
• Eating disorders.
• Factitious diarrhoea due to purgative abuse.

But honestly, I doubt any of these are your problem if your blood work is good.

 

Collagen supplements may help. I use them and my joints, bones and muscles feel much better.

[spirit-walk]

Peter Whorwell, a professor of medicine and gastroenterology at the University Hospital of South Manchester in Britain, found in 2004 that using IgG antibodies to guide Open Original Shared Linkelimination diets may be effective in reducing the symptoms of irritable bowel syndrome.

The tests have particular appeal to people who have been coping with chronic symptoms but repeatedly hear: "We can't find anything wrong." When Jeffrey Sesol, of Homer Glen, started feeling strangely fatigued and achy, he went to his internist, a gastroenterologist, a neurologist and a rheumatologist, but no one had an answer.

"Grasping for straws," he went to see chiropractor Nicholas LeRoy at the Illinois Center for Progressive Health in Chicago.

LeRoy took Sesol off the acid reflux medicine he'd been taking for years — something no other doctor suggested — and ordered food allergy testing. Out of 150 Open Original Shared Link tested, 33 registered positive, including yeast, wheat, eggs, milk, beans, cheese, garlic, ginger, nuts, lemon, mushrooms, rice, sesame, sugar and squash.

"The list was overwhelming, but I took out as many foods as I could," Sesol said. Within weeks his energy returned, he said, and after 45 days his acid reflux and aches disappeared.

"It was life-changing for me," said Sesol, 51, who now tries to avoid wheat, eggs, milk, brewer's yeast and baker's yeast but has added other foods back in his diet, including cheese. The test also helped his daughter, 24-year-old Amy, who was having similar symptoms, Sesol said.

LeRoy said testing has been extremely effective for his patients. "Ninety-five percent of the time I run a test, for whatever reason, it ameliorates a condition," he said. "There can be a relationship between foods and things that wouldn't seem likely related — asthma, chronic sinusitis and other systemic issues."

 

 

Irish, this sounds exactly like me.

 

A few points. I'm not just basing my views on one or two or even a handful of opinions. I've read SO MUCH over the last 2 years. I've been to Mayo and spoke with over 20 doctors about my symptoms. I'm in debt to the tune of about $3 grand and still looking for answers.

I know the difference between an intolerance and an allergy. I've been to 3 allergists who all told me I have no allergies. These doctors prescribe to the practices that have been in place for years. The GI doc at Mayo I saw said intestinal permeability or "leaky gut" does not exist. He also told me yeast in the gut doesn't exist. He said it was all BS and a way for some of these health practitioners to make money. HOWEVER, I had the nutritionist at Mayo and the Internest (Dr. Lundstrom) tell me that there is still FAR too much that we don't know at this point. They told me that I have to listen to my body and continue trying to figure this out on my own. The point was that many of these doctors are still not up to speed with the latest research (or lack of research) on the gut. This is why I've read more about people like Dr. Fasano and Esposito's doctor (Dr. Fratallone). My GI doc is supposed to be one of the best in Texas and tells me that we are still in the very early stages of even beginning to understand this disease. I was told two days ago that the two genes that are tested for Celiac may not even be that accurate, b/c they are discovering new genetic pathways that may not go through HLA-DQ8 and HLA-DQ2 (believe those are the ones). So basically, the genetic test I took last summer that said I was HIGHLY UNLIKELY to be Celiac may not be so accurate after all.

 

I've also met other Celiacs who were misdiagnosed for years and had false negatives.

 

On the food intolerance tests, I didn't believe that I was intolerant to all those foods at first either. I wondered how I could have drank milk and eaten eggs daily for my entire life if I was suddenly intolerant to both? Something triggered these foods. And I have tried eating some of these foods and paid the consequences. Dairy makes my arms go numb and my hand hurt (badly). Watermelon, which was a trigger food, didn't seem to bother me if I ate a bite or two. But if I hate a good size piece with my daughter, my hands began hurting. So unless this is all just the placebo effect and it's all in my head, these foods ARE causing problems for me. I will admit that I have stayed away from many of the foods on the list though, so I can't vouch for all of them causing the same pain. But I do know that dairy, sugar, eggs, watermelon, and a few others cause a reaction.

 

 

 

For Karen, the idea behind the rotation diet, it that my gut has been compromised (you'd have to buy into the intestinal permeability argument), and that eating a particular food a lot would cause problems. This is because if I eat that food daily, the "leaky gut" would allow that food to enter my bloodstream unfiltered causing the immune system to see it as an invader and react to it. If I eat the food occasionally and give my body a chance to digest it with overloading it, the chances are less likely that particular food will become a problem. I'd like to live in a world where this is nonsense, but I've read and heard about this through many sources, including some respected doctors that I mentioned in this thread.

[IrishHeart]

Dr Fasano says emphatically that the HLA DQ2 and DQ8 genes are the only ones relevant to the development of celiac.

 

The doctor in JenE's book has a unique approach, I'll say that. That's all I will say because I respect Jennifer as a person --but not even the celiac researchers will get behind IgG4 food intolerance testing.

 

It's JE's choice to follow this man's plan for her. But it's not the answer for everyone.

 

Do what you wish with the information, but I am not going to argue with you or anyone over any of this topic.

We can keep trotting out various studies, but in the end, if you are following the advice of this "food intolerance testing" and you still feel bad, you are losing weight and you are still looking for help,

then obviously, it's not the answer.  See my point?

 

I gave you a few suggestions, but none of us are doctors and all we can do is make suggestions..

 

Best wishes, as always.

[spirit-walk]

I do yoga often. I was doing pushups and lifting weights and even got back on my mountain bike for a few months. Things seemed to be getting better. Then the chronic popping returned (never went away in my shoulders and wrists) and it's getting worse.

 

Irish,

 

I'm eating twice as much clean food as a coworker of mine who has issues with gluten and dairy. She eats like a bird every day, is younger than me, and still gains weight. I eat much larger portions than her, make it a point to eat snacks throughout the day, and still can't gain a pound. I was on ZenPep (pancreatic enzyme) for several weeks with no change in weight. It just didn't seem to be helping at all. I feel like everything I eat just goes right through me. I've also had my TSH tested three different times as well as my testosterone levels and all were in the normal ranges. I have no skin problems.

 

I feel pretty confident that I have a major absorption problem, and that whatever autoimmune response that is going on is affecting the joints causing them to pop. Is it all based on food? Not entirely sure. Maybe there is something bigger (genetic disease?). Weather changes, especially rain, kick my *** too.

[1desperateladysaved]

I grew skeptical about the food intolerance tests for a while.  But when I added the foods back in, even in rotation, I gained back some of my inflammation.  I have been off (again) for about a week and seem to be deflating again.  It is really complicated.  The more I consider seriously having just the placebo effect, I really do not think so.  I use to not believe it when I saw the swelling and bloating after baking and eating bread!  Now, I know that wasn't my imagination!

.

[spirit-walk]

Dr Fasano says emphatically that the HLA DQ2 and DQ8 genes are the only ones relevant to the development of celiac.

 

The doctor in JenE's book has a unique approach, I'll say that. That's all I will say because I respect Jennifer as a person --but not even the celiac researchers will get behind IgG4 food intolerance testing.

 

Do what you wish with the information, but I am not going to argue with you or anyone over any of this topic.

We can keep trotting out various studies, but in the end, if you are following the advice of this "food intolerance testing" and you still feel bad,

then obviously, it's not the answer. 

 

I gave tou a few suggestions, but none of us are doctors.

 

Best wishes, as always.

 

My GI doc said that Fasano was the doctor who said there may be other genetic pathways in a conference their staff went to recently.

[kareng]

 

I

 

 

For Karen, the idea behind the rotation diet, it that my gut has been compromised (you'd have to buy into the intestinal permeability argument), and that eating a particular food a lot would cause problems. This is because if I eat that food daily, the "leaky gut" would allow that food to enter my bloodstream unfiltered causing the immune system to see it as an invader and react to it. If I eat the food occasionally and give my body a chance to digest it with overloading it, the chances are less likely that particular food will become a problem. I'd like to live in a world where this is nonsense, but I've read and heard about this through many sources, including some respected doctors that I mentioned in this thread.

 

 

 

I am not sure how you can do that with only about 10 foods you will eat.  

 

Well, pick a course and give it a good shot.  It may take a few months for anything to make a difference.  Good luck.

[IrishHeart]

My GI doc said that Fasano was the doctor who said there may be other genetic pathways in a conference their staff went to recently.

"may be"..

 

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

[spirit-walk]

 

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

 

Irish, what am I missing here? Honest question?

[spirit-walk]

I am not sure how you can do that with only about 10 foods you will eat.  

 

Well, pick a course and give it a good shot.  It may take a few months for anything to make a difference.  Good luck.

 

 

Agree. It's very difficult even with a Whole Foods to shop at and a lot of planning.

 

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?