• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Rate this topic

Recommended Posts

Thank you GFinDC

 

They got to terminal ileum, but couldn't see any problems!  They did say they'd do a pillcam next, I really hope they do as I am convinced her problems are in her small bowel! 

 

xx

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Any news on the Julie front Niks?  IS she closer to a diagnosis?  Or to a  pillcam and her Hollywood debut? :)

Share this post


Link to post
Share on other sites

She has been dreadful. Admitted for fluids and IV antisickness 3 times over last 2 weeks. Also once for kidney stones!! She's never had kidney stones before!! She also has a UTI poor thing.

She's losing weight rapidly and not keeping any solid food down. Luckily at the moment she is keeping clear fluids down, but this is hit and miss!

Next GI appointment is next Tuesday, but have no dates for pillcam! They're also doing stomach emptying test but haven't got date for that either.

She's being followed up by nurologist after kidney stones, sure that'll be months away!! :(

Share this post


Link to post
Share on other sites

Bummer!  Sorry Niks,  These things can be a long road sometimes.  I wonder if any of her meds have kidney stones as a possible side affect?  Are they treating them with ultra sound?

 

It sounds like she might have a blockage in her intestine.  They do have surgeries that can treat that condition.  My brother had several surgeries for his Crohn's and did much better after them.  I had a coworker with Crohn's who had large sections of her gut removed and she did fine afterwards.  She just had to eat small meals more frequently.  That was years ago though and I think they have better drugs available now.  So surgery may not be needed at all.

 

Enteral nutrition is sometimes used to help calm down the immune attack on the gut.  It is supposed to be less irritating and easier to absorb too.  It is supposed to be a kind of stabilizing / healing treatment.

 

Thanks for the update.  I hope and pray that Julie will get relief soon. :)

Share this post


Link to post
Share on other sites

GFinDC - Thank you!  The problem is Jaime has no diagnosis of Crohn's!  They can't 'rule it out' but haven't seen any active crohn's on any scopes.  There are a meters of small intestine that can't be seen on scopes so it is extrememly frustrating!

 

She has previously been on fortisip compact when she hasn't been tolerating solids but as she stands right now she can't keep them down either.  

 

She is just hanging on until next Tuesday, they are going to have to come up with a plan, I think EN might work but they may have to bypass her stomach. Not sure how that's going to go down!  They think the kidney stones were caused through severe  dehydration.  I just hope that she can keep hydrated enough until her appointment.

 

They think that the stones have passed by themselves.  

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,891
    • Total Posts
      943,381
  • Member Statistics

    • Total Members
      67,104
    • Most Online
      3,093

    Newest Member
    DebbieAnn
    Joined
  • Popular Now

  • Topics

  • Posts

    • Soft blended, soups, porridge, Personally I had to avoid the follow for my last gluten attack Spices (made it burn),  any carbs, sugars even in trace amounts caused gas, We normally suggest removing dairy and oats also as they become problematic during healing. Simple soft cooked egg dishes (coconut/almond meal quiche and microwaved omelettes), nut meal porridge sit best for me. Many swear by peppermint and camomilla tea, and peptobismal but neither of those work for me personally, other swear by Imodium for the D.

      There is a product out there that is supposed to lessen the symptoms of a exposure called GlidainX that helps to break down some of the gluten in the intestines so it is not as bad but you have to take it right after realizing the issue. Not tried it personally but after my last exposure and the following 4 weeks of random bouts of D I had I would have tried anything lol. MY D did no stop til my antibodies went back down and my exposure was a low and slow exposure to a CCed food staple....
       
    • Hi lex, I haven't tested anything with NIMA myself, since I don't have one.   I did find some honey sites that claim they have gluten-free honey.  This is just a couple I found in a quick search.  It seems to me honey is made from nectar of flowers.  The nectar is a precursor to the seed.  So the seed isn't formed until the flower is fertilized.  Then gluten is formed as the seed matures.  So normally I think there is little chance of honey having gluten in it because the nectar and gluten are not present at the same time in the plants. I don't think it's impossible for honey to somehow get some gluten in it.  Honey from china has been adulterated with other things already.  Generally high fructose corn syrup.  But who know what else they put in it? I think's its safer to buy local honey where you know the farmer than imported brands IMHO. If there were a large flour mill in the area where the honey was being harvested I'd be a little wary of it myself.  At least for honey produced during the harvest season. http://www.barkmanhoney.com/faqs/does-honey-contain-gluten/ http://www.capilanohoney.com/au-en/faq/is-your-honey-gluten-free Is your honey gluten free?       Honey is naturally free of gluten. It does not contain wheat or its by-products. Our honey is 100% pure and natural, nothing has been added to it, therefore it is 100% gluten free. In addition to this, no gluten containing products are handled or stored in our packing facilities.  
    • Hi everyone! New to the forum. I was diagnosed in 2012, told to never eat gluten again, and never had a follow-up or anyone really care about the diagnosis. My Endo checked my vitamin D levels (the low level and genetic history lead to my diagnosis) bi-annually which have remained now in the normal range. This level is what I was always told determined if absorption was happening or not. I have never heard of the things everyone on here gets tested for  I feel so cheated out of my health in a way. anyways. I have severe, severe brain fog. I used to be so smart, sharp, witty, focused. I even have some personality changes and severe anxiety. I was put on Xanax after I was diagnosed but my tolerance to that medication is outrageous. I have to take three times the prescribed dose (my doctor knows this) in order to get any relief/clarity. I have a weight problem even though I work out four days a week (with a trainer), probably due to my flip floppy thyroid levels. Anyways, that’s my story! I have appointments with a new PCP, Endo, and GI doc in March! Just wanted to share with you all because you’re so kind and helpful. If anyone has any advice for this brain fog, I would be so appreciative.  I should also mention that I was extremely smart and sharp before stopping gluten, ironic? Like the lack of gluten dumbed me down 🙈 I never ever cheat. I know restaurants aren’t 100%, but I rarely chance that. There may be SOME cross contamination but I never feel repercussions.  Thanks for reading ☺️
    • Does anyone one have the symptom of period like cramps?  After menopause?
    • I have an ipad and iphone - so not sure if these exact games are available to you. I like a word game called word crossy.  Also "1010" games are good to try.  Picross style games can be fun
  • Upcoming Events