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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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    • 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 
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      By xxnonamexx · Posted

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      By Florence Lillian · Posted

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    • Russ H
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      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
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