Intro and Questions: New in Michigan

[Guest guest]

Hello!

I am new to this group. And glad to be here! I have a preliminary diagnosis of CD based on a biopsy (the appearance of the duodenum is “very suspicious” for CD, with flattened mucosa and inflammation, but the lab results beyond that are not back yet). It has been a frustrating and difficult road to get even the possible diagnosis. I have been extremely sick for nearly 20 years, and have had all sorts of wrong diagnoses. In the last 5 years, I’ve had 3 blood tests that looked for CD (and other things), but none of the docs had said I needed any exposure to gluten before the tests, even after I carefully told them that my diet consisted almost exclusively of of cheese, rice, and fruit, so the tests always came back negative. (Duh!!) And I did not know better since I had been assuming that the negative blood test meant no CD, so I just discounted CD as a possibility all along – never read up on it to learn that I needed some pre-test exposure. Even this last doctor (a faculty member at the University!) did not tell me, and that blood test was negative as well. Thank goodness for the biopsy...!

So, anyway, I am jumping in here asap, even though the diagnosis is not firm yet. One question I have is this: I react to a LOT more than gluten, and not all of that can be explained by cross contamination (though I think that some of it can). If CD really has been my problem for 20 years, what sort of damage can I expect has been done to my intestines? Would that damage explain why I react to other stuff as well? Has anyone here had this untreated for a really long time with lots of damage, and, if so, how well have you been recovering once you knew what to do correctly?

Thanks for listening (maybe I should have put “vent” in the subject line, too)! This looks like a well-run and very informative group!

Lori

[Guest guest]

Hi Lori,

I don't have the answers to your questions about long term damage but wanted to let you know that there are a few of us on this list from Michigan. If you need some help, just ask - I think we cover a good portion of the state so hopefully we have answers!

Intro and Questions: New in Michigan

Hello!I am new to this group. And glad to be here! I have a preliminary diagnosis of CD based on a biopsy (the appearance of the duodenum is “very suspicious” for CD, with flattened mucosa and inflammation, but the lab results beyond that are not back yet). It has been a frustrating and difficult road to get even the possible diagnosis. I have been extremely sick for nearly 20 years, and have had all sorts of wrong diagnoses. In the last 5 years, I’ve had 3 blood tests that looked for CD (and other things), but none of the docs had said I needed any exposure to gluten before the tests, even after I carefully told them that my diet consisted almost exclusively of of cheese, rice, and fruit, so the tests always came back negative. (Duh!!) And I did not know better since I had been assuming that the negative blood test meant no CD, so I just discounted CD as a possibility all along – never read up on it to learn that I needed some pre-test exposure. Even this last doctor (a faculty member at the University!) did not tell me, and that blood test was negative as well. Thank goodness for the biopsy...!So, anyway, I am jumping in here asap, even though the diagnosis is not firm yet. One question I have is this: I react to a LOT more than gluten, and not all of that can be explained by cross contamination (though I think that some of it can). If CD really has been my problem for 20 years, what sort of damage can I expect has been done to my intestines? Would that damage explain why I react to other stuff as well? Has anyone here had this untreated for a really long time with lots of damage, and, if so, how well have you been recovering once you knew what to do correctly?Thanks for listening (maybe I should have put “vent” in the subject line, too)! This looks like a well-run and very informative group!Lori

[Guest guest]

Hi, , and thank you for the offer! I am a bit lukewarm about my new doctor – I’m waiting to see what he has to say about the biopsies to determine what I really think. So, I may be asking for advice about good doctors!

Thanks again,

Lori

Hi Lori,

I don't have the answers to your questions about long term damage but wanted to let you know that there are a few of us on this list from Michigan. If you need some help, just ask - I think we cover a good portion of the state so hopefully we have answers!

Intro and Questions: New in Michigan

Hello!

I am new to this group. And glad to be here! I have a preliminary diagnosis of CD based on a biopsy (the appearance of the duodenum is " very suspicious " for CD, with flattened mucosa and inflammation, but the lab results beyond that are not back yet). It has been a frustrating and difficult road to get even the possible diagnosis. I have been extremely sick for nearly 20 years, and have had all sorts of wrong diagnoses. In the last 5 years, I've had 3 blood tests that looked for CD (and other things), but none of the docs had said I needed any exposure to gluten before the tests, even after I carefully told them that my diet consisted almost exclusively of of cheese, rice, and fruit, so the tests always came back negative. (Duh!!) And I did not know better since I had been assuming that the negative blood test meant no CD, so I just discounted CD as a possibility all along - never read up on it to learn that I needed some pre-test exposure. Even this last doctor (a faculty member at the University!) did not tell me, and that blood test was negative as well. Thank goodness for the biopsy...!

So, anyway, I am jumping in here asap, even though the diagnosis is not firm yet. One question I have is this: I react to a LOT more than gluten, and not all of that can be explained by cross contamination (though I think that some of it can). If CD really has been my problem for 20 years, what sort of damage can I expect has been done to my intestines? Would that damage explain why I react to other stuff as well? Has anyone here had this untreated for a really long time with lots of damage, and, if so, how well have you been recovering once you knew what to do correctly?

Thanks for listening (maybe I should have put " vent " in the subject line, too)! This looks like a well-run and very informative group!

Lori

[Guest guest]

Hi, , and thank you for the offer! I am a bit lukewarm about my new doctor – I’m waiting to see what he has to say about the biopsies to determine what I really think. So, I may be asking for advice about good doctors!

Thanks again,

Lori

Hi Lori,

I don't have the answers to your questions about long term damage but wanted to let you know that there are a few of us on this list from Michigan. If you need some help, just ask - I think we cover a good portion of the state so hopefully we have answers!

Intro and Questions: New in Michigan

Hello!

I am new to this group. And glad to be here! I have a preliminary diagnosis of CD based on a biopsy (the appearance of the duodenum is " very suspicious " for CD, with flattened mucosa and inflammation, but the lab results beyond that are not back yet). It has been a frustrating and difficult road to get even the possible diagnosis. I have been extremely sick for nearly 20 years, and have had all sorts of wrong diagnoses. In the last 5 years, I've had 3 blood tests that looked for CD (and other things), but none of the docs had said I needed any exposure to gluten before the tests, even after I carefully told them that my diet consisted almost exclusively of of cheese, rice, and fruit, so the tests always came back negative. (Duh!!) And I did not know better since I had been assuming that the negative blood test meant no CD, so I just discounted CD as a possibility all along - never read up on it to learn that I needed some pre-test exposure. Even this last doctor (a faculty member at the University!) did not tell me, and that blood test was negative as well. Thank goodness for the biopsy...!

So, anyway, I am jumping in here asap, even though the diagnosis is not firm yet. One question I have is this: I react to a LOT more than gluten, and not all of that can be explained by cross contamination (though I think that some of it can). If CD really has been my problem for 20 years, what sort of damage can I expect has been done to my intestines? Would that damage explain why I react to other stuff as well? Has anyone here had this untreated for a really long time with lots of damage, and, if so, how well have you been recovering once you knew what to do correctly?

Thanks for listening (maybe I should have put " vent " in the subject line, too)! This looks like a well-run and very informative group!

Lori

[Guest guest]

Hi, , and thank you for the offer! I am a bit lukewarm about my new doctor – I’m waiting to see what he has to say about the biopsies to determine what I really think. So, I may be asking for advice about good doctors!

Thanks again,

Lori

Hi Lori,

I don't have the answers to your questions about long term damage but wanted to let you know that there are a few of us on this list from Michigan. If you need some help, just ask - I think we cover a good portion of the state so hopefully we have answers!

Intro and Questions: New in Michigan

Hello!

I am new to this group. And glad to be here! I have a preliminary diagnosis of CD based on a biopsy (the appearance of the duodenum is " very suspicious " for CD, with flattened mucosa and inflammation, but the lab results beyond that are not back yet). It has been a frustrating and difficult road to get even the possible diagnosis. I have been extremely sick for nearly 20 years, and have had all sorts of wrong diagnoses. In the last 5 years, I've had 3 blood tests that looked for CD (and other things), but none of the docs had said I needed any exposure to gluten before the tests, even after I carefully told them that my diet consisted almost exclusively of of cheese, rice, and fruit, so the tests always came back negative. (Duh!!) And I did not know better since I had been assuming that the negative blood test meant no CD, so I just discounted CD as a possibility all along - never read up on it to learn that I needed some pre-test exposure. Even this last doctor (a faculty member at the University!) did not tell me, and that blood test was negative as well. Thank goodness for the biopsy...!

So, anyway, I am jumping in here asap, even though the diagnosis is not firm yet. One question I have is this: I react to a LOT more than gluten, and not all of that can be explained by cross contamination (though I think that some of it can). If CD really has been my problem for 20 years, what sort of damage can I expect has been done to my intestines? Would that damage explain why I react to other stuff as well? Has anyone here had this untreated for a really long time with lots of damage, and, if so, how well have you been recovering once you knew what to do correctly?

Thanks for listening (maybe I should have put " vent " in the subject line, too)! This looks like a well-run and very informative group!

Lori

[Guest guest]

Yes, hi, Lori. Please tell us where you are in MI &, hopefully,

someone can recommend places close to you to find your gluten free

groceries. Go ahead & vent--people do it all the time. Getting better

by eating the right foods will help alot!

Have a good evening, Laurel--mom to tiny silly yak, Gabby 3y 9.5m

>

> Hi Lori,

> I don't have the answers to your questions about long term damage

but wanted to let you know that there are a few of us on this list

from Michigan. If you need some help, just ask - I think we cover a

good portion of the state so hopefully we have answers!

>

[Guest guest]

Yes, hi, Lori. Please tell us where you are in MI &, hopefully,

someone can recommend places close to you to find your gluten free

groceries. Go ahead & vent--people do it all the time. Getting better

by eating the right foods will help alot!

Have a good evening, Laurel--mom to tiny silly yak, Gabby 3y 9.5m

>

> Hi Lori,

> I don't have the answers to your questions about long term damage

but wanted to let you know that there are a few of us on this list

from Michigan. If you need some help, just ask - I think we cover a

good portion of the state so hopefully we have answers!

>

[Guest guest]

Yes, hi, Lori. Please tell us where you are in MI &, hopefully,

someone can recommend places close to you to find your gluten free

groceries. Go ahead & vent--people do it all the time. Getting better

by eating the right foods will help alot!

Have a good evening, Laurel--mom to tiny silly yak, Gabby 3y 9.5m

>

> Hi Lori,

> I don't have the answers to your questions about long term damage

but wanted to let you know that there are a few of us on this list

from Michigan. If you need some help, just ask - I think we cover a

good portion of the state so hopefully we have answers!

>

[Guest guest]

Hi, Laurel! Thanks for the offer of ideas. As it turns out, my diet is much stricter than gluten-free: at this point I am reacting to everything except rice and some cheeses. As an experiment after getting the preliminary CD diagnosis, I tried a good gluten-free cookie a couple of days ago that had a sorghum flour base (something I haven’t had in years). Bad move – terrible reaction. So, either the CD diagnosis will be wrong, or incomplete, or I’ve done enough damage to my intestines to be reactive to more than gluten. I’m just getting used to the idea that it really might be rice and cheese for a year (or two) to heal up. Will also be pressing the Dr. to look for other autoimmune diseases if the CD diagnosis pans out. Given the breadth of my sensitivities, I thought I might have an eosinophilic disorder, but he kind of dismissed that as “very rare” (as if being only able to eat rice and cheese isn’t a bit rare...! Ha!) He said he’d be checking for that in the biopsies, too, though. So, whenever I get a firm diagnosis, I’ll let folks know. Does anyone know if CD and eosinophilic disorders tend to co-occur?

Thanks,

Lori

Yes, hi, Lori. Please tell us where you are in MI & , hopefully,

someone can recommend places close to you to find your gluten free

groceries. Go ahead & vent--people do it all the time. Getting better

by eating the right foods will help alot!

Have a good evening, Laurel--mom to tiny silly yak, Gabby 3y 9.5m

[Guest guest]

>

at this point I am reacting to everything

> except rice and some cheeses.

YIKES!!!! Hope you do well...get LOTS better, QUICKLY!!!!! Glad we only

have to watch for " major frontal assults " ...as in Gabby eating 3

cookies at the gym child care! She doesn't seem to be bothered by minor

(or even semi-major) cross-contamination. That's why I'm thinking she

has gluten intolerance...NOT actual celiac...yet!

Hugs & prayers! Laurel