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

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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.

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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 ?

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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 ?

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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.

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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.  

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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.

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    • Yes!  With dairy, celiacs can often have a temorary lactose intolerance due to damaged intestinal villi (where the enzymes normally are released to digest lactose).  Of course you could be naturally lactose intolerant based on race or age.  It is best to stick to a whole foods diet while you are healing.  Really, is ice cream or potato chips going to provide you with nutritional value?  Stick with naturally gluten free foods like meat, fish, fats,  veggies (even those with carbs like sweet potatoes or winter squash) and fruit.  Avoid that processed junk as you may react to the additives right now.  Later, you can add back in dairy (test) and other foods you miss and crave.   Good luck!  
    • Take a deep breath and calm down!    The incidence of cancer with Celiac Disease is rare.......it can happen but the vast majority of people never have that experience.  You may have somewhat enlarged lymph nodes due to inflammation from undiagnosed Celiac but that will all calm down and go away once you get going on the diet.  Believe me, there are many of us that have things happen during the diagnosis and early recovery period and everything turned out just fine.  There is an elevated risk for some cancers with Celiac but that risk goes back to that of the general population after a couple of years on the gluten-free diet. I cannot remember the exact time frame but it is somewhere between 2-4 years, I think.  So many of us went years without a diagnosis and when it was all figured out, we have gone on to be healthy with little complications.  Really...do  not worry about this.  Concentrate on learning all the ins and outs of this disease and how to live gluten free happily.  We are here to help you and guess what? The diet is not as bad as some make it out to be. Many things can be made gluten free and are every bit as good as their gluten counterparts. The diet may not be convenient but it is not hard. I would not lie to you!   
    • Well....one common symptom that most celiacs have when they are diagnosed (or undiagnosed) is anxiety.  So, there is a risk of cancers, but science has demonstrated that that risk goes down on a gluten free diet (if you have celiac disease).  In goes down to the same risk as those without celiac disease.   I kind of was a basket case.  I drive my family a bit crazy because I was anxious.  I felt a bit stupid too.  I guess I had a little brain fog going on too.  All that resolved after I healed. Welcome to the fourum.  Read our Newbie 101 thread under "Coping" (pinned at the top of the page) and learn about hidden sources of gluten and cross contamination.  I think most of us do not worry about cancer. We mourn the freedom to eat anything anywhere!   I did not have swollen lymph nodes, but I am sure others have and they did not have cancer.  Hopefully, they will chime in and set your mind at ease.  If not, you can search for "lymph nodes" at the top of the page (little magnifying glass).  There are lots of members with the same issue!  
    • I was recently diagnosed as having celiac and to be honest the part I'm having the most trouble with isn't the change in food or lifestyle. I'm really upset about what I've read about the risk of cancer increasing with celiac disease. I think this is playing into my fears because I currently have lymph nodes all over my body-my Doctor says they are not considered swollen or concerning, but I don't usually feel nodes. The lymph nodes and horrible diarrhea for the last 3 weeks were what got me into the the doctor for lab work. My blood work came great so I'm wondering if anyone else experienced lymph nodes reacting when they found out they were celiac? Also how do you deal with anxiety surrounding the increased risk of cancer? Thanks!
    • Wow I'm gonna be a skinny Minnie in no time rather than a bloated and confused Thankyou I'll try look at these images 4 days gluten free
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