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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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    • Hello I'm happy to join, any help is greatly appreciated as it can be difficult by times for sure. Unfortunately, I have been told my doctor has definitely not been doing anything correctly and very backwards about Alot of things. I live in canada, and there are celiac support groups I have found but I am about 2 hours away from any. I live in a pretty rural area. Although,  I have still received some help from them , they prefer a diagnosis before helping out to much. My doctor has me on a waiting list to see a gastrointestinal specialist but whenever I called her office to inquire about an appointment time I was told there was a very long wait and that I was considered to be a non emergency. So I am waiting to get an appointment. I have seen a dermatoligist for some of my rashes and she said it was dermatitis and gave me different creams for them.  It is frustrating because I don't know how to go about getting a actual diagnosis besides this biopsy. I was told to request a different specialist, but supposedly there is a waiting period for most in our area. 
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    • I really am iffy on talking about this side of my gluten issues, I think I am about to ruin my reputation on this forum coming about as some extreme crazy guy saying this but I wanted to get this off my chest and perhaps see if anyone else might share a similar trauma. I get emotional recalling it, this side of my reactions, as it is most ingrained and very traumatizing experience, and I am not proud of it as the mentality I have now disgust me but I am going to come out about it. One of the scariest things in this world is when your own mind turns against you, when you can not think about what you want to think about, when you can not do what you know you should be able to do. When I got glutened really bad these where things I felt with my own mind would start looping, and thoughts would not come together. I would loose comprehension, feel like I know I should be able to think about something but my mind was not working. The same thing looped over and over and over like a broken record, This led to anger, anxiety, depression, panic, top it off with loss of feeling in my hands and feet, and the pains in the gut......it was a nightmare. I would go as far as beating my head against walls and punching them out of frustration as to why my own body and mind where not working, I just wanted it to end the pain to stop. I still have scars on my fist from punching into a nail in a stud once and kept going.....I scared everyone and myself distanced my self from loved ones. And started running a bucket list accepting that I was going to die soon. Hell to this day parts of the brain damage seem to be permanent as I can no longer do computer programing or some forms of math, they just no longer make any sense or connect. Then we learned what was causing it, and once the symptoms started to fade, I would get very angry if someone in the shared house did something stupid and got me sick again. The fear of going back to that caused violent and drastic actions to get away from what was making me sick. The sheer fear of my own mind turning on me led me to drastic actions to prevent it, throwing everything away I thought could make me sick, making sure no one else used that kitchen, used freezer paper and gloves when fixing my foods and working in there. I really destroyed and burned all bridges I had then and alienated myself from others. In the end it motivated me to learn how to cook, to get and renovate my own apartment in a building downtown, and start a business to pay for my new diet, by selling safe food to others with this issues locally at farmer markets. But it changed me on a very deep level, that traumatic experience to this day I have a issue looking at others and dealing with other humans who eat that stuff.......the stuff that breaks my mind and body so horrifically. If I have to compare it to something its like watching aliens drinking antifreeze and eating poison.....it causes a subconscious level of disgust and slight envy. I really can not even look at the stuff without recall what it does and feeling a twitch. I know I am the alien here, but it feels vise versa, and I look down on the normal people as odd creatures.  I go to the store and find myself overly avoiding contamination, keeping stuff in my own bags, asking the cashier to scan and bag it as I pass it not letting it touch that flour I see on the belt. I am hyper sensitive to the stuff I know and that fear semi dominates my mind as crazy as it sounds.  I am recovering and am forcing myself to try to mingle with other humans overlooking that one thing, but that deep rooted trauma still flares up as a protective measure especially around foods.  I could talk on and on about the other side effects but this one is the hardest to talk about it, and I feel others might be able to relate to it.    
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