Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

theprincess

Mouse, Candiankaren, Mtndog I Need Your Help

Recommended Posts

Mouse, my mom said that you found out something about tuberculosis and celiac?? Could you please forward that info to me, please?

Could you please spell out the three things that I should be asking my GI doc? How long should I wait before my biopsies should be done? I was supposed to hear back by today but its already two and I'm nervous.

Karen, if I'm celiac make Mom share her cake mixes with me.

Metta, if thats the case too make Mom share her Tinkyava pasta with me.

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Is your mother okay? I emailed her but never heard back, I have been worried about her. My email right now is acting stupid and it should be fixed this afternoon.

Lynne: tell your daughter where to find the cake mixes or tell her how to make them...lol


Rusla

Asthma-1969

wheat/ dairy allergies, lactose/casein intolerance-1980

Multiple food, environmental allergies

allergic to all antibiotics except sulpha

Rheumitoid arthritis,Migraine headaches,TMJ- 1975

fibromyalgia-1995

egg allergy-1997

msg allergy,gall bladder surgery-1972

Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease

gluten-free totally since Nov. 28, 2005

Hashimoto's Hypothyroidism- 2005

Pernicious Anemia 1999 (still anemic on and off.)

Osteoporosis Aug. 2006

Creative people need maids.

Share this post


Link to post
Share on other sites

Ashley, hun, if you end up with celiac, I will send you down a care package of every single cake mix you can think of!

Is your mom's computer still on the blink? Hope she gets it fixed soon - I miss her here!!!!

Did you have your bloodwork done? Any results yet?

Hugs and welcome!

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

Share this post


Link to post
Share on other sites

The screen on my mom's computer is broken so she is disconnected from her celiac world. lol. She's doing good- recently got good news about her fatty liver (that is such a funny term) Thanks for the love.

No news on my bloodwork (I honestly don't remember what I had done...the Versed hit me kind of hard)

Share this post


Link to post
Share on other sites
Ashley, hun, if you end up with celiac, I will send you down a care package of every single cake mix you can think of!

Is your mom's computer still on the blink? Hope she gets it fixed soon - I miss her here!!!!

Did you have your bloodwork done? Any results yet?

Hugs and welcome!

Karen

Karen, what cake mixes are you holding out on that we can get here in Canada?


Rusla

Asthma-1969

wheat/ dairy allergies, lactose/casein intolerance-1980

Multiple food, environmental allergies

allergic to all antibiotics except sulpha

Rheumitoid arthritis,Migraine headaches,TMJ- 1975

fibromyalgia-1995

egg allergy-1997

msg allergy,gall bladder surgery-1972

Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease

gluten-free totally since Nov. 28, 2005

Hashimoto's Hypothyroidism- 2005

Pernicious Anemia 1999 (still anemic on and off.)

Osteoporosis Aug. 2006

Creative people need maids.

Share this post


Link to post
Share on other sites

Welcome!

Check the "Associated Disorders" page for links to the information about Tuberculosis. It appears that folks with celiac have about a 4 times higher risk of getting TB, evidently due to lower levels of vitamin D (because of malabsorption).

When you ask how long you should wait before getting a biopsy, what exactly do you mean? Biopsy on your intestines? And just wait in general, or wait after something specific? I don't think that there's any reason to wait (in between having bloodwork and a biopsy) except that often the GI docs are busy and can't get you in right away :lol: . You just need to be eating wheat for the biopsy to be accurate, so if your bloodwork is positive, it's better to get a biopsy ASAP (if you are planning to have one done) so that you can confirm the diagnosis and go off of gluten if you need to.

And, the wonderful thing about Moms is that they almost always are willing to share . . . even when we don't think we deserve it! :lol: Somehow my children almost always end up eating about 1/2 of my "These are special treats just for mom that she bought with her own money and she doesn't want to share them with you right now" things . . .

Share this post


Link to post
Share on other sites

Hi Ashley--nice to "meet you"! Thanks for letting us know your mom is ok--I was wondering where she's been. :)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

Share this post


Link to post
Share on other sites

Actually I had the endoscopy/biopsies last Wednesday I just want to know when to call for results.

I'm glad for things that moms do like that...my mom has always been willing to share but mostly I think she has lost her sense of what tastes good. I am going into this non-gluten thing kicking and screaming.

Share this post


Link to post
Share on other sites

:lol::lol::lol:

Karen -

It's really not that bad! I don't have celiac, I just cook like one (for family members), and I refuse to cook anything that I am unwilling to eat. Admittedly, there are a lot of gluten-free foods out there that are gritty and just blechy in general . . . but not all of them are like that! In fact, during the last 5 years there has been an explosion in the realm of gluten free products and recipes. I make gluten-free cookies that I feed to the entire neighborhood, and no one ever knows, or cares. We took some peach raspberry cobbler over to a neighbor's house one night, and they LOVED it - even though (or perhaps because???) it was gluten free. There are some things that are still tough to duplicate exactly . . . but for the most part, I think you'll find that the fear of eating gluten free is much worse than the experience! :lol::lol:

Besides that, you've got a mom who's already been through a lot of different gluten free products, so she'll be able to give you a list of the "gluten free foods to avoid".

Are you in the Lexington/Louisville area, too? I've got an aunt there who may have some waffle mix she'd be willing to share . .. I'll have to call her and check. She buys it because her family (none of whom have celiac) say they taste so much better than "regular" waffles. So, really, this won't be as bad as you're afraid it will be!

Share this post


Link to post
Share on other sites

LOL - thats true. It seems to me most of the talk of gluten free foods is about desserts. I know my mom is always eating her brownies and such. For her mother's day present my husband and I got her a big basket of foods that are gluten free and it wasn't so hard (just expensive!) because I love to shop at Whole Foods.

I do live in Lexington. I'm supposed to be going to school here but I'm out for the rest of the semester. :(

Share this post


Link to post
Share on other sites

Oooooh, Rusla,

The absolute best!

http://www.elpeto.com/cakemixes.html

Hugs.

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

Share this post


Link to post
Share on other sites

I think the reason we focus so much on desserts is because we feel so deprived. We feel like we NEED to have a replacement for all those things that we probably wouldn't be eating all the time if we weren't gluten free. I know my mom would walk through a grocery store and then buy and eat a Snickers, just becase she "could". So this diet can end up being a very unhealthy one. On the other hand, though, there are lots of perfectly "normal" foods that are completely gluten free . . . you can eat fruits, veggies, meats, other grains (mmm, popcorn!), even fats .. . sounds like a nice food pyramid to me! It's just the breads/pastas that are on the no-no list . .. and even those have pretty good replacements (including the coveted Tinkyada pasta :lol:). Of course, there are also not-so-good replacements out there . . . and it is certainly a less convenient way to eat. BUT . .. I've recently been thinking about all those pioneer women. . . my goodness, not only did they have to cook everything from scratch, they had to do it over a wood burning stove ... even in the middle of the summer! And they had to grow it all before they ate it! This celiac diet thing isn't nearly as bad as THAT would be! :lol::lol:

Share this post


Link to post
Share on other sites

Welcome Ashley,

I don't have anything to add really, just wanted to say HI!

I think others have posted about getting their biopsy results in a weeks time.

I've been wondering where your mom went....now I know. Tell her we miss her.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

Share this post


Link to post
Share on other sites

The waiting is the hard part. Try to enjoy choir practice and try again tomorrow if you don't hear back.

I called to find out my b12 numbers at least a couple weeks ago. Haven't heard back. I had gotten something in the mail that they were normal....just wanted numbers since so many have posted about that on here.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

Share this post


Link to post
Share on other sites

Welcome Ashley to the forum. I will definately send you the Tinkiyada pasta if you have Celiac.

As far as what to ask the doctor. I just got off the phone to your Mom and I agree that you need to ask about what the levels were on the 3 antibody tests.

Now to my wonderful opinion on all of the tests. I tested positive and only slightly on the one test my doctor did. He did not know to do the series of 5 tests. But, when I got tested, I had been dehydrated for nine days with no food and just starting to keep pedia-lite in me. I also hardly ate at all the month prior to the test. So even a week without gluten can change the numbers. He diagnosed me as a Celiac on the one blood test only. He also felt that I was way to ill to have the biopsy done.

Now this is what is now out there for test results. If you have even a slightly above normal blood test then you have Celiac. You CANNOT have a false positive, but you can have a false negative.

The biopsies should come from 8 to 10 different areas and not 4 like your GI did. The biospy can only prove you have Celiac, but it CANNOT disprove it. This is what the experts are now saying.

Many of the experts are now also saying that if the gluten free diet works then that is also a diagnostic tool and it is called gluten intolerance.

This is also what I tell most newbies to Celiac Disease or Gluten Intolerance - that no matter what the tests results say, it is up to them what they decide to do. If they have been that ill to get tested, then it certainly does not hurt to try the gluten-free diet to see how you feel. I only wish I had had the option years ago to try this diet, before all the damage got done.

Enjoy your chior group. Your Mom said that you had two sets of second grade twins in the group. How fun for you.

Hugs to you,

Metta


"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004

Allergies - corn, soy, casein, egg whites and wheat

Morphia Scleroderma

Osteoarthritis

Hypothyroid and Hperthyroid

Essential Tremors

Asthma

Migraines

Fibromyalgia - diag. in 1978 when they called it Fibrositis

PAD Peripheral Artery Disease

Angina and Atrial Fibrillation

Gluten Ataxia

Vitiligo

Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.

Ocular Myastenia Gravis

Share this post


Link to post
Share on other sites

Thanks, Metta. All that info was great!

Actually the doc took 9 biops. total. I am lucky that the chief of the GI department at UK did the testing b/c apparently he is a celiac expert. I didn't get the results today which means I get one more day of eating gluten, I bought a Twix after choir just to celebrate.

Actually I have THREE sets of twin boys in my choir. 1st and 2nd graders. There are 14 boys and 3 girls. They keep me on my toes but I love each and every one of them. How lucky I am to have boys who want to sing!

Share this post


Link to post
Share on other sites

I hope they are not identical twins - he he. I agree that it is great that you have boys that want to sing. Maybe they will grow up to be able to carry a tune in the shower.

Do you have time to run out to PF Changs and eat all their gluten filled appetisers? I so miss those. I don't miss the twinkie but miss those.

I am glad that you had such a good GI as that is half the battle of getting a proper diagnosis.

Please let us know what the doctor says. We all care.


"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004

Allergies - corn, soy, casein, egg whites and wheat

Morphia Scleroderma

Osteoarthritis

Hypothyroid and Hperthyroid

Essential Tremors

Asthma

Migraines

Fibromyalgia - diag. in 1978 when they called it Fibrositis

PAD Peripheral Artery Disease

Angina and Atrial Fibrillation

Gluten Ataxia

Vitiligo

Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.

Ocular Myastenia Gravis

Share this post


Link to post
Share on other sites
Oooooh, Rusla,

The absolute best!

http://www.elpeto.com/cakemixes.html

Hugs.

Karen

Are these good and moist? Will they make me gain 1000 more pounds?

Hugs,

Rusla


Rusla

Asthma-1969

wheat/ dairy allergies, lactose/casein intolerance-1980

Multiple food, environmental allergies

allergic to all antibiotics except sulpha

Rheumitoid arthritis,Migraine headaches,TMJ- 1975

fibromyalgia-1995

egg allergy-1997

msg allergy,gall bladder surgery-1972

Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease

gluten-free totally since Nov. 28, 2005

Hashimoto's Hypothyroidism- 2005

Pernicious Anemia 1999 (still anemic on and off.)

Osteoporosis Aug. 2006

Creative people need maids.

Share this post


Link to post
Share on other sites

Moist as the grass in Ireland on a misty day! (You have to have walked on the grass in Ireland on a misty day to really understand that one, I guess........ :P It was like walking on soaking wet sponges...... :D )


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

Share this post


Link to post
Share on other sites

Ashley, welcome to the board. Tell your mom to hurry and get a new monitor she is missed. I hope you don't have this but if you do then you can hang with us and you can hang with us anyway.

Karen, I don't want it that moist. I see you avoided the 1000 pounds issue which means yes.


Rusla

Asthma-1969

wheat/ dairy allergies, lactose/casein intolerance-1980

Multiple food, environmental allergies

allergic to all antibiotics except sulpha

Rheumitoid arthritis,Migraine headaches,TMJ- 1975

fibromyalgia-1995

egg allergy-1997

msg allergy,gall bladder surgery-1972

Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease

gluten-free totally since Nov. 28, 2005

Hashimoto's Hypothyroidism- 2005

Pernicious Anemia 1999 (still anemic on and off.)

Osteoporosis Aug. 2006

Creative people need maids.

Share this post


Link to post
Share on other sites
Ashley, welcome to the board. Tell your mom to hurry and get a new monitor she is missed. I hope you don't have this but if you do then you can hang with us and you can hang with us anyway.

Karen, I don't want it that moist. I see you avoided the 1000 pounds issue which means yes.

Well, the 1000 "more" pounds had me stumped..... If you are implying that you already are 1000 lbs, then I would have to say you have totally lost your marbles!!!! Unless all those children you have been eating lately has packed on those pounds!!!! :lol:


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

Share this post


Link to post
Share on other sites

Thanks for the welcome everyone! I hope that the only reason I'm connected to this board is because I love someone who has Celiac, but it wouldn't be so bad. At least I'd have an excuse to be soooo lethargic.

in reply to the

"Do you have time to run out to PF Changs and eat all their gluten filled appetisers? I so miss those. I don't miss the twinkie but miss those."

I don't like PF Changs very much. Probably because we are SO poor that I am not letting myself like it lol.

Share this post


Link to post
Share on other sites

Welcome Ashley,

This is Judy in Philly

I sent this email to your Mom but I haven't had an answer to any of my emails either so glad to know she's ok. Thanks for posting that.

I did a cut and paste of the email with the attached TB article I found. Don't know if this is what you needed or not or if it was the one you were refering to.

Good luck with everything.

judy

****************************

HI lynne

I haven't read this as I have no info on TB at all but given your daughter's concerns and not hearing anything from you in the posts, just will send along, ok--Judy

****************************

Gluten Intolerance Quadruples Susceptibility to Tuberculosis (from google alerts)

--------------------------------------------------------------------------------

Posted on: 10/17/2006

People who are gluten intolerant run four times the risk of developing active tuberculosis (TB) infection, suggests research published in the journal Thorax. Gluten intolerance, or celiac disease, is a chronic inflammatory condition of the small bowel, caused by an exaggerated immune response to the gluten found in wheat, barley, and rye. It affects up to 1 percent of the population, and has been linked to several autoimmune diseases, as well as an increased likelihood of lymph gland cancer and complications of pregnancy.

The researchers analyzed Swedish hospital discharge records from 1964 to 2003, looking for diagnoses of celiac disease and TB. During this period, more than 15,500 people were diagnosed with celiac disease, almost a third of whom had been diagnosed as adults. The final analysis was based on 14,335 people, who were compared with almost 70,000 other people, who were free of the disease.

A prior diagnosis of celiac disease almost quadrupled the chances of active TB infection in both sexes, overall, while a diagnosis in childhood tripled the chances.

In a separate analysis, the researchers looked at the risk of subsequently developing celiac disease after a diagnosis of TB in the same group of people. This showed that a prior diagnosis of TB more than doubled the risks of celiac disease.

The link between TB and gluten intolerance was not influenced by levels of poverty or deprivation with which TB is normally associated.

Poor intake of vitamin D and calcium in people with gluten intolerance as a result of both intestinal mal-absorption and the nutritional deficiencies of a gluten free diet, may help to explain the findings, suggest the authors. Vitamin D is a key player in marshalling the immune response against TB infection.

Reference: Celiac disease and risk of tuberculosis: a population based cohort study. Online First Thorax. 2006.

Source: British Medical Journal


Judy in Southern CA

Share this post


Link to post
Share on other sites
Well, the 1000 "more" pounds had me stumped..... If you are implying that you already are 1000 lbs, then I would have to say you have totally lost your marbles!!!! Unless all those children you have been eating lately has packed on those pounds!!!! :lol:

I feel like I weigh 1000 pounds. All those children are high caloric intake. They are quit fatty you know, especially with the bbq sauce or sweet and sour sauce.


Rusla

Asthma-1969

wheat/ dairy allergies, lactose/casein intolerance-1980

Multiple food, environmental allergies

allergic to all antibiotics except sulpha

Rheumitoid arthritis,Migraine headaches,TMJ- 1975

fibromyalgia-1995

egg allergy-1997

msg allergy,gall bladder surgery-1972

Skin Biopsy positive DH-Dec.1 2005, confirmed celiac disease

gluten-free totally since Nov. 28, 2005

Hashimoto's Hypothyroidism- 2005

Pernicious Anemia 1999 (still anemic on and off.)

Osteoporosis Aug. 2006

Creative people need maids.

Share this post


Link to post
Share on other sites