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Hello Everyone,
I'm a newbie to this condition and the forum. All the postings I've read so far on this forum have been really helpful, thank you!!
I was recently diagnosed as sensitive/intolerant/allergic to gluten. I've been having GI problems for a year and a half now. 6 months ago I was diagnosed with candida and low blood iron levels. After 6 months of an anti-candida diet and anti-fungal meds I was still having GI issues, though to a lesser amount. I was just retested for candida and yeast is gone. However, during the retesting I came back positive with Giardia (which I'm guessing is due to my depressed immune system from the candida) and I had Gliadin antibodies present in my saliva. The salivary Gliadin Ab SIgA levels are just under borderline, but my doctor said that if my total intestinal SIgA was not so depressed, the level would be much higher and I should avoid gluten. (It may be worthwhile to note that my total level of SIgA and my Gliadin Ab in my saliva were near identical when I was tested originally 6 months ago). I also have elevated intestinal lysozyme and mild/distal colitis according to my GI panel results (which my doctor attributed to the Giardia infection). My doctor gave me a scant handout on celiac disease and gluten diet guidelines, but referred me to the internet for more details on diet recommendations.
I'm confused as to whether I have celiac disease, MC or just a case of gluten sensitivity, and if it matters which I have. I would really appreciate any input from anyone who has had similar experiences, and if this chain of diagnoses makes sense. I'm concerned about how strict my new diet should be, especially since I may be starting a new position at my company that would involve travel. I'm concerned of the difficulties of eating out and how much damage I will cause my system if I am served something with gluten in it. If it is going to be a major detriment to my health, I will try to go another way.
Thank you for any and all input!!!
Recently Diagnosed and Trying to Sort it Out
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hello Dawn, sorry to hear about all your intestine problems. Most of them I am not familiar with. Before I was diagnosed with CC, I considered Giardia as a causes of my D. As far as I know is that it easily can be solved with medication. Sometimes they also advice to follow a gluten free diet after a Giardia infection, because it causes some damage on the small intestine surface. If this is the case this should only be temporary.
Celiac disease can only be diagnosed with a blood test and a endoscopy op your small intestine. The only way to diagnose MC (CC and LC) is a colonoscopy with samples of your bowel. I don't really understand from your email if you have had these tests and what the results were.
However, mainstream medicine does not believe in it, but we all here do: a gluten sensitivity is very well possible without having celiac disease or MC.
There is another test for gluten sensitivity, a stool test, performed by Enterolab in Dallas. A lot of us here did the enterolab testing for gluten and also for other possible intolerances (milk, soy, egg and yeast). If you go to www.enterolab.com you will find all the details about the testing, background information on gluten sensitivity (without celiac disease).
Another webpage were a lot of information can be found on gluten sensitivity is www.glutenfreeandbeyond.org.
I am sure others here can help you a lot more with all your questions.
harma
Celiac disease can only be diagnosed with a blood test and a endoscopy op your small intestine. The only way to diagnose MC (CC and LC) is a colonoscopy with samples of your bowel. I don't really understand from your email if you have had these tests and what the results were.
However, mainstream medicine does not believe in it, but we all here do: a gluten sensitivity is very well possible without having celiac disease or MC.
There is another test for gluten sensitivity, a stool test, performed by Enterolab in Dallas. A lot of us here did the enterolab testing for gluten and also for other possible intolerances (milk, soy, egg and yeast). If you go to www.enterolab.com you will find all the details about the testing, background information on gluten sensitivity (without celiac disease).
Another webpage were a lot of information can be found on gluten sensitivity is www.glutenfreeandbeyond.org.
I am sure others here can help you a lot more with all your questions.
harma
Hi Dawn,
Welcome to our internet family. As Harma pointed out, unless you have tested positive to a blood test for anti-tissue transglutaminase antibodies, and you have small intestinal villus atrophy, (as determined by an upper endoscopy), then you cannot have an official celiac diagnosis. Likewise, if you have not been diagnosed to have MC, by a pathologist who studied biopsy samples of your colon, taken during a colonoscopy, (or at the very least, a sigmoidoscopy), then you do not have an official diagnosis of MC. That doesn't mean that you might not have either or both diseases - the criteria that I described are simply the medical requirements for an official diagnosis of either or both diseases, respectively. If you are truly gluten-sensitive, however, the treatment is basically the same, for all three conditions, so the absence of official diagnoses may be a moot point. Of course, if you happen to have MC, you may also have to cut all dairy products, maybe soy, and possibly other food ingredients from your diet, in addition to gluten.
Unfortunately, in all cases, the diet must be very strict, or you will continue to react. Also, it takes a while for the gut to heal, from the damage that has already accrued. Healing can take from 6 months to a year or more, depending on the level of damage, your immune system, and other considerations. That's 6 months to a year or more after you cut all gluten, (and any other food sensitivities), out of your diet. We are all different in our reactions, and in our response to the diet, and/or medications, so every one must work out a treatment program that best fits their own particular lifestyle, and their current circumstances. We'll be happy to help you in any way we can.
Candida often causes the leaky gut syndrome, and that can lead to food sensitivities, and it can trigger MC. There are many other possible causes of MC, including parasites, such as Giardia.
Please feel free to ask any questions that come to mind, and again, welcome aboard.
Tex (Wayne)
Welcome to our internet family. As Harma pointed out, unless you have tested positive to a blood test for anti-tissue transglutaminase antibodies, and you have small intestinal villus atrophy, (as determined by an upper endoscopy), then you cannot have an official celiac diagnosis. Likewise, if you have not been diagnosed to have MC, by a pathologist who studied biopsy samples of your colon, taken during a colonoscopy, (or at the very least, a sigmoidoscopy), then you do not have an official diagnosis of MC. That doesn't mean that you might not have either or both diseases - the criteria that I described are simply the medical requirements for an official diagnosis of either or both diseases, respectively. If you are truly gluten-sensitive, however, the treatment is basically the same, for all three conditions, so the absence of official diagnoses may be a moot point. Of course, if you happen to have MC, you may also have to cut all dairy products, maybe soy, and possibly other food ingredients from your diet, in addition to gluten.
Unfortunately, in all cases, the diet must be very strict, or you will continue to react. Also, it takes a while for the gut to heal, from the damage that has already accrued. Healing can take from 6 months to a year or more, depending on the level of damage, your immune system, and other considerations. That's 6 months to a year or more after you cut all gluten, (and any other food sensitivities), out of your diet. We are all different in our reactions, and in our response to the diet, and/or medications, so every one must work out a treatment program that best fits their own particular lifestyle, and their current circumstances. We'll be happy to help you in any way we can.
Candida often causes the leaky gut syndrome, and that can lead to food sensitivities, and it can trigger MC. There are many other possible causes of MC, including parasites, such as Giardia.
Please feel free to ask any questions that come to mind, and again, welcome aboard.
Tex (Wayne)
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.
Hello Dawn,
If the recommendation is to go gluten free, you might find Elizabeth Hasselbeck's book titled "The G Free Diet, a Gluten-free Survival Guide" an easy to read book. Elizabeth Hasselbeck has Celiac disease, and lives on a household where other family members are not afflicted with gluten sensitivity. This makes for some pretty interesting 'kitchen mechanics' -- plus, she has an active social life which has required that she develope ways to protect herself from being "Gluted" while eating out.
Gayle
If the recommendation is to go gluten free, you might find Elizabeth Hasselbeck's book titled "The G Free Diet, a Gluten-free Survival Guide" an easy to read book. Elizabeth Hasselbeck has Celiac disease, and lives on a household where other family members are not afflicted with gluten sensitivity. This makes for some pretty interesting 'kitchen mechanics' -- plus, she has an active social life which has required that she develope ways to protect herself from being "Gluted" while eating out.
Gayle
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MaggieRedwings
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Morning Dawn and Welcome to the Board.
Stick with us and you will have the support and information you require. Could not fully follow your medical history but going gluten free could be an excellent option.
Gayle - I have read Elizabeth's book and honestly it is OK but IMHO would not recommend to someone just starting the diet. It is an easy read but somehow I just can't put faith in it.
Maggie
Stick with us and you will have the support and information you require. Could not fully follow your medical history but going gluten free could be an excellent option.
Gayle - I have read Elizabeth's book and honestly it is OK but IMHO would not recommend to someone just starting the diet. It is an easy read but somehow I just can't put faith in it.
Maggie
Maggie Scarpone
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Resident Birder - I live to bird and enjoy life!
Thank you for the responses. I apologize that my medical history was hard to follow... when I read through it, it was difficult for me too... ! I haven't been officially diagnosed with celiac or MC. I have been tested positive for Gliadin antibodies in my saliva, and with mild/distal colitis from a stool test. My doctor recommended going gluten free, but did not feel the need to get an official celiac or MC test before starting the gluten free diet. My plan is to follow the gluten diet strictly and see how it goes. If I'm still having issues in 6 weeks perhaps I will need to be further tested for other food allergens, etc.
Thanks for the welcomes and recommendations. It's great to have a support like this forum!
Dawn
Thanks for the welcomes and recommendations. It's great to have a support like this forum!
Dawn
Hi Dawn,
While it is true that you do not need an official diagnosis, in order to treat the disease, be aware of the downside to using that approach:
1. If a legal issue ever arises where you might have to prove that you are gluten-sensitive, in a lawsuit, or whatever, the court will automatically recognize an "official" medical diagnosis as legal proof, but you will have no legal standing, without an "official" diagnosis, by "mainstream" medical standards.
2. If you have MC, and you are unable to determine a diet that will completely control your symptoms, and you decide that you would prefer to have a prescription for an effective drug to treat it, (such as a corticosteroid, or an immune system suppressant), you probably will not be able to obtain such a prescription, without an official diagnosis of MC, (or another inflammatory bowel disease). The best you could hope for, would be drugs used to treat IBS, which are relatively ineffective for an inflammatory bowel disease, such as MC.
3. After you have been on the GF diet for about a month or so, the celiac blood tests will no longer accurately detect fully-developed celiac disease, (they will never detect the early stages), because your blood level of antigliadin antibodies will have diminished to below the threshold at which the disease can be detected by those tests, due to their relatively poor sensitivity.
While it is true that the stool tests offered by Enterolab, in Dallas, can accurately detect gluten-sensitivity up to a year or more after the GF diet has been adopted, some doctors will not accept that as proof, and it will not constitute "legal" proof, in a court of law, since that testing method has not yet received the stamp of approval, by the mainstream medical community. That means that if you ever needed a "legal" diagnosis of celiac disease, you would have to undergo a gluten challenge, for probably 4 to 6 months, in order to get an accurate blood test result, (in the event that you happen to have fully-developed celiac disease). If you do not have fully-developed celiac disease, then the blood test results will be negative, anyway.
If you should need a valid diagnosis of MC, then you would have to do a gluten challenge, (or provoke an MC flare by some other means, such as using NSAIDs, for example), and then you would have to undergo a colonoscopy, so that biopsy samples from your colon could be obtained, for examination under a microscope, in order to detect the presence of the markers of MC, resulting in an official diagnosis.
That said, I am reasonably certain that I have both celiac disease, and MC, but my GI docs never tested me for either one, so I never received an official diagnosis. However, I controlled my symptoms by diet alone, and the lack of an official diagnosis has never caused any problems. I have been fortunate enough that even while in the hospital, for major surgery, no one has ever disputed my claim that I am gluten sensitive, so I was able to avoid any gluten problems while in the hospital. Of course, in a situation such as that, I never point out that I have never been officially diagnosed, but if anyone ever asks, I tell the truth. I can't recall a doctor ever asking, though. Fortunately, my GP recognizes that one can be gluten sensitive, without having fully-developed celiac disease, and he is fully aware of my situation. Many docs are not so open-minded, though, especially GI docs.
The reason I mention all this, is because if you try the diet for 6 weeks, (as you mentioned), you probably would not be able to get an accurate celiac blood test, at that point. Also, be aware that while you may see some improvement in 6 weeks, (especially if you only have celiac disease), if you happen to have MC, it usually takes at least several months, and often it takes 6 months to a year, in order to achieve full remission, by diet changes alone.
Whatever you decide to do, though, we will support you. Please stay in touch, and keep us informed, and don't hesitate to ask any questions that come to mind.
Tex
While it is true that you do not need an official diagnosis, in order to treat the disease, be aware of the downside to using that approach:
1. If a legal issue ever arises where you might have to prove that you are gluten-sensitive, in a lawsuit, or whatever, the court will automatically recognize an "official" medical diagnosis as legal proof, but you will have no legal standing, without an "official" diagnosis, by "mainstream" medical standards.
2. If you have MC, and you are unable to determine a diet that will completely control your symptoms, and you decide that you would prefer to have a prescription for an effective drug to treat it, (such as a corticosteroid, or an immune system suppressant), you probably will not be able to obtain such a prescription, without an official diagnosis of MC, (or another inflammatory bowel disease). The best you could hope for, would be drugs used to treat IBS, which are relatively ineffective for an inflammatory bowel disease, such as MC.
3. After you have been on the GF diet for about a month or so, the celiac blood tests will no longer accurately detect fully-developed celiac disease, (they will never detect the early stages), because your blood level of antigliadin antibodies will have diminished to below the threshold at which the disease can be detected by those tests, due to their relatively poor sensitivity.
While it is true that the stool tests offered by Enterolab, in Dallas, can accurately detect gluten-sensitivity up to a year or more after the GF diet has been adopted, some doctors will not accept that as proof, and it will not constitute "legal" proof, in a court of law, since that testing method has not yet received the stamp of approval, by the mainstream medical community. That means that if you ever needed a "legal" diagnosis of celiac disease, you would have to undergo a gluten challenge, for probably 4 to 6 months, in order to get an accurate blood test result, (in the event that you happen to have fully-developed celiac disease). If you do not have fully-developed celiac disease, then the blood test results will be negative, anyway.
If you should need a valid diagnosis of MC, then you would have to do a gluten challenge, (or provoke an MC flare by some other means, such as using NSAIDs, for example), and then you would have to undergo a colonoscopy, so that biopsy samples from your colon could be obtained, for examination under a microscope, in order to detect the presence of the markers of MC, resulting in an official diagnosis.
That said, I am reasonably certain that I have both celiac disease, and MC, but my GI docs never tested me for either one, so I never received an official diagnosis. However, I controlled my symptoms by diet alone, and the lack of an official diagnosis has never caused any problems. I have been fortunate enough that even while in the hospital, for major surgery, no one has ever disputed my claim that I am gluten sensitive, so I was able to avoid any gluten problems while in the hospital. Of course, in a situation such as that, I never point out that I have never been officially diagnosed, but if anyone ever asks, I tell the truth. I can't recall a doctor ever asking, though. Fortunately, my GP recognizes that one can be gluten sensitive, without having fully-developed celiac disease, and he is fully aware of my situation. Many docs are not so open-minded, though, especially GI docs.
The reason I mention all this, is because if you try the diet for 6 weeks, (as you mentioned), you probably would not be able to get an accurate celiac blood test, at that point. Also, be aware that while you may see some improvement in 6 weeks, (especially if you only have celiac disease), if you happen to have MC, it usually takes at least several months, and often it takes 6 months to a year, in order to achieve full remission, by diet changes alone.
Whatever you decide to do, though, we will support you. Please stay in touch, and keep us informed, and don't hesitate to ask any questions that come to mind.
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.