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Just Diagnosed. How Long Till She Feels Better?


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6 replies to this topic

#1 Denine

 
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Posted 22 January 2013 - 08:26 AM

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.
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#2 Takala

 
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Posted 22 January 2013 - 09:12 AM

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.
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#3 GFinDC

 
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Posted 22 January 2013 - 02:02 PM

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/
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#4 Denine

 
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Posted 22 January 2013 - 03:13 PM

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.
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#5 nvsmom

 
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Posted 22 January 2013 - 09:50 PM

:( 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.
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#6 GottaSki

 
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Posted 22 January 2013 - 10:12 PM

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 :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#7 Denine

 
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Posted 23 January 2013 - 06:56 AM

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.
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