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Want To Know For My Son

ldinap

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ldinap Newbie
ldinap
Posted

I've been reading these posts for the past few weeks and just wanted to get an opinion on my story.

We've had an eventful 2 years in my house... birth of first child, mom sick with pancreatic cancer (who died when my son was 3 months old), executor of that estate, multiple household infections with my son in daycare requiring some hefty antibiotics for all of us. I never felt back to normal after my son but chalked it up to effects of pregnancy. About 2 months ago things got increasingly worse until finally I was having D within 20 minutes of eating anything. I had tried increasing fiber, probiotics, avoiding dairy etc but nothing worked. Out of desperation I stopped gluten (since I know someone with celiac) and at least stopped running to the bathroom for the day before I went to my GP. She called it IBS and did some routine bloodwork which was all normal. I tried gluten-free for 2 weeks, challenged it by eating normal with the same result and then went gluten-free again for 2 weeks before going back. She was very non-chalant and said don't eat gluten then. I ended up at GI because I was concerned with how careful I needed to be and if my son was at any risk. They called today and said my biopsy was negative. I was gluten-free on and off for only 4 weeks before my biopsy but the doctor said tjat it would have taken months to heal and I had an accidental exposure in there as well so that should be fine. I also had a small rash on my forearm/knee that came and went 2-3 times during this trial and error but it was never still lingering when I saw the MD. Should I stop obsessing about the possibility for celiac and just monitor my son? For me personally, I don't plan to go back to eating gluten...I'm concerned for him. Sorry for the book!

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Marilyn R Community Regular
Marilyn R
Posted

Should I stop obsessing about the possibility for celiac and just monitor my son? For me personally, I don't plan to go back to eating gluten...I'm concerned for him. Sorry for the book!

I don't know if this will help or not. From what I've learned on this forum there are two genes that are carriers of celiac disease...DQ2 & DQ8. Studies in the UK have suggest that there is another chromosome that involves neurological symptoms. D3, I think.

I've avoided genetic testing, even though my neurologist suggested it, but I don't have children. From what I understand, even if you carry the gene, you will not automatically have the disease, and neither will your children. He has a 20% chance with a first degree relative with celiac disease.

So long story short, if you are willing to continue the gluten-free diet for yourself and monitor your son, I think you are doing the right thing.

I'd insist on a celiac screen each and every Dr. visit, though, even if he's asymptomatic. Wish you and your little guy well...

And by the way, I asked all of my nieces and nephews to get tested, along with my siblings.

Roda Rising Star
Roda
Posted

I think monitoring him is alright if he his not exhibiting any symptoms. Also depending on how old your child is it may be necessary to have him gluten free at home so he isn't cross contaminating you. I know it is harder the younger they are. I also agree with the pp that getting him screened (blood tested) periodically is a good idea.

I had both my boys screened when I was diagnosed. Neither at the time seemed to have any issues either. I had my oldest retested every year since then. My youngest son(6 1/2) started exibiting some strange symptoms so he was retested in Nov. 2010. His blood test was positive and was a real suprise since it was the oldest whom I thought would show positive. I opted out of a scope/biopsy since I had a firm diagnosis. To me it was a no brainer. As for my oldest son(10 1/2), he has been negative on all his blood work and even on his scope/biopsy. I've put him on a three month trial of gluten free. His current allergist feels he needs to be gluten free because of the genetic risk (mom and brother with celiac, and no we haven't had the genetic tests and not going to) and other issues. I have to say I'm glad I finaly did because I've already seen some positive changes. It was harder for me to commit for him because every test out there was screeming negative.

ldinap Newbie
ldinap
Posted
  • Author

I think monitoring him is alright if he his not exhibiting any symptoms. Also depending on how old your child is it may be necessary to have him gluten free at home so he isn't cross contaminating you. I know it is harder the younger they are. I also agree with the pp that getting him screened (blood tested) periodically is a good idea.

I had both my boys screened when I was diagnosed. Neither at the time seemed to have any issues either. I had my oldest retested every year since then. My youngest son(6 1/2) started exibiting some strange symptoms so he was retested in Nov. 2010. His blood test was positive and was a real suprise since it was the oldest whom I thought would show positive. I opted out of a scope/biopsy since I had a firm diagnosis. To me it was a no brainer. As for my oldest son(10 1/2), he has been negative on all his blood work and even on his scope/biopsy. I've put him on a three month trial of gluten free. His current allergist feels he needs to be gluten free because of the genetic risk (mom and brother with celiac, and no we haven't had the genetic tests and not going to) and other issues. I have to say I'm glad I finaly did because I've already seen some positive changes. It was harder for me to commit for him because every test out there was screeming negative.

Thanks for the reply! I appreciate it! My son has had some random symptoms since birth but none that are GI. We've been to an allergist, pediatrician and pedi GI who have all said its too early to allergy test him, just treat the symptoms. He had reflux that he was treated for a year with meds. Now he has ezcema and has been developing some other rashes that come and go. He was allergy tested and everything was negative so the ezcema is just unknown cause. The impression I was given by doctors was that my son could get routinely tested if I was confirmed celiac (which they are saying I'm not). Otherwise, there is no reason to test him unless he were to develop GI symptoms or failure to thrive. I'm tempted to try him gluten free and see what happens but I'm also too well aware now of why you shouldn't go gluten free before testing. I would bring him to my current allergist except everyone seems to agree that he is too young for anything to be accurate....its just frustrating that you're limited by what the doctors think the issue is and therefore what the insurance will pay for.

Roda Rising Star
Roda
Posted

In hindsite I see things about my youngest that raise a red flag now that very well from a young age that may have been related to gluten affecting his immune system. Here are a list of things he had:

-delayed separation of umbilical stump(was almost 3 months old)

-very bad reflux to the point he would scream

-sensitivity to rice and oatmeal baby cereal (developed rash on head)

-recurrent rhinosinusitis/strep infections(starting at 2 months)

-hives from pecans (I ate them and he broke out)

-colic if I drank/ate dairy

-developed wheezing/RAD(reactive airway disease) at 8 months old(due to reflux)

-bowel yeast overgrowth, yeast infections in diaper area and thrush-due to so many antibiotics

-adnoidectomy at 19 mo. due to recurrent rhinosinusitis

-recurrent strep tonsillitis

-MRSA infection of tonsils that required 3 weeks of clindimycin to clear up

He was breastfed exclusively until he was 16 months old. I had eliminated all dairy, oats, rice and tree nuts from my diet because it bothered him. He saw an allergist/immunologist for the first time when he was 14 months old and that was at my insistence. The specialist said to me that first day "why hasn't this child been referred sooner?" It made me really mad at our pediatrician. Had I not insisted at his 12 month check up there is no telling how long. He was allergy tested and all normal but we were told the testing was not really reliable in children that young. He helped us manage his symptoms reallergy tested him when he was 3 1/2 years old. He really helped him improve and get better. The last visit(he was around 4) he no longer needed to see him anymore and all the above mentioned things were/are no longer an issue. He really did well from age three to almost 5 1/2 years. That is when he started having bad tummy aches, fat in his stool, and weird obcessions with his shoes. I decided to see if he had food allergies and took him to a new allergist to get checked. Nothing on his allergy testing but that is when his celiac test came back positive. I was still breastfeeding him when I started having issues myself. In hindsite I was gluten light during that time. When I started weening him and adding foods back in, is when I started having issues. I wonder now if he was reacting to gluten in my diet also.

So I guess the moral of my long winded post, is if you want him tested persue it. It sounds like he has enough issues that "could" be related to gluten. Testing is more unreliable in children with a higher false negative rate though.

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