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Sarah8793

Now I Know I'm Celiac, Do I Screen My Children?

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I know now that I have the 2 main celicac genes in addition to malabsorption and symptoms. So logically I am now wondering about my children. I have a 7 year old son and a 4 year old daughter. My 7 year old doesn't have any digestive symptoms, but he does have mild anxiety that comes and goes, he will wet the bed if drinking water before bed, and he is NOT ADD as of yet, but he is showing signs of it. Otherwise he is a very bright boy, does well in school and very athletic. I know that some of those are atypical signs in a child for celiac. My 4 year old seems okay. She complains of tummy aches sometimes but don't know if it is diet related or stress. She doesn't have digestive symptoms either. I nursed each of them for an extended time and that may have helped. I dunno what I should do next? Any suggestions are welcomed.

Thanks,

Sarah


Don't be afraid to reach for the moon. The worst that can happen is you'll miss and land among the stars.

Positive blood work

2 negative biopsies over 4 year period

Postive EnteroLab results

Lactose/Casein Intolerant

Gluten free since May 2006

Soy free since May 2007

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Since you know that you have 2 genes you can be assured that each of your children has at least one. I had my kids gene and antibody tested through Enterolab after they all came back inconclusive on the regular blood work and since I knew they had to have gotten one gene from me I was suprised to find out that my kids also had 2 genes that cause gluten intolerance and/or Celiac. This means that my husband also carries the genes.

Now as far as what you should do for your own kids, that is a personal choice. My oldest had symptoms leaning more towards behavior/mental issues. Mood swings, anger problems, crying at nothing, etc. He rarely had digestive issues, mainly just an occasional explosive diarrhea. My middle boy had tons of digestive issues all the time as well as many other health issues. My daughter had few symptoms, but was extremely tiny. At 12 months she was borderline failure-to-thrive. They didn't call CPS on me because the doctor's office knew that I WAS feeding her, but they said they would have to call if she didn't start gaining some weight. Of course as my daughter got older she started to get the DH rash when she would eat gluten.

None of my kids were sick enough on their own to get diagnosed. It was only because I tested positive for the genes that they even considered testing the kids. None of us are "officially" diagnosed, but we are all enjoying our much improved health on the gluten-free diet. You would have to decide for yourself if you want to pursue testing/diagnosis for your own kids, or just go ahead and try the diet for them (much harder to get a correct diagnosis after being on the gluten-free diet though), or just wait and see. There is no right or wrong choice here, it is up to you.

I personally am very happy to have chosen the route for my family that I did, they will suffer much less throught their lives because they are healthy. I wish someone had told my mother about gluten intolerance/Celiac when I was a child and always suffering! I am just happy that I found out when I did and could help my kids to have a better life. Yes, they have to be gluten-free, but they are used to it now, and it will be much easier for them to deal with being gluten-free as adults since they will be old pros by then!


~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

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I am just happy that I found out when I did and could help my kids to have a better life. Yes, they have to be gluten-free, but they are used to it now, and it will be much easier for them to deal with being gluten-free as adults since they will be old pros by then!

Thanks for your thoughts. I feel the same way about wanting to protect my kids from having health issues with this later. At first I thought having them go gluten free would be awful for them, but then it occured to me that it might actually be easier for them as children to adapt. I'm going to talk with our pediatrician the next time I see him and then I guess I'll either test them or just do the diet. I'm leaning towards testing first I think.

BTW, your family portrait is adorable!

Sarah


Don't be afraid to reach for the moon. The worst that can happen is you'll miss and land among the stars.

Positive blood work

2 negative biopsies over 4 year period

Postive EnteroLab results

Lactose/Casein Intolerant

Gluten free since May 2006

Soy free since May 2007

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BTW, your family portrait is adorable!

Thanks. My daughter loves to draw! She did this one last year when she was 6. I only wish I were as thin as she drew me!


~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

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Sarah, since celiac disease is genetic, it is definitely a good idea to have your kids tested.

Mariann, I just read through your signature. Do you realize that recurring nasal polyps are TYPICAL for a salicylate intolerance, and if you're allergic to Aspirin, that is also a sure sign you're salicylate intolerant (since of course Aspirin IS salicylic acid)?

I know, because that is what one of my huge problems is. Please follow the salicylate link in my signature to find out more. It will prevent a lot of misery in your son later in life. Salicylates can cause terrible things, including fibromyalgia, in people intolerant to them.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Ursula, yes, I am aware of the link between nasal polyps and aspirin/salicylates. We have a wonderful ENT that the whole family sees and he was the one who told us about the link. In fact his asthma is probably related too. We suspect he has Aspirin Triad Disease which is basically the allergy to aspirin causes both recurring nasal polyps and chronic wheezing-type asthma. Since the only way to test for aspirin allergy is to take him off all his meds, give him a good dose of aspirin and see if he has an asthma attack, we chose instead to treat him as though he is allergic. He no longer uses any aspirin containing products, no ibuprofen, no pepto-bismol, and I limit his intake of foods high in salicylates. So far his asthma is under control with Singulair tablets and the nasal polyps have not grown back since his second surgery. In fact the ENT says we can wait another 3 years before we do another CT scan! Yeah! So I do believe that the aspirin/salicylate issue was what was wrong. After the first surgery the nasal polyps grew back within 6 months. He was still using pepto-bismol and childrens motrin on a regular basis. You did know that ibuprofen can cause a reaction in someone allergic to aspirin, right? Most of the nurses at the ENT surgery clinic didn't know that...As soon as the doctor mentioned aspirin allergy I did a ton of research and immediately cut him off all those things. He has improved so much it is amazing.

I have already looked at your links months ago. :D


~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

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Ursula, yes, I am aware of the link between nasal polyps and aspirin/salicylates. We have a wonderful ENT that the whole family sees and he was the one who told us about the link. In fact his asthma is probably related too. We suspect he has Aspirin Triad Disease which is basically the allergy to aspirin causes both recurring nasal polyps and chronic wheezing-type asthma. Since the only way to test for aspirin allergy is to take him off all his meds, give him a good dose of aspirin and see if he has an asthma attack, we chose instead to treat him as though he is allergic. He no longer uses any aspirin containing products, no ibuprofen, no pepto-bismol, and I limit his intake of foods high in salicylates. So far his asthma is under control with Singulair tablets and the nasal polyps have not grown back since his second surgery. In fact the ENT says we can wait another 3 years before we do another CT scan! Yeah! So I do believe that the aspirin/salicylate issue was what was wrong. After the first surgery the nasal polyps grew back within 6 months. He was still using pepto-bismol and childrens motrin on a regular basis. You did know that ibuprofen can cause a reaction in someone allergic to aspirin, right? Most of the nurses at the ENT surgery clinic didn't know that...As soon as the doctor mentioned aspirin allergy I did a ton of research and immediately cut him off all those things. He has improved so much it is amazing.

I have already looked at your links months ago. :D

Okay, I was just making sure. And no, I didn't know that ibuprofin could cause a reaction. Since I self-diagnosed myself, and my doctor knows nothing about salicylate intolerance (she just takes notes and learns from me when I tell her these things :D ), she also didn't tell me that I shouldn't be using ibuprofin. Now I know why it never worked for me any more than Aspirin, in fact, both made my headaches worse! Thanks for telling me.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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I'm glad I could help. Although Ibuprofen doesn't contain aspirin there is something in it that is so similar that it can cause a reaction. It is just safer not to use it. My son only uses Tylenol. It is very limiting, but I would rather be limited that be suffering from other problems.

He was 7 when he had the first surgery and the polyps had been ther for at least 2 years already! I don't want him looking at a lifetime of surgeries. He is already going to need another one when he is a teenager, since his facial bones were too small at the last surgery for them to get all of the tissue out of his sinus cavity. They have to wait until he grows and then clean it out really good.


~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

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Yes, Tylenol and Codeine are the only painkillers that work for me. It's a bit of a 'pain', as it would be nice to have more options, but that's okay.

I had polyps removed when I was three, and have a small one now, but was told that it is too small to be a problem.

Susie (my 14-year-old) has a very large polyp in her left sinus (the one below her eye). Is it very bad to have those removed? She can't breathe through her nose any more. I am really wondering if she is intolerant to salicylates, too. But she insists that the only intolerance she has is dairy, and that's that. She is totally unreceptive to any suggestions about any other food related problems (even though it's obvious she is wrong). I guess she has to grow up a little (or get really sick) before she will listen (sigh). It's hard to be a mother, when your kids are so stubborn! I hate seeing them suffer because they won't listen.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Hmmm...that is too bad about your daughter. My husband is the same way. He will have to get very sick before he will remove gluten from his diet. We already know he has the genes, and he admits he has problems with milk...

Anyhow, my son says it isn't that bad having the surgery. They go up the nasal passage and if the sinus is blocked, they make an opening in the side of the sinus and go in with a small vaccum tube and suck every thing out. Jacob's first surgery they removed 4 large polyps and they regrew so darn fast! A year later he had his second surgery, and so far so good! It has been a year and a half and they haven't regrown. They like to keep the polyps out of the kids sinus area because if they continue to grow they can go up into the upper sinus on the bridge of the nose and the forehead and then they cause more problems and are harder to remove from those sinus areas. They said it would disrupt his facial growth if they went into the upper sinus and he had to have surgery. Much easier to remove from the lower (maxillary) sinus cavity...

Both surgeries they had to pack his nasal passage on that side and he hated that the most.


~West Coast-Central California~

Mariann, gluten intolerant and mother of 3 gluten intolerant children

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