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Newly Diagnosed-Collagenous Sprue Any Others?
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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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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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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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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.

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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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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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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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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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    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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