Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

7 Year Old Celiac Daughter With Persistent Tummy Aches But Gluten Free


tncboyd

Recommended Posts

tncboyd Newbie

Hi. First time member. I have a 7 year old daughter who was diagnosed one year ago with Celiac. She is tiny due to years of malabsorption. We've been meticulous about her diet and she recently tested gluten free - blood tests and another endoscopy showing healthy intestines - yea!. However, she has had persistent tummy aches for five months now (ever since a bout with Norwalk virus in January). Every evening and sometimes throughout the day she is in pain, which can be severe. Her poops are fine - no constipation nor diarrhea. The Dr's do nothing for her. We are at wits end. Has anyone had similar issues or have any ideas? Thanks! Tim.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Mizzo Enthusiast

HI,

This may be completely different but; My daughter 7 has been G.F. for 9 weeks. At 7 weeks she was still having daily pains and we put her on Prevacid. Now tummy pains gone.

We're actually not sure if it's the Prevacid or just her tummy healing but trying a Antacid can't hurt. It worked in 3 days.

mommida Enthusiast

My daughter was diagnosed and put on the gluten free diet since she was 17 months. It seemed like she was having gluten reactions while she was gluten free when she turned 6. She was vomitting and complaining of stomach pain. The dark circles under her eyes came back and she seemed to be suffering from GERD or acid reflux. She went for further testing and was diagnosed Eosinophilic Esophagitus. The further testing was to rule out parasites, H. Ployri, defects of the digestive tract, or see if Celiac was causing more damage.

T.H. Community Regular

Phew, okay...few ideas.

1. Could be giardia or an H. Pylori infection. Has she been tested for that?

2. Could be other foods, dairy especially, considering the Norwalk issue. Any damage to the intestine, even from a tummy flu, can make a person lactose intolerant for a while, and if they have dairy during this period, it can make it difficult to heal properly. Also, celiacs, are more prone to food allergies, to sensitivities to food dyes, additives, pesticides, and genetically modified foods (according to my GI doc).

I'll relate what went on with my kids - maybe it'll help! After going gluten free, my daughter was actually MORE tired than before. Huge dark circles under her eyes. My son was grumpy and angry a lot, complained of tummy aches a lot, had mouth sores all the time. Docs had ideas, like my daughter simply not getting enough sleep, but none of their suggestions ever helped. It was very frustrating.

Then we found out I had a bunch of food allergies I'd never known about, and I wondered about the kids. My allergies gave no hives or itching or rashes, they would just affect my gut and cause pain and tummyaches (some do that, I've been told now). So I put the kids on a special diet. Not anything bizarre, we just cooked everything from scratch, from organic produce if we could afford it, with no dyes or food additives, and we stayed away from the 8 major allergens (wheat, dairy, soy, peanuts, tree nuts, fish, shellfish, and eggs), plus a few allergies on the family tree. Then I kept food journal detailing what they ate, and how they were feeling.

Best thing I ever did. My daughter's exhaustion disappeared in three days. My son's tummy troubles disappeared in about the same amount of time, although his would come back intermittently. After going down to basics, however, we figured out that he was having trouble with corn.

Right now, my son stays away from dairy(we knew this was a problem since birth), corn, eggs, and gluten. My daughter stays away from gluten, can have corn and dairy in limited amounts, and we're still trying to figure out something else that seems to make her feel terrible periodically.

However, the things is...I know that some, possibly all, of these aren't food allergies. My kids do not get hives, itching, nothing like that. In fact, one of the foods is honestly just bizarre. If my son has corn, there is only one thing that happens. The next 2 days it's like he's little demon possessed child: furious, uncontrollable, no frustration tolerance. It's awful. He doesn't eat corn, he's like a normal little kid with normal upsets and outbursts. I have read that some intolerances can interfere with absorption of tryptophan, which means the brain can't make enough seratonin the next day, which means the child will have a low ability to regulate emotions. I'm really wondering if that's what the issue is, but in the end, I don't really care. I have seen what eating these foods does to the kids. My husband - who at first was rolling his eyes at me and just going along with it until I gave up - has been totally convinced by the changes in the kids since we figured this out. Even my father, who was sure this food journal would hurt his grandkids, is a believer now.

I don't honestly know if that is what is bothering your daughter, but I share it because for us, too, the doctors were of no use. There were no easy-to-see allergy symptoms, and whatever reason the food is affecting my kids, it wasn't showing up on the few tests we did. Like dairy. My son used to vomit if he had a glass of milk, or the equivalent in dairy, but he tested negative to dairy allergy, and he didn't have lactose intolerance. Their reaction was: not lactose intolerance, not allergic, he can eat it. No attention paid to the vomiting at all <_< After running into that, when I was concerned about food again, I decided to do it - safely - on my own. It might not help me know why they are reacting to a food, but as long as I am careful about their nutritional intake, and they are healthy and happy without these foods, I'm really okay with that. :)

Hi. First time member. I have a 7 year old daughter who was diagnosed one year ago with Celiac. She is tiny due to years of malabsorption. We've been meticulous about her diet and she recently tested gluten free - blood tests and another endoscopy showing healthy intestines - yea!. However, she has had persistent tummy aches for five months now (ever since a bout with Norwalk virus in January). Every evening and sometimes throughout the day she is in pain, which can be severe. Her poops are fine - no constipation nor diarrhea. The Dr's do nothing for her. We are at wits end. Has anyone had similar issues or have any ideas? Thanks! Tim.

Kelly&Mom Rookie

I feel for you. My daughter (14) has been gluten-free since this last Sept. The Dr. said it would take about 6 mos. for her to heal but she still had stomach aches every time she ate....... she did gain weight, skin color looked better, had some periods of time where she felt better but we had a week where she just felt terrible so took her back. This time he said she has irritable bowel syndrome which often runs hand-in-hand with celiac. Gave us medication (muscle relaxants) and sent us on our way. The pills didn't make her feel better, just made her drowsy so I went online and looked up what foods were IBS triggers. Lo and behold, the watermelon she loves is a trigger as were many other foods she loves such as onions, peppers, spinach, most things with insoluable fiber and dairy. Put her on the cleansing diet, mostly chicken, rice and she suddenly felt better. Wish the Dr's would tell you about that instead of prescribing drugs! So, we're slowly going through foods on the "No" list and figuring which ones are her particular triggers. She's a teenager so she knows gluten is not an option. I told her all other foods were up to her. She knows she will feel bad but it won't really harm her otherwise so it's her choice. Goodluck to you!

tncboyd Newbie

Thank you to all! What a great response! We have ruled out acid reflux, parasites, bacteria, viruses and dairy intolerance. Since the doctors have given up on us and said its all in her head, I think we will further test the food allergy approach, which seems to be the predominant suggestion We'll put her on an extremely simple, fresh diet for three days, and if there is an improvement, we gradually introduce food groups until we find the culprit(s). Wish us luck! And thanks again for all of your inputs. Good health to all! By the way, I've recent been diagnosed with severe ulcerative colitis, which has been seriously inhibiting my active lifestyle, but my little one tested negative with her recent colonoscopy. Hmm. And what a trooper she's been through all of these invasive tests. A very proud Dad, Tim.

Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748

    ace14219
    Newest Member
    ace14219
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Lkg5
      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
    • catnapt
      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.