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Diem

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Diem Rookie
Diem
Posted

Hello, I just found this forum today and already am so happy that I did. Yesterday I had blood work drawn for Gluten and also a long drawn out icky lactose test that made me so ill (still trying to recover from that one.) I have never been diagnosed with Celiac or a lactose intolerance but for years now I have been dealing with so many symptoms that have resulted in nothing in and of them selves but when put together they very much resemble Celiac.(For years I have been thinking it's n my head and have even said forget going to the Dr they never give me any answers) My GP failed to tell me that the lactose test was five hours long and also did not tell me how long I had to wait for results (I know I should look for another GP) These are not my questions just a little rant. 

 

My question is this; My husband also had a test done yesterday through his dermatologist because of a rash on his elbows he has been dealing with for some time now and they are testing for dh. Is it likely that if we both test positive that our children will too? How many of you have relatives that also have Celiac (parents, siblings) I feel that they will test positive, as well as all three have always exhibited lactose intolerance and digestive issues and out youngest having dental issues like myself. This is all very un-nerving and I'm stressed over the changes we will have to make. If it was just me I'd handle it but to have to monitor a whole household, how do you do that? 

 

Thanks.

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SMRI Collaborator
SMRI
Posted

Your children have a very high chance of being Celiac if both of you are Celiac. While it's not fun having Celiac, it's a lot easier if everyone in the house is gluten free.  You should probably get appointments for them to get tested--and then cancel if you and your DH both come back negative.  I think most of us have a relative that is at least gluten sensitive. 

nvsmom Community Regular
nvsmom
Posted

Welcome to the board.   :)

 

Technically, a person's chance of having celiac disease is 1 in 133 BUT it is much much higher if a first degree relative has celiac disease. If you or your husband have celiac disease, then your kids will have a 1 in 10, or a 10%, chance of having celiac disease.  That's the sats but I find that some families are higher and some are lower.  It seems that all, or almost all of the kids get it or none do. It is not a set 1 in 10 chance.  And remember that they can develop celiac disease at any time in their lives so they will need to be retested every 2 years or so, if they continue to eat gluten, for the rest of their lives; sooner if symptoms develop.

 

I have celiac disease. On my dad's side, my dad's aunt has celiac disease as well as my cousin. On my mom's side, my cousin has it. On both sides of the family there are lots of autoimmune diseases like RA and thyroiditis.  My three children tested negative (doctors would only run one test - ttG IgA) but two of them had symptoms so I made our household gluten-free, and their symptoms improved a great deal. I don't know if they have celiac disease or non-celiac gluten sensitivity (NCGS) but they do better gluten-free so that's the way we eat.  Our home is gluten-free,and to be honest, I think a 100% gluten-free home would be easier to handle than a mixed home - safer too.

 

Going gluten-free is tough in the first couple of months. Finding new brands to trust and getting used to reading labels takes some time, but once you've done it a couple of months it becomes easy.  To be quite honest, the only time it is a hassle is when we eat at other people's homes (most people don't know how o cook for us safely so I always bring food).

 

These are the celiac disease tests:

  • tTG IGA and tTG IgA - tissue transglutaminase - most common tests
  • DGP IgA and DGP iGG - deaminated gliadin peptides - newer tests that are good for kids
  • EMA IgA - endomysial antibodies - very similar to the tTG tests, detects more advanced damage
  • total serum IgA - a control test
  • AGA IgA and AGA IGG - antigliadin antibodies - older and less reliable tests that were replaced by the DGP tests

Get as many done as possible because false negatives do happen.  Don't stop the gluten until all testing is done.

 

Good luck!

Diem Rookie
Diem
Posted
  • Author

Thank you for the comments. I agree a 100% household probably would be easier than just a single person. I guess my concern was more towards having to get them to be gluten free not only at home but when they are not with me. They are teenagers and it's hard to monitor when they are in and out all day, friends, parties, outings. I suppose I just have to impress upon them how improtant it is. Their dad is already giving me the pouty face when I told him he couldn't buy certain items when we went grocery shopping the other day, ugh.

Thanks for the advice and I will set up appts. asap for them to be tested. Still waiting on my results as well as the hubsters. My GP said our next step was the endoscopy, so I will set that up as well. Thanks again.

nvsmom Community Regular
nvsmom
Posted

I dreading the teen years and loss of food control I'll have over my boys.  Good luck with your kids!

mandykeily Newbie
mandykeily
Posted

Yep, there is definitely a genetic component.  My mom has celiac, and so does my great uncle.  I haven't been diagnosed yet, but I believe I have it as well.

1desperateladysaved Proficient
1desperateladysaved
Posted

Welcome!

 

A celiac diagnosis can be overwhelming for a while.  But you are doing the right thing; you are learning about it.  You can learn how to do the diet, and in time you can lose your symptoms!  A long healthy life is possible if you avoid gluten.  I think living with the diet is much easier than living without it.

 

Best wishes for your healing.

 

Dee

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