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):

Just Got Blood Work Back....

vaness80

Recommended Posts

vaness80 Newbie
vaness80
Posted

I posted a few days ago about my daughter being tested for celiac. Well, today, I recieved the results of her blood work. They told me that it came back "normal." I can't help but to be relieved yet disheartend at the same time. I just knew that we were on to something. Her symptoms were fitting celiac better than anything else that I had seen. I know that she could still have a gluten intolerence without having the disease itself. or at least I believe that's what I have gathered from this forum. I am going to put her on a gluten free diet and see how this all works out. I feel helpless. My daughter is in pain and this is the least I can do to try to figure this all out.

Okay, sorry about all that rambling, but now for my question: Any advice on where and how to start going gluten free? And am I right about her still being gluten intolerent without having celiac? Is that possible? or should I try to start seeking answers elsewhere?

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

She could even still be celiac with negative blood work. You are a wise mom to give the diet a try.

Start out with as much whole, unprocessed food as is possible. Unprocessed meats, chickens, beans, rice, potatoes, veggies and fruits are a good start. If you live near a Wegmans they label all their gluten-free stuff with a circle G which makes shopping easier. Go easy on the gluten free replacement foods for a little while and also drop dairy for a month or two as she will heal faster that way.

If you have favorite foods of hers that you want to know gluten statis on or want to make a gluten-free version just ask.

I hope she feels better soon.

Yup Apprentice
Yup
Posted
I posted a few days ago about my daughter being tested for celiac. Well, today, I recieved the results of her blood work. They told me that it came back "normal." I can't help but to be relieved yet disheartend at the same time. I just knew that we were on to something. Her symptoms were fitting celiac better than anything else that I had seen. I know that she could still have a gluten intolerence without having the disease itself. or at least I believe that's what I have gathered from this forum. I am going to put her on a gluten free diet and see how this all works out. I feel helpless. My daughter is in pain and this is the least I can do to try to figure this all out.

Okay, sorry about all that rambling, but now for my question: Any advice on where and how to start going gluten free? And am I right about her still being gluten intolerent without having celiac? Is that possible? or should I try to start seeking answers elsewhere?

I had negative blood work as well, but I had a doctor who followed his gut instinct (pun intended) and he did an endoscopie for me. Voila! Celiac. I'm going through the same thing with my kid. She is coming back negative, but she could be a silent celiac like me. Hang in there!

vaness80 Newbie
vaness80
Posted
  • Author

thank you for your replies!! It's all so overwhelming. But, my entire family has made the decision to go gluten free with my youngest daughter. So we are going to be a large support system for each other! Thank you for all of your help, I'm sure I will be back many times, not only to read and get advice but to ask questions! :)

ravenwoodglass Mentor
ravenwoodglass
Posted
thank you for your replies!! It's all so overwhelming. But, my entire family has made the decision to go gluten free with my youngest daughter. So we are going to be a large support system for each other! Thank you for all of your help, I'm sure I will be back many times, not only to read and get advice but to ask questions! :)

What a great family. It is wonderful that you have such a good support system. I hope she is feeling better soon and you may find the rest of the family healthier also.

nora-n Rookie
nora-n
Posted

Sometimes we find that the wrong tests were ordered, what tests were done?

GottaSki Mentor
GottaSki
Posted

"I can't help but to be relieved yet disheartend at the same time. I just knew that we were on to something. Her symptoms were fitting celiac better than anything else that I had seen."

Many Celiacs have negative blood and endoscopy.

My tTG IgA was barely positive...but with symptoms my Celiac Doctor went ahead with endo - major damage and celiac damage confirmed in all biopsies taken.

Meanwhile all of my kids have various symptoms that could be celiac -- all have had negative blood -- two kids and one grandkid have all had positive results from gluten-free diet. More recently I was tested for celiac genes - turns out I have a pair of DQ2 which means all of my offspring have the gene. They may never be diagnosed, but will likely remain gluten-free as minor glutenings have already proved the benefit to them.

Welcome and Good Luck to you!

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

Celiac.com Sponsor (A8-M):


vaness80 Newbie
vaness80
Posted
  • Author

This may sound horrible, but I'm not sure what tests were done. I plan on getting the results from my doctor so I can see for myself what it all says....even if I won't be able to translate the jargon! I have a question about something though.....my daughter is now on day two of the gluten free diet....(almost free) yesterday, her babysitter was trying to fix her something that she could have for lunch...she was going through in her mind no buns, etc...then she remembered that she could have chicken...but had forgotten about the breading on the chicken nuggets that she gave my daughter....I went to pick her up and she had a bad migrain....I got her home and she vomitted. she is not sick. today she is fine...could this be from getting gluten? so soon after starting the diet, because I really didn't think that all of the gluten would be out of her system so soon...or maybe it's not and this was just an effect of having gluten?? does it make sense?

RollingAlong Explorer
RollingAlong
Posted
This may sound horrible, but I'm not sure what tests were done. I plan on getting the results from my doctor so I can see for myself what it all says....even if I won't be able to translate the jargon! I have a question about something though.....my daughter is now on day two of the gluten free diet....(almost free) yesterday, her babysitter was trying to fix her something that she could have for lunch...she was going through in her mind no buns, etc...then she remembered that she could have chicken...but had forgotten about the breading on the chicken nuggets that she gave my daughter....I went to pick her up and she had a bad migrain....I got her home and she vomitted. she is not sick. today she is fine...could this be from getting gluten? so soon after starting the diet, because I really didn't think that all of the gluten would be out of her system so soon...or maybe it's not and this was just an effect of having gluten?? does it make sense?

Many people report weird reactions to all sorts of things when they are first on the diet. This is considered normal and indicates that things are healing up. Leter, you may see a more consistent pattern to reactions. If you wouldn't mind keeping us posted, I would be interested to know if other family members see any changes, particularly postive ones, from adopting the diet.

vaness80 Newbie
vaness80
Posted
  • Author

I will definitely be keeping everyone posted. I'm hopeful that this will be what's going on with her, and it really can't harm the rest of us to try it out too! I'm on this forum as much as I can be trying to read up and find recipes, advice, etc. Thanks to you all who have been helping me along this new journey!!

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,119
    • Most Online (within 30 mins)
      10,442
    coeliacmamma
    Newest Member
    coeliacmamma
    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

    • Russ H
      New diagnosis

      By Russ H · Posted

      Hello, and welcome to the forum. Getting use to gluten-free eating is a struggle, but it is worth it. Your daughter should begin to feel much better and the fatigue will fade but it can take some time. I am sure you will get lots of suggestions from forum members - we have a few from the UK. I am a bit pushed for time just now but will come back later. Russ
    • Ginarwebb
      Test interpretations

      By Ginarwebb · Posted

      thank you so much for this information .. if I'm reading the results correctly I believe the range was  <15.0 Antibody not detected > or = 15.0 Antibody detected
    • coeliacmamma
      New diagnosis

      By coeliacmamma · Posted

      My 16 year old has just been diagnosed with coeliac, she loves food and is now struggling with the diet. She has a variety of different co editions and thos one just tops the list, she is a musical theatre student at college and loves what she does but fatigue gets in way alot of the time, are there any good amd tasty meals I can k make that will help?  Thanks for reading.
    • BelleDeJour
      Dermatitis Herpetiformis - follow up dermatology appointment coming up

      By BelleDeJour · Posted

      Thank you so much @suek54 How are you doing today? I spoke too soon yesterday. Something (I can only think gluten-free sweets or a can of soft drink) set me off yesterday. Had a bath, applied some cream, still itching so applied some steroid and was awake until 3am. It's so frustrating. Always 2 steps forward, 1 step back. I am at work now and going to play it very much on the very safe side with food for the next few days.  My derm appointment is less than a week away. I will update on here because I do feel it important to help others. 
    • Scott Adams
      Skin issues

      By Scott Adams · Posted

      I’m sorry you’re going through all of this. It sounds very stressful, especially when you feel that your symptoms are not being taken seriously. Until you are seen next week, it may help to keep the focus very practical: take clear photos of the skin sores, write down a timeline of symptoms, list all medicines, eye drops, supplements, implants/leak history, and any test results, and bring that to the dermatologist. If there is drainage, spreading redness, fever, worsening pain, eye involvement, or signs of infection, that needs prompt medical care. I would be cautious about assuming parasites or staph without testing, and also cautious with new supplements or putting vitamin C directly on sores, since irritated skin can get worse. A dermatologist can culture lesions, biopsy if needed, and refer to infectious disease if the findings point that way. On the celiac side, I understand your concern for your son, but being HLA-DQ2 positive does not by itself mean he has celiac disease; it means he has a genetic risk. If he is eating gluten now, this is actually the best time for proper celiac blood testing before he tries a gluten-free diet. His symptoms, weight, congestion, and family history are worth discussing with a gastroenterologist, but he should not be told he has celiac based only on HLA status. For your own care, try to keep pushing for objective testing and clear documentation in your records, because that is often what gets doctors to take the next step.
×
×
  • Create New...