Jump to content

  • 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):

Help Please!

Coconut's mom

Recommended Posts

Coconut's mom Newbie
Coconut's mom
Posted

Hi, I just stumbled on this site. Looks great, and hope I can find help. My daughter is 14. She has had stomach problems for years. We tried a ped. gastrologist approx 4 yrs ago. He said to add more probiotics to her diet (wow). She eats tons of yogurt, and I make kefir that she drinks. We did the dairy free diet, no help. Her symptoms are: Severe gas and bloating to the point of tears (which I know, can be caused from many things), sometimes diarrhea, tingling in her back, arms, and legs, headaches (not severe), fatigue, acid reflux, (with no help from meds), and recently nausea and some vomiting. Summer before this one, she went to camp and came back very sick. She lost weight because she was afraid to eat because she didn't want to hurt. I thought it was just a "teen" girl weight thing, so I let it go. Then, at the beginning of this year, when the nausea and vomiting started, I knew I needed to do more. I had read up on celiac and gluten intolerance. I took her to her pediatrician, and told her I thought she had celiacs. She ran blood work ( I don't know exactly what), but it came back negative. I then decided to put her on a gluten free diet. Immediately, she improved. The problem is she can't stay on the diet. She constantly "cheats" to fit in. Her symptoms are not near as bad as before, but she is still having them. In her "teenage" mind, she thinks I am paranoid because we don't have an "official" diagnosis. She wanted to see a gastro dr. I finally gave up the fight, and told her when she decided to be totally gluten free, I would try to help her, but she had to make an effort. I made an appt. with a gastro dr. and have been waiting to see him. Today, I find out, he doesn't take anyone under 16, so we are back to square one with that. She also had some enlightenment when she ate wheat cereal and then threw up and has felt poorly all day.

What do you recommend? Do we go to a gastro dr and have the procedure? If it is neg too, could it still be celiac? or what else do we need to do?

I am about at my wits end!

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

Celiac.com Sponsor (A8-M):


bakermom Newbie
bakermom
Posted

I don't blame you for being at your wit's end! I think the pediatric gastroenterologist is really important, because blood tests can come back negative. THe followup to a blood test is a biopsy if the doctor thinks celiac disease is possible, and you need to be eating gluten for that biopsy to be true. It certainly sounds possible, but there are other options too. I don't know where you live, but if you're anywhere near Cleveland, OH, I'll recommend someone.

Once you get past that hurdle, the eating-to-fit-in thing is hard to conquer. I can't exactly speak from experience, because my daughter was diagnosed at 2 and is now 6, but I've heard from others. She's going to have to make a choice each and every time about whether she wants to fit in and have pain, or be pain free and a bit different. It's hard to support them in their choices. It's also hard to know how bad peer pressure can be.

Cooking and baking can help make some equivalent things, and you'd be surprised how many options there are at various restaurants to eat something appropriate.

I will hold your family in my heart....

Dixiebell Contributor
Dixiebell
Posted

Welcome to the forum!

Teens can be so difficult sometimes. You could show her this list of things that can happen with untreated celiac disease or gluten intolerance.

cassP Contributor
cassP
Posted

good idea to show her that list!!! but u might want to add MORE to it:

constipation

HEMMOHROIDS... to the point where u may need excruciating surgery

hypothyroid

depression/anxiety/panic attacks

DH, psoraiasis, and excema

etc,etc...

i think you need to ask your doctor for a copy of her results- and study them. they may not be complete- or they may have HIGH negative numbers.

and then i would suggest you two consider retesting, and maybe biopsies.. BUT- you want to make sure she is on a good enough gluten challenge before- otherwise the testing may be a waste of time.

and keep looking on here- & maybe showing some threads to your daughter-> there's a lot of great info on here- many of our GIs are even telling us to research online, because they are new to a lot of this too- as they were not really taught too much by the Pharmaceutical run medical schools

Coconut's mom Newbie
Coconut's mom
Posted
  • Author

Thanks for the advice. We live in NC near Asheville.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to HectorConvector's topic in Related Issues & Disorders
      360

      Terrible Neurological Symptoms

      You have an odd story there. To me, the mechanical trigger suggests a mechanical problem and lower leg pain is a classic sciatica symptom. The fact that the clear mechanical linkage is no longer there does not take away from the fact that it was - maybe something shifted and the simple alignment is no longer there. There's also a good chance I am wrong and...
    2. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      360

      Terrible Neurological Symptoms

      Oddly this effect has gone now, just happened yesterday evening, the nerve pain is now back to its usual "unpredictable" random self again - but that was the only time I ever had some mechanical trigger for it, don't know why! There's no (or wasn't) actual pain in my neck - it was inside the leg, but when I looked down, now though, the leg pain just comes...
    3. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      360

      Terrible Neurological Symptoms

      I had MRI scan a few years ago showing everything normal, and now it's no longer triggering the nerve pain when I bow my head today - it only seemed to happen yesterday, and that was the only time it happened! Just seemed weird as no movement has caused my usual nerve pain before. It's normally just random.
    4. AutomatedGlutenEjector
      - AutomatedGlutenEjector commented on Scott Adams's article in Latest Research
      71

      COVID-19 a Possible Trigger for Celiac Disease in Those with Genetic Risk

      This hypothesis certainly lines up with my experience. Avoided getting Covid until August 2022. Celiac diagnosis three months later, and they think they caught it early (not a ton of damage in my EGD). I'd suspected the connection before, so it's nice to see researchers are interested in this question.
    5. akebog
      - akebog posted a topic in Gluten-Free Restaurants
      0

      Fusilli Pizzeria, Miller Place, NY

      Very good pizzeria with small dining room in back of the restaurant. The owner's daughter has celiac & they have gluten free pizza & a gluten free menu. Some items from the regular menu can be made gluten free also. They have a lunch menu which we ordered from & my chicken with spinach & mozzarella over gluten-free penne was delicious...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,062
    • Most Online (within 30 mins)
      10,442
    AutomatedGlutenEjector
    Newest Member
    AutomatedGlutenEjector
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      Terrible Neurological Symptoms

      By Aretaeus Cappadocia · Posted

      You have an odd story there. To me, the mechanical trigger suggests a mechanical problem and lower leg pain is a classic sciatica symptom. The fact that the clear mechanical linkage is no longer there does not take away from the fact that it was - maybe something shifted and the simple alignment is no longer there. There's also a good chance I am wrong and it's something else entirely. @Scott Adams's mention of shingles is interesting. It seems possible but unlikely to me, but who knows. However, I am writing here to reinforce the idea of getting the shingles vaccine. Ask anyone who has ever had shingles and they will bend your ear telling you how bad it is. I watched my wife go through it and it scared the bejeebers out of me. Even if you had the chicken pox vaccine, you really want to get the shingles vaccine.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      Oddly this effect has gone now, just happened yesterday evening, the nerve pain is now back to its usual "unpredictable" random self again - but that was the only time I ever had some mechanical trigger for it, don't know why! There's no (or wasn't) actual pain in my neck - it was inside the leg, but when I looked down, now though, the leg pain just comes and goes randomly as before again.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      I had MRI scan a few years ago showing everything normal, and now it's no longer triggering the nerve pain when I bow my head today - it only seemed to happen yesterday, and that was the only time it happened! Just seemed weird as no movement has caused my usual nerve pain before. It's normally just random.
    • akebog
      Fusilli Pizzeria, Miller Place, NY

      By akebog · Posted

      Very good pizzeria with small dining room in back of the restaurant. The owner's daughter has celiac & they have gluten free pizza & a gluten free menu. Some items from the regular menu can be made gluten free also. They have a lunch menu which we ordered from & my chicken with spinach & mozzarella over gluten-free penne was delicious. They also have Tuesday night pasta specials & Thursday night chicken pasta specials. We plan on going back for dinner soon.
    • nancydrewandtheceliacclue
      Celiac flare years after diagnosis

      By nancydrewandtheceliacclue · Posted

      @Aretaeus Cappadocia and @Russ H thank you both for your helpful advice and information. I haven't seen a GI in years. They never helped me aside from my inital diagnosis. All other help has come from my own research, which is why I came here. I will be even more careful in the future. 
×
×
  • Create New...