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

Dd Has 2 Bleeding Disorders . . Need Prayers

ptkds

Recommended Posts

ptkds Community Regular
ptkds
Posted

I just got a call from my dd's hematologist. We have have been taking her to one because she has lots of bruises, bleeding gums, and a few small nose bleeds. After 3 rounds of tests, we finally have a possible diagnosis.

1. a Factor VII deficiency, possibly caused by a Vitamin K deficiency due to her Celiac disease. She took oral Vit. K for 2-3 weeks with no changes. She may need Vit. K shots and more testing to determine why she isn't able to absorb Vit. K.

2. Bernard-Soulier syndrome. This isn't confirmed yet, but the hematologist and pathologist both feel that she has it. She needs one more special test to confirm.

Overall, her platelets are not functioning normally. So if she were to get a head injury or another serious injury, she can bleed to death or develop a hemorrhage in her brain. I am so scared right now. I will always be worried if she falls and hits her head or something. She is barely 3, and she has a speech delay, so she can't really tell me how she feels yet.

Please please please pray for her. I am so worried about her and her future. She is in for a lifetime of needles and pain.

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

Celiac.com Sponsor (A8-M):


ShayFL Enthusiast
ShayFL
Posted

How awful for you and for her. Prayers going up. Stay strong.

Joni63 Collaborator
Joni63
Posted

Sending prayers your way!

Are there medicines that can help with the Bernard-Soulier Syndrome?

Ursa Major Collaborator
Ursa Major
Posted

I am sorry that your daughter has those problems, and I will pray.

About the vitamin K: Two weeks on vitamin K supplements may not be enough to see a measurable difference. Here is a link to find out which foods contain the most vitamin K Open Original Shared Link

I hope that she doesn't have Bernard-Soulier syndrome. I read that only a lab specializing in it will be able to tell for sure. So, if the current tests show it is a strong possibility, insist that her blood be sent to a lab specializing in the disorder, to make sure her diagnosis is correct.

Bernard-Soulier syndrome is genetic, and both the parents have to carry the gene for a child to get it. Do you see evidence of that disorder anywhere else in either your or your husband's family? It is a rare disorder (one in a million), and it is even rarer for somebody to get it with only one parent carrying the gene.

The vitamin K deficiency can be fixed, even if you have to resort to injections in the end. All your daughter's symptoms could be caused by just the vitamin K deficiency. Lets hope and pray that is all it is. But if it isn't, you will learn to deal with it, even though it would be hard.

Aleshia Contributor
Aleshia
Posted

my sister has ITP and the naturopath said the only thing she found to bring up the platelets was sesame oil... I don't know if what your daughter has is anything to do with platelets but you could maybe try and see if the sesame oil would help it? I think they said about a teaspoon a day

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. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      High TTG-IgG and Normal TTG-IgA

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    2. Jsingh
      - Jsingh replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      Hi, My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine...
    3. lizzie42
      - lizzie42 posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Son's legs shaking

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin. He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her...
    4. trents
      - trents replied to Paulaannefthimiou's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Bob red mill gluten free oats

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified...
    5. trents
      - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Disaccharide deficient, confusing biopsy results, no blood test

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,867
    • Most Online (within 30 mins)
      7,748
    mark847
    Newest Member
    mark847
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Bob red mill gluten free oats

      By trents · Posted

      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
    • trents
      Disaccharide deficient, confusing biopsy results, no blood test

      By trents · Posted

      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
×
×
  • 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.