Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

We Have Just Found Out The Results Of Emmas Test....

Guest tracey and emma

By Guest tracey and emma
in Parents, Friends and Loved Ones of Celiacs

Recommended Posts

Guest tracey and emma
Guest tracey and emma
Posted

hi i post hear a few weeks ago saying they were waiting for the hand count of my daughters biopsys. after an abnormal count was found in the first instance. well on the hand count they found the same, and with her symptoms; sleepy, diorea (although not all the time) reluctance to eat (so is tube fed) she had a fundoplication operation (so the could close her tummy so she could not vomit up wards anymore, diagnosed as server gastrophical reflux) and the fact that even with neocate formular pumped into her every night, she is just reached 9kgs at 2 1/2yrs!!! they have decided she probably has celiac. they have now taken a blood test, to check for antibodies as well.

so we are going on a gluten free diet! which would be fine.............but i have just moved with the family to germany, and don´t speak or read a word! (learning but german is so hard!!!!!) so how the hell do i read what she can and can not have!! i have an apointment with the dietican in a week as family are coming out next tuesday so i can go and get lists of words and talk though things! but what do i do till then?

just thought i would let you guys know as i promiced i would get back to you!

just a few quick questions..... if you don´t mind

does this have to be so gluten free that i have to completely even down to giving my son a bisuit and then geting emma a gluten free one, at the same time be extreamly carefull? and work surfaces do they need to be seperate? what about kitchen equipment? i have been told these things by friends but am not sure if this is going totally over the top!! or is it ?

i have no idear, what about buying meat do i have to ask for gluten free? i have been told this to! as you can see i have know idear what i am doing! and also silly one.... but again it is in german can she have heinz tomato sauce because she is going to ask for it tonight as after the operation it helps her to swallow?

sorry everyone feel like i am swimming in the ocean at the moment and have know idear how far i need to take the gluten restiction to! and any one by any chance got an ingredients list that she can not have in german! i know it is not likely but thought i would ask just in case!

thanks for any help

tracey and emma

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


tarnalberry Community Regular
tarnalberry
Posted
hi i post hear a few weeks ago saying they were waiting for the hand count of my daughters biopsys. after an abnormal count was found in the first instance. well on the hand count they found the same, and with her symptoms; sleepy, diorea (although not all the time) reluctance to eat (so is tube fed) she had a fundoplication operation (so the could close her tummy so she could not vomit up wards anymore, diagnosed as server gastrophical reflux) and the fact that even with neocate formular pumped into her every night, she is just reached 9kgs at 2 1/2yrs!!! they have decided she probably has celiac. they have now taken a blood test, to check for antibodies as well.

so we are going on a gluten free diet! which would be fine.............but i have just moved with the family to germany, and don´t speak or read a word! (learning but german is so hard!!!!!) so how the hell do i read what she can and can not have!! i have an apointment with the dietican in a week as family are coming out next tuesday so i can go and get lists of words and talk though things! but what do i do till then?

just thought i would let you guys know as i promiced i would get back to you!

just a few quick questions..... if you don´t mind

does this have to be so gluten free that i have to completely even down to giving my son a bisuit and then geting emma a gluten free one, at the same time be extreamly carefull? and work surfaces do they need to be seperate? what about kitchen equipment? i have been told these things by friends but am not sure if this is going totally over the top!! or is it ?

i have no idear, what about buying meat do i have to ask for gluten free? i have been told this to! as you can see i have know idear what i am doing! and also silly one.... but again it is in german can she have heinz tomato sauce because she is going to ask for it tonight as after the operation it helps her to swallow?

sorry everyone feel like i am swimming in the ocean at the moment and have know idear how far i need to take the gluten restiction to! and any one by any chance got an ingredients list that she can not have in german! i know it is not likely but thought i would ask just in case!

thanks for any help

tracey and emma

I would encourage you to talk to your doctor (I presume you're dealing with one in Germany) and find a local support group. With the number of people over there who seemed to speak English when I visited, chances are, at least one person in the support group will speak English, and can help translate for you.

Jnkmnky Collaborator
Jnkmnky
Posted

Open Original Shared Link

There are also all sorts of web sites, some may be free, that translate languages. Just google german to english translators. All sorts of web sites pop up. Good luck. It should be a short enough list you need to memorize.

Guest Aziah
Guest Aziah
Posted

For the time being you could always order your groceries online until you can figure out the German labels. Here are two websites:

Open Original Shared Link

Open Original Shared Link

Carriefaith Enthusiast
Carriefaith
Posted
just a few quick questions..... if you don´t mind

does this have to be so gluten free that i have to completely even down to giving my son a bisuit and then geting emma a gluten free one, at the same time be extreamly carefull? and work surfaces do they need to be seperate? what about kitchen equipment? i have been told these things by friends but am not sure if this is going totally over the top!! or is it ?

i have no idear, what about buying meat do i have to ask for gluten free? i have been told this to! as you can see i have know idear what i am doing! and also silly one.... but again it is in german can she have heinz tomato sauce because she is going to ask for it tonight as after the operation it helps her to swallow?

sorry everyone feel like i am swimming in the ocean at the moment and have know idear how far i need to take the gluten restiction to! and any one by any chance got an ingredients list that she can not have in german! i know it is not likely but thought i would ask just in case!

Yeah, you have to keep work places separate and have separate condiment jars. I suggest buying meats, vegetables, plain rice, fruits, ect in Germany and I agree with Aziah that maybe you could purchase gluten-free foods online until you learn some German. Here are some more websites:

Open Original Shared Link

Open Original Shared Link Open Original Shared Link

Open Original Shared Link free.com/

I believe that Heinz tomatoe sauce is fine in Canada, but I don't know about other countries.

aikiducky Apprentice
aikiducky
Posted

I'm in Holland, not Germany, but heinz tomato sauce is gluten free here, and I think it's the same in germany, too.

I'll have a look around if i can find some info about gluten free foods in Germany...

Pauliina

German celiac society: Open Original Shared Link

There was only one page of info in English, but I think your best bet would be to contact them. I'm sure they could put you in touch with someone locally who speaks English and can help with shopping in the beginning.

In the meanwhile, plain unprocessed fruit, veggies, meat, fish, eggs...

Hope this helps!

Pauliina

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    2. cristiana
      - cristiana replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result. I am interested to know, is your gastroenterologist concerned? Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous...
    3. trents
      - trents replied to Atl222's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease...
    4. Scott Adams
      - Scott Adams replied to Aretaeus Cappadocia's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especia...
    5. Scott Adams
      - Scott Adams replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      nothing has changed

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can t...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,190
    • Most Online (within 30 mins)
      7,748
    Atl222
    Newest Member
    Atl222
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.