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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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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Going gluten free may be beneficial if you're among the roughly 10 percent of people who suffer from celiac disease, a genetic immune disorder, ... View the full article
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