Lamenting

[October3]

Sigh.... The saga continues. Now really sure what the next step is from here.

Let's see if I can summarize the past year - My son got really worn down last winter. Took him to doc, blood test showed anemia - not a huge surprise because he has been anemic off and on his whole life. Doc said go to GI again (previously worked up for recurrent anemia at age 18mths - 2yrs with no answer). GI did a work up, tTG was elevated to 48 (moderate). Scope was done in January - totally normal/ negative biopsies. GI said watch him, supplement with iron, check iron levels quarterly, and come back in a year but don't change diet. We opted instead to 1st get the anemia resolved so Jan - April we supplemented. In April tTG had dropped to 22 with no dietary changes, anemia was resolved though iron stores were still low. April - June we eliminated gluten and stopped the supplements. Hemoglobin dropped to boarderline anemic again, tTG was down to 14 (normal range). June - October we reintroduced gluten (no immediate changes in behavior or GI symptoms with or without gluten). By late Sept though he was a disaster - fussy, major meltdown, complaining of headaches and feeling like he was going to puke all the time. During this time we were supplementing with the same thing we had used earlier in the year that effectively brought his hemoglobin up. We ran out of vitamins for a few weeks and then started him on Floradix with the thought that it is supposed to absorb better and it also has B vits. We also started him on D vits - all this around the 1st of Oct. After 3 weeks on the new supplement plan we checked him and his hemoglobin is the worst its been all year, his tTG is back to 35, his retic count is non-existant. His blood work is the worst it has ever been. Yet, he's feeling great on the new vitamin regimen, so I'm totally confused. Meltdowns, headaches, puky feeling all gone.

I'm thinking now the Floradix doesn't have enough iron in the children's dose so that might explain some of the drop, but why were the children's chewable vits working fine last winter and not now? And more importantly, how do we get an answer as to whether gluten is the problem? If gluten isn't going to cause him to feel sick we really hesitate to say he has to be strictly off it. I really want to know beyond a hunch that gluten is the problem before we say no gluten for the rest of your childhood. It would be so much easier if he had diarrhea or tummy aches or something that responded to going gluten free and then a gluten trial. Or a more convincing tTG that clearly dropped only when gluten was elminated (not before) and went up only when it was reintroduced. Or a positive scope. But it is just all so ambiguous. Sigh....

So what now? Take him to Maryland? Another longer gluten elmination?

[Roda]

I would gander to say that he has celiac disease. I am of the opinion that there is no good reason for a child or anyone, in the absence of other autoimmune disorders that could falsly elevate the tTG, to produce those antibodies unless they have celiac. Not all people that have celiac have gi symptoms. Unexplained anemia is a big red flag and so are the behavior changes. Kids are weird in that they can have "honeymoon" periods and seem fine. I think my youngest son(he is 6 almost 7) did just that. In hindsite I think he was celiac as a baby, by age 3-3.5 seemed fine until age 5.5 when weird symptoms etc. cropped up. He had tummy aches, occasional fat in his stool, emotional breakdowns, temper tantrums and a weird obcession with his shoes. I had his tTG repeated (I had him tested when I was diagnosed and tTG neg) and it was positive. I felt I did not need to put him through a scope/biopsy so I put him gluten free immediatly. Hubby regretted it after about a month into it. I did challenge him at 4.5 months after he went gluten free. I was going to do the full three months challenge for the scope/biopsy, but after three days he was reacting so badly, my skeptical husband called the challenge off. My poor son was miserable to say the least. All his problems came back worse. We consider him diagnosed. I may get him gene tested to see if he has the "common" genes. If he does then he can be formally diagnosed with that, positive blood work, symptoms, reponse to the diet, and recurrance of symptoms with gluten reintroduction. My oldest son(he is 10) was the one I was sure had celiac. He is so much like me when I was young. I have had him blood tested 4-5 times and every time he is overwhelmingly negative. I have been toying with the idea for two years to put him gluten free. I couldn't bring myself to do it without "more" evidence. I took him to a gi doc in July to see if she would scope him. She repeated the blood work(negative) and he had the scope in Aug. She agreed, since there were two people in his immediate family with it and for the possibility he was a sero negative celiac. His scope was negative as well. I put him gluten free anyway 1.5 weeks after. I still was having problems commiting him to it, but I'm so glad I did. My only regret is that I wish I could have decided this two years ago. Complaints he had are now resolved, his color has improved, he is gaining weight and I feel like he is going to start growing. I am planning on challenging him in December to see what kind of reaction he has. I don't think it will be as severe as brother and I but I still feel he will need to be gluten free for good as well. The gi doctor is willing to diagnose him as gluten intolerent. He goes back in Jan so we can report his progress and how the challenge went. So the long story is maybe to give you some insite on other's strugle with commiting your child to this diet. It is hard and it took me two years to commit for my oldest son. I had no problems whatsoever commiting my youngest son. I would have no problems if my son was experiencing what yours is, and with a repeated positive tTG, putting him gluten free for good. I think eventually you will have a much healthier child once gluten free. It does take time to heal.

[October3]

Roda, Thanks for sharing your story. It helps to hear other parents of similar aged kids and the way they have reached the decision to be gluten-free. It is such a tricky disease in that there are so many different ways it can manifest.

On the point of behavior, I don't think my son's behavior is affected by gluten at all. His meltdowns, headaches, upset stomach, and all his other complaints seem to be tied to the anemia but not the gluten. He is much better now that we have him on the Floradix even though he is still on gluten as this point. If I could find some sort of symptom that seemed better off gluten the decision would be much easier.

[Roda]

  On 10/26/2011 at 12:01 PM, October3 said:

Roda, Thanks for sharing your story. It helps to hear other parents of similar aged kids and the way they have reached the decision to be gluten-free. It is such a tricky disease in that there are so many different ways it can manifest.

On the point of behavior, I don't think my son's behavior is affected by gluten at all. His meltdowns, headaches, upset stomach, and all his other complaints seem to be tied to the anemia but not the gluten. He is much better now that we have him on the Floradix even though he is still on gluten as this point. If I could find some sort of symptom that seemed better off gluten the decision would be much easier.

Eventually you will reach that point and just do it. There will still be that nagging thought of "did I do the right thing." I am so glad I did with my 10 year old. We are getting to a point that all of his peers are growing and changing and he is so little. My boys are almost 4 years apart in age and my youngest son (he has really grown so much since he has been gluten free) is not that much smaller than him. If it were me, I would put your son back on the diet and stick to it for a good 3-4 months, keep supplementing, then see what happens. I didn't reintroduce gluten for 4.5 month for younger brother and it will end up the same for big brother. I am now just getting over a mild glutening(I'm the radar detector in the house) so I know both the boys got some to since we ate the same things. Little brother showed mild sympoms but I wasn't sure about the older one. I think he is going to be harder to tell and with more delayed reaction. Yesterday though he complained of really bad gas pains and took a gas ex pill. He hasn't had that in almost two months.