Re: Molly's colonoscopy

[Guest guest]

If the colonoscopy biopsies come back with " microscopic colitis " ,

" lymphocytic colitis " , or " collagenous colitis " , know that the

gluten free diet works wonders with those problems, too.

My doc DID find LC on examination of the colonoscopy biopsies. But

to this date, no one has seen signs of celiac on my endoscopy.

Only transglutaminase has diagnosed celiac for me.

So.... You're possibly still in the right place for Molly.

I'm sorry she's feeling so poorly. I'm glad the GF diet has helped

her feel somewhat better.

If it turns out to be microscopic colitis then:

- there are medications that can stem the diarrhea and help her

heal. She may be able to get off them once healed. Or maybe not.

Some of my GI doc's LC patients can't get off the meds. It's not

the end of the world.

- She'll have to avoid some additional foods and medicines, and

perhaps limit others.

- the GF diet is KEY.

http://www.merck.com/mmhe/sec09/ch126/ch126d.html

Microscopic colitis is one of those things where the naked eye

can't see the signs of it. It only can be detected by looking

at biopsy slides. (Hence the term " microscopic " . It doesn't mean

insignificant! Just means " can't see it without a microscope " .)

I had a sigmoidoscopy a few years before the colonoscopy, and nothing

was detected at that time. It was only doing a full colonoscopy

and taking multiple biopsy slides, and having them examined under

a microscope that revealed the lymphocytic colits.

If it turns out to be Chron's, there's help for that, too.

I think Chron's is usually visible to the naked eye, though. (On

colonoscopy, that is.)

http://www.merck.com/mmhe/sec09/ch126/ch126b.html

Ulcerative colitis can give bloody D too:

http://www.merck.com/mmhe/sec09/ch126/ch126c.html

Again, that's probably patently visible on the colonoscopy.

I hope you have a solid answer very soon so you can move forward

to good health!!!!

e-HUGS!

Esther in RI

>

> I wanted to update everyone about my daughter Molly's colonoscopy

> that was done today. She is 17 and for those of you who weren't

> aware, we've gone through the ringer with her. In a nutshell, she's

> been very sick for about 8 months and by June appeared as if she

> were dying. We took her to our family doctor who suspected celiac

> almost right away (thank God for her). She had her go gluten free

> for 3 weeks and Molly was better but was still having diarrhea,

> blood in stools, abdominal pain, etc...so we went to the Gi who

> thought it was anything but celiac. did endoscopy and it was fine,

> did blood work and the test for celiac came back normal, but the

> gene testing came back with DQ2 and DQ6--one for the celiac and one

> for gluten sensitivity. Doc said she seemed like she had celiac

> because she responded to the diet but wanted to do a colonoscopy to

> rule out crohns. That test was today and to the doc's naked eye

> everything appeared normal, she did take 15 biopsies and will have

> the results in a week. But she said, she is 98% sure that all of her

> problems are due to celiac disease and possibly some other food

> allergies--we are taking her to an allergist on Sept 18. She is

> going to write a letter that confirms the diagnosis so we can use it

> to hopefully get her dad to pay half her medical expenses--so that

> is good news.anyway, I appreciate all of the support I have been

> getting from this group Thanks so much and thanks for listening to

> this whole litany.

>

[Guest guest]

,

You're a good mom! Kudos to you for getting your daughter taken care of.

That's GREAT

that the doctor went straight to CD. I hope Molly is doing well.

:-) Cheyenne

[Guest guest]

Thanks for all the information, Esther! I appreciate it and will let you know what the biopsies reveal when we get them back.

A MahoneyWrite 2 the PointJournalist

[Guest guest]

Thanks for all the information, Esther! I appreciate it and will let you know what the biopsies reveal when we get them back.

A MahoneyWrite 2 the PointJournalist

[Guest guest]

Thanks Cheyenne,

I appreciate you sweet comments! Molly is a bit tired and crampy today from the colonoscopy, but is feeling better.

A MahoneyWrite 2 the PointJournalist

[Guest guest]

Thanks Cheyenne,

I appreciate you sweet comments! Molly is a bit tired and crampy today from the colonoscopy, but is feeling better.

A MahoneyWrite 2 the PointJournalist

[Guest guest]

Thanks Cheyenne,

I appreciate you sweet comments! Molly is a bit tired and crampy today from the colonoscopy, but is feeling better.

A MahoneyWrite 2 the PointJournalist

[Guest guest]

>

> I wanted to update everyone about my daughter Molly's colonoscopy

> that was done today. She is 17 and for those of you who weren't

> aware, we've gone through the ringer with her. In a nutshell, she's

> been very sick for about 8 months and by June appeared as if she

> were dying. We took her to our family doctor who suspected celiac

> almost right away (thank God for her). She had her go gluten free

> for 3 weeks and Molly was better but was still having diarrhea,

> blood in stools, abdominal pain, etc...so we went to the Gi who

> thought it was anything but celiac. did endoscopy and it was fine,

> did blood work and the test for celiac came back normal, but the

> gene testing came back with DQ2 and DQ6

DQ2 = DQ2.5 & DQ2.2 & DQ2.3

DQA1*0501:DQB1*0201 (~80% of celiacs have this haplotype)

(Most DQ2 have DQ2.5, ancestry is typically Irish, Scandinavia,

ish, Wales, Danish, Sardinian, N. Spain, SW france, W. France

N.W. France, Switzerland, Croatia, Slovenia, Serbia, Russia,)

There are two nodal centers in Europe, Sardinia and Circum Irish

Sea. Sardinian DQ2 is typically DQ2.5, Irish is split DQ2.2/DQ2.5

or

DQA1*0201:DQB1*0202 (<5% have this haplotype, it must

be found with DQ7(3)[DQ7.55]) (iberia. S france, italy, middle east

central asia as far as korea and siberia, india)

or rarely

There is also a rare DQA1*03:DQB1*0202 which is found in iberia

and africa.

For this reason I like the DQA1* allele typing if they do DQ

serotyping of the B1 allele.

DQ6 = DQ6.2 & DQ6.4 & DQ6.3

DQA1*0102:0602 No relationship to CD

DQA1*0102:0604 No relationship to CD

DQA1*0103:0603 Negative associated with many autoimmune diseases.

(Although negative relationship with CD is unknown)

rare*06 haplotypes.

DQA1*0102:0605 No relationship to CD (african trace s. europe)

DQA1*0103:0602 Rare scattered, found in asia slightly more often

DQA1*0102:0603 Rare scattered.

[Guest guest]

Very interesting facts! Where did you learn this stuff? It was interesting to see that in that report, it mentioned Irish or Scandinavian descent for DQ2 genetic markers. My daughter is of Irish, Finnish and Norweigan descent. It is all beginning to make sense

Thank you,

A MahoneyWrite 2 the PointJournalist

[Guest guest]

,

I just want to make a note of caution to you in

regards to the doctor's note for your daughter

diagnosing her as celiac or gluten sensitivity or

whatever he'll call it. Of course, there are many

pros/cons to the idea, but keep in mind her need for

future health insurance. As a young person (28), I

just applied for individual health insurance (meaning,

not through my employer). With the CD diagnosis, I

was able to get health insurance from one company, but

only at the highest possible rate, meaning that I was

in the highest " risk " group. They told me to ask

again if I haven't been " treated " (i.e. been to a doc)

for it in >6 mos and, perhaps, my risk would decrease.

Just my 2 cents worth... but perhaps, in some

respects, she's better off NOT having a diagnosis.

(Cville, VA)

__________________________________________________

[Guest guest]

,

I just want to make a note of caution to you in

regards to the doctor's note for your daughter

diagnosing her as celiac or gluten sensitivity or

whatever he'll call it. Of course, there are many

pros/cons to the idea, but keep in mind her need for

future health insurance. As a young person (28), I

just applied for individual health insurance (meaning,

not through my employer). With the CD diagnosis, I

was able to get health insurance from one company, but

only at the highest possible rate, meaning that I was

in the highest " risk " group. They told me to ask

again if I haven't been " treated " (i.e. been to a doc)

for it in >6 mos and, perhaps, my risk would decrease.

Just my 2 cents worth... but perhaps, in some

respects, she's better off NOT having a diagnosis.

(Cville, VA)

__________________________________________________

[Guest guest]

,

I just want to make a note of caution to you in

regards to the doctor's note for your daughter

diagnosing her as celiac or gluten sensitivity or

whatever he'll call it. Of course, there are many

pros/cons to the idea, but keep in mind her need for

future health insurance. As a young person (28), I

just applied for individual health insurance (meaning,

not through my employer). With the CD diagnosis, I

was able to get health insurance from one company, but

only at the highest possible rate, meaning that I was

in the highest " risk " group. They told me to ask

again if I haven't been " treated " (i.e. been to a doc)

for it in >6 mos and, perhaps, my risk would decrease.

Just my 2 cents worth... but perhaps, in some

respects, she's better off NOT having a diagnosis.

(Cville, VA)

__________________________________________________

[Guest guest]

Thanks ,

Boy that sort of thing makes me furious for you--one of the things that President Clinton did that was beneficial was to implement the change in health insurance to ensure that no one could be denied insurance because of a pre-existing condition--I guess you weren't denied but it makes me so mad that you are charged at a much higher rate when, if you follow the diet, you are only at risk of getting better!

One reason I did want to get the diagnosis was because it is recognized as a legitimate disability and therefore opens doors for governmental assistance, if needed. It also will give us an avenue and her an avenue to deduct the more expensive food items on our income taxes.

I hadn't thought about the long term ramifications as to purchasing individual health insurance and you gave me something to think about.

A MahoneyWrite 2 the PointJournalist

[Guest guest]

Thanks ,

Boy that sort of thing makes me furious for you--one of the things that President Clinton did that was beneficial was to implement the change in health insurance to ensure that no one could be denied insurance because of a pre-existing condition--I guess you weren't denied but it makes me so mad that you are charged at a much higher rate when, if you follow the diet, you are only at risk of getting better!

One reason I did want to get the diagnosis was because it is recognized as a legitimate disability and therefore opens doors for governmental assistance, if needed. It also will give us an avenue and her an avenue to deduct the more expensive food items on our income taxes.

I hadn't thought about the long term ramifications as to purchasing individual health insurance and you gave me something to think about.

A MahoneyWrite 2 the PointJournalist

[Guest guest]

Thanks ,

Boy that sort of thing makes me furious for you--one of the things that President Clinton did that was beneficial was to implement the change in health insurance to ensure that no one could be denied insurance because of a pre-existing condition--I guess you weren't denied but it makes me so mad that you are charged at a much higher rate when, if you follow the diet, you are only at risk of getting better!

One reason I did want to get the diagnosis was because it is recognized as a legitimate disability and therefore opens doors for governmental assistance, if needed. It also will give us an avenue and her an avenue to deduct the more expensive food items on our income taxes.

I hadn't thought about the long term ramifications as to purchasing individual health insurance and you gave me something to think about.

A MahoneyWrite 2 the PointJournalist

[Guest guest]

Since I'm also self-insured, I don't dare go to the doc for this

either. I can barely afford the monthly rates as they are, even with

a clean bill of health & a sky-high deductible...but at least I have

it - which I didn't for a long time....

>

> ,

>

> I just want to make a note of caution to you in

> regards to the doctor's note for your daughter

> diagnosing her as celiac or gluten sensitivity or

> whatever he'll call it. Of course, there are many

> pros/cons to the idea, but keep in mind her need for

> future health insurance. As a young person (28), I

> just applied for individual health insurance (meaning,

> not through my employer). With the CD diagnosis, I

> was able to get health insurance from one company, but

> only at the highest possible rate, meaning that I was

> in the highest " risk " group. They told me to ask

> again if I haven't been " treated " (i.e. been to a doc)

> for it in >6 mos and, perhaps, my risk would decrease.

>

>

> Just my 2 cents worth... but perhaps, in some

> respects, she's better off NOT having a diagnosis.

>

>

> (Cville, VA)

>

> __________________________________________________

>