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

A Sibling With A Neg.


mmmSmores

Recommended Posts

mmmSmores Apprentice

I was diagnosed in mid-october this year. My brother was just tested (blood test) and his results were negative. does anyone know if this is common? for one to have it and the other to not have it? Also, can anyone tell me, should I consider being re-tested?

I had a biopsy for something totally different, and they said the results indicated that I should be tested for Celiac disease. I had a blood test which came back positive.


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



Celiac.com Sponsor (A8-M):



Lisa Mentor
I was diagnosed in mid-october this year. My brother was just tested (blood test) and his results were negative. does anyone know if this is common? for one to have it and the other to not have it? Also, can anyone tell me, should I consider being re-tested?

I had a biopsy for something totally different, and they said the results indicated that I should be tested for Celiac disease. I had a blood test which came back positive.

The latest stats I have indicates 1 of 22 first-degree relative tested positive for Celiac Disease.

The Celiac gene may be inherited making you predisposed to the illness. Although, there is no guarantee that you will develop Celiac.

jerseyangel Proficient

I have 2 sisters, one has not been tested and the other came up negative. Unfortunately, the one who won't be tested is the one I suspect might be affected.

If both your biopsy and blood test came up positive, I see no reason for you to doubt your diagnosis. :)

kbtoyssni Contributor

My brother tested negative. He either doesn't have celiac or he doesn't have it yet. I'm sure he will get tested again if he ever starts feeling sick in any way. It's something for him to be aware of for the future.

lmvrbaby Newbie

Hi, I just thought I'd share that I had a biopsy for something unrelated and was told I was positive for Celiac and was followed up with a blood test. I have four boys, three of which have been tested and only one has been confirmed Celiac and he is also a juvenile diabetic. My fourth son was having stomache issues and we went to have him tested with a blood test and somehow the hospital lab didn't do that test, said it was unnecessary, how can they say that when the doctor orders it. I spoke my mind to the doctor's office and they are willing to redo this test at no charge, but why should my son go through having blood taken when it was not his fault? I have been thinking about changing his doctor, he has had this one since birth and the doc knows him well. it probably was Not sure what to do now. His stomache issues only lasted a couple of days and was probably only a virus. Well, I guess I voiced myself. Sorry for going off track. So I believe it can be possible for only sibling to have Celiac and not another.

SGWhiskers Collaborator

I don't remember where I read the article. It was a link from someone's post here. It had a lot of genetic information. One of the recommendations was that family members who test negative, can have their genes tested. If they test positive for the celiac genes, then they should have their blood retested every 3-5 years in order to catch the disease early. I'm glad your brother was negative. Mine got his testing done last week. I hope it comes back negative. (Then again, if it is positive, there would be an explaination for his tummy troubles).

Hope the diet is going smoothly for you.

SG Whiskers

luvs2eat Collaborator

I was the first to be diagnosed in my family (at age 48). I seriously recommended my sister (who has suffered her whole life w/ allergies and eczema and asthma) and brother to be tested... I really thought my sister would come up positive. Neither she nor my bro did.

One of my 3 daughter had symptoms, was tested, and is now gluten-free. The other 2 won't get tested cause they have no symptoms and don't want to give up wheat, etc.


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



Celiac.com Sponsor (A8-M):



Lauren-SAME Newbie
"I was diagnosed in mid-october this year. My brother was just tested (blood test) and his results were negative. does anyone know if this is common? for one to have it and the other to not have it? Also, can anyone tell me, should I consider being re-tested?

I had a biopsy for something totally different, and they said the results indicated that I should be tested for Celiac disease. I had a blood test which came back positive."

About 5 days ago, I had a blood test and it showed positive. The doctor said that nothing else would trigger the blood test unless it was Celiac. And yesterday, I was diagnosed with Celiac.

I think most likely, it's accurate, but if you're having doubts, then you should be retested.

I was doing research, because I'm knew to the whole Celiac thing, it's not healthy to switch from a non-gluten diet to a gluten diet, not to mention, one site said that you can gain weight easily. So if you're going to switch, just make sure you know your stuff.

Archived

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

  • 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 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.

    2. - 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.

    3. - 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.

    4. 0

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

    5. - 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.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,334
    • Most Online (within 30 mins)
      7,748

    johnfreirefr
    Newest Member
    johnfreirefr
    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
      @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
      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
      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
      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
×
×
  • 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.