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

Just Diagnosed. How Long Till She Feels Better?
0

7 posts in this topic

My 10yo daughter was officialy diagnosed yesterday with endoscopy. She has been in severe pain for 7, almost 8 weeks. The pain has been made worse with the air introduced with the endoscopy yesterday, but that is improving. We started the gluten-free diet yesterday. She is still crying all morning. Plus she has a headache. I just need to know this will get better. I can't take the crying and the clinging anymore. I homeschool her and it is still difficult to get in a day of school. We also started with lactaid yesterday as well as a precaution.

0

Share this post


Link to post
Share on other sites


Ads by Google:

It gets better. Give her some slack while she adjusts to the changes her body will be going through as it rids itself of the poisons. You may want to lay off of the dairy products for awhile, as the part of the intestines which gets damaged by celiac also is the part which digests lactose. There are many different milk non dairy substitutes, such as rice milk, nut milk, hemp milk, coconut milk, etc. (just don't use the Rice Dream brand, which is processed with barley). Then re-introduce non lactose dairy such as plain yogurt or aged cheese s l o w l y to see how she responds.

0

Share this post


Link to post
Share on other sites

Hi Denine,

Some of the tips below don't apply to your daughter's situation, but maybe someone else will read the thread and benefit from them.

A simple diet works well for healing from celiac gut damage. Think of whole foods instead of processed foods. Foods that you would be likely to make 100 years ago. Kids are supposed to be able to heal faster than adults. But they can't heal if they are exposed to gluten, (wheat, rye, barley). Also, some of us react to to oats the same way. So it is safer to avoid oats for a year or two before trying them.

Pepto Bismol coats the stomach and gut and can help a little with pain. Peppermint can help get gas out of the stomach. Sugary foods and starchy foods tend to make more gas. Plain old aspirin can help with pain also.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Helpful threads:

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

Dessert thread

http://www.celiac.co...399#entry802399

Easy yummy bread in minutes

http://www.celiac.co...ead-in-minutes/

0

Share this post


Link to post
Share on other sites

Thanks for the info. This is all new to us. Celiac was never on the radar. She started with stomach pains while on antibiotics for bronchitis. Everything that was tried was assuming they did something to her gut. We got into see the pediatric GI doc and she ordered all kinds of blood work. Test came back positive for celiac disease. She had the endoscopy yesterday and the biopsy was positive for celiac disease. We are still waiting for the allergy testing (eggs, soy and milk) to come back.

I have done a ton of research in the past week or so. I have had her on probiotics since she started the antibiotic. I also have her drinking Kefir.

The doctor said she may be slightly lactose intolerant so to use lactaid.

I have been cooking mostly whole foods or at least minimally processed foods for some time. The diet itself won't be a problem. She doesn't like typical kid foods. I am trying to cook a bit more bland so she heals.

We are all just worn out from the 24/7 pain that is consistently a 9 on the pain scale.

I just want my little girl back.

0

Share this post


Link to post
Share on other sites

:( I'm sorry that she has been so unwell. That's hard on a family.

Many of us went through a withdrawl for the first few weeks where we actually felt a bit worse... I know you didn't want to hear that. I personally had a headache that lasted well over a week, and it was a doozey. I was also very tired and incredibly cranky; I was not at my mommy best for about two weeks. On the bright side, the stomach aches and bloating started to subside within days; within two months I'd lost almost 15 pounds of bloating.

As for the lactose, many of us are beyond "slightly lactose intolerant" so I would avoid milk products that have lactose for a few months until she is healed. I would avoid giving her foods that could cause her pain while she is healing. Hard cheeses are okay but milk and yogurt (I think) might hurt her. Try almond or coconut milks and yogurts for a while. You could try soy as well, but many celiacs find soy hard to handle at first too. If she does consume small amounts of milk (like in baking where you didn't substitute it out) I would definitely use the lactaid.

I would buy her a few gluten-free treats too. Maybe some gluten-free pretzels, tortilla chips, M&M's (not smarties) or make a smoothie every afternoon for a snack. Extra treats helped me not feel like I was missing out on anything at first.

I would also consider going light on school work for a week or so. We homeschool our three boys too, so I understand how some weeks have more of a paper focus and other weeks are more about fun. Maybe the next couple of weeks could include a fun art project, a field trip to a cool museum or zoo, watching documentries on videos from the library rather than reading about the topics, or read a really good book out loud together (I like to read at lunch - they're all sitting and it could distract her from different foods).

Good luck and best wishes to you both.

Oh, and you might want to consider testing yourself and the rest of your family because celiac is genetically linked... just in case.

0

Share this post


Link to post
Share on other sites




Welcome Denine and Family-

Transition is the toughest part - then comes healing. You've already been given great starting info.

Ask questions and read as much as you can - it really does speed the toughest part of this along.

Oh - I strongly agree that you, Dad and any siblings get tested soon and again at regular intervals - celiac disease has a multitude of symptoms - not limited to digestive issues - regardless of symptoms ALL first degree relatives need regular testing.

Hang in there - she will feel better - although it can take time :)

0

Share this post


Link to post
Share on other sites

Thank you all. It is so hard to continue the waiting game to see if she feels better. That is all we have been doing. Try this and see if it works, then try this and see if it works. At least the gas pains from the endoscopy are gone.

I know the doctor said she was going to check for lactose intolerance when she did the scope. If she doesn't improve, I will remove milk altogether instead of just giving her the lactaid.

She has a headache, but it seems more stress induced to me. She never really liked wheat-containing foods, so she didn't eat them much. She only ate pasta if she was told to eat it for dinner. She didn't like bread. Her favorite foods are ones she can eat like rice and potatoes and meat, fruits and vegetables. Her favorite snack is popcorn chips which she can have. So, I am hoping she won't have much in the way of withdrawal symptoms. The one thing she ate that she can no longer have are Joe's O's from Trader Joe's. Those are oats, but who knows about contamination? She is now eating gluten-free rice krispies or corn chex.

Her only symptom has been abdominal pain.

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
      104,354
    • Total Posts
      920,511
  • Topics

  • Posts

    • Welcome!   You were smart to think about cross contamination.  Although it is great that there are so many gluten-free options out there, in the beginning it is best to try a whole foods diet, until your son feels a bit better.  The learning curve for the gluten-free diet is steep.  It is better for you to get everything down before letting others feed him.   When I was diagnosed, my hubby had been gluten free for 12 years.  I thought I knew the drill and converted right over to those gluten-free goodies I baked him.  Turned out, like many of us, I had some food inolerances not related to gluten but as a result of gut damage.  So, additives like Xantham gum made me think I was getting glutened, but I was not.  So, again, try to stick to naturally gluten free foods that are less processed for a while.  When you do venture out, I use "find me gluten free" and read the reviews from celiacs (not a person who thinks gluten-free is a way to lose weight! )   Here are some great tips from out Newbie 101 thread:  
    • I have the same problem. Was told it was psoriasis but no treatments worked even injections. I was daignosed celiac in may, and noticed a year ago the palm of my hand would itch intensely then get small blisters. I believe they are both dh. Have been gluten-free since diagnosis but still have issues with both areas. Thankful digestive issues cleared but would love to know how long before they clear up? I hope we both get feed back and best wishes to you!
    • Yes it most certainly could be a false negative, and I would bet you a dozen donuts that it is (gluten free, of course.   )  At the very least you can be sure it is related to gluten.  These gluten rashes take forever to clear up.  I don't know about you, but whenever I start to doubt my gluten intolerance, I just look at my skin, and the old blood stains on my sheets, and I am reassured that it's not all in my head, and I need to avoid gluten as if it were a bucket of battery acid.
    • Hello, My fiance and I are going to Singapore for our honeymoon next year and I was wondering if anyone knew any cafes/restaurants etc that have gluten-free dishes? We previously went two years ago and enjoyed ourselves so much that we definitely wanted to go back our our honeymoon. Catch is I got diagnosed as being gluten intolerant a few months ago, negative for Coeliac though. If I eat gluten I have bad nausea, bloating, diarrhea etc. Not pretty for a honeymoon :-) I am more than happy to eat fruit at breakfast and make do with steamed rice at dinner etc but if anyone has any ideas on anywhere I can safely eat that would be much appreciated. I don't care how much it costs! Also is it possible for me to bring packaged gluten-free food into Singapore from Australia? I am not sure on the rules. Thank you!!
    • Went in and talked to the manager of our pm and asked about the gluten free pizza, and he told me he can't guarantee its 100% gluten free because of the flour in the air from the other crusts being made.  I value the honesty.   The other employee also mentioned changing gloves.   I was thinking wow great, until I walked out and got to thinking about cross contamination from everyone grabbing the toppings out of the same bins and spreading the sauce with the same utensils.    My son was just diagnosed this week so we are new to the whole lifestyle.   So any help or info is greatly appreciated.    Thanks  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,423
    • Most Online
      1,763

    Newest Member
    Kimmieellis
    Joined