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

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

  • 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. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
    2. Scott Adams
      - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid mul...
    3. Scott Adams
      - Scott Adams commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      2

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      Better to know late than never, and it is too bad they did not test you for it earlier!
    4. Scott Adams
      0

      Koikoi Trading Inc., Issues Allergy Alert on Undeclared Wheat and Sesame in FU ZHOU FISH BALL

    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after eating them. If it happens a few times after eating the same foods- I cut back...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748
    James Minton
    Newest Member
    James Minton
    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

    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
×
×
  • 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.