Hi everyone. Test results arrived in my box today...looks like things will have to change.
A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Antigliadin IgA 15 (Normal Range <10 Units)
Fecal Antitissue Transglutaminase IgA 12 Units (Normal Range <10 Units)
Quantitative Microscopic Fecal Fat Score 1100 Units (Normal Range <300 Units)
Fecal anti-casein (cow's milk) IgA antibody 8 Units (Normal Range <10 Units)
HLA-DQB1 Molecular analysis, Allele 1 0201
HLA-DQB1 Molecular analysis, Allele 2 0302
Serologic equivalent: HLA-DQ 2,3 (Subtype 2,8)
C) Egg, Yeast, and Soy Food Sensitivity Stool Panel
Fecal anti-ovalbumin (chicken egg) IgA antibody 7 Units (Normal Range <10 Units)
Fecal Anti-Saccharomyces cerevisiae (dietary yeast) IgA 6 Units (Normal Range <10 Units)
Fecal Anti-Soy IgA 21 Units (Normal Range <10 Units
How necessary is it to give up the bit of milk I'd use in my coffee? Irony is, I gave up milk and switched to soy thinking the milk was making me sick!!!
I think the gluten is easier to give up than the soy!! Even my gum has soy in it...
Today, I'm overwhelmed. Tomorrow, I'll be thankful that I FINALLY have an answer....
Test Results
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Test Results
Trace
Hi Trace,
According to the test results, you don't have to give up milk, (or dairy products in general). You may, however, be lactose intolerant, until your gut heals, since you appear to have accrued a lot of small intestinal damage, from the gluten. Damage to the brush border regions of the small intestine can interfere with the production of lactase, (and therefore interfere with the digestion of lactose), but normal production of the lactase enzyme usually resumes, after the damage heals.
In fact, other than the need to cut out gluten and soy, everything looks good, as far as the other foods tested are concerned.
You do, however, have a copy of both celiac genes, and a significant amount of small intestinal damage. I ain't no doctor, but based on that evidence, I'd say that you are a prime candidate for having celiac sprue. Even if you have had the classic celiac serum tests, and they turned out negative, that is not proof that you are not a celiac. Those tests are notorious for producing false negative results - they simply are not very accurate.
Of course, you may just have MC, with a high propensity for small intestinal damage from gluten, but you are definitely a candidate for celiac sprue, so I would strongly advise that you avoid gluten like the plague, since untreated celiacs carry an increased risk of non-Hodgkin lymphoma, and other types of lymphoma.
Would you mind if I add your genetic test results to our database for that information?
Tex
According to the test results, you don't have to give up milk, (or dairy products in general). You may, however, be lactose intolerant, until your gut heals, since you appear to have accrued a lot of small intestinal damage, from the gluten. Damage to the brush border regions of the small intestine can interfere with the production of lactase, (and therefore interfere with the digestion of lactose), but normal production of the lactase enzyme usually resumes, after the damage heals.
In fact, other than the need to cut out gluten and soy, everything looks good, as far as the other foods tested are concerned.
You do, however, have a copy of both celiac genes, and a significant amount of small intestinal damage. I ain't no doctor, but based on that evidence, I'd say that you are a prime candidate for having celiac sprue. Even if you have had the classic celiac serum tests, and they turned out negative, that is not proof that you are not a celiac. Those tests are notorious for producing false negative results - they simply are not very accurate.
Of course, you may just have MC, with a high propensity for small intestinal damage from gluten, but you are definitely a candidate for celiac sprue, so I would strongly advise that you avoid gluten like the plague, since untreated celiacs carry an increased risk of non-Hodgkin lymphoma, and other types of lymphoma.
Would you mind if I add your genetic test results to our database for that information?
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.
No, I don't mind, Tex. I'm glad you addressed the dairy issue. I'll probably give it up for a few months, but I love cheese, so I'm awfully glad I can eat it again someday. For now, I'll just bypass it. But, from what I understand...I'm okay with the milk protein; it's the sugar that gets me ill? B/c I do get ill from drinking milk...but I can eat yogurt and cottage cheese with other foods.
But, horror of horrors, the soy means no M & M's for me!!!! I'm not sure how I'm going to survive that one!
Becky, thank you for your kind words. I wasn't brave at all...just desperate. I've lost almost all the enamel on my teeth, my skin looks terrible, and I vomit every day.....I just KNEW there had to be something better than that!!! Be kind to yourself and get the tests done. I feel so empowered. I'm not at the mercy of whatever it was that made me ill each day! I know what the enemy is now!!!! (I sound good about it now....catch up with me in a few weeks when I'm whining about no pizza or favorite Chinese food!!!)
Thank you Tex, and others on this board, for encouraging me to take the tests. I did have the blood tests...they were negative.
And, Tex, when there's time...can you englighten me about the MC gene? Doesn't it appear to be that I have two of them?
But, horror of horrors, the soy means no M & M's for me!!!! I'm not sure how I'm going to survive that one!
Becky, thank you for your kind words. I wasn't brave at all...just desperate. I've lost almost all the enamel on my teeth, my skin looks terrible, and I vomit every day.....I just KNEW there had to be something better than that!!! Be kind to yourself and get the tests done. I feel so empowered. I'm not at the mercy of whatever it was that made me ill each day! I know what the enemy is now!!!! (I sound good about it now....catch up with me in a few weeks when I'm whining about no pizza or favorite Chinese food!!!)
Thank you Tex, and others on this board, for encouraging me to take the tests. I did have the blood tests...they were negative.
And, Tex, when there's time...can you englighten me about the MC gene? Doesn't it appear to be that I have two of them?
I agree with Tex. Your fecal fat score is very high, but once you eliminate the gluten, soy and dairy, you should be on your way to healing your small intestine. Hopefully, once it's healed you should be able to begin enjoying dairy again.In fact, other than the need to cut out gluten and soy, everything looks good, as far as the other foods tested are concerned.
All things considered, there is light at the end of the tunnel. I'd suggest that you read the section "Information on Diet" (http://www.perskyfarms.com/phpBB2/viewforum.php?f=6) to get a handle on how to avoid gluten, soy and dairy in your diet.
If you need to satisfy your chocolate cravings, look for Enjoy Life chocolate chips in a Whole Foods store. They are free of dairy and soy and are pretty tasty.
Gloria
You never know what you can do until you have to do it.
Trace,
Cheese, especially the aged cheeses, are relatively low in lactose, (so is yogurt, since the bacteria in yogurt are there to "predigest" the lactose). Therefore, you should be able to eat small to moderate amounts of them, without any serious problems. Also, lactose intolerance is a different type of phenomenon than the other food, (protein), intolerances that we worry about. Lactose intolerance is not due to an "allergic" reaction within our digestive system, but rather it's due to an enzyme deficiency, (lactase). With a protein intolerance, we may react to even trace amounts of the offending food. With lactose intolerance, however, we only react when we ingest more lactose than we have lactase available to digest it. IOW, except in very severe cases, we will still be producing a reduced level of lactase enzyme, and as long as we do not eat more dairy product than we can digest, we will not react. The trick is to not overdo it, while the gut is trying to heal. That said, as Gloria mentioned, (and you also mentioned, yourself), you would probably be ahead, if you avoid all dairy products for a while, to allow your gut the maximum opportunity to heal, and then you can add it back in, later.
The problem with eating lactose, when one is lactase deficient, is that the lactose passes undigested, into the colon, where it is digested by a fermentation process, (which causes gas and cramps). Unfortunately, this causes a disruption in the normal gut bacteria balance, which can lead to other problems, in an already overly-sensitized gut.
Concerning your comment about the enamel on your teeth, gluten had pretty much the same effect on my teeth, before I figured out what was wrong. The prevalence of tooth enamel defects is definitely a celiac phenomenon, and it's an indication of long-term system-wide damage, due to gluten sensitivity. That's one more reason why I'm pretty sure that you and I are both undiagnosed celiacs.
Regarding your question about the gene test results - those are both celiac genes. The first is the most common celiac gene, (DQ-2), and the second is the less common celiac gene, (DQ-8). You inherited one from each parent. Does anyone in your family have celiac disease, or does anyone else have celiac symptoms?
Tex
P S Please don't be tempted to be "lax" with soy, just because most chocolate contains it. Some of our members who are intolerant to it find that even the tiniest traces of soy will cause them to react violently.
Cheese, especially the aged cheeses, are relatively low in lactose, (so is yogurt, since the bacteria in yogurt are there to "predigest" the lactose). Therefore, you should be able to eat small to moderate amounts of them, without any serious problems. Also, lactose intolerance is a different type of phenomenon than the other food, (protein), intolerances that we worry about. Lactose intolerance is not due to an "allergic" reaction within our digestive system, but rather it's due to an enzyme deficiency, (lactase). With a protein intolerance, we may react to even trace amounts of the offending food. With lactose intolerance, however, we only react when we ingest more lactose than we have lactase available to digest it. IOW, except in very severe cases, we will still be producing a reduced level of lactase enzyme, and as long as we do not eat more dairy product than we can digest, we will not react. The trick is to not overdo it, while the gut is trying to heal. That said, as Gloria mentioned, (and you also mentioned, yourself), you would probably be ahead, if you avoid all dairy products for a while, to allow your gut the maximum opportunity to heal, and then you can add it back in, later.
The problem with eating lactose, when one is lactase deficient, is that the lactose passes undigested, into the colon, where it is digested by a fermentation process, (which causes gas and cramps). Unfortunately, this causes a disruption in the normal gut bacteria balance, which can lead to other problems, in an already overly-sensitized gut.
Concerning your comment about the enamel on your teeth, gluten had pretty much the same effect on my teeth, before I figured out what was wrong. The prevalence of tooth enamel defects is definitely a celiac phenomenon, and it's an indication of long-term system-wide damage, due to gluten sensitivity. That's one more reason why I'm pretty sure that you and I are both undiagnosed celiacs.
Regarding your question about the gene test results - those are both celiac genes. The first is the most common celiac gene, (DQ-2), and the second is the less common celiac gene, (DQ-8). You inherited one from each parent. Does anyone in your family have celiac disease, or does anyone else have celiac symptoms?
Tex
P S Please don't be tempted to be "lax" with soy, just because most chocolate contains it. Some of our members who are intolerant to it find that even the tiniest traces of soy will cause them to react violently.
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.
Trace,
I am not sure that vomiting is a usual symptom of MC. It sounds more like some kind of fructose intolerance. Have you been tested for fructose intolerance? How long have you been vomiting? Do you feel nauseous when you eat fruit? I have dietary fructose intolerance ( differenct from Hereditary fructose intolerance) as well as MC. My doctor says the MC and DFI are not related - two separate problems.
Pat
I am not sure that vomiting is a usual symptom of MC. It sounds more like some kind of fructose intolerance. Have you been tested for fructose intolerance? How long have you been vomiting? Do you feel nauseous when you eat fruit? I have dietary fructose intolerance ( differenct from Hereditary fructose intolerance) as well as MC. My doctor says the MC and DFI are not related - two separate problems.
Pat
Vomiting is not common with MC, but it's certainly not rare, either. Many of us here have experienced it. The condition is called gastroparesis, and it simply means that the motility of the stomach is either abnormal, or absent. During MC reactions, he motility of various parts of the GI tract can range anywhere from high speed, to virtually zero, at various stages during reaction "episodes", depending on the individual.
Vomiting every day, though, is somewhat rare, I would think. My vomiting "spells", usually lasted for a day or so, and then went away for maybe a week or so. I had alternating D and C, though, not constant D.
Tex
P S You have to bear in mind that a lot of GI doctors say a lot of things about MC, that simply are not true. Many insist that diet has nothing to do with symptoms, and/or reactions, for example, though some are beginning to "see the light".
Vomiting every day, though, is somewhat rare, I would think. My vomiting "spells", usually lasted for a day or so, and then went away for maybe a week or so. I had alternating D and C, though, not constant D.
Tex
P S You have to bear in mind that a lot of GI doctors say a lot of things about MC, that simply are not true. Many insist that diet has nothing to do with symptoms, and/or reactions, for example, though some are beginning to "see the light".
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.
Tex, to answer your question. No, there have been no other diagnosed cases of celiac in my family. My paternal grandmother (90) is on her second go round with colon cancer. My mother has heart issues and bowel issues (c) for which she refuses to believe could have anything to do with celiac. Don't ask.
I've not strayed from the diet since I got the results, nor will I ever willingly do do. I've suffered wayyyy to long with problems. Interesting to note, though, I feel like poo. The wind picked up here, which led to some sinus issues, which now has settled in my chest. Miserable in the 90 degree heat! I wonder if some of this can be attributed to the gluten/soy leaving my system? I feel like I'm itching under my skin.
Two things worth noting: I had a dental appt on Th. My dentist has played the "let's stabalize your mouth" game for years. When I told him that I'd gotten a diagnosis of celiac, he was very pleased. He told me that the ph in my mouth is very acidic b/c of this...he told me to get two mouth rinses to protect my teeth...I'll get the paper out of my truck later for you if you are interested. Secondly, my rheumatologist told me that this dietary change will certainly affect my fibro/myofascia issues. Yippee!
Pat...like Tex, I have gastropareis. Not a pretty sight. The reason I vomit is b/c the food gets stuck when my stomach becomes "paralyzed". It's a motility issue...curious to see how that will change with the new diet.
Gloria...bless you! I've been crazy looking for a substitute for my M & Ms...do you even know how many things use soy as an ingredient????
I'm heading to WF today, so I'm going to check it out.
I've not strayed from the diet since I got the results, nor will I ever willingly do do. I've suffered wayyyy to long with problems. Interesting to note, though, I feel like poo. The wind picked up here, which led to some sinus issues, which now has settled in my chest. Miserable in the 90 degree heat! I wonder if some of this can be attributed to the gluten/soy leaving my system? I feel like I'm itching under my skin.
Two things worth noting: I had a dental appt on Th. My dentist has played the "let's stabalize your mouth" game for years. When I told him that I'd gotten a diagnosis of celiac, he was very pleased. He told me that the ph in my mouth is very acidic b/c of this...he told me to get two mouth rinses to protect my teeth...I'll get the paper out of my truck later for you if you are interested. Secondly, my rheumatologist told me that this dietary change will certainly affect my fibro/myofascia issues. Yippee!
Pat...like Tex, I have gastropareis. Not a pretty sight. The reason I vomit is b/c the food gets stuck when my stomach becomes "paralyzed". It's a motility issue...curious to see how that will change with the new diet.
Gloria...bless you! I've been crazy looking for a substitute for my M & Ms...do you even know how many things use soy as an ingredient????
I'm heading to WF today, so I'm going to check it out.
Trace
Trace,
I understand completely regarding your mother's "don't ask" policy concerning bowel issues. My mother also had major bowel issues, (including a couple of surgeries), and she had the same attitude.
It takes a while for some of the "systemic" aches and pains, (including the brain fog), to go away, but one of these days, you'll suddenly realize, "Hey, I feel "normal" again - this is fantastic!" There are still some "left-over" viruses going around, too, even though it's a bit late in the season for that.
You're fortunate to have a dentist who seems to be much more knowledgeable than most, and your rheumatologist seems to be waaaaaaaaaaaaaay above par. To be honest, I wasn't even aware that any mouthwashes would be helpful for gluten issues, so yes, I would be interested in learning more about that option.
That reminds me that my first "digestive system" intolerance began when I was in my early 20s. After using Scope mouthwash for years, I suddenly discovered that whenever I used it, my mouth became inflamed, and burned for several hours afterwards. When I stopped using it, of course, the problem went away.
Thanks for the info,
Tex
I understand completely regarding your mother's "don't ask" policy concerning bowel issues. My mother also had major bowel issues, (including a couple of surgeries), and she had the same attitude.
It takes a while for some of the "systemic" aches and pains, (including the brain fog), to go away, but one of these days, you'll suddenly realize, "Hey, I feel "normal" again - this is fantastic!" There are still some "left-over" viruses going around, too, even though it's a bit late in the season for that.
You're fortunate to have a dentist who seems to be much more knowledgeable than most, and your rheumatologist seems to be waaaaaaaaaaaaaay above par. To be honest, I wasn't even aware that any mouthwashes would be helpful for gluten issues, so yes, I would be interested in learning more about that option.
That reminds me that my first "digestive system" intolerance began when I was in my early 20s. After using Scope mouthwash for years, I suddenly discovered that whenever I used it, my mouth became inflamed, and burned for several hours afterwards. When I stopped using it, of course, the problem went away.
Thanks for the info,
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.
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kate_ce1995
- Rockhopper Penguin
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- Joined: Wed May 25, 2005 5:53 pm
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For the lactose problem, you can try lactaid tablets, or lactaid milk for your morning coffee. My mom has a lactose intolerance and that stuff works great...it is the enzyme that digests the lactose. Just check that lactaid milk for other nasty ingredients on your intolerance list.
You are now well on your way to recovery.
Katy
PS: I've had nausea a lot in the last 20 years. Don't know if its been from gluten, my gyn issues, or stress. Drs. are useless IMO, and you can never get a straight answer, but I won't rant
You are now well on your way to recovery.
Katy
PS: I've had nausea a lot in the last 20 years. Don't know if its been from gluten, my gyn issues, or stress. Drs. are useless IMO, and you can never get a straight answer, but I won't rant
The mouthwashes my dentist told me to use are: Phos-flur in the morning. It's a flouride rinse. And then at night I use Biotene. It's a "dry mouth" rinse. I don't have any gum issues, but he said that I have a lot of acid damage to my teeth and enamel. So, we'll try this. I found them at Walgreens. I think I spent 25.00 for both....
I love my rheumatologist. She told me when she diagnosed me with fibormyalgia that there was an autoimmune disorder lurking, she just hadn't found it. She kept checking for arthritis, and she told me just recently, she'd trusted the gastro to be on the ball. Big mistake. I think she's adding the entero method into her testing now. She said, "We doctors have a big instruction manual, but sometimes, I think it's wrong!"
I love my rheumatologist. She told me when she diagnosed me with fibormyalgia that there was an autoimmune disorder lurking, she just hadn't found it. She kept checking for arthritis, and she told me just recently, she'd trusted the gastro to be on the ball. Big mistake. I think she's adding the entero method into her testing now. She said, "We doctors have a big instruction manual, but sometimes, I think it's wrong!"
Trace
Trace,
Thanks for the information on the rinses,
You know, if every doctor was as open-minded, and as skilled as your rheumatologist, the medical profession would absolutely "rock".
Tex
Thanks for the information on the rinses,
You know, if every doctor was as open-minded, and as skilled as your rheumatologist, the medical profession would absolutely "rock".
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.