Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • 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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

8 Months In And No Improvements
0

8 posts in this topic

Hey all, I was diagnosed in early August 2012 and went gluten-free immediatly after. I had Iron deficiency anaemia that won't go away which led to an endoscopy (that proved Celiac). Since then, I got an iron infusion in December (which did nothing at all, other then bumping my Iron levels back to normal). I still have anaemia symptoms and overall i'm standing exactly where i was 8 months ago as far as symptoms go.

 

I have an appointment with my Doctor next week and will see what he has to say about this. I am careful with my gluten-free diet. I'm 18 years old so I was looking for a quicker recovery then most but have been very disappointed so far. Would love to get some of your oponions on this. Thanks guys!

0

Share this post


Link to post
Share on other sites


Ads by Google:

It can take up to two years for any damage to heal.

 

Consider keeping a food dairy. It can help you figure out what might be bothering you. It could very well be that you have an additional intolerance to something (such as corn, soy, and lactose).

0

Share this post


Link to post
Share on other sites

I'm still healing, gluten-free since jun 2012. I had a biopsy done in Feb, and although I haven't had an appointment yet about it, the doctor wrote on my sheet that the villi were healing. I still have many symptoms too.

If you've had celiac disease since childhood, then that's still many years to heal up, could be a decade or longer. I'm only 30 and I suspect I developed celiac disease only when I was 17 or 18, so not the 30+ years that many people here have had deal with. And of course the longer it takes to heal, the longer it will take to get your nutrients up. If you are still having gastro symptoms, another food issue seems likely. eg: I can't imagine anyone having any sort of serious gut damage and not having an issue with lactose. Since you still have symptoms of anemia, ask to get your B vitamins checked too. Read up about all the nutrients necessary for you body to function and see if any one of those deficiencies in particular describes you, then ask if you can get tested for it. Anemia isn't always caused by low iron.

 

Also I hope you'll be getting a follow-up biopsy to see how everything's healing.

0

Share this post


Link to post
Share on other sites

I agree with Cavernio about suspecting lactose.  In my experience, doctors won't give much advice to anything remotely controversial such as diets or supplements to help with recovery.  They will simply say to eat gluten free and take a lactaid supplement if you have trouble with lactose.  My GI doctor originally told me that celiac disease was still controversial and wanted to just diagnose me with the all encompassing term IBS...

 

Anyways, if I were you, I would try to bring my diet down to the basics to a point where I could feel comfortable and than slowly add food back to find out what bothers me.  Example: fruits, vegetables, meats, cashews.  I would also take a digestive enzyme before each meal (i use digest platinum by Now Foods).  Hopefully that can get you to a starting point and than you can add on from there with maybe white rice, lactose free milk/yogurt, etc..

0

Share this post


Link to post
Share on other sites

My GI doctor originally told me that celiac disease was still controversial and wanted to just diagnose me with the all encompassing term IBS...

Oh, yeah.

Celiac disease is controversial--my ass. Well, maybe the wheat industry and other interest groups want it to be. There is no offer of a better explanation of villous atrophy while eating wheat, that heals on a gluten-free diet.

All encompassing IBS. Doh. It is Bull Shit. Or maybe, the doc thinks, I've Been Stumped.

Done grouching for now. :wacko:

1

Share this post


Link to post
Share on other sites




There is a Fasano study published in a peer reviewed journal with where celiacs still experiencing symptoms on a normal gluten free diet were treated with a gluten contamination elimination diet of whole unprocessed foods: http://www.biomedcentral.com/1471-230X/13/40/abstract

 

That is what I did to eliminate my symptoms and those of my son.

1

Share this post


Link to post
Share on other sites

Hey all, I was diagnosed in early August 2012 and went gluten-free immediatly after. I had Iron deficiency anaemia that won't go away which led to an endoscopy (that proved Celiac). Since then, I got an iron infusion in December (which did nothing at all, other then bumping my Iron levels back to normal). I still have anaemia symptoms and overall i'm standing exactly where i was 8 months ago as far as symptoms go.

 

I have an appointment with my Doctor next week and will see what he has to say about this. I am careful with my gluten-free diet. I'm 18 years old so I was looking for a quicker recovery then most but have been very disappointed so far. Would love to get some of your oponions on this. Thanks guys!

Like you, I was diagnosed via endoscopy just two weeks ago.  Symptoms?  Only iron deficiency anemia (low ferritin),  Hashimoto's Thyroiditis and Alpha Thalassemia which is another anemia that's genetic (tiny red blood cells).  So, even as my iron levels improve by adhering to the gluten-free diet, my hemoglobin will always remain low and additional iron won't help.    You haven't mentioned all your symptoms, but another anemia might be present.  I agree with some of the others who mentioned other food intolerances too.  

0

Share this post


Link to post
Share on other sites

You may have to go "more" gluten free to the point of being considered eccentric by a conventional medical professional who hasn't experienced this, but it beats being sick all the time.

 

In the beginning I was grain free and low starch for a long time.  And I'm still lower carb than a "normal."  I am not "normal." I am me, damaged by living for most of my life on the wrong diet.  I added in a little bit of grains to be able to do them if I had to, but I'm better off without most of them, even if they are technically gluten free.  And cosmetics, lotions, shampoos, makeup with gluten ?  Fuggedaboutit.   Really, my allergic pets taught me that cross contamination can come from the most unexpected places.  

1

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
      103,404
    • Total Posts
      917,640
  • Topics

  • Posts

    • celiac disease is psychosomatic
      ...and CoQ10 deficiencies can occur in those taking statin drugs.  Really important to monitor that if you are on statins.
    • Starting out
      I guess you must have to be a member then. I don't know because I am a member. It doesn't cost anything & I've never gotten any junk mail from them or anything unpleasant.  Gee, I didn't even think about that when I posted the link. OOPS! Let me know if you need me to copy & paste it because I will if you want.  
    • Starting out
      Hey, do you have to be a member of Medscape to see the article?  I could not get in pass the sign-in page.  
    • Starting out
      Ugh!  Run from that doctor.  Are you located on Mars?  Kidding aside, here's the deal.  If you go gluten free just to test it out and you feel good, then you might think you have a gluten issue.   A few months or a year go by and you realize that this is HARD.  REALLY HARD.  So, you start to cheat.  You get sloppy.  You start sharing a toaster.  Your symptoms come back, but you don't worry about it or maybe you start to get violently ill.  Symptoms so different from your old symptoms that you think you must have something else.  (You could be the type of person who makes a decision and sticks with it.  But those are rare folks.)   I could go on with more stories, but type in lymphoma in our forum's search box.  Look at member's who were misdirected by their physicians and who have had celiac disease all along.  Now they are dealing with cancer.   It is not my intent to scare you into thinking you have cancer.  The odds of you having it are slim and none.  I am trying to scare you into finding another doctor who really CARES about you and follows a normal standard level of care (like reading currant medical journals or checking Dr. Google, like my ER neighbor doctor does because he can not know everything!) It's just a simple blood test.  So easy.  If negative, then give the diet a try!
    • "Celiac disease prevents absorption of iron"
      Well, you are no longer anemic, so that's great!  As long as you are healed, you should be able to absorb iron easily.   Of course, there could be other issues that would prevent you from absorbing iron as villi damage can occur from many things other than celiac disease.   Want to know for sure where you stand?  Ask your doctor to check your iron and iron store levels the next time you have a physical.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,535
    • Most Online
      1,763

    Newest Member
    Sullyn
    Joined