Children Of Celiac Mothers... What Kind Of Testing Is Sufficient?

[Kate35]

I was diagnosed with Celiac Disease a couple years ago. Have been on a very strict gluten free diet ever since... Tested my kids immediately for antibodies and neither of them was positive. Now, I do notice that their bellies get bloated after a big spaghetti dinner, but it could be just me watching them a bit too closely... My oldest has asthma and multiple food allerges and while i think it is better for him not to eat gluten I am concerned that his diet is restricted as is... What do you guys do? If the kids have negative bloodwork, do you still keep them on gluten free diet so that they don't develop it in the future? Other grains are not enriched and I am just concerned about giving them gluten free bread sandwich because it is lower in nutritional value...

I am torn... On one hand, I think it is better to stay gluen free if they are at risk for celiac disease , but on the other hand I am concerned about their nutrition and unnecessary restricting their diet.

My other question is something I have been researching for awhile but still could not find a clear answer to. For those of you who have been diagnosed later in life, do you think we have been sick all our lives but just went through some periods of remission

or/and denial? When I think back to my childhood, I remember that I did go through some periods of "stomach problems", but they were minor and I was never skinny or otherwise unwell... Then I miraculously got better until I got really sick with this mysterious illness that a number of doctors could not diagnose for some time until one doctor decided to perform an endoscopy looking for some kind of weird ulcer and in turn found a celiac disease. So I am just wondering if in fact I have had this disease all my life... What are your stories? Can you just get sick in a fourth decade of life? Or does it have to lay dormant waiting for a perfect moment to manifest itself? I think I was a perfectly healthy young woman in my 20's, eating all kind of junk food and never once do i recall

feeling sick... Does it mean I was healthy then or does it mean that I was a celiac without symptoms? Thanks in advance

[MitziG]

If it has been a few years, the kids should be tested again. Make sure they do a full panel, not just ttg. I can't answer your question because both my kids also have celiac.

For myself, I know I had it as a child as I used to vomit fromm eating wheat. I was told I couldn't tolerate high fiber and would outgrow my "wheat allergy" as a teenager I had a few good years. When I was 17 I got mono and that seemed to trigger the stomach issues and vomiting again. They did an upper GI and couldn't find anything, said I probably had small ulcers they couldn't see. I threw up all the time and was super tired for a few years. The stomach issues slowly seemed to resolve and in my early 20's I felt pretty good. Pregnancy at 25 seemed to trigger it again as I was so fatigued I couldn't enjoy my new baby. I also seemed to get every bug and virus that came around, I was never not sick and tired for the next 12 years until my diagnosis.

Celiac is a finicky thing. It can wax and wane throughout your life. Chances are good you had it as a child too, and it went into a "silent" stage for awhile. Your kids are very likely to develop it as well.

If it were me, I would be rigourous about testing every year and watchful for symptoms.

As for what to feed them- that's a tough call that only you can decide.

[nvsmom]

I too would have the kids checked if it's been a couple of years since their last test... just to be more sure.

I had my kids tested, and they came back negative. I suspect my oldest and youngest might have some food issues though, so I thought it safest, and simplest, if our entire house went gluten-free. We've been moving towards being totally gluten-free for a month now, just one box of Cheerios to finish off (I swear they are rationing it - LOL) and we are gluten-free. If they want to try gluten when they are buying their own food as they near adulthood, I'll be on board with that but I'll push them to get tested after the first 6 months and then every year or so after that.

We have been reducing our wheat consumption for a year before I was diagnosed so it's not a huge switch. I started cutting back after reading Wheat Belly, which is an AMAZING book, which points out how wheat is no longer very healthy for people since it has been changed sooo much. It's chromosomal number has approximately tripled in the last 100 years... how can it still be called wheat? In my opinion, the only healthy part of whaet is the enriched part, and my kids can take a multivitamin for that. As for the fibre, I add flax meal into everything I bake, and it is purely protein, fibre and a bit of fat... much healthier than flour so I feel good about it.

... Wheat Belly really is a good book, and well written (I was laughing out loud at a health/diet book). I recommend reading it.

As for you second question, I was diagnosed as an adult but I am certain that I've had since I was very young. My mom has told me how I was extremely constipated as a baby ("solid" wheat gruel was introduced before I was a month old) and I remember having problems with that as a child to the point of crying for half a day in discomfort. I also has frequent stomachaches as a child. I actually asked to be taken to the doctor when I was in early elementary school because of my stomachaches (not like me to do that); the doctor dismissed me as someone who gets stomachaches after I eat... I was told to lay down after eating and eats TUMS or Peptobismol.

I had years where my stomachaches were less frequent but I mostly learned to ignore it. Eventually migraines started; I ignored those too since pain meds usually didn't touch them. In my 20's joint pain started too. After having kids, I started getting the big painful bloat in the evenings, which was harder to ignore since my pant size would change radically in less than an hour. I was getting mistaken for being pregnant and I'm not that big... if I lost 20 pounds I would be at my varsity sports playing high school weight.

So, I am almost sure I've been sick my whole life. I had periods where the symptoms bothered me much less (like in high school), but my symptoms have been getting worse as I get older. I think it kicked off other AI diseases too by living in such an inflamed state; I have ITP (AI attack on platelets) which almost killed me when I was a young adult, and I developed hashimotos somewhere along the way (guessing 15-20 years ago). I also suspect I have a connective tissue AI now, but I'm not sure on that. I wish I had a magic ball so I could see what my life would have been like if I was taken off wheat as a baby...

[frieze]

Tested my kids immediately for antibodies and neither of them was positive. Now, I do notice that their bellies get bloated after a big spaghetti dinner, but it could be just me watching them a bit too closely... My oldest has asthma and multiple food allerges and while i think it is better for him not to eat gluten I am concerned that his diet is restricted as is..

1) Have you seen the results, or just got the report they were negative?

2) If it has been more than a year, they need testing again.

3) Why is is diet restricted already? perhaps losing gluten would actually help with that?

4) The enrichment issue is really moot, IF you are eating a good, well balanced diet, grains should not be a huge part of your diet.

5) Are you willing to stunt their growth?

[Roda]

I had both my kids blood tested after I was diagnosed also and they were both negative. Oldest boy has been tested annually up till last year and was always negative. He also had a negative scope. Youngest was retested 2 years after initial test due to symptoms and he was positive. Oldest one went gluten free last year due to continued symptoms and it has made a huge difference. He may not have a celiac like his brother and I but is non celiac gluten intolerant and reacts just as bad as his brother and I. I don't really find the diet restrictive, just inconvenient at times. With a little planning, when it comes to the kids, it has turned out fine.

[Kate35]

Tested my kids immediately for antibodies and neither of them was positive. Now, I do notice that their bellies get bloated after a big spaghetti dinner, but it could be just me watching them a bit too closely... My oldest has asthma and multiple food allerges and while i think it is better for him not to eat gluten I am concerned that his diet is restricted as is..

1) Have you seen the results, or just got the report they were negative?

2) If it has been more than a year, they need testing again.

3) Why is is diet restricted already? perhaps losing gluten would actually help with that?

4) The enrichment issue is really moot, IF you are eating a good, well balanced diet, grains should not be a huge part of your diet.

5) Are you willing to stunt their growth?

No, I saw the results- they were unequivocally negative. My only concern with the true validity of the results was the that they were on a "semi gluten free diet" at a time meaning they were eating very little gluten and mainly in school... I am just not sure what the healthiest diet for them would be... I mean nutrition wise you cannot even begin to compare multigrain whoe wheat bread to any

gluten free bread out there... And I just feel that I am limiting ther diet by that. They have multiple food allergies already: dairy, fish, tree nuts so excluding wheat seems brutal (especially if unnecessary). My oldest son also as asthma and is the shortest kid n a class... I know thes all could point out to gluten, right?

[nvsmom]

I am just not sure what the healthiest diet for them would be... I mean nutrition wise you cannot even begin to compare multigrain whoe wheat bread to any

gluten free bread out there... And I just feel that I am limiting ther diet by that. They have multiple food allergies already: dairy, fish, tree nuts so excluding wheat seems brutal (especially if unnecessary). My oldest son also as asthma and is the shortest kid n a class... I know thes all could point out to gluten, right?

I think the gluten-free buns I make my kids for lunch are healthier than whole wheat buns in the store... by far. I use a microwaveable bun recipe that I found on this board and modified:

Microwave gluten-free buns

• 
  
  
• 2 Tbs brown rice flour
  
• 1 Tbs golden flax meal
  
• 3/4 Tbs coconut flour (substitute 1 Tbs almond flour if wish)
  
• 1/2 tsp baking soda
  
• 1/2 tsp sugar
  
• dash salt
  
• 1 egg
  
• dash cinnamon
  
• 1 tsp whey protein powder (not needed)
  

Grease small microwaveable (custard) dish. Beat egg. Add dry ingredients. Mix well. Scrape sides and smooth top. Microwave on high for 85-90 seconds.

The bun has more protein and fibre than your average slice of bread.

Celiac can stunt growth. I stopped growing in grade six. Luckily I have HUGE people in the family so I reached a good height before stopping suddenly. I am worried about my eldest son's growth now... He too has mild asthma, allergies (like tree nuts), mild Aspergers and his growth is slowing; he used to be taller than average and now he is shorter than average. He's dropped about 50 percentiles in height. I'm getting his thyroid and growth hormones checked, but I'm also cutting his gluten. Conevience (wheat) foods aren't worth the chance that I'm stunting his growth by feeding him foods that don't agree with him.

Cutting out wheat, barley and rye is only cutting out three foods of thousands, that have been so genetically engineered that our great-grandparents wouldn't recognize them. It's not a huge loss. For example, do you regularly feed your family leechee nuts, mahi mahi or sea greens? That's three foods that are probably missing from your diet too... It's just that we have been so brainwashed to think wheat (and Milk) is essential to our diet by the government (who was swayed by the agricultural and dairy communities) that it's hard to let go of that idea. Dairy and agricultural lobbiests made the food pyramid as it is today... not science. We really don't need wheat, we're just so used to having it that we assume it's essential... KWIM?

I still feel that way about milk. We eat so much dairy in cheese and yogurts that I'm having a hard time cutting it out of my diet, and my son's, even though we both get stomach issues from it. I know I could live without it because drinking the milk from another animal is sort of weird if you stop to think about it (LOL), but I'm having a hard time adjusting my thinking to that way. It's just another way of thinking.

Anyway, I wish you well on the diet, and if you choose to put your family on the gluten-free diet(even as a trial) I hope you have good luck with it and get some clear answers.

[MitziG]

Reading your last post about the multiple food allergies and height issues...bingo. do one more celiac panel- if it is still negative go 100% gluten-free anyway. I bet you anything you see those other food allergies and asthma gradually go away, and I bet your son starts growing. I hate the thought of any kid going through a lifetime of weird health issues that almost definitely could have been solved by being gluten free.

[jlaw]

Hi all, I am wanting to ask a question about the annual testing - I'm assuming this refers to the celiac panel? I've been wondering about having my kids do the genetic testing instead. My understanding is that +ve genetic background + diet high in gluten is a major factor in developing coeliac disease. I have known I was gluten intolerant since starting solids as a baby. My mum looked after me so well but left to my own devices, I believe I unwittingly sabotaged my own body and perhaps turned my own intolerance into full blown coeliac. So if my kids are +ve, I'd start being a lot more careful with them, but also don't want to limit their diet and cause awkward social issues for them if not necessary. (Not that I load them with wheat now...) Hopefully that way, they would be gluten restricted but would also be able to tolerate a little gluten without getting awfully sick. Hope this makes sense? Appreciate any insight....

[Kate35]

Hi all, I am wanting to ask a question about the annual testing - I'm assuming this refers to the celiac panel? I've been wondering about having my kids do the genetic testing instead. My understanding is that +ve genetic background + diet high in gluten is a major factor in developing coeliac disease. I have known I was gluten intolerant since starting solids as a baby. My mum looked after me so well but left to my own devices, I believe I unwittingly sabotaged my own body and perhaps turned my own intolerance into full blown coeliac. So if my kids are +ve, I'd start being a lot more careful with them, but also don't want to limit their diet and cause awkward social issues for them if not necessary. (Not that I load them with wheat now...) Hopefully that way, they would be gluten restricted but would also be able to tolerate a little gluten without getting awfully sick. Hope this makes sense? Appreciate any insight....

I actually was wondering about the same thing. I am praying every day that my kids don't develop celiac , and I am thinking of going completely gluten-free to minimize ther risk f developing celiac later in life. However, other people are telling me that this approach might actually backfire and they could develop sensitivity to gluten if they don't ingest gluten on a refuse basis... I wish I had a clear answer..

[jlaw]

I actually was wondering about the same thing. I am praying every day that my kids don't develop celiac , and I am thinking of going completely gluten-free to minimize ther risk f developing celiac later in life. However, other people are telling me that this approach might actually backfire and they could develop sensitivity to gluten if they don't ingest gluten on a refuse basis... I wish I had a clear answer..

Hi Kate - I never even thought of that side of the equation. And now as a I write this, I'm feeling like it my be to late. I've watched a rash on my son's skin progress for around two weeks now. I have just finished finding new ones tonight and I have a familiar feeling in my stomach - the same one I got when I realised I had DH... I was always grateful it was me and not the kids, but now, who knows? *sigh*

[nvsmom]

I actually was wondering about the same thing. I am praying every day that my kids don't develop celiac , and I am thinking of going completely gluten-free to minimize ther risk f developing celiac later in life. However, other people are telling me that this approach might actually backfire and they could develop sensitivity to gluten if they don't ingest gluten on a refuse basis... I wish I had a clear answer..

That just doesn't sound quite right to me. I rarely eat eggplant but I don't react to it. I just tried quinoa a few months ago after never eating it and I was fine. Just because one does not regularly eat a food, doesn't mean one will react to it. KWIM?

If it is a food that you are predisposed to react to, then you will appear to have a more severe reaction if you are not regularly eating it. The reason behind that, as far as I can tell, is that if you consume the offending food regularly you will have a constant state of inflammation so when you actually consume the product the inflammation only rises a bit to a certain point. But when you have no inflammation, and you eat the offending food, your inflammation rises from nothing to that same point; it's a much more obvious reaction, far removed from your normal state of health... I hope that made sense.

But that's just as I've come to understand it.