Susanne,
I can understand wanting to get off Entocort - I am always reluctant to take anything, perhaps even when I should. In the meantime, it's good that you've found out that skipping it resulted in D. As you've realized, that points to some culprit food (and you have your Enterolab results to point out all the likeliest suspects).
Your daughter is lucky to have this information, which I hope will help her to avoid worsening health. (Your son, too, in case he should ever have an issue.)
Dinner is my easy meal - a meat, a vegetable or two. Breakfast was going along nicely till I "lost" eggs, but we've established good routines for that now. My big dilemma is always lunch - unless we have leftovers from dinner, which I'm finally managing to plan more regularly.
Head-spinning is not uncommon, by the way - brain fog can actually be a gluten symptom. I had a terrible time at first with focusing, concentration, and even several times lost my train of thought in the middle of a sentence - not even very long or complex sentence. It took me the better part of a week to write my first post here. I bet you'll be turning things around, armed with this new information and your determination to deal with it. I, too, was relieved to know what was wrong - far more than I was upset about the news, though obviously it's meant a lot of change and adjustment.
Sara
Enterolab results
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Ant - You have both of the main genes for celiac, which I'm sure gives you a huge predisposition to getting celiac. I'm not sure about the other sensitivities, but I imagine it is probably the same as having two of the same gene, which, according to Tex, makes you very likely to have multiple intolerances, with more severe manifestations.
Hugs,
Hugs,
Denise
"Be the change you want to see in this world."
Mahatma Gandhi
"Be the change you want to see in this world."
Mahatma Gandhi
Sara - I always thought that my brain fog, and also my Mother's, came from having diabetes. Now that I think about it, it is getting better. Good to know that it might actually go away! I've been dying my hair blond to go with my mental status, maybe I'll be able to go back to being brunette. Just kidding!!! LOL. My mom really was blond, though. I hope I didn't offend anyone, I really am just joking.
Hugs,
Hugs,
Denise
"Be the change you want to see in this world."
Mahatma Gandhi
"Be the change you want to see in this world."
Mahatma Gandhi
OK, it appears that I have no other choice but to fall on my sword, here. 
As Roseanne Roseannadanna would have said, "Never mind". So let's see if I can get out of the corner that I seem to have painted myself into. 
Gloria, you're right - this genetic stuff can get complicated. Here's the problem:
When Enterolab does the gene tests, they only test for half the haplotype. That makes the results a lot more difficult to understand/interpret, IMO, because you have to either remember the other half of the haplotype possibilities, and try to guess which one it might be, or look it up in a chart, (and guess at a match).
These haplotypes are described as sets of DQA1 and DQB1 components. Enterolab tests for only the DQB1 components. That saves roughly half the cost of a full test, and that's why their price is typically less than half of what the competition charges for these tests.
Here are the celiac haplotypes, (for caucasian Americans):
For DQ2, the possibilities are:
subtype 2.5, which consists of an A1 allele of 0501, and a B1 allele of 0201
subtype 2.2, which consists of an A1 allele of 0201, and a B1 allele of 0202
subtype 2.3, which consists of an A1 allele of 0302, and a B1 allele of 0202
Remember that Enterolab reports only the B1 half of the haplotype.
For DQ8, the possibilities are:
subtype 8.1, which consists of an A1 allele of 0301, and a B1 allele of 0302
subtype 8.1, which consists of an A1 allele of 0302, and a B1 allele of 0302
That's not a typo - the subtypes are the same, which certainly doesn't help to reduce the confusion.
So, when Enterolab reports a result as:
HLA-DQB1 Molecular analysis, Allele 1 0201, (which can be represented as DQB1*0201),
That actually implies a genetic link between that allele and a DQA1*0501 allele, resulting in a combination that forms the DQ2.5 haplotype.
Likewise, when Enterolab reports:
HLA-DQB1 Molecular analysis, Allele 2 0202, (or DQB1*202),
That implies a genetic link between that allele and a DQA1*0201 allele, to form the DQ2.2 haplotype.
Or, it could imply a genetic link between that allele and a DQA1*302 allele to form the DQ2.3 haplotype. IOW, in some cases, reporting only the DQB1 component, does not completely specify the genetic arrangement, due to alternate combinations with DQA1 alleles, (unless the subtype is also specified).
Additionally, there are differences in the immune responses associated with these haplotypes. For example, the DQ2.5 haplotype, (DQA1*0501:DQB1*0201), results in the most frequent, (and usually most potent), response to gluten, since it is responsible for presenting the alpha2-gliadin, (which elicits the most effective T-cell response). By comparison, the DQ2.2 and DQ2.3 haplotypes are not capable of presenting as many gluten proteins to the immune system, so they generally elicit a less severe response.
Regarding the effects of multiple copies of celiac genes, according to Wikipedia:
Edit:
The bottom line is, my statement in a previous post, where I said, (referring to Susanne's test results):
Note that the subtype reported by Enterolab is not a complete subtype designation. It only lists the first number in the set, (the number following the decimal point is omitted, because it's unknown). IOW, they would report a subntype "2.3" as simply "2". IOW, no information on the other half of the haplotype, (the DQA1 portion), is reported, (which is correct, of course, since they don't test for the DQA1 component). That leaves a few unresolved options, of course, but it's not something that we can't live with, since certain combinations, (subtypes), are much more common than others.
Tex
As Roseanne Roseannadanna would have said, "Never mind". So let's see if I can get out of the corner that I seem to have painted myself into. Gloria, you're right - this genetic stuff can get complicated. Here's the problem:
When Enterolab does the gene tests, they only test for half the haplotype. That makes the results a lot more difficult to understand/interpret, IMO, because you have to either remember the other half of the haplotype possibilities, and try to guess which one it might be, or look it up in a chart, (and guess at a match).
These haplotypes are described as sets of DQA1 and DQB1 components. Enterolab tests for only the DQB1 components. That saves roughly half the cost of a full test, and that's why their price is typically less than half of what the competition charges for these tests.
Here are the celiac haplotypes, (for caucasian Americans):
For DQ2, the possibilities are:
subtype 2.5, which consists of an A1 allele of 0501, and a B1 allele of 0201
subtype 2.2, which consists of an A1 allele of 0201, and a B1 allele of 0202
subtype 2.3, which consists of an A1 allele of 0302, and a B1 allele of 0202
Remember that Enterolab reports only the B1 half of the haplotype.
For DQ8, the possibilities are:
subtype 8.1, which consists of an A1 allele of 0301, and a B1 allele of 0302
subtype 8.1, which consists of an A1 allele of 0302, and a B1 allele of 0302
That's not a typo - the subtypes are the same, which certainly doesn't help to reduce the confusion.
So, when Enterolab reports a result as:
HLA-DQB1 Molecular analysis, Allele 1 0201, (which can be represented as DQB1*0201),
That actually implies a genetic link between that allele and a DQA1*0501 allele, resulting in a combination that forms the DQ2.5 haplotype.
Likewise, when Enterolab reports:
HLA-DQB1 Molecular analysis, Allele 2 0202, (or DQB1*202),
That implies a genetic link between that allele and a DQA1*0201 allele, to form the DQ2.2 haplotype.
Or, it could imply a genetic link between that allele and a DQA1*302 allele to form the DQ2.3 haplotype. IOW, in some cases, reporting only the DQB1 component, does not completely specify the genetic arrangement, due to alternate combinations with DQA1 alleles, (unless the subtype is also specified).
Additionally, there are differences in the immune responses associated with these haplotypes. For example, the DQ2.5 haplotype, (DQA1*0501:DQB1*0201), results in the most frequent, (and usually most potent), response to gluten, since it is responsible for presenting the alpha2-gliadin, (which elicits the most effective T-cell response). By comparison, the DQ2.2 and DQ2.3 haplotypes are not capable of presenting as many gluten proteins to the immune system, so they generally elicit a less severe response.
Regarding the effects of multiple copies of celiac genes, according to Wikipedia:
I think what they're trying to say there, is that multiple copies of celiac genes do not necessarily cause an increase in clinical symptoms, but the risks of lymphoma and histological damage is significantly greater, when multiple copies of celiac genes are present, at least one of which is the DQ2.5 subtype.Multiple copies of the DQ2.5 haplotype do not cause apparent increases of severity, DQ2.5/DQ2 increases risk of life threatening complications and more severe histological findings.[14][15]
Edit:
The bottom line is, my statement in a previous post, where I said, (referring to Susanne's test results):
is obviously incorrect, because she does have the DWB1*0201 allele, (implying that she has the corresponding DQA1*0501 gene, which indicates a DQ2.5 haplotype. That means that the DQB1*0202 allele is also a celiac gene, (because of the presence of the DQ2.5 haplotype). Therefore she has true double DQ2 gene status. Note that Susanne did test positive to every food for which she was tested.Accordingly, I have a strong hunch that the fact that it is a "hybrid" category, probably excludes it from the highly sensitized and multiply sensitized status of the DQ1 and DQ3 designations,
Note that the subtype reported by Enterolab is not a complete subtype designation. It only lists the first number in the set, (the number following the decimal point is omitted, because it's unknown). IOW, they would report a subntype "2.3" as simply "2". IOW, no information on the other half of the haplotype, (the DQA1 portion), is reported, (which is correct, of course, since they don't test for the DQA1 component). That leaves a few unresolved options, of course, but it's not something that we can't live with, since certain combinations, (subtypes), are much more common than others.
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.
Tex, I didn't realize that's what that meant (my results are reported in exactly the same manner). I wonder whether Enterolab adds any guess at all, or uses the American Red Cross method for reporting?
I really feel as though we're getting at something, and I bet it could help someone, and we're closing in on an excellent question, at least, if not all the answers.
Stay cool, everyone!
Love,
Sara
I really feel as though we're getting at something, and I bet it could help someone, and we're closing in on an excellent question, at least, if not all the answers.
Stay cool, everyone!
Love,
Sara
Your test results are:Denise wrote:Tex - Now I'm confused. I have the 0302, celiac gene and the 0202, gluten sensitivity gene. I just went back and read Dr. Fine's interpretation of my gene test and he clearly states that this combination puts me at risk for a more severe form of celiac or gluten sensitivity. When you say heightened sensitivity are you talking about things other than gluten?
HLA-DQB1 Molecular analysis, Allele 1 0302
HLA-DQB1 Molecular analysis, Allele 2 0202
Serologic equivalent: HLA-DQ 3,2 (Subtype 8,2)
OK, you definitely have the second most common celiac gene, (DQ8), but the 0202 allele could result in either a 2.2 or a 2.3 subtype, when associated with the correct DQA1 allele, (whatever it might happen to be - either 0201, or 0302). When I say "heightened sensitivity", I am usually referring to an increased sensitivity, (IOW, a lowered reaction threshold), to not only gluten, but most likely to most or all foods to which a sensitivity might exist. Notice what Dr. Fine said:
OK, since you don't have a DQB1*0201 gene, the likelihood of the 0202 allele being associated with a celiac haplotype, is very slight, suggesting that you have a combination of a celiac gene, (the 0302 allele), and probably a non-celiac gluten-sensitive gene, (the 0202 allele). Not having the DQA1 results, we can only guess about the 0202 allele, so probably, (with any luck at all), your genes should not fall into a category that predisposes to increased sensitivity, and increased number of food sensitivities. At least, that's my best guess.Interpretation Of HLA-DQ Testing: HLA-DQB1 gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue (HLA-DQB1*0201 or HLA-DQB1*0302). Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a second gene that by itself can rarely be associated with celiac sprue (HLA-DQ2 other than by HLA-DQB1*0201), and when associated with one of the main celiac genes, strengthens the predisposition to getting the disease, and with more severe manifestations. Having one celiac gene and one gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene.
We have to remember that each of us has either 2 celiac genes, or 1 celiac gene and a non-celiac gene, or 2 non-celiac genes. No one here has less than two gluten-sensitive genes. IOU, genes that predispose to gluten-sensitivity are ubiquitous.
I happen to have the DQ2.5 subtype, (which presumably is associated with a maximum risk of additional symptoms, and a maximum risk of intestinal damage, and possibly damage to other organs. (By "maximum", I'm referring to the aggregate odds associated with any genetic subtype that predisposes to celiac disease). I make these observations:
When I was sick, I was truly sick - it would be difficult to visualize a "sicker" condition. I had every symptom ever heard of, in severe form, and even after resolving all my clinical symptoms, I ended up with several types of permanent damage. On many occasions, I was so weak that I had trouble getting out of bed and walking to the bathroom, and once there, I sometimes found myself dealing with explosive D and projectile vomiting, at the same time. (And sometimes I didn't make it to the bathroom in time, of course). None of that is any fun, especially when every joint and muscle in your body is screaming with pain, and the room is swimming due to dizziness, and a crushing migraine, and extreme brain fog makes it impossible to even think straight. All you can think of, in a situation such as that, is usually something such as, "What's happening to me?" (I'll never forget that helpless feeling).
However, despite the severity of symptoms when I was reacting, after reaching remission, as everyone knows, all my symptoms disappeared, and I was able to resume eating most of the foods that I had cut out of my diet while healing. So I have to conclude that the DQ2.5 subtype causes severe symptoms, and extensive food sensitivities, but some of the food sensitivities may not be permanent
I can't say what the other subtypes are like, because I haven't experienced them. As far as I can tell, though, none of them are any fun, and the differences may be a moot point.
So is someone with double DQ1 genes, or double DQ3 genes, more likely to have more increased sensitivity, and more food sensitivities?
Probably, but there seem to be exceptions. Is someone with double DQ2 genes more likely to have increased gluten-sensitivity, and a lower risk of additional food sensitivities? Maybe, but the pattern doesn't seem to be clear-cut.Should we perhaps be associating increased sensitivity, and increased severity of symptoms with the DQ2.5 haplotype, instead, or in addition to double DQ combinations? Maybe, but that's a tough judgment call, since we can't really appreciate other genetic haplotypes, unless we experience them.
We still have a lot to learn about genetics, before we can say that we understand them.
Sara,
Yes, I suspect that Dr. Fine may be adding some of his insight to the standard Red Cross test information, because the interpretation information seems to be somewhat more extensive now, than it used to be, a few years ago.
Love,
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.
Tex - Thank you for clarifying that. I think I understand it a little better. I tried to research, but I just got more confused. But, I did read that the DQ8 gene is associated with Type 1 diabetes, so I think I am definitely going to get my children gene tested just to see if they have the DQ8 gene.
I remember feeling so bad that I thought I was dying when I was diagnosed with "fibromyalgia". I had also made a connection between my bouts of D and the pain. I remember posting on on a board asking if anyone else had made that connection, and they had. I put the fibromyalgia in quotes because I don't think it was that at all. I think it was my body screaming for the vitamins and minerals I wasn't absorbing.
Hugs,
I remember feeling so bad that I thought I was dying when I was diagnosed with "fibromyalgia". I had also made a connection between my bouts of D and the pain. I remember posting on on a board asking if anyone else had made that connection, and they had. I put the fibromyalgia in quotes because I don't think it was that at all. I think it was my body screaming for the vitamins and minerals I wasn't absorbing.
Hugs,
Denise
"Be the change you want to see in this world."
Mahatma Gandhi
"Be the change you want to see in this world."
Mahatma Gandhi
Sorry, Tex - I am sure Dr. Fine's interpretation is his own, but meant to be asking specifically about the reporting of the numbers - in my case, this part:
Serologic equivalent: HLA-DQ 2,2 (Subtype 2,2)
...based on your comment that Susanne's results (and mine) could theoretically either be 2.2 or 2.3. I am now convinced that my previous understanding of this was faulty, but haven't yet gotten my new understanding up to speed.
I will also never forget that feeling of helpnessness. The brain fog alone, but along with full-body symptoms... and I will never forget finding this forum. I wept with relief. My husband walked into the room, I was lying in bed with my laptop on its side because I was too weak to sit up for long. He gasped, "what's wrong?" (he was increasing his threats to take me to the ER) - and I said, "Honey, I found my people." I had been wondering about gluten, and had even found the Enterolab site, but wasn't sure whether it was the real deal, or how to figure it out. And of course, the 'Net is full of references that try to convince people that gluten-avoiders are totally deluded, unless they go through official channels. (Odd that no one comes out quite so vociferously against all the other crazy diets out there - sure, there's diet debunking, but none of the vituperation that's reserved for GF... why?)
Anyway - I think this is important:
In addition, among members who have the same HLA DQ subtypes, we may eventually learn which additional factors are more likely to jump-start more severe reactions OR a larger number of food sensitivities OR perhaps something else important to know. This is where our collective chattiness is so helpful, and why I can't stop reading and posting here - of course Dr. Fine is collecting data in a clean, responsible-science way (I believe he perhaps correlates the info shared in the submitting questionnaire with the genetic results, in addition to his other research?). The messy 'data' here is much harder to parse, but allows for leaps of conjecture and unexpected insights and correlations that can really help someone - either to choose to add the genetic test, for example, or to try eliminating more foods at the outset (which as you know was my choice) - and I believe more to come.
I can think of a number of other factors that could be in play, but don't want to burden this discussion with (yet more) speculation.
Thanks,
Sara
Serologic equivalent: HLA-DQ 2,2 (Subtype 2,2)
...based on your comment that Susanne's results (and mine) could theoretically either be 2.2 or 2.3. I am now convinced that my previous understanding of this was faulty, but haven't yet gotten my new understanding up to speed.
I will also never forget that feeling of helpnessness. The brain fog alone, but along with full-body symptoms... and I will never forget finding this forum. I wept with relief. My husband walked into the room, I was lying in bed with my laptop on its side because I was too weak to sit up for long. He gasped, "what's wrong?" (he was increasing his threats to take me to the ER) - and I said, "Honey, I found my people." I had been wondering about gluten, and had even found the Enterolab site, but wasn't sure whether it was the real deal, or how to figure it out. And of course, the 'Net is full of references that try to convince people that gluten-avoiders are totally deluded, unless they go through official channels. (Odd that no one comes out quite so vociferously against all the other crazy diets out there - sure, there's diet debunking, but none of the vituperation that's reserved for GF... why?)
Anyway - I think this is important:
So that sensitivity may not predict which additional foods will cause a reaction (but you can probably bet on dairy), or how many but *if* there's a reaction, it doesn't take much to kick it off. That seems right to me.When I say "heightened sensitivity", I am usually referring to an increased sensitivity, (IOW, a lowered reaction threshold), to not only gluten, but most likely to most or all foods to which a sensitivity might exist.
In addition, among members who have the same HLA DQ subtypes, we may eventually learn which additional factors are more likely to jump-start more severe reactions OR a larger number of food sensitivities OR perhaps something else important to know. This is where our collective chattiness is so helpful, and why I can't stop reading and posting here - of course Dr. Fine is collecting data in a clean, responsible-science way (I believe he perhaps correlates the info shared in the submitting questionnaire with the genetic results, in addition to his other research?). The messy 'data' here is much harder to parse, but allows for leaps of conjecture and unexpected insights and correlations that can really help someone - either to choose to add the genetic test, for example, or to try eliminating more foods at the outset (which as you know was my choice) - and I believe more to come.
I can think of a number of other factors that could be in play, but don't want to burden this discussion with (yet more) speculation.
Thanks,
Sara
Sara,
I must have been cross-eyed this morning when I went back and looked at Susanne's results, because she obviously does have a true double DQ2 arrangement, (due to the fact that she apparently has the DQ2.5 haplotype, (she has the DQB1*0201 gene, which implies that she must have the corresponding DQA1*0501 gene, and that combination constitutes a DQ2.5 subtype). When a DQB1*0202 gene coexists with a DQ2.5 combination, then the DQB1*0202 allele corresponds to a celiac gene, (rather than a non-celiac gene).
I went back and edited my post about her results, so that it makes more sense, (two of my posts back). Since you have the same genes, that means that you also have a true double DQ2 gene combination. (I think I can feel my brain fog returning, as I dwell on all these genetic terms. They're all beginning to look the same.
).
Sorry for all the confusion. I've got too many things going on, today, apparently.
Love,
Tex
I must have been cross-eyed this morning when I went back and looked at Susanne's results, because she obviously does have a true double DQ2 arrangement, (due to the fact that she apparently has the DQ2.5 haplotype, (she has the DQB1*0201 gene, which implies that she must have the corresponding DQA1*0501 gene, and that combination constitutes a DQ2.5 subtype). When a DQB1*0202 gene coexists with a DQ2.5 combination, then the DQB1*0202 allele corresponds to a celiac gene, (rather than a non-celiac gene).
I went back and edited my post about her results, so that it makes more sense, (two of my posts back). Since you have the same genes, that means that you also have a true double DQ2 gene combination. (I think I can feel my brain fog returning, as I dwell on all these genetic terms. They're all beginning to look the same.
).Sorry for all the confusion. I've got too many things going on, today, apparently.
Love,
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.
They do start to look the same after a while. I made it all worse when I first got my results by staring at the list of everyone's results quite a lot, trying to see meaning or pattern to it. Having done all that again today, I'm not even sure what my question was, or should be.
In any case, time will tell whether Susanne and I have similar (and specific) degrees of sensitivity, other non-GI symptoms in common, and/or additional food sensitivities. It's interesting how many combinations there are. I believe Susanne and I are the only two reporting this precise combo. (Susanne, based on your genetics, I'm betting you're really smart and great-looking to boot, not to mention multi-talented.)
I do think I am sensitive to even very small amounts of my trigger foods, and that first time I got glutened back in April, I almost immediately felt a return of that finger numbness that I now am sure was peripheral neuropathy. I also had elevated anti-tissue transglutaminase antibodies, though without an elevated fecal fat score. So that means some autoimmune reaction has already been going on. I think that might be linked to the possibility of greater severity/increased sensitivity we've been talking about, *whether or not* endoscopy shows villous atrophy (don't know, haven't had endoscopy). I also wonder whether certain non-GI body systems are more likely to be at risk in different genetic profiles... and other things.
Anyway - Susanne, welcome to the double-DQ2 club!
Best,
Sara
In any case, time will tell whether Susanne and I have similar (and specific) degrees of sensitivity, other non-GI symptoms in common, and/or additional food sensitivities. It's interesting how many combinations there are. I believe Susanne and I are the only two reporting this precise combo. (Susanne, based on your genetics, I'm betting you're really smart and great-looking to boot, not to mention multi-talented.)
I do think I am sensitive to even very small amounts of my trigger foods, and that first time I got glutened back in April, I almost immediately felt a return of that finger numbness that I now am sure was peripheral neuropathy. I also had elevated anti-tissue transglutaminase antibodies, though without an elevated fecal fat score. So that means some autoimmune reaction has already been going on. I think that might be linked to the possibility of greater severity/increased sensitivity we've been talking about, *whether or not* endoscopy shows villous atrophy (don't know, haven't had endoscopy). I also wonder whether certain non-GI body systems are more likely to be at risk in different genetic profiles... and other things.
Anyway - Susanne, welcome to the double-DQ2 club!
Best,
Sara
I wonder if I can claim a tired brain again tonight? Tex, I appreciate all the thought and time you've taken to explain this. I'm still pretty befuddled, but I'll try to spend some more intense time digesting it. Right now I'm busy putting up produce from my garden (that I can't eat yet, but there's always hope).
When I first found this site and realized that there were others with the same diagnosis and genetic test results, I had high hopes that we could compile a list of the genes and the corresponding intolerances. Wouldn't that make life easier?
But as time has gone on, I've come to realize that there may be a slight correspondence, but we are all individuals with our own particular issues. Polly and I share the same genes (as far as the tested half indicates), and we do have some similar intolerances, but she can eat eggs, and I can't for example. It's not a one-on one correlation. Connie (Stanz) also has the same genes, but she can eat a lot more variety. Mary Beth shares my genes, and she and I also seem to have similar problems with mast cells. I think there's something of value to be gained from doing the comparison, but probably no predictions can be made. That's the value of genetic testing, in my mind.
Once again Tex, thank you for taking time out of your extremely busy schedule to investigate and explain this.
Gloria
When I first found this site and realized that there were others with the same diagnosis and genetic test results, I had high hopes that we could compile a list of the genes and the corresponding intolerances. Wouldn't that make life easier?
But as time has gone on, I've come to realize that there may be a slight correspondence, but we are all individuals with our own particular issues. Polly and I share the same genes (as far as the tested half indicates), and we do have some similar intolerances, but she can eat eggs, and I can't for example. It's not a one-on one correlation. Connie (Stanz) also has the same genes, but she can eat a lot more variety. Mary Beth shares my genes, and she and I also seem to have similar problems with mast cells. I think there's something of value to be gained from doing the comparison, but probably no predictions can be made. That's the value of genetic testing, in my mind.
Once again Tex, thank you for taking time out of your extremely busy schedule to investigate and explain this.
Gloria
You never know what you can do until you have to do it.
Hi All,
I still need to read over all the posts because a lot has been going on and I haven't had the time.
I made the mistake of sharing my results with my daughter, who has anxiety issues and sees a therapist (She is 26). She is freaking out. We already know from past experience that she has problems with diary. She is a vegan, most of the time. She read the results and is carrying on about the fact that she might be gluten sensitive as well. I told her not to get so anxious about it, avoid dairy and watch what she eats and note any problems. Any suggestions? She doesn't have any extra money at this time to do the labwork and I don't have extra right now to pay for it for her.
I go to the GI doctor tomorrow for a followup and plan to share my enterolab results. The past week I cut it down to 1 pill a day because my supply was running out and had been doing okay except for today. Like I said a lot is going on.
My husband (will be 60 yrs. old in a few weeks) is having a lot of trouble doing his job, he is burned out, very emotional about it and the Dr. put him on tranquilizers yesterday. We have decided to put our house up for sale and I have a lot to clean out. (we have been here for 32 yrs). New Jersey has taxed us out of our house. We are paying $11,500 in real estate taxes for a small house. My daughter, as I mentioned, is freaking out about my test results and my son, who also lives on his own is having some everyday difficulty as well and I get all the phone calls and everyone is complaining to me and looking for the right answers which I don't have. That's the job of a wife and mother, right? And then there's me, I have a job interview today and I'm nervous, so I hope that's why I had D this morning.
I'm sorry if I carried on. Any suggestions concerning what my Enterolab results mean to my daughter would be appreciated.
Thanks,
Susanne
I still need to read over all the posts because a lot has been going on and I haven't had the time.
I made the mistake of sharing my results with my daughter, who has anxiety issues and sees a therapist (She is 26). She is freaking out. We already know from past experience that she has problems with diary. She is a vegan, most of the time. She read the results and is carrying on about the fact that she might be gluten sensitive as well. I told her not to get so anxious about it, avoid dairy and watch what she eats and note any problems. Any suggestions? She doesn't have any extra money at this time to do the labwork and I don't have extra right now to pay for it for her.
I go to the GI doctor tomorrow for a followup and plan to share my enterolab results. The past week I cut it down to 1 pill a day because my supply was running out and had been doing okay except for today. Like I said a lot is going on.
My husband (will be 60 yrs. old in a few weeks) is having a lot of trouble doing his job, he is burned out, very emotional about it and the Dr. put him on tranquilizers yesterday. We have decided to put our house up for sale and I have a lot to clean out. (we have been here for 32 yrs). New Jersey has taxed us out of our house. We are paying $11,500 in real estate taxes for a small house. My daughter, as I mentioned, is freaking out about my test results and my son, who also lives on his own is having some everyday difficulty as well and I get all the phone calls and everyone is complaining to me and looking for the right answers which I don't have. That's the job of a wife and mother, right? And then there's me, I have a job interview today and I'm nervous, so I hope that's why I had D this morning.
I'm sorry if I carried on. Any suggestions concerning what my Enterolab results mean to my daughter would be appreciated.
Thanks,
Susanne
Susanne,
Sorry about all the stress. I can certainly understand what you're dealing with, and it's no wonder that you're having D this morning. I hope it doesn't become a chronic issue.
As far as the effects that your genes might have on your daughter are concerned, she has a 1 in 4 chance of inheriting your celiac gene, and a 1 in 4 chance of inheriting the non-celiac gluten-sensitive gene, (but she won't inherit both of them from you - only one of them.) Remember that half your daughter's genes will come from her father, and that's an unknown, (so far, at least). If he should have a celiac gene, then your daughter's odds of inheriting a celic gene would double, likewise on any non-celiac gluten-sensitive gene. The odds of her father having a celiac gene are roughly 40%, but the odds of him having a non-celiac gluten-sensitive gene are higher.
Remember, though, that even though a high percentage of people carry these genes, only a small percentage actually develop the disease, so in the final analysis, environmental factors almost always determine whether or not we develop celiac disease or MC, (or whatever). If she stays healthy, and eats a diet that completely meets her nutritional needs, (be sure she's getting enough B-12, vitamin D, and all the other important vitamins and minerals,etc.), the odds are very high that she will never develop either celiac disease or MC. IMO, vitamin D is probably the most critical element in a prevention program. If someone becomes significantly vitamin D deficient, the odds of them developing all sorts of autoimmune disease go way up. Which diseases are the most likely threats, depends on genetics, of course, but the key to avoiding them, is to stay healthy, and keep that vitamin D level in the "safe zone", (a 25(OH)D test result level at least above 30 ng/mL).
If she wants to really improve the odds that she will never develop celiac disease or MC, she could adopt the GF diet, but it's difficult to convince most people to do that, until after they already have the disease. Reducing her intake of gluten might be helpful, in that it would probably delay the onset of symptoms, in the event that she is indeed gluten-sensitive. Personally, I've never been able to persuade someone who was at high risk, but not symptomatic, to adopt the GF diet. It takes a super salesperson to sell that idea.
Good luck with the interview,
Tex
Sorry about all the stress. I can certainly understand what you're dealing with, and it's no wonder that you're having D this morning. I hope it doesn't become a chronic issue.
As far as the effects that your genes might have on your daughter are concerned, she has a 1 in 4 chance of inheriting your celiac gene, and a 1 in 4 chance of inheriting the non-celiac gluten-sensitive gene, (but she won't inherit both of them from you - only one of them.) Remember that half your daughter's genes will come from her father, and that's an unknown, (so far, at least). If he should have a celiac gene, then your daughter's odds of inheriting a celic gene would double, likewise on any non-celiac gluten-sensitive gene. The odds of her father having a celiac gene are roughly 40%, but the odds of him having a non-celiac gluten-sensitive gene are higher.
Remember, though, that even though a high percentage of people carry these genes, only a small percentage actually develop the disease, so in the final analysis, environmental factors almost always determine whether or not we develop celiac disease or MC, (or whatever). If she stays healthy, and eats a diet that completely meets her nutritional needs, (be sure she's getting enough B-12, vitamin D, and all the other important vitamins and minerals,etc.), the odds are very high that she will never develop either celiac disease or MC. IMO, vitamin D is probably the most critical element in a prevention program. If someone becomes significantly vitamin D deficient, the odds of them developing all sorts of autoimmune disease go way up. Which diseases are the most likely threats, depends on genetics, of course, but the key to avoiding them, is to stay healthy, and keep that vitamin D level in the "safe zone", (a 25(OH)D test result level at least above 30 ng/mL).
If she wants to really improve the odds that she will never develop celiac disease or MC, she could adopt the GF diet, but it's difficult to convince most people to do that, until after they already have the disease. Reducing her intake of gluten might be helpful, in that it would probably delay the onset of symptoms, in the event that she is indeed gluten-sensitive. Personally, I've never been able to persuade someone who was at high risk, but not symptomatic, to adopt the GF diet. It takes a super salesperson to sell that idea.
Good luck with the interview,
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.
Susanne - You really have it coming at you from all directions! I hope you find some time today to just breath. As simple as it sounds, it really works for me to take a few deep breaths when I am stressing. I can empathize with you on having to clean out stuff before putting your house on the market. We just did a that. We rented a storage unit and stuck in it a lot of stuff that was cluttering up the house that we didn't want to get rid of.
I have a 24 year old daughter who is also on medication for anxiety. She has told me that she thinks she is gluten intolerant, but isn't giving up gluten. I have told her repeatedly that I wish she would try it for a couple of weeks just to see if it made a difference. She's getting married in October, so I'm going to let it go until after the wedding.
My 11 year old son also suffers from anxiety. I worry about him because he is so skinny. He's only in the 10th percentile on the weight chart. I am going to get him tested after we move. I wonder if there is a connection between anxiety and gluten intolerance?
Get everyone that is willing to help to pitch in with the clean-up. Good luck on the job interview today. Take care of yourself.
Hugs,
I have a 24 year old daughter who is also on medication for anxiety. She has told me that she thinks she is gluten intolerant, but isn't giving up gluten. I have told her repeatedly that I wish she would try it for a couple of weeks just to see if it made a difference. She's getting married in October, so I'm going to let it go until after the wedding.
My 11 year old son also suffers from anxiety. I worry about him because he is so skinny. He's only in the 10th percentile on the weight chart. I am going to get him tested after we move. I wonder if there is a connection between anxiety and gluten intolerance?
Get everyone that is willing to help to pitch in with the clean-up. Good luck on the job interview today. Take care of yourself.
Hugs,
Denise
"Be the change you want to see in this world."
Mahatma Gandhi
"Be the change you want to see in this world."
Mahatma Gandhi