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Stressed And New To Celiac
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7 posts in this topic

I so need to find someone out there that can explain this all to me its overwhelming me right now. Our eight year old was recently diagnosed with Celiac and Polyglandular Autoimmune Disease. She was in the hospital for a total of a month. Now I have gotten my results back and I too have Celiac, plus so do our two other children. I am stressed because I see no positive results for my daughter, while I still show no symptoms other than now the doctors believe my seratonin imbalance is a sympton of my having Celiac. Could there possibly be something else our Gastrointerologist have missed as daughter is still exhibiting huge mood swings, chills, and still looks quite emaciated even though we are eating gluten free. We have had to struggle with getting her to eat as they want her to consume 1500 calories daily and that is a huge battle for us. When we do get her to eat its like a starving person as she consumes so much that her stomach then gives her problems again. I am at a complete loss and somewhat scared as I see nothing positive only her getting worse. Can anyone help me?

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I know nothing about polyglandular so cannot say how that might still be affecting your daughter.

You don't say how long she's been gluten-free but people who have been really, really sick take a while to respond. I was in the hospital 11 days and missed 10 weeks of work, all because of celiac. I also had the chills (and night sweats), which is a somewhat unusual symptom, and I had them for at least six weeks. Mood swings weren't a problem, but this is a common symptom in children.

And make sure, if you haven't already, that you get rid of sources of contamination. Don't use old teflon pans, wooden utensils or cutting boards, or that old toaster. Clean out all the silverware drawers. If you have old condiments, peanut butter, butter, jelly, etc. where you might have spread bread crumbs from the pre-gluten-free days throw those out and start fresh. Those are just a few suggestions.

richard

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Those are great suggestions and I would like to add a few.

If she is not already dairy-free conscider it for at least a few weeks to give her intestines time to heal. Once you reintroduce dairy, use the lactose free products for a while and this will give her system more of a break.

If she is having trouble digesting you may want to give her a dose of digestive enzymes with her meal. This should help her get more nutrition out of her meal, since her intestines are not healed yet.

Get the whole house gluten-free as soon as possible. With 4 of you needing the diet it will be easier all around. This will eliminate the possibilities of anyone getting contaminated by the other gluten sources. If there is anyone left in the house who is eating gluten, try to get them to eat their gluten when they are out of the home and if they have it at home to be very careful NOT to leave any crumbs or packages lying about. Have separate shelves and LABEL everything that is gluten-free, so the kids know what is safe and what is not. At 8 years old your daughter is old enough to start learning to read her own labels. My 7 & 9 year olds are doing this, and it is helping them alot to understand what is in the foods they can't have. I always double check in case they missed something and point out the "hidden glutens".

Patience is needed right now. It is a hard road to start down. Everything seems like an uphill battle, but it will get easier. Be patient with yourself and your kids and understand that mistakes will happen. Don't get upset by them, just learn from them and next time it won't be as likely to happen. And remember to ask as many questions as you need to to feel better about an issue. We have all had to ask and there are no stupid questions. Even after years we are all learning new things everday about Celiac Disease. Welcome to the message board.

God bless,

Mariann

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I just wanted to add that we did not see much difference in our daughter at first, but after a few weeks her appetite came back with a vengence and she put on weight quickly. Untill then we mainly got calories and nutrition in using Pediasure. You didn't mention if you are using that (or Ensure or boost) but you might want to try. It seemed easy to digest. Ashlee is still off all dairy, I had head 6 weeks, so we are about to try easing it back in. We also noticed that oranges and orange juice seem to upset her stomach. There is some vitamin deficeincy that causes a small appetite, I think it is magnesium, and since the absorbtion is so damaged, it makes sense that it kind of takes a while for everything to get back in order. I hope things start changing quickly for her!

Michelle

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Thank you all so much I cleaned our cabinets and ridded our home of the old toaster and condiments didn't think about the spoons though that might have been cross contaminated also. I didn't think about the orange juice either though that is a good one. I also didn't think of bringing in magnesium as a supplement or digestive enzymes to assist also. So far we are on calcitrol, prevacid, zinc sulfate, calcium, leventhyroid and vitamin B. We found out about our first daughters Celiac in February, were in the hospital till mid March and have been home about three weeks now. We can't utilize any of the supplements like pediasure,ensure or any due to the sugar content, our daughter has a malabsorption with dairy and sugars if she has more than 17grams of sugar a day her bowels distend and create this gas that causes her to have cramping and diaherra again. I am keeping a food dairy also is that a good idea to continue with? Also do alot of the celiac children exhibit alot of gassiness? Our daughter does and we wondering if as time passed this would alleviate itself. We aren't using the bean flours so was curious about this.

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I noticed that my gas levels got much worse when I added supplements to my diet. The problem is, I

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I'm sorry to hear that your daughter has been so sick :( . Our whole family has been diagnosed w/ celiac disease or gluten intolerance. My son with other major medical problems was the first to be diagnosed. He had 70% of his small intestines, his ileocecal valve and part of his colon removed when he was an infant. He has had some major nutrition/absorption issues obviously, and I know how hard it is to see your child so sick. I was worried that it was taking so long for him to start grow after he started the gluten free diet. It took about 8 months for him to make progress and then boom ! he started growing. He has gained almost 3 lbs in just a few months, and he has grown about an inch too :) . He did start to feel better pretty soon and that went a long way towards increasing his appetite, and he does eat like he is starving a lot of the time now, and he is absorbing the food.

Have you seen a pediatric gastroenterologist who specializes in nutrition ? If you live near a major city, most Children's Hospitals will have one, and probably most major teaching hospitals would have one. The pediatric GI/nutrition specialist dr we see (who is not our 'main' peds GI dr) works in a failure to thrive clinic. Have you at least been able to see a nutritionist who specializes in celiac ? That has been really helpful for us.

Someone else posted about staying away from casein (milk proteins) for a while and it sounds like you are doing that, is that per the GI dr you see? All three of my kids (triplets) were casein free for their first 4 yrs. They can now tolerate casein well, after going gluten free.

Good luck with your daughter, I hope she is feeling better soon.

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    • Oh, Trish at the GlutenFreeWatchDog tested Planter's honey roasted peanuts three years ago.  The can did not state gluten-free, but showed no gluten ingrediants (per Kraft policy).  Test result: less than 5 part per million which is pretty much gluten-free.  
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    • I have intolerances to a few foods now, so I was wondering about that.. I love cashews though, and a month or two ago I was eating them all the time with no problems at all. I mean, could I really have developed an intolerance to them since then? I don't know if they're made on shared lines (it didn't say on the package so I assumed they weren't), but I'll give them a call. I'm really, really sensitive to cross contamination. Even if something is just made in the same facility (but not on shared lines) it will make me sick. If that's not it, then I'm not really sure
    • Research with KP and find a celiac-savvy GI in your area ( read the biographies). and ask your PCP/GP for a referral to that specific GI (not his buddy).  Ask the GI for the rest  of the celiac panel or proceed with an endoscopy/biopsies -- 4 to six.  Keep eating gluten daily until all testing is complete.  Document and request in writing.  Do not worry about symptoms.  There are over 300 of them and some celiacs have none!   Research all that you can about celiac disease.  The University of Chicago has a great celiac website that has testing Information etc.   Poet me know how it works out.  Hope you feel better soon!  
    • I react to both wheat and barley.  I've opted to just go completely gluten free, for the sake of simplicity and my sanity.  I don't have a diagnosis of celiac disease, but I strongly suspect it.  Unfortunately, I'm not willing to endure the misery of staying on gluten long enough to pursue further testing.  I just know I need to avoid the gluten grains, so I do.  
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