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Liklihood Of Multiple Children With Celiac?

KSLMom

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KSLMom Newbie
KSLMom
Posted

Hi. This is all new to me. In a nutshell my daughter, 12, has been suffering since she was a toddler with celiac 'symptoms.' We've tried many remedies for her constant constipation, gas, bloating and pain. Finally, my S-I-L was officially diagnosed with celiac disease last year (I was under-educated at that point and neither the doc or myself considered celiac disease as a reason for her issues). Now the doctor is listening to me and is having my daughter go for a full celiac blood panel. She also wants my other children and husband tested. Is it common for siblings to all have celiac? My son is severe ADD and occasionally rashy. I've not tried a gluten free diet with him to alleviate some of his ADD symptoms. My youngest is always constipated like big sis, but with no pain or bloating. They are all in the 90th percentile size-wise, so if it is celiac, there are no growth issues. I guess I'm trying to prepare myself mentally of the prospect that they all could be positive. What is the likelihood that all 3 of my kiddos are affected (or even 2 of 3)? Does anyone else have more than one child diagnosed? Thanks! (I tried searching on this topic with no luck, feel free to post a link if this topic already exists)

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jny1179 Newbie
jny1179
Posted

Celiac is definitely genetic so if one child has it, it's very likely that the other do too. It's not 100% certain, but likely, since they all have varied symptoms. You might be surprised to find that your son with ADD does well on a gluten free diet, even if they don't find Celiac. Also, Celiac bloodwork is not always 100% accurate. Some people have spent years trying to get a diagnosis when bloodwork doesn't show a positive result. Don't go gluten free yet though, wait until the tests are done. Going gluten free begins the healing process and after a time can produce false negatives as well. Celiac is a tricky one to diagnose, and now they're beginning to realize that there's no such thing as a "typical" Celiac, the disease manifests itself outwardly in many many different ways.

I know it seems overwhelming right now but you've come to the right place. This is a great start for information and support. There are tons of people writing and talking about Celiac on the net, do a google search for gluten free blogs. Lots of great info on foods, tips about the disease, etc. Good luck with the testing and if they all come back positive, don't panic!! It's tough at first to find out you can't have all the foods you love anymore, but they will feel so much better in probably a short amount of time once they get the hang of the gluten free life.

jny1179 Newbie
jny1179
Posted

Oh, and another note. I spent most of my life constipated, gassy, uncomfortable. I also got rashes. I was diagnosed with Crohn's Disease 2 years ago via colonoscopy. I'm 29 now. I did not test positive for Celiac but after extensive research and a few trial runs, I went gluten free and it's made a HUGE difference. I feel great right now. I also avoid dairy. But that's getting into a whole other can of worms and you're already overwhelmed!

If you want, take a look at my blog, there are lots of links to other gluten free bloggers in the right sidebar as well.

www.alifeofsugarandspice.com

Jen

jny1179 Newbie
jny1179
Posted

ONE more note hahaha, sorry. I just realized that your sister-in-law would be their biological aunt, right? Duh, sorry it took so long to make the family connection. Your husband should definitely get tested and all your kids!

KSLMom Newbie
KSLMom
Posted
  • Author

ONE more note hahaha, sorry. I just realized that your sister-in-law would be their biological aunt, right? Duh, sorry it took so long to make the family connection. Your husband should definitely get tested and all your kids!

Thanks so much JNY....yes she is their aunt, my husbands sister. SIL also has graves and polycystic ovary syndrome. My oldest is having a work-up on everything auntie has. As a side note, we did go gluten free with 12 yo DD for a week. Her pain symptoms disappeared within 48 hours or so. She is eating gluten again pre-blood test. Which means delay in the result, because I'm not even bringing them for blood work until Monday. Anxious to get the results, but won't know for at least a week. Thanks again!!

taweavmo3 Enthusiast
taweavmo3
Posted

In our case, I have one daughter who was diagnosed first at age 3. I had my other two boys tested, they tested negative, but have responded well to the diet. At the time of testing, my oldest son was lactose intolerant and had Psoriasis at the age of 6. My youngest boy always had yellow, seedy stools, constant ear infections, and would just scream and moan every morning. I figured I had nothing to lose at that point, and put them on the diet too.

My youngest daughter has been gluten free from birth, but I was still eating gluten while breastfeeding. She had a horrible case of silent reflux from birth...I cut gluten and dairy out of my diet, and both she and I were much better! I get very sick with gluten now, and my anemia is corrected, so I figure they got Celiac from me. My husband also has suspicious symtpoms, and has gone on the diet as well. It's entirely probable that our kids have two Celiac parents and just didn't stand a chance : )

The genetic link is very strong...I would have all of your kids tested, then you could try the diet to see if their symptoms improve. Take small steps, the diet change has a huge learning curve, so just take one day at a time!

luvs2eat Collaborator
luvs2eat
Posted

I was diagnosed in my late 40s... the ONLY one in my family and extended family! My middle grown daughter was diagnosed about 4 years later, at 23. My youngest daughter has just been diagnosed at age 26... w/ celiac AND interstitial cystitis. I told the oldest, who had negative bloodwork when I was first diagnosed, to enjoy gluten now cause it appears celiac will show up sooner or later!

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seezee Explorer
seezee
Posted

This might be helpful?

Open Original Shared Link

It's an article from Scientific American on celiac disease and how it works.

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    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
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      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
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      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
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