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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,332
    • Most Online (within 30 mins)
      7,748
    Nicolah
    Newest Member
    Nicolah
    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

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.