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

No One On Moms Side Has Celiac

jasonD2

By jasonD2
in Coping with Celiac Disease

Recommended Posts

jasonD2 Experienced
jasonD2
Posted

This is lousy for me to say but I am almost disappointed that none of the women on my moms side have celiac...they all just got tested. I feel like im all alone in this and still dont know where its coming from..I guess my fathers side? Why am I the only one that got the bad side of the stick? sorry for sounding horrible

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

Celiac.com Sponsor (A8-M):


burdee Enthusiast
burdee
Posted

Hi Jason:

I can think of worse things ... like fighting 5 parasites at the same time. You've been through the wringer with gut infections. With celiac disease, 6 food allergies, after 5 bacterial, 2 parasitic and candida infections, tracing who gave me celiac disease is the least of my worries. I pm'd you about my latest (acid production test results, treatment for h. Pylori and ongoing battle with d-frag). My new doc also recommended a good doc in NYC who deals with stomach acid, intestinal critters and food allergies, after I told her I had a friend 'back East'. (I have no idea where you live, but you mentioned relatives in FLA.)

SUE

ravenwoodglass Mentor
ravenwoodglass
Posted

This is lousy for me to say but I am almost disappointed that none of the women on my moms side have celiac...they all just got tested. I feel like im all alone in this and still dont know where its coming from..I guess my fathers side? Why am I the only one that got the bad side of the stick? sorry for sounding horrible

Not everyone who has the celiac associated genes will develop the disease. Where you got the genes from is not all that important. The important thing is you are doing the best you can to overcome the issues that you have. There is also the issue of false negatives on testing. If family members have health issues just because they had a negative blood test doesn't mean they don't have celiac.

I hope you are feeling better yourself by now and kudos to you encouraging your loved ones to be tested.

Skylark Collaborator
Skylark
Posted

I understand you're looking for a little validation, but of course it's good news that others in your family are not celiac. With celiac, there seems to be a necessity for a triggering event. In your case it could have been the Giardia infection. Developing celiac seems to take some time so the blood work does not always come back positive for celiac right away.

Everyone with a chronic disease asks those kinds of questions. Feeling like you got the short end of the stick sometimes is normal but you have to find a way of avoiding feeling that way all the time. It's a really hard, painful way of looking at things, to make yourself out to be shortchanged. I always feel better if I focus on the positive aspects of my life rather than the celiac diet (and my asthma and frequent bronchitis).

Gemini Experienced
Gemini
Posted

This is lousy for me to say but I am almost disappointed that none of the women on my moms side have celiac...they all just got tested. I feel like im all alone in this and still dont know where its coming from..I guess my fathers side? Why am I the only one that got the bad side of the stick? sorry for sounding horrible

Jason....just because no one tested positive on the antibody test, doesn't mean they don't have Celiac. It could be a case of latent Celiac or silent Celiac with negative antibody testing. Happens all the time. You are supposed to be tested at least every 2 years, with a diagnosed family member as history. If they think that they can have 1 blood test and call themselves safe, it doesn't work that way.

The smarter thing to do would be for them to do gene testing, along with the antibody testing, for obvious reasons. What about your father's side of the family? Is your father living?

Mari Enthusiast
Mari
Posted

Sorry you are feeling 'down' but if you have a copy of the test which showed the DQ8 it would tell you if you inhertited one or two copies of that DQ gene. We get one from our mom and one from our dad as you know. The DNA genetic marker test is easier to read but if you had the molecular serology test from Prometheus Labs it is harder to intrepret but you can post the results here and maybe we can help you figure it out.

jasonD2 Experienced
jasonD2
Posted
  • Author

Oh no what i meant was they dont have the genes for celiac

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

Celiac.com Sponsor (A8-M):


kareng Grand Master
kareng
Posted

Oh no what i meant was they dont have the genes for celiac

Odd. Isn't this the side of your family with all the GI issues? Maybe you were found on the doorstep? :)

ravenwoodglass Mentor
ravenwoodglass
Posted

Oh no what i meant was they dont have the genes for celiac

Neither do I. ;)

I sure do have celiac though. :)

Your DQ8 may have come from your fathers side. But you can have celiac and not have either DQ2 or DQ8.

Archived

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

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

  • Member Statistics

    • Total Members
      132,919
    • Most Online (within 30 mins)
      7,748
    globello
    Newest Member
    globello
    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

    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
×
×
  • 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.