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Newly Diagnosed-Collagenous Sprue Any Others?


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#1 momtojzsh

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Posted 13 April 2011 - 06:41 AM

Hi,
New here to the forums.Recently diagnosed with collagenous sprue after years of all kinds of symptoms.Diagnosis was based on biopsy results.No help fom the doctor yet.He told me what I had, told me to go gluten free, and said I needed to go to a specialist(and walked out of the room).Now waiting to see a dietician and GI specialist.So far everything I am doing is based on what I have found on the internet.Wondering if anyone else has experience with this.Thanks,
Kim
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#2 ravenwoodglass

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Posted 13 April 2011 - 12:29 PM

Collagenous sprue from what I saw when I quickly looked it up is similiar to refractory celiac. Were you previously diagnosed with celiac but haven't responded to the diet? If that is not the case and you are newly diagnosed with celiac (some doctors will refer to celiac as Sprue) you are in the right place to learn all you need to about being gluten free. Read as much as you can here and be very strict and hopefully your symptoms will resolve on the diet.
Welcome and ask any questions you need to.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 momtojzsh

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Posted 13 April 2011 - 01:21 PM

Thank you for the welcome,
Never previously diagnosed with Celiac.Recently my stomach symptoms progressed so severely they finally listened to me(severe weightloss and vomiting).I have had many stomach sypmtoms and many of the autoimmune issues since as far back as I can remember. Nobody ever put any of it together.I have checked out ton's of books on celiac to educate myself since the diagnosis.I had some previous knowledge after research into some of my kids stomach symptoms.I now believe I need 2 of my kids tested for Celiac for sure(ulcer's,failure to thrive and many other things) Still wondering why they weren't checked for celiac.Must say I am not happy to have a disease, but I am grateful I know what it is, and can now treat it!! It also means I wasn't crazy,nor a hypochondriac!:)
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#4 ravenwoodglass

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Posted 13 April 2011 - 02:29 PM

Thank you for the welcome,
Never previously diagnosed with Celiac.Recently my stomach symptoms progressed so severely they finally listened to me(severe weightloss and vomiting).I have had many stomach sypmtoms and many of the autoimmune issues since as far back as I can remember. Nobody ever put any of it together.I have checked out ton's of books on celiac to educate myself since the diagnosis.I had some previous knowledge after research into some of my kids stomach symptoms.I now believe I need 2 of my kids tested for Celiac for sure(ulcer's,failure to thrive and many other things) Still wondering why they weren't checked for celiac.Must say I am not happy to have a disease, but I am grateful I know what it is, and can now treat it!! It also means I wasn't crazy,nor a hypochondriac!:)


It is advised that when one family member is diagnosed that all first degree relatives be tested whether they have symptoms or not. So you should not only test your kids you should also make brothers, sisters, Mother and Father aware of the diagnosis so they can also be tested. Since false negatives are common if someone, like your children, have symptoms they should give the diet a good strict try even if the tests are negative. They should not go gluten free until after testing is done.
Hopefully you will be feeling better very soon but do be aware that some of us can go through a withdrawl so if you are a bit moody for a bit that is not unusual.
  • 0
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#5 momtojzsh

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Posted 14 April 2011 - 06:37 AM

I already called my mom and have asked her to make sure my sister get's tested.She is 31 and has many issues as well, and is currently PG with her first baby, and has already had some issues with the Pg.We never thought she would get Pg because of unexlained fertility.She has had a number of health issues as well, so I have a feeling she probably has Celiac.I delivered 3 premature babies and now believe it to be because of my illness. My mom's side all have a history of different stomach ailments.We all just called it a spastic colon base on stress and other factors since nobody was every really diagnosed with anything concrete.My diagnosis now allows me to tell everyone to get checked.
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#6 T.H.

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Posted 14 April 2011 - 03:41 PM

She is 31 and has many issues as well, and is currently PG with her first baby, and has already had some issues with the Pg.


Actually, it might be really important for her to go gluten free right now. It won't hurt the baby at all if she goes gluten free, as gluten isn't a necessary nutrient, you know? But if she is celiac, NOT going gluten free might endanger the pregnancy, especially if she's already having issues. She can try for the blood test right away, but seriously, I would urge her as much as possible to just go gluten-free right away.
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T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive


#7 epearl11

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Posted 05 May 2012 - 08:24 AM

Hi,
New here to the forums.Recently diagnosed with collagenous sprue after years of all kinds of symptoms.Diagnosis was based on biopsy results.No help fom the doctor yet.He told me what I had, told me to go gluten free, and said I needed to go to a specialist(and walked out of the room).Now waiting to see a dietician and GI specialist.So far everything I am doing is based on what I have found on the internet.Wondering if anyone else has experience with this.Thanks,
Kim


Hi,
I hope you have been able to see a specialist and get the help that you need. I to have collagenous sprue and it is not ciliac. I am seeing a specialist in Boston and he has been great. This is a rare disease and there are only 20 peaple in the US that have this and we are 2 of them! I would love to talk with you. I am currently in the hospital but have my laptop.

I hope to hear from you!
Elaine
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#8 kareng

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Posted 05 May 2012 - 09:27 AM

Hi,
I hope you have been able to see a specialist and get the help that you need. I to have collagenous sprue and it is not ciliac. I am seeing a specialist in Boston and he has been great. This is a rare disease and there are only 20 peaple in the US that have this and we are 2 of them! I would love to talk with you. I am currently in the hospital but have my laptop.

I hope to hear from you!
Elaine


The OP hasn't been on here in a year. You might be able to message her. Some people have thier account set up to notify them of personal messages and if she did that...and if she has the same email....maybe you could reach her. Click on the envelope under her picture or click her picture then the " send message" under the picture in her profile.
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