I've been gluten free on two occasions - the last time for 3,5 months. I stopped because I still wasn't able to ease down on the medication.
I've been taking a blood test (alas no Enterolab test). The noteworthy results are:
Gliadin IgA 51.7* < 8,0 U/ml Positive
S-Banana IgG.5,20* < 0,35 U/mL class 3
S-Wheat IgG 1,13* < 0,35 U/mL class 2
S-Rice IgG 1,45* < 0,35 U/mL class 2
S-Broccoli IgG 1,19* < 0,35 U/mL class 2
S-Lemon IgG 1,71* < 0,35 U/mL class 2
I guess the IgA for Gliadin is pretty conclusive for wheat/gluten allergy. HLA DQ2 adds to this. There was no IgA or IgG against Casein. I have microscopic inflammation in the stomach, duodendum (unspecific gastroduodenitis), ileum (BAD/BAM) and colon (CC). One can only guess about the rest of the small intestine ...
All celiac disease tests are negative - no villous athrophy.
I guess I have to try a new exclusion diet and look for cross reactions and other allergens as well.
BTW, I very seldom eat banana.
Any ideas about how to address this now?
Thanks!
Tor
IgA against gliadin
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
IgA against gliadin
Life's hard and then you die
Hi Tor,
You're right — very, very few of us are only sensitive to gluten. Most of us have many other foods to avoid, especially during our recovery.
While a negative casein result on that test may or may not be accurate, remember that everyone (and I do mean everyone) who has enteritis (intestinal inflammation) is automatically lactose intolerant at least until the inflammation subsides. Even a case of the flu causes temporary lactose intolerance. For that reason, we're almost always much better off if we avoid all dairy products while we are recovering, and if we believe that they are safe, we can experiment with adding them back into our diet after we are in remission.
If we skip that precaution (avoiding dairy products during recovery) we may never recover, and the obvious conclusion will be that the diet doesn't work. But the diet does work. Sometimes it's just extremely difficult to figure out all of the foods that are causing problems, and/or sometimes we get tripped up by misreading labels, or even by products that are mislabeled.
I can recall 1 or 2 members reporting that they couldn't tolerate bananas, but overall that's not a common problem.
It's always tough to decide on an exclusion diet that's safe, but the safest meats are turkey and lamb, for example. I'm not aware of anyone here who cannot tolerate those 2 meats. And of course most wild game (except for bison, which has domestic cattle DNA these days) should be safe. Most of us can tolerate peeled, well-cooked squash and carrots. Most of us can tolerate sweet potatoes, but not everyone, of course. I had no problems with regular Russet potatoes when I was recovering, but some members here can't tolerate potatoes, at least not while they are in the early stages of recovery.
Good luck. I hope you will be able to fine-tune an elimination that will allow you to heal relatively quickly.
Tex
You're right — very, very few of us are only sensitive to gluten. Most of us have many other foods to avoid, especially during our recovery.
While a negative casein result on that test may or may not be accurate, remember that everyone (and I do mean everyone) who has enteritis (intestinal inflammation) is automatically lactose intolerant at least until the inflammation subsides. Even a case of the flu causes temporary lactose intolerance. For that reason, we're almost always much better off if we avoid all dairy products while we are recovering, and if we believe that they are safe, we can experiment with adding them back into our diet after we are in remission.
If we skip that precaution (avoiding dairy products during recovery) we may never recover, and the obvious conclusion will be that the diet doesn't work. But the diet does work. Sometimes it's just extremely difficult to figure out all of the foods that are causing problems, and/or sometimes we get tripped up by misreading labels, or even by products that are mislabeled.
I can recall 1 or 2 members reporting that they couldn't tolerate bananas, but overall that's not a common problem.
It's always tough to decide on an exclusion diet that's safe, but the safest meats are turkey and lamb, for example. I'm not aware of anyone here who cannot tolerate those 2 meats. And of course most wild game (except for bison, which has domestic cattle DNA these days) should be safe. Most of us can tolerate peeled, well-cooked squash and carrots. Most of us can tolerate sweet potatoes, but not everyone, of course. I had no problems with regular Russet potatoes when I was recovering, but some members here can't tolerate potatoes, at least not while they are in the early stages of recovery.
Good luck. I hope you will be able to fine-tune an elimination that will allow you to heal relatively quickly.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thanks, Tex
Seems like you agree with me that the IgA for Gliadin is very conclusive.
Actually the reason why I stopped the last GF trial was getting worse after starting drinking milk in the morning. I know that was stupid, but I thought it would help my osteopenia. I've learned here since that it probably would have been counter-productive anyway.
The reaction to milk was one of the reasons I ordered the blood tests. I thought gluten allergy had been ruled out by the celiac tests. One might say I was surprised by the result.
If not proven better while GF, I've been worse since. The joint pain in the feet is back, and I've got som skin rashes and itching.
Could skin prick testing be helpful in guiding an exclusion diet? Tex? Anybody?
BTW, I think some of you might be interested in this piece: http://www.ncbi.nlm.nih.gov/pubmed/25759526. I'm tempted to say that science is slowly moving on. No more unspecific gastroduodenitis?
Best Regards,
Tor
Seems like you agree with me that the IgA for Gliadin is very conclusive.
Actually the reason why I stopped the last GF trial was getting worse after starting drinking milk in the morning. I know that was stupid, but I thought it would help my osteopenia. I've learned here since that it probably would have been counter-productive anyway.
The reaction to milk was one of the reasons I ordered the blood tests. I thought gluten allergy had been ruled out by the celiac tests. One might say I was surprised by the result.
If not proven better while GF, I've been worse since. The joint pain in the feet is back, and I've got som skin rashes and itching.
Could skin prick testing be helpful in guiding an exclusion diet? Tex? Anybody?
BTW, I think some of you might be interested in this piece: http://www.ncbi.nlm.nih.gov/pubmed/25759526. I'm tempted to say that science is slowly moving on. No more unspecific gastroduodenitis?
Best Regards,
Tor
Life's hard and then you die
Yes, because as a general rule, IgA blood tests for anti-gliadin antibodies have rather low sensitivity, and therefore they are notorious for producing false negative results. However, false positives are relatively uncommon. If a blood test can detect antibodies to gluten (gliadin), that's a sign that you have probably been producing antibodies to gliadin for a long time, and a stool test would likely show a much higher level of antibodies in your intestines.Tor wrote:Seems like you agree with me that the IgA for Gliadin is very conclusive.
Regarding calcium, most commercially-produced almond milk contains at least as much calcium as milk. And you may have already discovered by reading other posts that the key to preventing osteoporosis is to take a magnesium supplement (or use a magnesium spray or lotion) and vitamin D. We can ingest enough calcium to be dangerous to our health (hypercalcemia), but we will not absorb much of it and convert it into bone tissue, unless we have plenty of magnesium and vitamin D available in our body. Almost everyone's diet contains plenty of calcium (without any need for supplementation) as long as magnesium and vitamin D supplies are adequate.
IMO skin prick tests show very little benefits for those of us with the type of food sensitivities associated with MC. The skin tests are IgE-based (IOW, classic allergy tests), and while we do sometimes have IgE reactions in the guts (when there are excess histamines present there), the primary reaction that triggers the T-cell proliferation that causes the chronic inflammation that perpetuates MC reactions is IgA-based.Tor wrote:Could skin prick testing be helpful in guiding an exclusion diet? Tex? Anybody?
Microscopic enteritis of course is nothing more than microscopic colitis. MC can affect any part of the digestive tract. I believe I discussed this in the book that I published in August of 2012. As you say, researchers are slowly making progress, but with all the references I cited in the book (from published, peer-reviewed medical journals), one would think that it would have dawned on most GI experts by now that microscopic enteritis is simply the manifestation of MC in the small intestine. It's not a separate disease — it's part of MC.
Thanks for the link. That's a new article.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hey Tex,
If you wouldn't mind sharing, I was just wondering what you ate for that year and a half that you were recovering. What pitfalls you had and was your recovery before or after your emergency surgery for your ileostomy. Hmmm...another idea for a new book titled The life and times of Tex, one mans journey to heal the world
If you wouldn't mind sharing, I was just wondering what you ate for that year and a half that you were recovering. What pitfalls you had and was your recovery before or after your emergency surgery for your ileostomy. Hmmm...another idea for a new book titled The life and times of Tex, one mans journey to heal the world
Vanessa
Tex, I don't know if you noticed that one of the authors of that article is the same Marsh that invented the classification for villous atrophy which defines celiac disease? Marsh is absolutely certain that Marsh I-II is pathological, and that Marsh 0 can be. Such a heavy group of scientists surely must carry some weight?
And I must admit I really liked this sentence from the article:
"Recognition of ME is the first step toward identifying the masked etiologies under the out of date diagnoses like IBS and other so called functional gut disorders"
I really like every scientist who tries to kill that IBS bullshit. I've had IBS for twenty years - and it got me nowhere.
Best Regards
Tor
And I must admit I really liked this sentence from the article:
"Recognition of ME is the first step toward identifying the masked etiologies under the out of date diagnoses like IBS and other so called functional gut disorders"
I really like every scientist who tries to kill that IBS bullshit. I've had IBS for twenty years - and it got me nowhere.
Best Regards
Tor
Life's hard and then you die
Vanessa,
I went through the clinic at the biggest local hospital around here, during the spring of 2000, in hopes of discovering why I had uncontrollable D. In June, the final test/exam (of many) was a colonoscopy, during which even I could see the relatively light patches of inflammation on the walls of my colon, on the monitor. When I asked the GI specialist what they meant, he just shrugged, and said that they might be areas of previous infections. Of course back then, the doctor didn't even consider taking biopsies. And back then, I certainly didn't know any better either. In fact back then, I didn't know anything about MC, nor was I even aware that such a disease existed.
Since I was busier than a long-tailed tomcat in a room full of rockingchairs back then, trying to turn a rapidly-growing business into a national business, I didn't have much time to fiddle with the internet, and being sick as a dog didn't help any. So it took me 2 years to decide that I was sensitive to gluten (even though I couldn't tell that I reacted to it when it experimented). I assumed that surely if I had celiac disease, my doctors would have tested me for that. It turns out they didn't.
So I decided that I must have some type of exotic disease that caused me to be sensitive to many foods, but I had never heard of that, nor anyone who had such a condition. So continued to experiment with cutting out foods and keeping records.
Anyway, I cut out gluten on August 27, 2002. But I couldn't detect any differences in my condition almost regardless of the foods that I avoided. I seemed to react to anything and everything. But after a few more months went by, I began to notice certain patterns in my symptoms associated with certain foods. It took me about a year and a half total, but I eventually compiled a list of many suspect foods (of course I wasn't positive that any them actually consistently caused a reaction, but I was highly suspicious).
Unfortunately I didn't record the exact date, but sometime after the start of the new year in 2004, I decided to bite the bullet and eliminate every last one of those suspicious foods, all their relatives, and all their derivatives, from my diet. Within about 2 weeks I was in remission, even though I was still tracking down various derivatives and related foods.
Occasionally (every month or so) I experimented with trying to add corn or cheese back into my diet, but it never worked, so that probably slowed down my healing. Like many, I assumed that lactose in dairy was the problem with dairy. But by testing lactose-free ice cream I discovered that it was actually the casein (or even all the sugar). It took over a year and a half on the restricted diet before I was able to successfully add any foods back into my diet (I think I tested corn first). But this was the point where I had my first surgery, because of a stenosis in my sigmoid colon (presumably aggravated by diverticulitis). The second surgery was done slightly over 4 years later.
Actually, from the time that I went through all the clinic tests to learn that there was nothing wrong with me, until I first heard that a disease called microscopic colitis even existed, slightly over 4 years passed. Fortunately I stumbled upon the old MC discussion and support board that preceded this one.
My diet consisted of pork and chicken, potatoes, occasional servings of broccoli, green beans, or squash, eggs, rice, water and black tea, and an occasional Virgil's Root Beer (which I learned about from Polly, who was a long-time member of the old board). There may be something I've forgotten, but that was my basic diet.
Tex
I went through the clinic at the biggest local hospital around here, during the spring of 2000, in hopes of discovering why I had uncontrollable D. In June, the final test/exam (of many) was a colonoscopy, during which even I could see the relatively light patches of inflammation on the walls of my colon, on the monitor. When I asked the GI specialist what they meant, he just shrugged, and said that they might be areas of previous infections. Of course back then, the doctor didn't even consider taking biopsies. And back then, I certainly didn't know any better either. In fact back then, I didn't know anything about MC, nor was I even aware that such a disease existed.
Since I was busier than a long-tailed tomcat in a room full of rockingchairs back then, trying to turn a rapidly-growing business into a national business, I didn't have much time to fiddle with the internet, and being sick as a dog didn't help any. So it took me 2 years to decide that I was sensitive to gluten (even though I couldn't tell that I reacted to it when it experimented). I assumed that surely if I had celiac disease, my doctors would have tested me for that. It turns out they didn't.
So I decided that I must have some type of exotic disease that caused me to be sensitive to many foods, but I had never heard of that, nor anyone who had such a condition. So continued to experiment with cutting out foods and keeping records.Anyway, I cut out gluten on August 27, 2002. But I couldn't detect any differences in my condition almost regardless of the foods that I avoided. I seemed to react to anything and everything. But after a few more months went by, I began to notice certain patterns in my symptoms associated with certain foods. It took me about a year and a half total, but I eventually compiled a list of many suspect foods (of course I wasn't positive that any them actually consistently caused a reaction, but I was highly suspicious).
Unfortunately I didn't record the exact date, but sometime after the start of the new year in 2004, I decided to bite the bullet and eliminate every last one of those suspicious foods, all their relatives, and all their derivatives, from my diet. Within about 2 weeks I was in remission, even though I was still tracking down various derivatives and related foods.
Occasionally (every month or so) I experimented with trying to add corn or cheese back into my diet, but it never worked, so that probably slowed down my healing. Like many, I assumed that lactose in dairy was the problem with dairy. But by testing lactose-free ice cream I discovered that it was actually the casein (or even all the sugar). It took over a year and a half on the restricted diet before I was able to successfully add any foods back into my diet (I think I tested corn first). But this was the point where I had my first surgery, because of a stenosis in my sigmoid colon (presumably aggravated by diverticulitis). The second surgery was done slightly over 4 years later.
Actually, from the time that I went through all the clinic tests to learn that there was nothing wrong with me, until I first heard that a disease called microscopic colitis even existed, slightly over 4 years passed. Fortunately I stumbled upon the old MC discussion and support board that preceded this one.
My diet consisted of pork and chicken, potatoes, occasional servings of broccoli, green beans, or squash, eggs, rice, water and black tea, and an occasional Virgil's Root Beer (which I learned about from Polly, who was a long-time member of the old board). There may be something I've forgotten, but that was my basic diet.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tor,
To be honest, I didn't even glance at the authors' names before I filed a shortcut in my bookmarks directory for later consideration. But I am very familiar with the work of Dr. Marsh, and I believe everything that I have read that was written by him. He's a good, down-to-earth, logically-thinking researcher.
Tex
To be honest, I didn't even glance at the authors' names before I filed a shortcut in my bookmarks directory for later consideration. But I am very familiar with the work of Dr. Marsh, and I believe everything that I have read that was written by him. He's a good, down-to-earth, logically-thinking researcher.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tor,
To show you how naive I was back then, I hadn't even heard of Dr. Fine and EnteroLab until I found the old discussion board. I could have hand-delivered the sample if I had been aware of the lab, because I only lived about 150 miles (about 240 kilimeters) from Dallas. Those tests could have saved me years of time and miserable symptoms, while experimenting with my diet.
Tex
To show you how naive I was back then, I hadn't even heard of Dr. Fine and EnteroLab until I found the old discussion board. I could have hand-delivered the sample if I had been aware of the lab, because I only lived about 150 miles (about 240 kilimeters) from Dallas. Those tests could have saved me years of time and miserable symptoms, while experimenting with my diet.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tor,
By the way, your suggestion for a new book title would probably result in a confusing hodgepodge of irrelevant information.
But hey! It might make a hilarious sit-com on TV.
Tex
By the way, your suggestion for a new book title would probably result in a confusing hodgepodge of irrelevant information.
But hey! It might make a hilarious sit-com on TV.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Vanessa,
See how confusing the book would probably end up? I couldn't even attribute the suggestion to the correct person.
But I can blame that on the flu — the fever is probably scrambling my brain. Or maybe it's just rescrambling my already-scrambled brain.
But you're right, as miserable, embarrassing, and demeaning as some of our experiences have been (especially the public accidents, loud gurgling,etc.,), a good writer could probably turn the material into a hilarious TV series.
Tex
See how confusing the book would probably end up? I couldn't even attribute the suggestion to the correct person.
But I can blame that on the flu — the fever is probably scrambling my brain. Or maybe it's just rescrambling my already-scrambled brain.
But you're right, as miserable, embarrassing, and demeaning as some of our experiences have been (especially the public accidents, loud gurgling,etc.,), a good writer could probably turn the material into a hilarious TV series.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
-
robinc2525
- Adélie Penguin
- Posts: 75
- Joined: Sat Jun 08, 2013 7:29 am
Tor,Tor wrote:Thanks, Tex
If not proven better while GF, I've been worse since. The joint pain in the feet is back, and I've got som skin rashes and itching.
Tor
You say your joint pains in the feet are back. I had severe pains under my feet and this started long before the D, and I was diagnozed with CC. I even went to an ortopedist and had tailormade soles to put in my shoes. I have since understood that this was arthritis pains.
After starting the GF, DF, Egg- and Soyfree diet, the pains under my feet subsidied. But, each time I had a gluten accident my knees would start hurting. Now, after 2 years on the diet, I still have issues with my legs, due to sciatic nerves, but I had a very good period after I started supplementing with magnesium and vitamin D, before the sciatic issue.
Magnesium, not in the form of tablets, but magnesium oil spray and foot soaks with Epsomsalt will help. Magtein (a new magnesium supplement) has also helped.
I hope you are aware of the fact that most people who cannot tolerate gluten, also react badly to soy. And soy is in almost every product you can find in the food store.
Skin rashes and itches can be an allergic reaction. Have you tried taking Zyrtec? Works wonderful.
By the way, I'm also one of the few who has IgG (110.20) against bananas.
Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013