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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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    • Good grief!  :o. I'm so sorry, I wish there was something I could do or say to help you.  I agree with the NP, your primary needs to be requesting copies of your records from the other doctors, as well as the records and lab reports from your hospital stay.  They are supposed to work together as a team, not just individually out in left field.
    • Just a quick one to say I got a diagnosis of celiac disease today. I know in the past it's been helpful for me to know the outcome for other folk, so thought I would update. The moral of this story is even with a VERY borderline blood test it's worth persisting. thanks for all the help Sue 
    • Our own resident gluten-free expert is Suzie Davies. Suzie has been dedicated to gluten-free products since she was diagnosed with celiac disease ... View the full article
    • Well, I am stressed to the max. I just spent 3 days in the hospital with D and stomach pain, dizziness, chest pain, generally unwell. Then another trip to the ER on top of that. My protein was low and my RBC and hemoglobin dropped below normal in 3 days. Not terribly low, but below normal. I also had metabolic acidosis which still confuses me. I usually eat every 2-3 hours despite it causing pain to keep my energy up and was unable to eat that frequently in the hospital. I usually carry protein with me and had been taking liquid iron which I stopped a few weeks ago because my new endo is not a fan of iron supplements. As soon as I got home from the hospital I started with my protein drinks and blackstrap molasses for iron.  I now have bilateral mild pleural effusions and a nodule on my left lung, which hopefully is nothing, but was not there on a CT back in March. In addition, my left adrenal gland, which also appeared normal in March, is calcified and the report indicates this is most likely due to a previous bleed or infection. My colon appears tortuous (whatever that means) and we are waiting on colon/endo biopsies. I have been gluten-free since March except for cc so expect the biopsies to again be negative.  My primary care is useless. I am in the process of getting a new one I will see on the 7th but need the current one to fill out FMLA paperwork because I both physically and mentally need time to recover. I will have to go off of payroll for 2 weeks but I think I need to. I called the primary's office today to discuss the hospital tests which she does NOT have yet and to ask if we should/could start a low dose of prednisone because my body is attacking itself. My thyroid on ultrasound is also abnormal though my bloodwork thus far is normal. But it hurts on that side. The only reason the ultrasound was ordered is because I asked for it in the first place. The only reason I have started seeing an endocrinologist is because I found one myself. Anyway...I broke down in tears on the phone eith her today and she told me I was having a "manic episode". I have no history of mania. I only recently started taking xanax to help me cope with the stress of being sick. I was not sick until I did this stupid gluten challenge over the winter. My mother was in town and spoke with the doctor on the phone as well who was trying to get my mom to take me to a psych hospital. She also threatened to send the police to check on me. My mother assured her I was in no danger and we hung up the phone in complete shock. Admittedly, I was in tears when I called her and probably sounded like a fucking mess. But I believe I referenced the dropping iron, protein, fluid near lungs, enlarged thyroid and attacked adrenal gland then literally said "my body is attacking itself and I need help" to which she said, "I think you are manic". Lovely. If I was a mess before that phone call it was 10x worse when we hung up.  Anyway, this is the first night it has been extremely difficult to sleep. I admit my thoughts about my odd symptoms keep me up often recently. I mean, who the hell bleeds from or gets an infected adrenal gland?! I am sure it was another time I begged my primary for help. On a side not, the NP at the ER told me the primary should be putting these pieces together and communicating with my other doctors better. He then stated that he used to go to the same practice but left because the practice got too big and like a business. So I got some validation from that chat.  A melatonin or a .25 xanax usually does the trick for me to sleep but I am so disturbed about my interaction today, stressed at my health, stressed that my ex has our son so much because I am always sick (bless him for coming through), stressed that I have to go back to this awful doctor because I will need the FMLA paperwork before I see the new doc on the 7th.  8 months ago, I took a multivitamin when I remembered it and that was it.  End rant. Maybe now that it is off my chest I can finally sleep. 
    • Hi DKH0614, I use aspirin, Pepto Bismol, and peppermint tea or Altoids peppermints.  Pepto Bismol has a soothing effect on the gut.  Pepto Bismol also has aspirin in it.  Peppermint is helpful for relaxing smooth muscle tissue and getting gas out of the stomach. As per KarenG, you may be reacting to dairy.  Dairy has a sugar called lactose in it that some people with celiac have a hard time digesting.  You could try avoiding dairy for a few weeks to see if that helps.  Or try taking lactaid type pills when you eat dairy. It doesn't take very much gluten to cause an immune system reaction.  So it is important to avoid even traces of gluten if possible.  The stuff is hard to avoid sometimes if people around you don't understand how much a small amount of it can affect your body. Let us know if we can help with any  more questions, or if you have concerns we haven't addressed. And welcome to the forum! Also, if you subscribe to the thread (notify me of replies) you'll get an email when people respond to your thread.    
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