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.

2Nd Endoscopy Shows No Blunting But Symptoms Have Not Improved
0

7 posts in this topic

Our 2 yr old was diagnosed as failure to thrive due to low weight gain. She has always been small - born at 4lbs and never on the growth chart. She has never been a great eater and doesn't show much interest in food. She currently weighs 20 lbs. and had her first biopsy in October 2012. They found minimal blunting and thought celiacs might be why her weight has been low so they suggested that we go gluten free, which we did. It's been 4+ months, they did another scope last week and we got results back - and her scope showed no blunting BUT neither her weight or appetite has improved at all. Other than the low weight gain and lack of interest in eating, the only other apparent sympton is her constipation, but that has not improved on the gluten free diet either (we still have to give her miralax every day). Now they are not sure if its celiac and think the first biopsy might have been a mis-reading. My question is this: if she does have celiac and her gut has now healed based on the most recent scope, why haven't we seen any weight gain or improvement in eating or the constipation?? Does she have celiacs? How soon can we expect improvement if her scope shows that she has no blunting?

0

Share this post


Link to post
Share on other sites


Ads by Google:

Welcome.

 

Have you seen any improvements?  Forgive me...how long has she been gluten-free?  It is great to hear she has improved villi upon subsequent endoscopy...do you have her pathology reports...starting and subsequent blood results?

 

Hang in there....improvement often comes slow -- and may need other food adjustments -- although it does sound as though she is healing.

0

Share this post


Link to post
Share on other sites

She may have additional food intolerances, besides gluten, the most obvious ones tend to be cow dairy products and soy, for celiacs/gluten intolerants.   How are the tests for nutritional levels (assuming they have done this ?) is she also low on any vitamins or minerals ?  How is her thyroid function ?

0

Share this post


Link to post
Share on other sites

She's been gluten free since October 2012. They've ran thyroid and endo tests like metabolic panel, TSH, T4, IGF - all came back normal range. Her bloodwork for GI and celiacs (TTA,igA) were negative for celiacs but I know these are not reliable at her age (they ran these around the same time they did her first scope, which showed minimal blunting). Genetic test show she has the gene to give her the possibility of celiacs (in other words didn't rule her out of celiacs). She's had formula since a newborn (I couldn't produce enough breast milk and she was in the NICU), and never showed signs of cows milk allergy like diarrhea or reflux or rashes, etc. her only issues are the low weight ( which she HAS always been small, disinterest in food again she's never loved food even her formula - didn't hate it just indifferent to food, and she has constipation).

quote name="Takala" post="856602" timestamp="1362208496"]She may have additional food intolerances, besides gluten, the most obvious ones tend to be cow dairy products and soy, for celiacs/gluten intolerants.   How are the tests for nutritional levels (assuming they have done this ?) is she also low on any vitamins or minerals ?  How is her thyroid function ?

0

Share this post


Link to post
Share on other sites

Another thought -- the endoscopy only takes biopsy of a very small portion of a very long small intestine.  Four months has shown healing - but doesn't necessarily mean complete healing.  

 

Was the tTG-IgA the only celiac antibody blood test run?  If so, I would get her a full celiac antibody panel even though you have removed gluten.  It is important to have them all done at diagnosis and follow-up.  Our celiac doc does them at diagnosis, at 3 and 6 months then annually thereafter.

 

Total Serum IgA

tTG - IgA and IgG

EMA - IgA

DGP - IgA and IgG

 

Also, nutrients:

B1, B2, B6, B12, D, K, Iron, Ferritin, Copper and Zinc

 

Constipation is a symptom of Celiac Disease -- many docs still operate off of very outdated information.  Here is a more complete list of symptoms associated with Celiac Disease.  

 

http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets10_SymptomList.pdf

 

I have been gluten free for four years and still battle with constipation.  Given her age your daughter will likely heal much more quickly and return to normal bowels.  Dairy can be difficult for those with Celiac Disease to process while they heal -- this is not a permanent allergy - the damaged small intestine can not process dairy and sometimes other foods properly.  Given she hasn't improved in four months, I would consider removing dairy for a few months to see if that helps get things moving.

0

Share this post


Link to post
Share on other sites




And you can get a lot of constipation from just a little gluten cross contamination, or a soy or dairy reaction that is being caused by the celiac reaction.  Just the uncomfortableness of it would throw anyone's appetite off. 

 

Also, you may want to avoid pet foods/kitty litter with gluten, if you have a pet she is interacting with closely.  Is your kitchen mixed and do you bake with traditional flours ?  Trying to get all potential sources of gluten down to minimal levels can take a bit of sleuthing.  

0

Share this post


Link to post
Share on other sites

I'm glad her intestines improved; to me that would be a clue that removing gluten was probably the right thing to do. Because celiacs arefrequently intolerant of milk, you might want to consider removing it from her diet too. I know people might hassle you about  "where will she get her calcium?" but calcium from dairy is not easily absorbed; it is better to get Ca from greens or a supplement.  Coconut milk is a great substitute for milk, but expensive (the real stuff in cans); it does have more fats and nutrients in it than processed cocnut or almond "milk" though... Just something to consider.  :)

 

I would also recommend that you double check her thyroid tests. I was hypothyroid (had strong symptoms) for 15 years with "within normal range" test results; this past year my TSH finally got high enough (and I became educated on all this) so i am finally being treated.  As you know, hypothyroidism really slows down digestion and your metabolism causing "c", and it can affect a child's growth as well. \it is becoming generally accepted that the:

  • TSH should be near a 1,
  • free T4 and free T3 should be in the upper 50-75% range of your lab's normal reference range,
  • TPO antibodies should be non-existant.

 

Don't trust the doctors when they say a thyroid test is normal until you have seen, and researched the results if hypothyroid symptoms are present... which they are (although something else (like the celiac) could be causing them. Many of my lab tests never left the normal range but I still have Hashi's and need treatment.... another thing to consider.  :)

 

Has she had her growth hormones checked or a bone scan to see if her bone growth matches her age (you would want it to be behind if i understand it correctly).

 

I do agree with the others, don't drop the gluten-free diet just because you haven't seen results in her growth yet. I'm still noticing some improvements to my health after 8 months... it takes a lot of time (and patience) for things to get better.

 

Probiotics might help her gut work more efficiently at obtaining nutrients.

 

Good luck to you and best wishes.

0

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
      103,337
    • Total Posts
      917,379
  • Topics

  • Posts

    • Weird Reaction
      Hi Cristiana, You are quite right, there could be something wrong with the batch. I have often wondered this myself when I've had symptoms. A lot of manufacturers recall products when they find contamination issues, I often wonder though, how many products 'sneak' under the radar and no-one knows for sure; it could be the reason why so many of us wonder what we did to get 'glutened'. 
    • 9 year Old going through testing
      Thank you everyone. I have scheduled a second opinion. He last biopsie came back and he is lactose intolerant.     
    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • 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
    • SLLRunner

      Week 4 of the gluten challenge- wheat cereal every morning, regular bread every day, and wheat tortillas for my lunch wraps. Right now, body aches that seem exercise related (weight lifting and running), even though I am doing the same intensity of weight lifting and running I've always done.  Just a few more weeks until my blood test. Counting down the days.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,470
    • Most Online
      1,763

    Newest Member
    Kiwiana
    Joined