Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Family History-Is It Relevant?


Pandoranitemare

Recommended Posts

Pandoranitemare Apprentice

I found out that my maternal grandmother had a history of stomach problems, and was eventually treated for diverticulitis (I am not sure what tests she had). Also my mother had been to the doctor and had been blood tested for celiac, which came back negative although sadly now she has an ulcer which has become cancerous (and inoperable) and in light of that, no further investigation has been taken as her stomach symptoms have been attributed to the ulcer.

This latest news about my family history does seem to point to a fairly strong chain of problems in the female line. In fact even my daughter said to me the other day about how annoying it is when her stomach gets bloated.

My fear now, is that, like my mum, my blood test will also be negative and I will be stuck in the IBS catagory, as my GP already said that it was probably IBS, but would test for celiac just to be sure.

I know I am jumping the gun, as I have not had the test yet, but I have read a lot about the blood test not even being that accurate, so I am getting quite stressed about it.

Could my family history be enough to persuade my GP to take things further even if my bloods are normal?...I know no one can answer that, but I guess I am asking, has anyone managed to get further testing with normal bloods based on a similar history?


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



Celiac.com Sponsor (A8-M):



squirmingitch Veteran

I'm going to say that you might do better with a GI than a GP doc. But even if your bloods turn up negative then you can always trial the gluten-free diet & see if it helps. For your daughter too.

GottaSki Mentor

Sounds both you and your daughter should have a celiac panel -- I'd add in all Bs, D, K, Iron, Ferritin, Copper and Zinc (these can show if you are having any problems absorbing nutrients due to intestinal damage).

If your celiac panels return negative, you could still have an endoscopy to see if there is blunting of your villi and/or have several biopsies taken. If possible this should be done by a gastroenterologist that specializes in Celiac Disease.

The alternative route is to remove ALL gluten from your diet to see if this improves your digestive symptoms and overall health. CAUTION: Do not stop eating gluten if you plan to undergo any of the above testing. Without gluten in your body -- the tests will all be negative.

Personally I am adopted, but if I had two generations of serious digestive disorders in my family I'd take a good look at gluten - removing it can not hurt you and may be the answer.

Good Luck!

HaileyRay812 Rookie

I think you should look into helicobacter pylori. It is spread very easily from person to person in a family and causes stomach problems. It also is the #1 cause of stomach ulcers, like your moms. It is treated with 3 rounds of antibiotics.

Pandoranitemare Apprentice

I did go gluten free for a week, as I thought it may be the problem, and certainly did start to improve, but I read about having to continue eating it if I was to be tested, so went back on it and book in with the doctor, who has now got me on a gluten challenge for 4 weeks (because I was gluten free for a week 3 weeks ago) just to be sure I have as much gluten as possible in me before the blood test.

So I do think that going gluten free helps, and right now I would do anything for a bowl of gluten free pasta!

I am waiting to see the results before I push things further, but the more info I have the better.

I don't want to freak my daughter out at this point, as she has already inherited one faulty genetic condition from me! It really upsets me to thin I may have passed on another, especially if it turns out to be celiac (thats a hard one for teens I am guessing)...I think I will cross that one once I know more about myself, and if there is a real chance she could have something too. Also she is in the middle of exams, and I don't think it is a good time to worry her with it until I have some answers.

Thanks for all the great input, and I will definitely look into the the Helicobacter pylori too, I never knew about that one at all.

squirmingitch Veteran

Sounds like you're on the right track Pandora (love your screen name BTW). Good luck & let us know what the test results reveal.

GottaSki Mentor

Glad you are already getting the testing underway.

I know it is not possible to worry about our children - but remember IF your daughter is celiac she will feel better once gluten has been removed. The transition is not easy - but my 18 yr old son went gluten-free at 15 and aside from maybe one or two slips when everyone else was eating pizza he has adjusted as well as me. Your daughter will prefer that bowl of gluten-free pasta right along with you ;)


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



Celiac.com Sponsor (A8-M):



Pandoranitemare Apprentice

Sounds like you're on the right track Pandora (love your screen name BTW). Good luck & let us know what the test results reveal.

Thank you :)

My blood test is at the end of March, and I will be sure to post with the results.

I know if I my test is positive I will have to get my daughter tested. Even if it is negative, I can gently suggest that she joins me going gluten free when I go back to it, and see if it helps her too, and she can judge for herself if she sees an improvement in her own bloating etc.

You have all been so kind and helpful, I would seriously be going out of my mind by by now without this forum. Doing this challenge and having to wait so long to get the tests is quite hard...mentally and physically. Having people here just to answer those nagging little questions, to discuss the what ifs, and for general support...you guys are amazing :)

squirmingitch Veteran

I echo your sentiments. If not for this board I would be going crazy too. I would doubtless still be glutening myself not knowing all the hidden places where gluten lurks. I would not know about the iodine connection with dh. And, oh, about a couple hundred other things I have learned from these good people.

Just hang in there & don't hesitate to post here if you need to vent some while waiting for the end of March to arrive.

And don't worry about your daughter. From what I've read here kids are all too happy to be gluten-free when they understand how much better they will feel or when they give gluten-free a trial & discover for themselves what gluten was doing to them.

I hope you get your diagnosis.

GottaSki Mentor

You have all been so kind and helpful, I would seriously be going out of my mind by by now without this forum. Doing this challenge and having to wait so long to get the tests is quite hard...mentally and physically. Having people here just to answer those nagging little questions, to discuss the what ifs, and for general support...you guys are amazing :)

Celiac diagnosis is tough on anyone...there are so many different facets to Celiac that it is often mis-diagnosed and even when one is lucky enough to have "classic" symptoms or a doctor that thinks to run the Celiac Panel -- it remains a very difficult process to be diagnosed...followed by even more confusion as one learns the ins, outs and allovers of gluten in our society.

You have found the right place vent and/or get any question answered. I know I would have lost it during the first three months gluten-free if not for everyone's help on this board. It truly is a place where people pay it forward on a regular basis.

Hang in there :)

Pandoranitemare Apprentice

Thank you all so much. I really appreciate the support, advice and kind thoughts.

I am so glad to have found this site, and that I took the plunge to sign up and post.

I have been around the Internet, and around forums for a good few years, but can honestly say this is the most friendly, welcoming and helpful one I have ever had the pleasure of finding.

I really appreciate you all for taking the time to respond and hope that one day I can return the favor in offering support.

:)

Retrotea Newbie

ceiliac disease is hereditary.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,179
    • Most Online (within 30 mins)
      7,748

    Jay36
    Newest Member
    Jay36
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      Hi @trents, You're correct. The OP mentioned fatigue and vitamin deficiencies as the only symptoms at the time of diagnosis. Since the family are not taking him/her seriously and find them to be too fussy, I suggested showing them pictures of dermatitis herpetiformis as one of the consequences of not taking the gluten-free diet seriously ... would make life easier for him/her, and the family might begin to take his/her strict gluten-free diet more seriously. A picture says a thousand words and the shock factor of dermatitis herpetiformis blisters might have the desired effect. The OP did say ... "How do you deal with people close to you who just refuse to understand? Are there any resources anyone could recommend for families that are short and easy to read?".  @sillyyak52, It might also help mentioning to your family that Coeliac Disease is genetic and runs in families. Any one of them could develop it in the future if they have the HLA DQ 2.5 gene. Here's a Mayo Clinic study calling for screening of family members of Coeliacs ... https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-celiac-disease-screening-for-family-members/ https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-study-calls-for-screening-of-family-members-of-celiac-disease-patients/ I got glutened a few months ago because I missed the may contains statement on a tub of red pesto. It was my own fault but it happens.
    • peg
      Thank you, Scott!  This is just what I needed.  Appreciate your site very much and all of your time and energy that goes into it! Kind Regards, Peg
    • Hopeful1950
      Oh yes.  I would never recommend taking it for an extended period of time.  When 70% of my body was covered in blistering itchy sores, an amazing doctor prescribed it diagnostically because I was unwilling to do a gluten challenge after already going strictly gluten-free in desperation after 10 years of suffering and being poo pooed by dermatologist after dermatologist. The fact that it stopped the itch and mostly cleared the rash after about 2 months was diagnostic for him.  I stopped it and have remained strictly gluten-free with very few flares since that time (over 10 years ago).  So the fact that it cleared the rash was diagnostic for me.     
    • Scott Adams
      The link is in my signature block, but is:  
    • peg
      Hi Scott, You mentioned in your response that you have been taking supplements long term.  What brand(s) do you take?  I ask because I've had a very difficult time finding truly gluten free supplements that have not made me sick over time from allowable trace amounts of gluten within the FDA's acceptable limits. Thank you, Peg
×
×
  • Create New...