Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Stressed And New To Celiac
0

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?

0

Share this post


Link to post
Share on other sites


Ads by Google:

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,874
    • Total Posts
      919,413
  • Topics

  • Posts

    • gluten intolerance, dairy intolerance and fructose
      I'v posted on here b4... 6 yrs ago I was diagnosed as severely gluten intolerant. ( they were kinda shocked that test for celiac was negative) anyway my symptoms went away up until a few months ago. I went to the gi doctor and they said I can't have dairy or fructose.. * I found that out yesterday, I thought my tests for dairy was neg but guess it was pos. And I had no clue about the fructose*..    Anyway is it possible to have all these I tolerances? It's not making since to me.... also if you experience same thing what can I eat!! All I had today was grilled chicken and rice because it was on my lost from gi doctor... I'm a college student so I need easy quick stuff as easy as I can have it now I guess.. also is almond milk ok to have and coconut milk? I'm very confused on the fructose part.. dairy I'v been of for 6 weeks.... my doctor sent a referl over to a diatrition doctor but I want stuff to get me by until I get in. I don't even know what to look for all the research I'v done is just confusing me even more since different websites say different things..... thank you in advance.. I'm trying to gain weight I was gaining the first few yrs of being gluten free but I went back word and stuff went down hill again... 
    • Toblerone
      I don't eat chocolate often, but I have never had a gluten reaction to Toblerone. I trust it to be gluten-free.
    • So I've been glutened....
      I am so sorry for how your feeling.  I can sympathize; over time I notice I couldn't have any type of gluten free products.  I read that since you don't have villi in your small intestines you have no defenses, meaning even the tiniest bit of exposure causes a flare up.  I even have to be careful when I purchase products by reading the labels to ensure it says manufactured by a nut, soy, milk and wheat free facility.  Be very careful, unfortunately
    • Symptoms despite strict gluten-free -- new here
      I have been reading a lot about leak gut syndrome which is new to the medical community in the sense that they don't know how to manage it.  If (you are female) make sure to do a yearly pap and uterine check to ensure there is no issues there.  If you are not a female then definitely confirm with an endoscopy if your small intestines are still damaged.  I am looking into doing the leaky gut diet to see if it will help, the book I am reading is "Eat Dirt" by Dr Josh Axe.  Especially since I notice anytime I am exposed to gluten by accident my symptoms are worse each and every time.  I know get severe back and rib cage pain, with bloating, gurgling and diarrhea with severe nausea.  I am willing to try anything and I am now reading this book and applying the diet to see if I can heal my intestinal lining.
    • Help
      Ok so I had my colonoscopy & endoscopy last Thursday. Don't get results until July 13th as GI is on vacation. I've had bad pain in my lower left abdomen that wraps around to my lower back as well for the past 4 days..even hurts to touch lightly. Went back to the ER & they did an ultrasound & CT scan. The Doctor said that I have "prominent" lymph nodes in the area that is painful as well as thickening & inflammation of my Sigmond colon? Um ok what is that all about? Kind of freaking out over the whole swollen lymph nodes thing. Has anyone ever dealt with this before? 😒
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,909
    • Most Online
      1,763

    Newest Member
    Fourpeople
    Joined