Thalassemia minor and celiac disease in children

Hi, I am a new member in this forum. This forum is full of information about thalassemia that i feel so comforted. I have a beta thalassemia trait and my hb is maintained at 11. Though i haven't cared much about myself but i feel worried about my daughter. My 5 yr old daughter also has the beta thalassemia trait along with Celiac disease. Due to both the conditions, her growth was very slow and she was deficient is most of the things such as iron, vitamin D, hb etc. It has been almost 4 months since she was diagnosed as a celiac. After going on a gluten free diet, she is much better now, her iron levels(from 10 to 187 now), vitamin D(from 6 to 50 now) levels have improved drastically. though hb has also increased (from 7.6 to 9.0 now), but i expected it to increase much better.

Is there anyone with similar condition in this forum? I would just like to know how long would it take to increase her hb levels and upto what levels can i expect? She is on a good diet along with iron supplements and folic acid supplements. Also, though her doctor has recommended iron supplementation for another 3 months, i feel it should not create an iron overload for her. Would it be safe to continue iron supplement for 3 more months. She is taking 50 mg elemental iron once in 4 days.

Any help in this regard would be highly appreciated.

Hi Kiya,

I have heard the combination of thal minor and celiac disease mentioned often in these pages. I do not know if there is any connection, and because celiac is so common that we can expect a certain percentage of thal minors to also have celiac, I don't think we can draw any conclusions. We have previously heard from members who are struggling to get iron levels up because of poor absorption, most likely due to celiac disease. You have done a remarkable job in reversing your daughter's condition and both her iron and D levels are now fine, going by these numbers. Because diagnosing iron deficiency requires the results of several different iron tests, I don't want to say one way or another if she should continue iron at this point. Do you have the results of a recent iron panel? Usually there will be at least 3 different values expressed in these results. Her iron level seems fine from the one number, but the other numbers would provide a more complete view. Looking for TIBC, serum iron and ferritin levels. It may be that the doctor is being cautious and making sure her iron stores are adequate before discontinuing iron, but if the absorption problem is solved, she should now be able to get all the iron she needs from her diet. If you have the iron numbers, I can give you my opinion on continuing iron. By the way, getting her D level up was a key. This will be reflected in all areas of her health.

Hi Andy,

Thanks a lot for your guidance and opinions.

Doctor has written iron indices for her but she is ok to have them after 3 months at the time of next visit as even TTG test for gluten free compliance is due at that time. She didn't seem to be so worried at this moment to get another prick right again after one set of tests. So, i guess we would also wait and do the tests at that time only. It really feels bad to get pricks after pricks done for a small child time and again. Will hold on till then and keep our fingers crossed. We would also know how her iron serum and hb is fluctuating during this period.

The other facts were that she has been eating goat liver for iron levels so even B12 deficiency was out of question. She was already on folic acid since 4 months so folic acid deficiency is out of question....i mean just for your information.

Thanks
Kiya

Hi,

Can someone tell me how much time does it take, in general, to increase hb by each point in B-thal minor cases, especially in children?

Thanks a ton

Kiya

I don't think anyone can answer that question. Most thal minors will find that the most they raise their Hb level is less than a point. Many thal minors are in the 9-10.5 range for Hb and little changes that. Because your daughter is recovering from absorption issues, it may be awhile before you find out where her Hb will lie. It could take anywhere from 6 months to two years to restore iron stores and maintain a stable Hb level. Some thals do respond to natural fetal hemoglobin inducers like wheatgrass and resveratrol, with the latter showing some real potential in recent studies. If you have the results of a hemoglobin electrophoresis test, check the HbF percentage. The higher this already is will give you some indication about whether trying to raise her HbF might have potential. If it is higher than 1.5% it does show some ability to produce HbF.

My personal experience with raising my Hb after severe surgery-caused anemia was that it took 2 years to fully restore my Hb level.

Your doctor wants her to stay on iron for awhile. Because her iron stores need to be re-established and proven stable, I can see why he would want a few more months. I think this is a cautious approach based on her history and is understandable that the doctor would prefer this. She has a long way to go before iron can pose a danger, so staying with the iron shouldn't pose any risk and may continue to help raise her Hb.

Hi Andy,

Thanks a ton. I really appreciate what you do for people in this forum. We had her electrophoresis done 2 yrs back. At that time, her iron was 32, HBF was 0.4, TIBC was 394 (within range), HBA was 94.4, HBA2 was 5.2. I am not very sure which of these will improve with increased iron levels now.

The blood tests that doctor has ordered for her 3 months down the line are :
CBC with peripheral smear
Iron
ferritin
TIBC
% transferrin saturation

Hopefully, these should give us a better picture. What is your opinion to all this data? How do you increase HBF? Is it related to iron serum increase?


Thanks
Kiya

Hi Kiya,

Her HbF was quite low (.4%) in her electrophoresis, so I wouldn't expect her to have much ability to increase this percentage. The gene normally turns off after birth but thals tend to produce some HbF to help compensate for a lack of HbA. HbF and iron are not related. HbF is produced by a gene that silences after birth, as the body switched to the beta globin gene. If hers was at least 1.5% I would hope for some improvement in that level. On the other hand, a low HbF in a minor may actually be a sign that her body isn't trying to compensate for low HbA by producing HbF. If this is the case, her Hb level will probably climb more as time passes, as long as her absorption of nutrients is normal. A study I just ran across on antioxidants in thalassemia looked at whether any of them had a positive effect on Hb level. This is not necessarily expected with antioxidants but it was found that vitamin C was the only antioxidant tested that also showed some increase in Hb level. Vitamin C is also useful in iron deficiency because it aids in iron absorption in the gut. I would suggest that she eats citrus regularly and also takes a supplement, either in a multi-vitamin or as chewable C.

Her low Hb has improved once iron absorption was corrected. Her anemia may be more related to iron than thal minor. If her celiac disease is under control, she should continue to improve. I'm sure it can be tricky making sure she gets good nutrition while also avoiding a lot of foods, but I am very impressed by how much she did improve after the dietary changes. It isn't always easy to turn things around with celiac. The tests in a few months will hopefully show continued improvement.

Hi Andy,

Thanks a lot. I appreciate your tremendous knowledge on the subject. My daughter's HBF (0.4) was from a 2 yr old blood test. It might have got corrected by now, she is 5 + now. I checked my reports and my hbf is 1.4, but my husband's is 0.0 and he is not thal minor. i didn't understand this.

Regarding vitamin C, i do try my best to give her vit C in one or the other natural forms. Also, give her some orange juice everyday (tetrapack ones since it is currently off season for oranges here). But, wouldn't go for any chewables at this moment as she is a celiac and chewables might have malt...

Rest, lets hope for best, next three months will get us more clarity.

Thanks again,
Kiya

Hi Andy,

Could you please look it up and reply? Sorry, if i am bothering you too much but i am just curious about hbf 0?

Bye
Kiya

Hi kiya

Because your husband is not a thal minor, he does not have HB F. Fetal hb only appears in the presence of thal (minor through major) and that is why having it present is used as a marker to diagnose thal

Fetal hb should not be found in the body at all, but because in thal there is shortage of adult hb, the body starts switching on the gene responsible for producing fetal hb ( kind of defense mechanism) in order to compensate and help raise the total hb level

So there is nothing to worry about

Manal

I actually think the low HbF is probably a good sign, because it shows the body isn't stressed enough to turn the gamma gene back on.

Thanks Andy,

Your comments increased our hopes for better reports next time. Can you send us a link to some website where we can find this entire literature about hb behaviour from pre natal to post birth stage? ...I mean if you have it easily.

Thanks
Kiya

Kiya,

Perhaps this link will help:

http://sickle.bwh.harvard.edu/hbsynthesis.html

Thanks Sharmin,

Though i don't have a biology background, but tried to make some meaning out of the link....

Thanks again
Kiya

I had trouble finding this file, but it suddenly appeared in front of me today. I have just posted with a pdf attachment, Anemia in Children Including Table of Normal Indices, at http://www.thalassemiapatientsandfriends.com/index.php/topic,4087.msg40654.html#msg40654

Table 3 shows normal blood indices from 26 weeks gestation until adulthood. This is a very useful guide when dealing with any type of anemia.