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momothree

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momothree Apprentice
momothree
Posted

Greetings! I just stumbled upon this site, and I'm thrilled. I have 3 kids, and it would appear that 2 of them have celiac. My son (12) had the blood test done, and his reading was very high. He and I will be flying to Childrens' H for his biopsy at the end of the month. My daughter is only 18 months old, and we suspect she may have it too. She has had the blood test, and we are still waiting for the results (I was told it takes 3-4 weeks). She has the distended belly, her weight is starting to go off track from her height, she has very irritable moments (but what toddler doesn't ) :) , and she has some odd bowel symptoms, but one of the signs that I am finding most confusing is what appears to be HD. She has had this reoccuring rash for at least 6 months. I have seen some pictures, and it looks very similar. I suppose the confusing part is that I keep hearing (from my doctor and ped.) that it can't be because she is so young. Then, I will read somewhere else that it can sometimes appear in the diaper area. Her rash is in her diaper area, but also migrates up on her lower abdomen and her upper thighs (as low as behind her knee). The rash comes and goes in waves; first one round red dot (often with a white, fluid filled blister) then in a matter of a day or so, her diaper area is covered in these round dots. The rash will last about a week or two, then they will start to go away and within a couple of days of the recession, they are gone (sometimes with some discolored areas where the spots were). I'm convinced that it is HD (along with her other symptoms), and I am also convinced that the medical community where we live knows very little, if anything about Celiac Disease or HD. If anyone has any insight or info, I would greatly appreciate it. Thanks

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kevsmom Contributor
kevsmom
Posted
Greetings! I just stumbled upon this site, and I'm thrilled. I have 3 kids, and it would appear that 2 of them have celiac. My son (12) had the blood test done, and his reading was very high. He and I will be flying to Childrens' H for his biopsy at the end of the month. My daughter is only 18 months old, and we suspect she may have it too. She has had the blood test, and we are still waiting for the results (I was told it takes 3-4 weeks). She has the distended belly, her weight is starting to go off track from her height, she has very irritable moments (but what toddler doesn't ) :) , and she has some odd bowel symptoms, but one of the signs that I am finding most confusing is what appears to be HD. She has had this reoccuring rash for at least 6 months. I have seen some pictures, and it looks very similar. I suppose the confusing part is that I keep hearing (from my doctor and ped.) that it can't be because she is so young. Then, I will read somewhere else that it can sometimes appear in the diaper area. Her rash is in her diaper area, but also migrates up on her lower abdomen and her upper thighs (as low as behind her knee). The rash comes and goes in waves; first one round red dot (often with a white, fluid filled blister) then in a matter of a day or so, her diaper area is covered in these round dots. The rash will last about a week or two, then they will start to go away and within a couple of days of the recession, they are gone (sometimes with some discolored areas where the spots were). I'm convinced that it is HD (along with her other symptoms), and I am also convinced that the medical community where we live knows very little, if anything about Celiac Disease or HD. If anyone has any insight or info, I would greatly appreciate it. Thanks

Welcome!

I have found the people here very helpful and supportive. I'm sorry that I can't help you with your daughter's issues. DH is probably one of the only symptoms that I don't have ;) . I'm sure that someone will write in with some information for you soon.

Cindy

mommida Enthusiast
mommida
Posted

18 months is not too young to have DH or Celiac. It is harder to get an accurate test result. DH is often called the sister disease of Celiac. In DH patients there is damage happening in the intestine.

All first degree relatives should be screened.

momothree Apprentice
momothree
Posted
  • Author

Thanks for the welcome--I have a feeling, after reading some of the other posts, that I'm going to get some of the best info and advice that I have received so far. So, we are pretty sure that my oldest child has celiac (which will most likely be confirmed when we go for the biopsy), my baby has the rash (I'm almost positive it is DH, no matter what my doctor says) as well as the protruding tummy etc., but my middle child (she is 10), has no symptoms whatsoever. I'm going to get tested (I have had non-specific tummy troubles on and off for years), but do you think I should get my middle daughter tested too?

Also, I've read on some of the posts that it may be hard to get a diagnosis through a blood test with a baby. My babe had the blood test already, will the results be accurate at 18 months, or is it still too early? I'd like to take her to a dermatologist during one of her outbreaks, but, if I make an appointment, I can't guarantee that she will have a rash at that time. It's all pretty confusing. I'd just like to get on with changing their diets, but I know I can't until all the testing is done.

Jnkmnky Collaborator
Jnkmnky
Posted

You know what... The diet is going to be the best indicator of celiac disease in a baby. That's all you can really do with a little one. BUT, it's not a fuzzy kind of .."is she better?". You'll know pretty quickly as long as you keep her 100% gluten free. You'll see a remarkable difference that will take the place of any medical test. The trick is the 100% rule. There is no cheating, no crumb of gluten that doesn't ruin the diet. If you have a crumb in the butter dish that has gluten and she gets it... well, a week's worth of perfect gluten free eating can be thrown in the trash. And then you won't see the miraculous change the diet can produce. So, prepare for the 100% rule, go forward with your own "test" and see what the results are in a month. I'd say in a week you'll be sure what you need to continue doing. As for your older child, get him on the diet asap. Have his blood drawn and begin the diet that very second. Give an older child a couple of weeks to work the damage down. He'll let you know how he's feeling.

And I'd like to add... there's no need for a biopsy if his tests were what they were. Drz love to run all these tests but for what? There's no need for a biopsy at this point. He has Celiac disease. He needs to go 100% gluten free and any damage in there will heal. My son was dx at three and hasn't seen a dr for celiac disease since. It's a self managed disease. Total empowerment for your son. Don't teach him that drs need to be in control of this "disease". Your son has total control over his health. That's my opinion on the biopsy. I don't mean to be harsh, but I think it's unnecessary to do a biopsy.

momothree Apprentice
momothree
Posted
  • Author

Thanks for the insight. I have to say, I have really struggled over what to do or not do in regard to testing. As for the biopsy--it's already scheduled and the flight is booked for a week and a half from now at Children's Hospital in Vancouver. I think that I need to for peace of mind. For one, he seems to have so little in the way of symptoms, and if it weren't for the very high reading for his blood test, I almost wouldn't believe it myself. Also, it seems that Children's has all of the leading-edge information on the disease that the medical community I live in definitely seems to lack. At least I'll be able to find out more info and be able to see a dietician to figure out how to manage the diet (that's going to be very tough with a kid just on the brink of teenage-hood-Yikes!!). As for my wee one, we already had the blood test (no results yet :( ). I think that I will try the diet for her (she seems to have more symptoms that you could visibly see improvement with ie. rash and tummy). So, after diagnosis, there is no need for annual monitoring or anything? That's good news! Thanx again.

lonewolf Collaborator
lonewolf
Posted
I'm going to get tested (I have had non-specific tummy troubles on and off for years), but do you think I should get my middle daughter tested too?

Yes! You might as well test all of them. I had all 4 of mine tested, even my adopted son (stranger things have happened). They all tested negative, but the pediatrician agreed that I should try my 11 year old son on the gluten-free diet. His teacher now says he is "a completely different child".

"At least I'll be able to find out more info and be able to see a dietician to figure out how to manage the diet (that's going to be very tough with a kid just on the brink of teenage-hood-Yikes!!). "

Be prepared for a bumpy transition to the gluten-free diet. My son started right after the first of the year and he fought it. Now it's no big deal and he likes his new style of lunches. He even decided that he likes lettuce wraps with deli turkey. The only thing my other 3 eat differently is bread in their school lunches or occasionally some french toast. Other than that, we're all gluten-free at home, with no complaints.

Hang around here and you'll get lots of support and good ideas.

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TCA Contributor
TCA
Posted

I don't blame you for wanting peace of mind with your son. Just remember that the biopsies sometimes will give false negatives. Make sure the doctor biopsies 6- 8 different areas since the damage can be partial. For the little one, my son had his first biopsy at her age and it was negative. His sympotms persited, so they did another one at 35 mos. It too was negative. Since then I found out that testing is often inaccurate under 5. I finally found this site and decided to put him on a gluten-free diet in Jan. and the change has been miraculous. the only way to diagnose DH is to do a biopsy of a blister and I don't know that you want to put her through that. I think I have DH too. I went gluten-free becuase my breast fed infant had so many symptoms and she improved dramatically. Little did I know that I would improve too. I have no GI symptoms, but I have the rash and have had joint pain all my life. Both are gone now except when I get an accidental glutening. If there is anything I can do for you at all, just let me know. I have a list of foods my son eats I could send to you if that would help. Just PM me. Good luck with all of this and keep us posted!

momothree Apprentice
momothree
Posted
  • Author

Wow, I find that very interesting that both of your kids were tested and the tests came back negative. I just got the results of my 18 month olds blood test, and it too was negative. I'm still convinced that she has it, and to find out that the test results are often inaccurate with kids under 5 makes my resolve all that much stronger. I'm definitely going to switch her to the gluten-free diet. I think I'll wait until my son and I return from his biopsy next week and then get started. In other people's experiences, did anyone have a preference to going "cold turkey" with gluten, or slowly weaning kids off of it? Actually, even for myself when it comes to learning how to shop and cook for this new diet. I have to say, I'm anxious about the whole thing. Do people actually have a different toaster and butter container etc.? Yikes! The more I think about it, the more stressed I get :unsure: !!

Jnkmnky Collaborator
Jnkmnky
Posted
Wow, I find that very interesting that both of your kids were tested and the tests came back negative. I just got the results of my 18 month olds blood test, and it too was negative. I'm still convinced that she has it, and to find out that the test results are often inaccurate with kids under 5 makes my resolve all that much stronger. I'm definitely going to switch her to the gluten-free diet. I think I'll wait until my son and I return from his biopsy next week and then get started. In other people's experiences, did anyone have a preference to going "cold turkey" with gluten, or slowly weaning kids off of it? Actually, even for myself when it comes to learning how to shop and cook for this new diet. I have to say, I'm anxious about the whole thing. Do people actually have a different toaster and butter container etc.? Yikes! The more I think about it, the more stressed I get :unsure: !!

COLD TURKEY is the only way. Your body's immune system is working at full force for a crumb.

I had separate everything for the first 4 years... it was fine. Now we're all gluten-free thanks to the book, "Dangerous Grains". Available at amazon.

Our favorite foods are all from Kinnikinnick.com Ordering is simple and easy. Been using them for a long time no problems.

TCA Contributor
TCA
Posted
Wow, I find that very interesting that both of your kids were tested and the tests came back negative. I just got the results of my 18 month olds blood test, and it too was negative. I'm still convinced that she has it, and to find out that the test results are often inaccurate with kids under 5 makes my resolve all that much stronger. I'm definitely going to switch her to the gluten-free diet. I think I'll wait until my son and I return from his biopsy next week and then get started. In other people's experiences, did anyone have a preference to going "cold turkey" with gluten, or slowly weaning kids off of it? Actually, even for myself when it comes to learning how to shop and cook for this new diet. I have to say, I'm anxious about the whole thing. Do people actually have a different toaster and butter container etc.? Yikes! The more I think about it, the more stressed I get :unsure: !!

I have a list of foods my son eats if you would like it. It also has tips for people who keep him so he won't get sick (hopefully). Just PM me if you want a copy and I'll send it to you. We went for a gluten-free house and it has worked great for us. CC risks are too high for us. I can't deal with the stress!!!! :blink:

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