14 Year Old With Negative Blood And Biopsy

[annmom]

My 14 year old son has had a number of problems in the last year or so that seem to indicate a likelihood of celiac disease. He is delayed in growth and puberty (bone age of 12 for a 14 and 1/2 year old). He is anemic (HgB of 12.8 norm =13.6). He has a slightly elevated sedimentation rate (norm = 1-15, his is 23). He has occasional problems with stomach pain which can last all day. He also has trouble with headaches. He is positive for both celiac genes DQ2 and DQ8. His aunt (my sister) and his cousin (my brother's daughter) have both been diagnosed with celiac based upon extremely high numbers on the celiac panel. His blood test and biopsy were both negative so the doctors (pediatrician and gastroenterologist) are saying celiac is ruled out but I am thinking it is still a possiblity. I am frantic about missing his growth spurt because it is being inhibited by undiagnosed celiac disease. Anyone have ideas for what I should do next?

[flagbabyds]

You could find the gluten free diet without the docs prescription and see if he feels better. That is sometimes the best diagnosis tool because you can see if he could possible be a celiac. If it doesn't help, then put him back on gluten and see if he gets worse.

Just do some trials and errors and see what works and makes him feel better.

[Jnkmnky]

Is he refusing to go gluten free if the tests don't indicate a need? I'm neg for everything, but my body doesn't like gluten. Would your son consider doing the diet for a few months to make HIS own decison? That may make him feel as though he has the control.

[Simply-V]

  annmom said:

My 14 year old son has had a number of problems in the last year or so that seem to indicate a likelihood of celiac disease. He is delayed in growth and puberty (bone age of 12 for a 14 and 1/2 year old). He is anemic (HgB of 12.8 norm =13.6). He has a slightly elevated sedimentation rate (norm = 1-15, his is 23). He has occasional problems with stomach pain which can last all day. He also has trouble with headaches. He is positive for both celiac genes DQ2 and DQ8. His aunt (my sister) and his cousin (my brother's daughter) have both been diagnosed with celiac based upon extremely high numbers on the celiac panel. His blood test and biopsy were both negative so the doctors (pediatrician and gastroenterologist) are saying celiac is ruled out but I am thinking it is still a possiblity. I am frantic about missing his growth spurt because it is being inhibited by undiagnosed celiac disease. Anyone have ideas for what I should do next?

Well with the genes he has, I'd try to get him on a gluten-free diet for a while just to see if it helps. Otherwise, I'd start looking at other autoimmune disorders. From my research (dont ask me to quote sites, cuz I've read like 100 in the last 3 days so they all blend together) Celiac disease is linked to other autoimmune diseases such as Diabetes type 1, Thyroid issues. Its also prevalent in people with Lactose intolerance and food allergies, though these two could be side effects of Celiac, I haven't seen any research on it.

If he won't do the gluten-free diet, I'd have him do a food diary. Including times, amounts, and any symptoms he has during the day.. like headaches, tiredness, listlessness, attention problems, sleep problems. And the days when he has stomach pains, start looking at what he ate that day and the day before (or even the day before that). You may see the same things come up time after time.

Just my two cents..

[nettiebeads]

I agree with the others. The celiac tests are notorious for false negatives in adults and even more so in children. I'm sure your son doesn't consider himself a child, but physically speaking his age could have skewed the tests. Also, maybe he hadn't been consuming as much gluten as needed for the test's accuracy...myriad of scenarios as to why the negs. My current gp doesn't think that the tests are as reliable and sensitive as they should be. Probably in the future. Anyhow, with his genetic markers, I would strongly suspect celiac. The food diary is a good idea. Also just do a trial gluten-free diet. The diet challenge is a valid diagnostic tool; that's how I was dx'd 9 years ago, nothing else was done. No gluten, no problems. Gluten, problems galore. None of my other dr's since have questioned me or told me I still need to do the "official" tests. Your son is of the age to reason for himself, but I'm sure being male, he would love to be in a higher percentile on the growth chart.

Keep us posted; has he checked out the teen site on this forum? And having family members for him to talk to will help too.

Annette

[mommida]

I agree with the others, try the gluten free diet. It would appear that males don't seem to suffer from the symptoms as often as females. The genetic markers that he tested positive for are linked with other auto-immune diseases, that a gluten free diet can help. The book, Dangerous Grains, may help you make this decision.

L.

[annmom]

Thanks for all the advice. My son is willing to try the gluten free diet so I think we will make it a go. He has been checked out for other auto immune diseases and tested negative on them - diabetes and thyroid problems so celiac seems the most likely. Does anyone think it is worth it to do the enterolab stool samples too?

Ann

[nettiebeads]

  annmom said:

Thanks for all the advice. My son is willing to try the gluten free diet so I think we will make it a go. He has been checked out for other auto immune diseases and tested negative on them - diabetes and thyroid problems so celiac seems the most likely. Does anyone think it is worth it to do the enterolab stool samples too?

Ann

It's quite a chunk of money and you already know his gene type. Think positive - maybe with him off gluten he'll hit a growth spurt and you'll need the money for new clothes!

Annette

[Guest nini]

I say just go for the gluten-free diet and see how he does... my daughter's blood test was negative (although I'm convinced they did not do the correct tests) but she responded miraculously to the diet. She was three at the time, she just turned six, and she's doing exceptionally well on the gluten-free diet.