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So Many Questions
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2 posts in this topic

I will try to keep this post from being very long but I also feel like everything stems off each other so that will be hard. I really need some help though please!

My 15 mos old was diagnosed several months ago as failure to thrive. We spent all summer doing many tests with a GI and did an endoscopy in July....GI was convinced she had Celiac. She is DQ8 positive but everything else including the endoscopy have come back negative. My DD was not gaining weight, has a very distended belly, and was pooping 4-7 times a day. After the endoscopy we decided to try a gluten free diet as the GI threw his hands up and didn't know what the problem was. He laughed at me when I suggested just trying a diet change (yes, we have fired him). He doesn't believe in just intolerances....it's either Celiac or nothing. She's been gluten and wheat free for 5 weeks now and at her 15 mos check up last week she had gained 2 pounds and grown 1 1/2 inches....huge growth for her! She also went from pooping 4-7 times a day to only 1-2 times. Ped was thrilled and said to keep her gluten free.

She had a seizure back in March (no answers why). She has had questionable seizure like behavior since (waiting on EEG results and is scheduled for a MRI). She was hospitalized 3 weeks ago because her blood sugars crashed to 43. Drs finally began to take me seriously after that. She was diagnosed with ketotic hypoglycemia. Endocrinologist doesn't know if it is caused because of an underlying issue of "Failure to Thrive" or something completely separately.

The last 2 weeks she has been giving me such a hard time eating ANYTHING. She used to have a huge appetite and would eat anything and everything (which also didn't make sense because she wasn't growing). I feel like removing gluten is definitely helping but I still feel like there's a problem. Here are my questions.....Is there such thing as just a gluten allergy/intolerance or does it mean she has Celiac? I have removed gluten/wheat but haven't gone strict with worrying about cross contamination or trace amounts in things.....can this be affecting her not wanting food at all? Her belly is still so distended...how long would this take to get better? Even things that used to be her favorites/treats she is fighting me on. I've heard that removing gluten can temporarily make people sensitive to dairy....could this be it? In the last week she has lost over a pound of the 2 pounds we worked so hard to gain :( Per the advice of the nutritionist we saw in the hospital she is also on Pediasure which I don't offer until I've spent a good deal of time trying to get her to eat solid foods.

I'm open to any suggestions or tips! We are in the process of getting a new GI now. I just don't know what to do. Obviously when she doesn't eat it also makes her blood sugars low which can't be happening.

TIA!

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There are a ton of issues which can cause failure to thrive in infants. I think you are doing an excellent job finding a new GI and working so hard to offer her solids before the Pediasure. There are some pretty strange allergies out there, aside from the eleven you hear about all the time, and its hard to diagnose allergies in infants (Corn, Oats, molds...etc.) . If you are waiting on test results for the EEG and an MRI my course of action would be the following; keep up the pediasure and offering solids, and pretend you are a nurse. Keep a chart/ notebook of her intake and her temperature three times a day. If blood sugar is an issue, start taking that as well. Sending you hugs and support.

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    • Thank you! I will call and ask for a full panel and see where it leads!!
    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
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