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16 Month Old - Failure To Thrive
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I have a 16 month old who weighed 7lbs. 13 oz at birth and now only weighs 18lbs. (She should have more than tripled her birth weight by now.) My family has a history of IBS, colitis, and colon cancer...I have reflux and recurrent diarreah and just a lot of unexplained stomach pains. My daughter since birth has had a severe wheat sensitivity. (along with milk, eggs, soy ect.) She grew out of everything except eggs and wheat. She does not have a wheat allergy according to testing. However, her sensitivity is so severe that while I was breast feeding, if I ate wheat she would have blood in her stool and scream for hours. At 15 mos. they did the antibody testing for Celiac disease and the IgA levels came back low. There was talk of immunodificiency disease. Tests will be repeated in a month or so. But, in my heart I know it's celiac. She has grooves in her tooth enamel that are not right, she has stomach pains, diarreah, and will just lay around with her blanky and suck her thumb for a large part of the day. I would appreciate any feedback that anybody can give to point me in the right direction on what I need to do to get a solid diagnosis. I have done gluten free off and on for 6 months and see some improvement...but I haven't been good at being very strict with the diet.

I have seen her pediatrician, and 2 different pediatric gastros. I really appreciate any info that can help my little girl stop suffering. Thanks in advance.

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Failure to thrive is a definite sign of celiac disease. The fact that you have two other common symptoms: stomach pains and diarrhea, makes it seem even more likely. celiac disease is often misdiagnosed as IBS, so that history of "IBS" could actually be a history of Celiac Disease. I think you might have it, and it seems likely that your daughter has it. A wheat "allergy" that doesn't show up in blood results as an "allergy" makes me think it might be gluten intolerance. Finally, an on and off, not strict, gluten-free diet will not necessarily help your symptoms. Therefore, to see any results you should be strictly adhering to it for an extended period of time. The negative bloodresults confuse me, but try bloodwork again, and if you want, run your own sort of test at home.....strict adherance to the diet....and see if she shows improvement

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Hi,

My 3 y.o. daughter was recogized with failure to thrive. She, too, would lie around with her blankie rather than play and was always very calm on outings. Her tummy was getting big and she was screaming at everyone. She had a lot of gas and some rectal prolapse(I called it "the rose" when she had BM's, I had to push it back in)Her first doctor told me that children that age just stick their tummy out. I replied that her posture had not changed and why did she look malourished? He said he talked to other doctors and not much else could be done! I took her to another doctor about a month later after a shoe shopping trip-her feet had not changed size in 8 months. She did not have diarreah so her doctor was thinking tumors on adrenal glands. At that point I insisted she be referred to an endocrinologist. The lack of D was because she had Hashimoto's Thyroiditis(can cause constipation), which usually goes hand-in-hand with Celiac. Fortunately the endocrinologist ordered an IGA test that was very high, which was followed by a GI visit with positive biopsy. She now takes thyroid medicine, eats gluten-free and is a very active little girl. She has also grown a half inch and gained two pounds in the last six weeks!

I think it would be important to insist on at least these three tests:

antigliadin IgA and IgG (indicates gluten sensitivity)

anti-tTG and/or anti-endomysial (more specific to intestinal damage)

total serum IgA (rules out IgA deficiency)

I was recently diagnosed with IBS. I had to ask for a test. The doctor only did tTG-IGA which was negative and refused to do an IgG. I had to insist on a referral to a GI and my endoscopy report just states "chronic unspecified inflammation and no significant blunting of villi". I did eat gluten-free for over a week though and felt super!

Keep persisting, a mother knows when things are not right. This is an excellent place to gain knowledge for "ammunition"

Karen

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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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