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Family Decission?


AmandaL

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AmandaL Newbie

Hello everyone. I am new to this group and looking for some help. Here is the story.

I have a newley diagnosied two year old and my husband and I are thinking of having another baby. But here where the our concerns start. I do not have Celiac neither does my husband but our family is full of Thyroid, Depression, Diabetis ect. (The specialest told us these are the factures that created our daughters Celiac).

So, does anyone know if our next child will have Celiac?? I have talked to a few other people and they are telling me that there is 99% chance that the next will have Celiac also.

Can anyone help????

Thanks for your help with this issue.

Amanda Lonson

Alberta, Canada


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psawyer Proficient

No, the chances are not 99%. The chances that a first-degree relative of a known celiac will also be a celiac are about 1 in 10, as compared to 1 in 133 in the general population.

There are many cases where in a family with multiple children, only one has celiac disease.

The genetics are a factor, but it is also known that a "trigger" is needed to activate the gene. Many people have the genes, but never develop celiac disease. There are even cases of identical twins where one has celiac disease and the other does not.

While autoimmune diseases do tend to occur together, the specialist who told you that those other conditions in your family caused your child to be celiac is just plain WRONG.

By all means you should go ahead and have another child.

ARK Apprentice
Can anyone help????

Even if the chances of another baby having celiac WERE 99% (which I seriously doubt) I wouldnt let that stop me from having another blessing!

Honestly, avoiding gluten is not the end of the world! It gets easier too and I dont know how long you've been dealing with this with your child, but I PROMISE that it will eventually become second nature and not nearly so overwhelming.

We discovered after a year of sickness that our then 13 yr old son couldnt handle gluten or soy. Now, 3 yrs later he is doing really well!

Now, it's our daughter's turn. She is 12 this year, and has been sick over 3 months. Of course, my first thought was "GLUTEN!" since she has not been eating gluten-free like our son.

We took her off gluten for a month and she remained sick, with a FEVER every single day. It didnt seem to make a difference, so we gave up on the gluten idea and started going to doctors. Four doctors couldnt figure out why she has a fever every day... Finally, in desperation we took her off gluten again, and all the stomach issues cleared up but she is still running a fever DAILY since the middle of March!

I am hopeful that it is just taking her longer to recover from the gluten and that the fever will eventually go away.

The good news is that it didnt freak me out to think she'd have to be gluten free too as I had already gone through all that with our son.

YOU CAN DO IT! Even if your next child is gluten intolerant/celiac, it's not the end of the world. :)

jmjsmomma Apprentice

I certainly wouldn't let Celiac Disease stop me from having another baby if that is your hearts desire. My 5 year old was diagnosed six months ago. My 4 year old tested negative and has no symptoms at all. My 2 year old had to have the gene test because of her age and something weird popping up on her celiac panel and she is all clear and will never develop celiac disease. My 4 year old may or may not.....at some point we may do the gene test with him but it is not currently necessary. All that to say.....I agree with the previous poster. It does get easier and easier.

Maiko Newbie
While autoimmune diseases do tend to occur together, the specialist who told you that those other conditions in your family caused your child to be celiac is just plain WRONG.

By all means you should go ahead and have another child.

I agree with psawyer, that specialist is wrong.

I have 2 boys that were diagnosed after biopsies; my youngest was 18 months (2 months ago) and 5 years old. I just got the results from my 3rd child's genetic test - she has the genes for it but currently doesn't have any symptoms.

I'm 25 weeks pregnant with baby #4, it won't matter if he/she has celiac disease because the rest of us will be enjoying a gluten free lifestyle. The frustrations that I'm dealing with wouldn't keep me from the opportunity for another blessing. I want to encourage you to go for it!

shayesmom Rookie

The amount of misinformation that some doctors spread is just beyond scary at times. I also wonder if they ever have a class on translating medical terminology into simple English in order to assist their patients in understanding their conditions.

The conditions you mentioned are all conditions which often precede, or occur in conjunction with a Celiac diagnosis. And there are some who would argue that being gluten-free could prevent these medical conditions entirely.

You and your husband may not have Celiac, but one of you most definitely passed the genes on to your daughter. I believe that about 30% of the population has at least one Celiac gene. So it's not that uncommon. Most people with the genes do not develop the disease. But in families where someone has it, the odds of others developing it are much higher. Still....it's not a 99% chance. Psawyer has the numbers correct on this.

I know that a Celiac diagnosis is tough to deal with in the beginning. There's a huge learning curve and quite a bit of anger and denial at some of the sacrifices that need to be made. But this all passes. I find your question to be an interesting one. Should you have more children? Both of you come from families full of diabetes, thyroid and depression issues. Are those diseases a more preferable risk (perhaps because they are familiar?)? Personally, I'm okay with a disease which is completely managable at home, without drugs.

And what will you tell your daughter when she grows up? Will you counsel her to not have children because she actually has the disease and may pass it on to your grandchildren? Will she grow up feeling that this disease is more a burden on you than on her?

Personally, I think that you should take a bit more time to understand what Celiac is and how it's handled before making this decision. You will hear this ad nauseum on this site, "The diet is tough in the beginning, but within a year, it becomes second nature". And it is so true. Truly, Celiac is not so awful that it merits giving up plans for a family. Don't let fear of a disease rule your decision. You didn't the first time. Any regrets? :)

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    • deanna1ynne
      And thank you for your encouragement. I am glad that her body is doing a good job fighting it. I also just want clarity for her moving forwards. She was only 6 for the last round of testing and she's 10 now, so I'm also hoping that makes a difference. It was weird during her last round of testing though, because right before her biopsy, we'd upped her gluten intake by giving her biscuits made from straight up vital wheat gluten, and her labs actually normalized slightly (lower ttg and her ema went negative). Bodies just do weird things sometimes! lol
    • deanna1ynne
      The first negative biopsy in 2021 just said "no pathological change" for all the samples, and the second one in 2022 said "Duodenal mucosa with mild reactive change (focal foveolar metaplasia) and preserved villous architecture." So I think Marsh score 0 in both cases, though it's not actually written in the pathology reports. I'm really hoping to get a clear positive result this time, just for her sake.  
    • Wends
      Hopefully the biopsy gives a conclusive and correct diagnosis for your daughter. Im in the UK and have been in the situation a few years ago of trying to rule celiac in or out after inconclusive results. Many symptoms pointing to it including the classic symptoms and weight loss and folate and iron deficiency. You have to play a waiting game. I also had the label of IBS and likely food allergy. Genetic test showed low risk for celiac but not no risk. It sounds like the Gastroenterologist is on it and hopefully will diagnose what it is correctly. Food hypersensitivity (allergy) can also cause similar symptoms and inflammation as well as mimicking IBS. Milk / dairy and wheat (cereal grains) being the biggest culprits. The “oesophagitis” and “gastritis” you mentioned can be caused by another gastrointestinal disorder called “eosinophilic gastrointestinal disorders”. These are named depending on which part of the gastrointestinal tract is affected. For example eosinophilic oesophagitis, eosinophilic gastritis, eosinophilic gastroenteritis, and more rare eosinophilic colitis. They are antigen (allergen) driven. When the blood test measuring anti-ttg antibodies is positive in absence of a positive ema test - which is more specific to celiac, this can also suggest food hypersensitivity (allergy). Usually delayed type allergy similar to celiac but not autoimmune if that makes sense. In this case the ttg antibodies are transient. Which happens. I’ve first hand experience. For info, evidence of villous atrophy too can be caused by food hypersensitivity. Not just by celiac disease. In Egid disorders the six food elimination diet, under a dietitian and gastroenterologist care, is the dietary protocol to figure out the culprit or culprits. Sometimes only two food elimination diet is used at first. The number one culprit is milk protein / dairy. Followed by wheat, eggs, soy, fish and seafood, and nuts. Most are only reactive to one food group or two. Most are only reactive to milk. Hope this is a helpful reply.
    • Bennyboy1998
      Yes gene HLADQ2 was positive 
    • Wends
      Wow, the system is crazy isn’t it? Maybe switch Doctors if you can. It’s surprising from what you’ve written it seems obvious it’s celiac disease. The “potential” diagnosis means celiac is developing and it basically just hasn’t done enough gut damage to be captured on the biopsy yet, and meet that “criteria” to satisfy the current system! Given the overwhelming evidence already - family history, positive ttg and ema. And your own experience and intuition which counts far more. And the labs being reproduced after gluten elimination and reintroduction- elimination and reintroduction diet is the gold standard too. Shame on the Doc and the system. What was the Marsh score? I’m guessing not 0 if it’s potential celiac. Meaning the autoimmune process has been triggered and started. Your daughter is obviously very healthy and her immune system is putting up a good fight. It can take years for the gut damage to build to a point where there’s overt symptoms and then a conclusive diagnosis, hence why many celiacs receive diagnosis later in life. You can prevent it. See the positive and the gift in that. Hopefully the gluten challenge confirms it, but if it doesn’t maybe get a second opinion?
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